AUTISM NORTHERN IRELAND

A reminder to parents - the 'cuts' and abuse of our children

2012-01-19T03:08:00.000-08:00

I am posting a very disturbing 2009 youtube video (below) illustrating what can and does happen to children who are vulnerable and who are at the mercy of untrained adult 'professionals' at school. Many children continue to suffer whilst in the care of so-called teachers who are paid with public funds to teach and protect our children. Make no mistake, the incident illustrated in the video below is not isolated, it's one of hundreds that go on every year in countries like the U.S., Canada and the UK. Abuse of children who have autism and who may be vulnerable, is perpetrated by teachers, parents, childminders and potentially any one else who comes into contact with children.

The video below, and the others that follow illustrate the need for you, the parent, to be vigilant regarding your child's safety, both at home, on the street and at school. Abuse of our children in school settings does happen. Understanding autism does not happen magically, unless of course you are a person who has autism yourself.

Training of professionals in how our children think, react, adjust and learn is crucial. Training requires time and money. Sufficient money is not being provided to schools for training much less for appropriate support.

The little boy in the video below bears the brunt of this 'teacher's' ignorance and abuse. He can't say stop. Her wages could have been better spent on providing this child a program of self advocacy and communication strategies. Clearly he is a child who needed such a program considering the abuse he was subjected to.
http://www.youtube.com/atch?v=1GyW-jsuCbU

Info on this case: http://www.wtae.com/news/20531472/detail.html

In the youtube video below, a Kentucky pupil with autism was stuffed into duffel bag, which his teacher described as his 'therapy.' (November 2011)

link to youtube video: http://www.youtube.com/watch?v=_91YrWfvVcc

The financial cuts to the health and education systems here in Northern Ireland will impact negatively for our children - your children may not be receiving the support they require and their educational needs may not be met or ignored in the interests of saving money.

Teachers can mete out abuse just like anyone else. There is no excuse for the abuse and contempt by the teacher in the video I posted above. for her student. I do wonder, however, what training she received regarding autism. I also do wonder, what it would take for another teacher to resort to such abuse in the face of no training and/or support regarding autism. How much does it take for any particular teacher, afraid of losing their job to 'lose' it?

Teachers are going to pushed farther than they ever have before in the coming years. No one can predict how far a person can be 'pushed', or what that might look like. I fear for our children who will be taught by teachers and in schools where stress levels are inordinately high. I fear for parents too, who seek support and who cannot find any.

Statements of Special Educational Need are being drastically cut as are services and monies for disability in general. Diagnosis of autism is becoming more and more difficult to obtain, with many parents being told their children do not 'meet' the criteria for a diagnosis. The services that follow a diagnosis of autism cost money. To save that money, the state has a failsafe measure for that - don't diagnose!

Many of your children who you suspect or know have autism will not receive a diagnosis and consequently will not receive the assistance they need and are entitled to. Furthermore, as parents, you will have great difficulty 'convincing' your child's teachers and schools that your child has educational needs that are specific, unless your child has that diagnosis. It's a catch 22 situation.

Thanks to Bamford, however, (see link below) you can see what your child might be looking forward to once s/he turns 18. After years of inadequate education and societal exclusion, your child can live the rest of his days in a brand spanking new residential care home.

http://www.colerainetimes.co.uk/community/official_opening_of_priory_complex_1_3432622

Many people make money off of autism, one way or another. Whether or not your child learns in school, your child is a cash cow for someone else, a chance to make a few quid. Your child is in school for a very short time compared to the rest of his or her life. What happens afterwards becomes your and your child's problem, not the school's. Isn't it great that we have care homes and facilities to 'clean-up' where the educational system fails?

Is your child having problems at school? In these times of financial cut backs, it might be a good idea to take a walk around your child's school during the day to see if your child's school is up to scratch, to see if there are any niggling problems that you can address. Talk to other parents. Join support groups to find out what is going on at your child's school and in your own community. (choose your group carefully, many of them simply pay lip service to the status quo).

Never take the school's word for it, that your child is happy or that s/he is learning. Further, if your child is unhappy find out the reason for this too. Never accept that your child's unhappiness at school is down to self esteem problems or problems that may be occurring at 'home'. Schools rarely accept responsibility for their pupils' unhappiness or academic failure.

Most of all, teach your child how to advocate for himself. If something negative happens at school, if your child's dignity is threatened or he is neglected or abused, how will you find out about it if the perpetrator is able to conceal what they have done, or if teachers don't 'tell'? What if your child cannot verbally express himself about what happened?

Ask your child's friends how s/he is getting on at school, or ask the parents of other children at your child's school if they know anything about why your child might be unhappy.

Incidents like this: http://www.dailymail.co.uk/news/article-2090397/Kaleb-Kula-Shocking-video-autistic-boy-11-beaten-school-bus-stop.html happen just outside school gates. Schools permit bullying when they do not address it appropriately in the school. The shocking behaviour of these children coupled with the equally horrendous assault by the teacher against her pupil in the first video above shows quite clearly that schools and anything to do with 'school' (i.e. other pupils and even teachers) has the potential to harm your child if you are not vigilant.

The bullying of this 6th grade boy in the above article (the video is so shocking it's been removed from youtube) had been happening since he was in 1st grade (6 yrs) and the school did nothing to stop it. (more on that story here: http://baltimore.cbslocal.com/2012/01/23/video-of-autistic-kids-attack-posted-on-facebook/

In 2012 in Northern Ireland, many jobs are on the chopping block. Teachers are already being stretched in terms of time and resources and will have a hard time saying no to school boards who insist they take your child into their class. With no accompanying resources or support, it's your child who may inevitably suffer due to lack of funds, support, experience and knowledge on behalf of the school.

Contact local legal rights organisations to find out how to fight for your child's educational rights. (eg: Children's Law Centre, SENAC)

As a parent there is much you can, and may have to do this year to protect your child not only now, but for the future.
2012 has to be the year of 'standing up' for autism.

National Autistic Society in Northern Ireland - Where? Really?

2011-11-25T03:49:00.000-08:00

The National Autistic Society (NAS) in England are set to build yet another specialist school for young people with autism. You can read the story in this link: here

It would be nice if the NAS would do the same for Northern Ireland. The charity exists here, it has members, it's funded but what they do here, is beyond me.

The charity is currently asking for parents in Northern Ireland to participate in a questionnaire about the education of children who have autism in Northern Ireland. It will be very interesting to find out what their conclusions will be. It will be even more interesting to see if they work cooperatively with the Department of Education to actually do something for our kids. I hope that 'research' will not just be another book-end to gather dust on someone's shelf. Report after report, so what? All this 'reporting' creates jobs, but what does it really do for our children? The state of affairs regarding education of children on the autistic spectrum is still deplorable.

We need teachers to teach our children who have expertise, and who have access to specialised, evidence based training.

Our children who have special educational needs require their academic outcomes to be measured against children who do not have those needs.

We have no way of tracking their achievement or knowing what they actually need if we don't compare to the rest of the pupil population.

We need teaching environments that assist with the teaching of our children, not hinder it. We need to eliminate the segregation of our children into 'special schools' or places that label them further with learning disabilities just because teachers don't know how to teach them and we need to teach to their strengths instead of highlighting their difficulties.

We need access to a developmental and academic curriculum which ALL children must aspire to, one that presumes academic achievement for all.

Most of all we need teachers together in schools who are on the same page about our children, that they are bright, and quite capable of learning if only teachers would aspire to teach them. Put teachers who believe in our children together in a school and what have you got? A school that is great for our kids! Now, that is what I would call a 'special' school.

Well NAS? What about it - it's great that you do so much work in England, but here in Northern Ireland, your charity is a non-player - with very few members and even less political pull.

The NAS here in Northern Ireland takes full advantage of the reputation it has built elsewhere over the past 40 years, but indigenously, very little has been achieved by the NAS, more a talking shop than anything else and certainly not made up of movers or shakers. At least in England the NAS tries to be all things to all people.

Here in Northern Ireland, the NAS is no things to no people. Why do we put up with it?

It is time to force the autism charities into the background. It's the government's duty to educate our children. Voluntaries cannot do this and these charities and voluntary organisations never should have existed in the first place, if the government had been doing their job properly.

Here is an update from the NAS on the what will be happening in the NI based NAS once they hire a new Operations Director: (from the NAS website)

"As part of the ongoing development of services for people with autism and their families, The National Autistic Society has been reveiwing the service offered to families in Northern Ireland. As part of this review we are recruiting an Operations Director whose role will be to develop high-quality pioneering contracted services.

We are committed to growing the range of support and services for people with autism and their families in a sustainable way and this additional senior post will allow us to take advantage of new opportunities and to develop and expand our autism services. This strategy builds on the excellent work that has been carried by our team in Northern Ireland.

We hope that you will continue to support us as we endeavour to develop and grow autism services in this difficult economic climate.

For more information please contact Shirelle Stewart on 07789 941 239 or Regina Cox on 07766 247 817"

Hmm, what that says to me is that the NAS in Northern Ireland requires command, direction and purpose and for that reason, an Operations Director post has been created to get the organisation sorted out.

Hopefully, this new post has been filled by a parent who has not lost touch with what it is like on the ground, trying to battle for an appropriate education for a child or services and support.

Autism NI - Show me the Money - all £400,000 of it

2011-11-12T02:48:00.000-08:00

In August I wrote an open letter to Autism NI ( see here ).

Since then, I have discovered, thanks to another parent, that AutismNI, as of May this year has/had almost £400,000 in their possession.

I asked the charity what it was doing for families and individuals with autism and why it retains so many paid staff, many of whom do not appear to have any direct association with families or persons with autism (fundraisers/administrators).

Anyway, next time you are feeling a bit altruistic when Autism NI or any other of the 'big' autism charities comes calling for your coppers, please ask what your money is being used for - ask what services are being provided, what challenges to the system are being made for the betterment of individuals and families who live with autism.

Why are you (the unsuspecting public) 'Just Giving' and giving and GIVING to AutismNI's fundraisers (see below) when they have almost £400,000? http://www.justgiving.com/autismni

See for yourself below, Autism NI's annual report for 2010/11 (anyone can access this information from Companies House) as well as a list of staff members. The charity's net liabilities are very small and I believe their premises are rent free.

What could £400,000 do for our children?

Our Staff

see here for Charities Commission for Northern Ireland (guidance notes for charities)

Boy with Dyslexia lodges Judicial Review against ELB failure to meet need

2011-10-18T13:58:00.000-07:00

BBC News

18 October 2011

The High Court heard that nearly 70 children within the education board are in a similar situation to the dyslexic boy

A nine-year-old dyslexic boy has won the right to challenge his lack of direct access to a specialist literacy teacher.

The boy was granted leave to seek a judicial review at the High Court on Tuesday.

Judge Mr Justice Treacy heard that nearly 70 other children within the South Eastern Education and Library Board are in the same situation.

The boy, who is from the greater Belfast area, cannot be named.

He is one of 400 children in the education board area that requires external help with literacy problems.

The boy can only spell words of two to three letters, although, he has been assessed as being of average intelligence or cognitive ability.

Mr Justice Treacy said: "The issue is of some importance and also there is a degree of urgency.

"If the applicant is right it could have very serious consequences for the applicant and indeed for other children who may be in the same position."

Psychological harm

Rachel Hogan of the Children's Law Centre said: "The consequences for a child like this are very, very severe.

"It's not just about reading and writing and how they learn.

"They feel different from their peers and they would often suffer emotional and psychological harm as a result of this."

The legal challenge, taken in the boy's name by his mother, is seeking to judicially review the decision not to allocate direct teaching support on the basis of his needs.

It claims the board failed to consider its statutory duty and to provide early intervention support, and was motivated by a desire to save resources.

Mr Justice Treacy granted leave to apply for a judicial review on the basis that an arguable case had been established on all grounds of challenge.

The case will proceed to a full hearing next month.

SIMPLE STEPS & Parent's Education as Autism Therapists (PEAT) Reaching out to Europe

2011-10-17T23:44:00.000-07:00

It is commendable that the SIMPLE STEPS ABA dvd developed in conjunction with the ABA charity PEAT, is going to be made available to Portugal thanks to Invest NI funding.

In Northern Ireland, however, Applied Behaviour Analyis continues to remains stigmatised and even demonised, generally restricted to parents who have the money to pay for the Consultants and Therapists required to run a program.

Maybe the Education and Health Departments in Portugal are more progressive in their thinking and the DVD will open up debate about universal provision of ABA to all children and families. I hope so.

Perhaps the DVD can be used like an Australian boomerang - see what it catches on the way back.

In the meantime though, I believe all parents in Northern Ireland should have free access to it. Pity it had to be developed as proprietary software. Education and Library Boards, can you provide funding to any parent who wants to buy the DVD?

C'mon what do you say - shuffle off your preconceived ideas and see what might happen!

Invest NI

Northern Ireland innovation wins first export business in Portugal

Picture by Michael Cooper

Pictured (L-R) are Prof Lester Manley, Chairman and Chief Executive of Simple Steps, with Stephen Wightman of Invest NI and Dr Tony Byrne, Chairman of Parents’ Education as Autism Therapists (PEAT).

Belfast-based Simple Steps has won business in Portugal for pioneering multimedia technology, developed with assistance from Invest Northern Ireland, to help the parents of children on the autistic spectrum.

Simple Steps is investing over £140,000 in developing the world’s first parent-led, interactive online teaching-tool that enables parents to harness Applied Behaviour Analysis (ABA), a scientifically validated treatment for autism which is effective in improving behaviour.

The technology is now being made available to parents in Portugal through a contract with My Kid Up - Centro de Intervencao Comportamental of Morada, near Lisbon. They will be able to access a Portuguese language website that Simple Steps is developing and use ABA techniques to become ‘parent therapists’. This is the first non-English version of Simple Step’s website but the company plans to introduce Simple Steps in all of the main European languages.

Invest NI has provided assistance to enable the company to develop and market the innovative technology in international markets.

The contract was announced by Prof Lester Manley, Chairman and Chief Executive of Simple Steps, and welcomed by Stephen Wightman, Invest NI’s Acting Director of Life Sciences and Creative Industries.

Mr Wightman said: “Simple Steps is positioning itself as a global leader in behavioural change and is applying the latest digital technology to achieve this strategic objective.

“This is an innovation-led company with significant expertise in multimedia systems through Prof Manley’s successful track record in communications and marketing, and also in Applied Behaviour Analysis from its relationship with Prof Mickey Keenan from the University of Ulster and the Parents’ Education as Autism Therapists (PEAT), a Northern Ireland charity that works with parents of children with the condition.

“Our support is geared to assist this technology-led business to realise its business potential in key international markets particularly in the US and Europe. Opportunities have also been identified that will enable the company to use its pioneering technology to help parents of children with other behavioural conditions,” he added.

Dr Tony Byrne, chairman of PEAT, said: “Our technology-driven solution is aimed at the parents of children, primarily under nine, who have been diagnosed or are awaiting a diagnosis of autism. It offers them access to a variety of assistance that includes an internet site, a CD/DVD and a hard copy guide on how to use ABA techniques creatively to help children.”

Prof Manley said: “We believe that our easy to access solution, an online platform, can significantly help parents transform the lives of millions of children worldwide and will help to establish Northern Ireland as a centre of excellence in the application of digital technology for behavioural analysis and therapy. It’s an accessible, affordable and sustainable solution.

“The technology has been developed with the objective of assisting children with autism to realise their full potential. Parents can afford to access multimedia resources that include dynamic teaching animations, e-learning systems and through the creation of an online community to become parent-therapists. This means they can develop knowledge and skills to make a greater and more effective contribution to the development of children.”
14.10.2011

More on that story can be found here Belfast Telegraph 17 October 2011

Exploitation of Parents (Autism)

2011-10-14T23:42:00.000-07:00

Leading on from a previous entry in this blog see here, and also here . I would like to let you know about a great article tackling the exploitation of parents whose children have autism. The article has an American author but the issues are universal.

The link to the article below is here and I think it's a must read for every parent, particularly parents who are new to the diagnosis of autism. Very few parents will not have succumbed to the feelings and anxieties illustrated below and I think it's a safe bet that denial of the illustrated emotions is common. I have noted in red those points that are of particular relevance to recently discussed issues in this blog. Using ABA to examine the behaviours of ABA consultants and parents alike would be an interesting study - any takers?

EXPLOITATION: BEWARE OF THE PARENT'S TRAP

Exploitation is the taking advantage of parents who are vulnerable and willing to do whatever it takes to "cure" their children who have autism, Asperger's syndrome or other special needs.

What makes parents vulnerable to being exploited?

When parents are often in shock and denial about their child's disorder and delays, they can lapse into magical and fantasy thinking and seek a cure or "silver bullet" to make their children "normal." This makes them very vulnerable to offers of help from professionals who claim to have the magical touch, or miracle cure to help make their children better, cured or healed. These parents are unfortunately often willing to pay whatever it takes to get the magical cure to make all things right for their child.

What do vulnerable parents look like?

Vulnerable parents may engage in a number of the following activities:

Spend whatever it takes

There is a willingness to spend whatever it takes to get the "best" treatments, doctors, therapists, programs, schools etc to "fix" or "cure" their child.

Doctor shopping

Looking for just the right doctor, therapist, teacher, program which will make things better for their child.

Blame the doctor

Fighting with the child's treating professionals because the child is not progressing at the rate which the parents had hoped the child would progress given the "hope and promises" provided by the professional or program.

Doctor buying

Offering professionals, with "good reputations," sums of money, goods, services etc which will entice the professional to get involved with their child.

Shoot the doctor

Walking away from the "messenger bearing" professionals who give the "bad news" concerning the developmental disorder because it is "too much" to emotionally absorb and seeking out professionals who will have more "positive" or "optimistic news" to give them about their child.

Guilt-induced hyperactivity

Getting so absorbed in the "treatment" of their child that they have little or no personal time, for fear that their child will not progress or regress if they do not dedicate themselves 150% to the curing and healing of their child.

What does exploitation look like?

Parents who are being exploited often experience one or more of the following behaviors from the professionals who are treating their children.

Dual relationship with parents

Professionals are in many states legally and in all cases ethically not supposed to personally benefit financially or business wise from involvement with the parents of children who are or have been under their professional care. Examples of this could include parents giving money, over and above the professional fees being charged to provide the services to the child, directly to the professional or indirectly by paying a third party associate of the professional. This third party could either be related to or involved in a business dealings with the professional. Parents might lend money to the professional or enter into a business relationship or partnership with a professional or a professional's associate, such as buying a house or car from the professional, opening a new company or business with the professional.

The Golden bullet promises

This mean that the professional presents parents with false, deceptive, or misleading advertising and promises that their specialized treatment is the "Key" to a cure for their children. In many states this is illegal and in all cases it is unethical. A sample state statute for Licensed Psychologists in Florida states: 64B19-17.002(d) False, deceptive, or misleading advertising or obtaining a fee or other thing of value upon the licensee's representation that beneficial results from any treatment will be guaranteed.

Inordinate lifestyle change

This means that parents being encouraged to make radical changes in their current family life so that child can receive the services of the professional. This could involve the family being uprooted and moved to where the "desired" professional or program is located, or taking on second jobs or loans to afford the services of the "desired" professional or program. It could also involve a professional encouraging a family to completely disrupt their normal family cycle or routine to meet the inordinate number of hours of intervention dictated by the "desired" professional or program.

Guilt letting of parents

This means the professional plays on the guilt of the parents to manipulate the parent to go to "extraordinary efforts" to "fix" their child. This is illegal in many countries and is unethical in all cases. It involves inappropriate representation of the "power" of the treatment being offered the child. Hints of this include making the parents think and feel that no matter what they do for their child is "never good enough," "done well enough," or "sophisticated enough" to "fix" the child. A professional may suggest that parents can never spend "too much money," "too much time," or "too many personal or physical resources" on their child in order to "fix" the child, or convince the parents that only this one particular professional or program is "right" of their child and that they would be doing irreparable harm to their child if they changed professional or program for their child.

Blaming the parents

This means the professional blames the parents, if the child is not making substantial developmental progress. The professional does not appropriately inform the parent that each child is different (principle of individual differences) and that there is no predictable pattern to expect in the progress a child will make as a result of being involved in the therapeutic process.

It might involve embarrassing and humiliating parents verbally and non-verbally by blaming them for the fact that their child is not progressing or changing quick enough or substantially enough. The message given in this case is that "of course it is not the fault of treatment offered by the professional" but rather the lack of extensive follow through on the part of the parent that explains the lack of progress. REALITY is - due to individual differences, the child is not be progressing. This might be due to being on a developmental plateau or because the prescribed treatment does not work with this child like it does with others.

Gouging the parents

This means the professional charges exorbitant fees for services and treatments. These fees are typically not customary or ordinary in the professional's respective professional field. It could involve taking advantage of the shortage of trained professionals or shortage of the desired medication or treatment in a community and therefore charging sometimes-double, triple and in few cases eight times as much as what the service or treatment would ordinarily cost.

What do you do, if you think you are being exploited?

If you feel you are being exploited by any of the professionals involved in working with your child, first confront the professional and ask for such exploitation to cease. Second: if the professional continues to be exploitive then contact the professional's respective professional association or state licensing or certifying board and file a complaint.

Principles of Ethics for Medical, Therapeutic and Developmental Specialists Who Work with Children with Special Needs

Professionals serving children with communications and learning disorders will embrace the children’s welfare as their primary professional responsibility. Professionals will respond promptly and expertly, without prejudice or partiality to the needs of these children and their families.

Professionals will respect the rights and strive to protect the best interest of these children whose parents are vulnerable due to their emotional state of shock, loss, and grief and as such often have a diminished decision making capacity and thus are impeded in making appropriate treatment choices.

Professionals will communicate truthfully with parents and secure their informed consent for treatment. They will protect families’ privacy and disclose confidential information only with consent of the parents when required by an overriding duty to protect others or to obey the law.

Professionals will deal fairly and honestly with colleagues and take appropriate action to protect these children and their families from health care and developmental interventionists who are impaired, incompetent, or who engage in fraud or deception.

Professionals will work cooperatively with others who care for these children and their families and also advocate on behalf of these children and their parents with any third party payer (insurance company, HMO, state agency, or school system) to insure that all appropriate and needed therapies, treatments, and programming are provided and reimbursed.

Professionals will engage in continuing study to maintain the knowledge and skills necessary to provide high quality care for children with communication and learning disorders and their families, and act as responsible stewards of the health and developmental care resources entrusted to them.

Professionals will support societal efforts to improve public health and safety, reduce the effects of developmental communication and learning disorders, and secure access to appropriate early intervention and other treatment services for children with communications and learning disorders no matter how severe or minor their disorders may be.

closing thoughts

Dr. Mark Rosenbloom the founder and President of the Unicorn Children's Foundation, at the November 1998 ICDL Conference, gave a heart rendering plea for the end and prevention of the exploitation of parents of children with communication and learning disorders. Dr Rosenbloom shared with the audience the following Physician's Prayer that eloquently emphasizes the type of spirit and attitude, which parents ought to be able to expect of the professionals who are involved in working with their children.

The physician's prayer

Supreme God in heaven — Before I begin my holy work to heal the human beings whom Your hands formed. I pour out my entreaty before Your throne of glory, that You grant me the strength of spirit and great courage to do my work faithfully, and that the ambitions to amass riches or goodness shall not blind my eyes from seeing rightly. Give me the merit to regard every suffering person who comes to ask my advice as a human being, without any distinction between rich and poor, friend and foe, good person and bad. When a person is in distress show me only the human being. If physicians with greater understanding, give me the desire to learn from them, because there is no limit to the learning of medicine. But when fools insult me, I pray: Let my love of the profession strengthen my spirit without any regard for the advanced age of the scorners and their prestige. Let the truth alone be a lamp to my feet for every yielding in my profession can lead to perdition or illness for a human being whom your hands formed. I pray You, compassionate and gracious Lord, strengthen and fortify me in body and soul, and implant an intact spirit within me.

From the writings of Rabbi Moshe ben Maimon

Coping.org is a Public Service of James J. Messina, Ph.D. & Constance M. Messina, Ph.D., Email: jjmess@tampabay.rr.com ©1999-2007 James J. Messina, Ph.D. & Constance Messina, Ph.D. Note: Original materials on this site may be reproduced for your personal, educational, or noncommercial use as long as you credit the authors and website.

The author of the website goes on to explain why the website was developed:

This site was developed by an Australian social worker as he was concerned that many autism and Asperger's syndrome associations were opting to sell their information instead of providing it freely. The philosophy of this website is that most parents are struggling financially to pay for interventions, and information from 'support services' should not be charging for their support, even if their government funding is marginal.

Although there are many websites dealing with Autism Spectrum Disorders, there are few that have developed a comprehensive range of free fact sheets to provide practical information and strategies, both for people with autism or Asperger syndrome, and their families, carers, teachers, employers and the wider community. (http://www.autism-help.org/forums-links-autistic-spectrum.htm)

Knockmore School Lisburn - to close

2011-10-14T02:49:00.000-07:00

Parents in Lisburn were shocked yesterday when they were told their children's school, Knockmore PS will be closed as part of the Department of Education's plan to save money by closing schools.

Knockmore has a great reputation in working with children on the autistic spectrum, with 50% of children in the specialised units going on to mainstream without the need for additional support.

And the fun begins.

http://www.belfasttelegraph.co.uk/news/education/parents-dismay-as-school-hailed-for-teaching-special-needs-pupils-faces-closure-16062031.html

Parents' dismay as school hailed for teaching special needs pupils faces closure

By Lindsay Fergus
Tuesday, 11 October 2011

A school highly praised for its work with special educational needs (Sen) pupils has been told it is facing closure.

Devastated parents whose children attend Knockmore Primary School in Lisburn were told the shock news by officials from the South Eastern Education and Library Board (SEELB) yesterday.
One in three children who attend the mainstream school are catered for in its special unit, which had to expand down the years due to increased demand.
Sybil Skelton from the SEELB told furious parents that if the school closed “the board will relocate the special needs children”.
But she couldn’t tell concerned parents, many of children with autism or speech difficulties, where, or even what type of school, they would be transferred to.
Its latest inspection report in January said Knockmore boasted:

159 pupils (above that set out in the Sustainable Schools Policy).
Increased enrolment — up from 149 in 2008/09 and 157 in 2009/10.
Good quality of education.
A very good provision for special educational needs.
l Across the social and communication unit (SCU) and speech and language unit (SLU) the quality of provision is very good.

But the SEELB claims the school is unviable in terms of pupil numbers — if children being supported in the special units are not taken into consideration.
That argument met with outright fury from anxious parents. Many have children who began in the special unit and transferred to mainstream classes.
The Belfast Telegraph can reveal that Knockmore has no financial problems. It is also currently “in surplus”, meaning it meets all the criteria outlined by the Education Minister for a viable school — pupil numbers, quality of education and finances. In terms of enrolment, there are 58 schools in the SEELB’s area with the same or fewer pupil numbers.
As the bad news was delivered by officials, it emerged that Knockmore has been waiting 15 years for new windows and 10 years for replacement toilets. When quizzed by parents about the lack of investment in the school, Mrs Skelton admitted: “There may be some issues in terms of fabric.”
The SEELB needs to invest £283,226 in maintenance at the 41-year-old school, according to figures obtained under Freedom of Information (FoI).
Some parents of the 66 pupils supported within the special units are concerned about how disruption will impact on their vulnerable children.
Sharon Marston (below), whose autistic son Kyle attends Knockmore, is just one of them.
She said: “My son has autism and he needs routine and does not react well to change. He is very settled at Knockmore. If they closed this school down it will be absolutely terrible.”
The inspection report showed 11.8% of Knockmore’s pupils have statements of special educational needs — well above the Northern Ireland average (4%), and 26.9% are on the special needs register.
“The quality of teaching in almost all the lessons observed in the mainstream classes and in the SCU and SLU was good or very good; in a small number of the lessons, it was outstanding,” said inspectors.
“In the SCU and SLU, the teachers’ joint sessions with the speech and language therapists are a very good feature of the best teaching and provide excellent opportunities for the children to learn together and to develop a sense of achievement.”
Inspectors noted: “There is a very good exchange of professional expertise between the teachers in the SCU and the SLU and the mainstream school.”
The report stated that approximately 50% of children in the two units transfer to mainstream education and require no additional or specialist support.
Knockmore’s first speech and language unit opened in September 1990, followed by a second in 1993. In 2002 a further two units opened and in 2005 a new specialist unit catering for children on the autistic spectrum also opened.
Stormont education committee member, Lagan Valley MLA Jonathan Craig, has already raised the matter with Education Minister John O’Dowd.
He said: “Yet again the board has failed to follow its own rules. It has also jumped the gun and is not following the minister's policy for the closure of schools. But what do you expect from a board run by unelected and unaccounted commissioners?”
An SEELB spokesman said the authority to close a school rested with the minister, adding: “On an annual basis the board reviews the provision throughout its area and as appropriate engages with those schools which may be impacted upon by future plans. This scheduled review began prior to the statement from the minister.
“The contents of his statement were neither public nor known to the board in advance of his announcement to the Assembly.”

Story so far

Knockmore Primary School is the fourth school to have been told it is being earmarked for closure.
Dunmurry High, south Belfast; Redburn Primary, Holywood, and Ballykeigle Primary, on the outskirts of Comber, are also on the SEELB’s hit-list.
So far the SEELB is the only board to have initiated development proposals to close schools ahead of a viability audit of every school ordered by the Education Minister John O’Dowd.
His department has confirmed that the education authorities received the terms of reference for the audit last week.

CEAT - Leaving Northern Ireland?

2011-10-12T13:54:00.000-07:00

I have heard on the grapevine and also from commenters to this blog that the Northern Ireland based ABA company CEAT (Centre for Early Autism Treatment) located in Belfast will be considering departing soon from Northern Ireland (or rather the proprietors of CEAT are leaving, i.e. Mary Hopton Smith and Kimberly Wroblewski.)

Apparently, they are both moving to Wisconsin USA. It has been intimated to me that the company will remain in existence and managed by others who will be staying here. There is room in Northern Ireland for many ABA providers, and I hope that we will see professional consultants find their way to the province soon.

For all those parents, however, who complained to this blog, so vociferously in the past about CEAT, their prices, their 'attitude', their lack of efficacy and the rest - can I make a suggestion to you all? Don't moan to me - let your feet do the talking - the next time any sort of organisation that purports to be helping your child comes around, don't believe what they say but rather ask for a money back guarantee and do your own research about who they are, what they are and whether or not you even need them. Using an ABA provider usually involves a financial transaction and buying ABA should at least involve the same precautions that you would take when buying a pair of shoes - you have to ask yourself can you really afford them, can you get them cheaper elsewhere,do they fit, will they last, can you return them if they fall apart and is there an extended guarantee?

In general where ABA is concerned don't be 'blinded' by what someone else attributes to 'science' or taken in by a sweet talking autism 'know it all'. Case in point are the classroom aides, teachers, educational psychologists, speech therapists and OT's who think they know more than you do and can help your child even better than you can. ABA is only as good as your provider (or you) make it. I don't know what it is about autism but as parents we sometimes continue to believe anyone who promises us 'hope' for our child. Why is it that our 'hope' for our kids often has to emanate from others first? Why isn't our hope and aspiration for our kids built-in, and rock solid? Why do we look to others to give us hope and end up paying through the nose for the pleasure?

I hope that very soon ABA will be a household word in the autism community and I do hope that it will be readily available and fully accepted as a practical, effective, reasonably priced and common treatment for autism, one that will be provided to every family for free.

In the meantime, however, your child's future lies with you, it's you that has to do the day to day work on the ground, on your knees with your child, not a highly paid autism consultant. Any ABA consultant worth their salt will ensure that you are trained and experienced in carrying out the ABA program. Your parental role can never be substituted by a paid ABA consultant or 'therapist'. Your child's learning mostly takes place in the home with you and the rest of your family. Any parent can be trained how to develop, and use an ABA program in the home and this is the most important thing that any ABA consultant can and should do for you. If they don't, there are serious questions to ask.

I have said before that ABA is not rocket science. It also should not cost a 2nd mortgage. Before you sign a contract with an ABA provider, and before you sign a cheque, demand to know that the ABA provider has a successful track record, that they are going to train you and your family in using the program, that they will take the time to know your child's needs, personality and also the needs of your family. When it comes to ABA there are fully qualified ABA therapists and consultant level providers all over Northern Ireland and in the south of Ireland.

To parents - contact the ABA charity PEAT which is located in Northern Ireland. PEAT consists of parents who are using ABA and have learned how to use it with their children. Ask them for help. Don't put up with shoddy services or useless 'support' groups that promise visual schedules will 'help' or cure your child's autism - stand up for yourselves and demand what you want. If you don't know what you want, figure it out. If you can't get it, create it yourself. If you don't, you may be taken advantage of, not just regarding ABA but anything classed as a 'treatment' for autism.

If you want to pay £400-500 per day for an ABA consultation that's your business but know that you don't have to. ABA is as much about good parenting as it is about the science of behaviour and you can learn it. ABA is there for anyone to learn. In fact, if you want to learn it, there are many parents out there who can teach you - have you asked around to find out who those parents might be? Contact PEAT (http://www.peatni.org/). Personally, I like this organisation, it's run by and for parents and they don't cost the earth.

No one should have to pay £20,000 - 30,000 or even 40,000 per year for an ABA program. We all pay into a universal health service so that we can dip into it when we most need it. Currently in the UK that is our right. ABA, if it has efficacy, should be on the menu so to speak, for your child, my child and all children with autism for free.

To all the parents out there paying exorbitant costs to run ABA programs, will you want to run similarly expensive programs for your future children who might have autism? Do you want your nieces and nephews, friends and colleagues to have to pay the kind of price you are paying now?

If we start thinking in Northern Ireland about ALL the children who have autism and what is best for them, and not just our own children with their own personal and privately paid for ABA programs, perhaps we would be a lot better off. If you who have private ABA programs think ABA is so wonderful why do you keep it to yourselves? Would you be willing to share your time to lobby the government so that a child whose parents couldn't possibly afford it, gets it? Or is it just about you and your child? As long as ABA remains in the private sector (because you continue to privately pay for it) how will it ever enter the public arena? Does your private provider do any lobbying? Have they put together a fund to help less fortunate families? Do they avail of the substantial subsidies that are available UK wide to help families?

On that note the Caudwell Children's Trust in England is now funding ABA in Northern Ireland and I suggest that parents contact them to enquire how they can avail of the funding.

Isn't this a case where thinking about someone else's child and demanding that someone elses' child gets effective autism treatment (just like you are paying for now) might actually benefit your child and others, in the long run? What is it like for other families who cannot afford ABA to listen to an 'ABA family' wax lyrical about their Mercedes whilst that family will never even obtain a driver's licence? This is not an attack on those who can afford to pay for private ABA. Parents do what they can to help their children. Parents, however, who 2nd mortgage their homes, borrow from family members, climb Kiliminjaro, etc to raise funds should not have to. If ABA is so wonderful, it should be funded by the state.

Where ABA is concerned, money talks. For those who say different, you are fooling yourselves. What do we need to do in Northern Ireland to ensure that all families who want ABA get it and that they receive it for free?

An Open Letter to AUTISM NI

2011-08-26T02:18:00.000-07:00

To: Autism NI

For the attention of Ms Arlene Cassidy, CEO

Dear Ms Cassidy

Re: Autism NI - A Cost Benefit Analysis ?

I refer to the above and note from my own calculations from your website (http://www.autismni.org/our-staff--board.html) that at least 15 paid staff are retained in your organisation.

From my calculation it appears that only four of those members would actually have any responsibility delivering services to parents and/or families. The majority of staff, as indicated by their job title appear to be fundraisers, administrators and event managers/lobbyists.

I would be grateful if you could explain the rationale of retaining such a large fundraising and administrative staff. I note from the website that Family Services provided by the charity together with other programs/services are extremely limited if non-existent. The ratio of staff to service provision within AutismNI seems inordinately top heavy compared to other organisations who provide similar services in Northern Ireland. Very few charities in Northern Ireland would have AutismNI's administrative budget to pay these individuals' salaries, much less anything else.

Until the charities commission permits Freedom of Information requests to be pursued against charities, we the public will never really know what AutismNI receives in donations/government funding. In the interest of being transparent to your suppporters, however, I am sure you will agree that you should publish the charity's annual report on the website for the last fiscal year. Unlike the year 2009/2010, those accounts should be published in a way that is actually decipherable by the human eye.

My guesstimate is that together with your own salary which I presume is in the £50-60,000 per annum mark together with the combined salaries of your other staff members (including your parent liaison workers who probably make the going rate of minimum wage and or just above), the total amount in wages that the charity pays out per year is approximately £330,000 - £350,000. That estimate includes the potential payment of any wages to the Charity's President, David Heatley and the potential payment of services to one of your government lobbyists Eileen Bell. I don't know if the charity pays these people.

Can you explain what benefit is derived by families living with autism, considering the above estimated cost in salaries? Do you really need 15 plus staff to deliver almost no services? There are 10 charities that work directly with autism in Northern Ireland of which AutismNI is only one. There are a mulitude of other 3rd sector organisations that work directly and indirectly with persons who have autism, many of which do not have anywhere near the funding you have but who deliver a variety of regular and much needed services. What cost benefit is derived from the outlay of salary payment to so many staff?

I note last month (here: http://www.impartialreporter.com/news/roundup/articles/2011/07/28/394125-autism-charity-contract-terminated-by-trust-without-warning/) one of AutismNI's contracts in the Western Health Trust was terminated recently, 'out of the blue' as quoted by your staff member Paula Hanratty. The article states that "Autism NI had, over the years, secured and invested nearly £550,000 additional funding into the Trust area to meet the needs of families affected by ASD." With this contract and others now terminated, it is difficult to know exactly what Autism NI does. Your website states that the charity has scores of support groups, many if not most of which operate themselves with parental administration. They do not require 15 of your staff to run them as I presume they run themselves and carry out their own fundraising. Some of these 'groups' consist only of a few parents around a kitchen table, and are in fact 'support groups' in name only.

I would be interested to have your clarification of the comment above relating to the £550,000 investment by AutismNI into the Western area Trust. I believe that AutismNI acted as a conduit in this area, of government monies. The comment implies that AutismNI 'raised' its own monies. I think it would be more fair to say that the charity used publicly funded contract monies and re-invested them in the area. The money came from the government - Autisim NI simply spread it around. Would that be correct? The 'jobs' referred to, that were lost because of those cuts - could you clarify how much those 'jobs' paid? I note from the past that job descriptions emanating from AutismNI offered to pay parent liaison workers the minimum wage.

With the public purse being tightened, government contracts for services must now generally be carried out through a bidding process. AutismNI's contract was terminated because the Western Trust believed it could provide better services than AutismNI could do. I also believe parents are demanding more from charities who purport to be 'helping' them.

Looking at AutismNI's website, I fear that parents are not getting the kind of help they need and certainly not help that is current or research based. I believe that despite the charities 15 staff members that AutismNI's helpline number is only open a few hours a week. Could you outline the number of hours of real face to face contact both you and other staff members have with children and families who live with autism? How many parents does the charity refer onwards to other organisations? Does the charity keep records of this? If so perhaps we the public could see these statistics. I should add that parents I know who have contacted AutismNI have been told to go to other charities and voluntaries or simply do not have their phone calls answered. Could you advise what those 15 staff members do during their day?

Two parent friends of mine have asked me to publicise their 'experience' with Autism NI. They both have young children with ASD and both of them had to seek help elsewhere than Autism NI because the charity could not help them and they were referred onwards. I told them I would wait for your response to this letter.

An immediate publication of AutismNI's annual report outlining it's funding and expenditure for the past year is well overdue. Please publish this on your website.

I and I am sure others would like to know and understand what AutismNI, as a charity, spends its money on. I presume that the charity developed and spent money on its new website to indicate to parents and individuals with autism the services and advice it provides to them. After looking at the website it does not appear that much if anything is being provided by AutismNI particularly in light of the number of paid staff it retains. Cancelled contracts in the Western Trust together with other funding being pulled across the North begs the question what AutismNI as a charity actually delivers, particularly in context of it retaining so many staff members, all of whom must be paid.

There are strict guidelines that will soon be set in place by the NI Charities Commission. There is a distinct line between a charity and a political lobby group, an explanation that in part, can be seen here from the Charities Commission website: (http://www.charitycommissionni.org.uk/Charity_requirements_guidance/Your_charitys_activities/Campaigning/Guidance_on_campaigning_and_political_activities.aspx#l2)

"D3. Can a charity have a political purpose?
The short answer
A charity cannot have a political purpose. Nor can a charity undertake political activity that is not relevant to, and does not have a reasonable likelihood of, supporting the charity's charitable purposes.

Whilst a charity cannot have political activity as a purpose, the range of charitable purposes means that, inevitably, there are some purposes (such as the promotion of human rights) which are more likely than others to lead trustees to want to engage in campaigning and political activity. (See section D4 for information on including campaigning and political activity in a governing document.)

In more detail
A charity cannot have political activity as any of its charitable purposes. This is because a charitable purpose should fall within the description of purposes set out in the Charities Act (Northern Ireland) 2008. However, political activity can be carried out by a charity to support the delivery of its charitable purposes. In order to be a charity, an organisation must have purposes which are exclusively charitable and for the public benefit. An organisation with a political purpose, such as promoting a change in the law, legally cannot be a charity. This applies even if the organisation has other purposes which are charitable. This would involve looking at 'political' questions, which neither we nor the courts are in a position to answer. Constitutionally, it is not possible for the Charity Commission for Northern Ireland or the Courts to make decisions about whether a change in the law or Government policy would be for the public benefit. However, organisations which are established to ensure that the law is observed, for example respecting certain fundamental human rights, will not automatically fall within this definition. This is a complex area and in future years we will explore with charities established for the advancement of human rights, the boundaries of this particular charitable purpose in relation to campaigning and political activity."

The fact that AutismNI retains the services of the President Mr David Heatley and Ms Eileen Bell as a political lobbyist is questionable. Mr Heatley and yourself are well known to MLA's and to Stormont as is Ms Bell. Mr Heatley as far as I know does not deliver programs for the benefit of your members or for the wider 'autism' community. As President of AutismNI, is Mr Heatley a paid member of staff. Do you pay Ms Bell a wage for her lobbying services to the charity? How many other members of staff of AutismNI are paid a wage and in what context of providing services to the community? What is your definition of a charity? What provision to families living with autism does the charity currently provide and how much of the charity's budget is fixed for that purpose compared to its administrative costs?

These are questions that should have been asked well before now, and that should be now be answered.

I look forward to your timely response.

AUTISM NORTHERN IRELAND

for further information see : www.fakecharities.org and in particular this page: http://fakecharities.org/database/shelved-reports/ which lists AutismNI as a charity whose reports are not published or whose accounts are not available and/or do not detail its public funding.

Vaccines - Selling Panic

2011-08-02T01:19:00.000-07:00

I found this article (see below) and hope that it will act as a call to action to all parents in Northern Ireland contemplating the vaccination of their children. Be informed and understand the breadth of economic and political meddling that is masked as children's 'health'. Parental refusal of vaccines for their children is met here with derision from many, usually including your child's own GP or paediatrician. Do parents really have a 'choice' not to vaccinate their children, considering the hype, propaganda, guilt and pressure that is heaped upon new parents to do so? I fear that many parents, particularly new parents queue up at their GP's offices without thinking twice about injecting their babies.

Unfortunatley, there won't be a copy of this survey :

http://childhealthsafety.wordpress.com/2011/08/26/new-survey-shows-unvaccinated-children-vastly-healthier-far-lower-rates-of-chronic-conditions-and-autism/

in your local GP's surgery - the survey provides data collected from over 7000 unvaccinated children and shows that they were much more healthy and suffered much less chronic disease than those who were vaccinated.

In the UK whether you want to vaccinate your children or not, the distinct lack of dialogue about vaccinating (we only hear the pro argument) should be alarming. Nothing is so good that it should not be questioned. When it comes to vaccinations, it seems there is not room for discussion, not between you and your doctor anyway.

I would defy you as a parent, to obtain from your GP, the statistics of vaccine injury in the UK. They don't want to know and they certainly don't want you to know. The vaccination schedule is in my opinion dangerous, and for those who care to search, the evidence weighs heavily against such a schedule, but you won't hear about this because no one is looking at 'evidence, preferring instead to rely on emotion and scare mongering. As parents, it's up to you to make decisions about your children's health. Unfortunately, due to continued rhetoric from many sides, parents are making their decisions devoid of the facts.

It would be interesting to hear from parents who have questioned their GP's and nurses about the current vaccination schedules. What responses are being given to parents about the dangers of vaccinations? Considering Northern Ireland has one of if not the highest uptake of MMR vaccinations in the UK, a lot of parental schmoozing must be taking place or else parents simply are not asking questions.

Any parent who vaccinates their child should at least be aware that their child should never be vaccinated if s/he is ill. Second, vaccinations schedules have been known, quite often to be mismanaged, ending up in children who are vaccinated twice with the same vaccination.

Finally, the big question parents clearly are not asking in Northern Ireland or elsewhere for that matter, is why their child's resistance titres can't be tested first, before they get a vaccination. Many children do not need vaccination because they already have natural immunity. Children are being injected with copious amounts of pathogens. We teach our children not to play with fire, but in my view the current vaccination schedule is an inferno and for some very unfortunate children, a pyre.

The article below refers to the profiteering going on within the pharmaceutical company, their dirty marketing practices and also the potential dangers of vaccination based on recorded vaccination injury.
From: http://www.omsj.org/corruption/selling-drugs-as-scholarly-opinion

"In his “opinion piece” published 18 July 2011 by the Los Angeles Times, David Ropeik "calls for new laws, incarceration and economic hardships against parents who refuse to vaccinate their children. To lend credibility, the Times identified Ropeik as “an instructor at Harvard University...

The Times also failed to disclose that Ropeik and his cohorts specialize in “risk communication,” a skill designed to make consumers feel better about products and services that kill and injure more than a million Americans annually. With credentials that once earned him a position as a local TV news reporter, calling Ropeik a “vaccine expert” is akin to calling Capt. Kirk an astrophysicist.

In an opinion both Orwellian and unscientific, Ropeik declares that parents who do not vaccinate are as dangerous as drunk drivers and smokers, but fails to disclose that:

The CDC and vaccine manufacturers pay him, directly or indirectly, to promote their marketing campaigns.
The resurgence of eradicated diseases has arisen in populations that have been more than 95% vaccinated.
Recent outbreaks of common diseases like measles occur in highly vaccinated populations, making the vaccinated population a greater risk to the unvaccinated...

Selling Panic and Hysteria

Ropeik cites “global outbreaks” of measles that have sickened 118 in the US this year, but fails to disclose THOUSANDS of vaccine-related injuries and deaths that are reported to the Vaccine Adverse Event Reporting System (VAERS) every year in the US. He also claims that there is “overwhelming evidence” that vaccines do not cause autism, while the overwhelming evidence produced by independent researchers unaffiliated with the pharmaceutical industry strongly suggests they do.

More than 3,000 new cases of autism were reported in California in 2006, compared with 205 in 1990. In 1990, 6.2 of every 10,000 children born in the state were diagnosed with autism by the age of five, compared with 42.5 in 10,000 born in 2001. The numbers have continued to rise since then.

In fact, vaccines injure and kill so many people each year that parents are no longer allowed to sue vaccine manufacturers in court. Instead, parents must follow special rules and submit claims to special masters. So even if the vaccine doesn’t cripple or kill you, the claims process probably will...

Pertussis reportedly killed 17 Americans in 2000, the same year that vaccines killed or seriously injured 14,153 men, women and children. ...."

(This means that Americans were approximately 830 times more likely to be seriously injured or killed by vaccines than pertussis in 2000.)

" In 2010, CDC reported that ten children were killed by pertussis, the same year that VAERS reported that pertussis vaccines killed 17 children. Although Ropeik’s corporate clients expect that 334 English and Welsh children will spend a few weeks in bed with the measles this year, they will fare better than those who will be permanently crippled from vaccines.""

Nancy T. Banks MD (Harvard Medical School) practiced general obstetrics and gynecology for 25 years and is the author of AIDS, Opium, Diamonds and Empire (2010). Clark Baker served 20 years with the LAPD and is the founder and principal investigator for the Office of Medical & Scientific Justice, Inc.

http://www.omsj.org/corruption/selling-drugs-as-scholarly-opinion

ABA in Northern Ireland - your responses !

2011-07-13T22:44:00.000-07:00

My blog entry regarding ABA(Applied Behavioural Analysis) in Northern Ireland see:(http://autismnorthernireland.blogspot.com/2011/04/aba-science-for-sale-in-free-market.html) has garnered so many responses that they really deserve a blog post of their own. Since my 1 April post regarding ABA, I have had over 20 individuals including families, teachers and international ABA providers who pose serious questions about the role and 'state' of ABA in Northern Ireland.

The very sad, prehistoric and ultimately negative attitudes of some autism charities, educationalists, and other 'professionals' in Northern Ireland who regard our children as 'incurable', or as having a 'lifelong' condition that is genetic and therefore untreatable has created a vacuum that sucks up and disposes anything that might be construed as positive, and ultimately helpful for our children. There seems to be a bit of a conspiracy theory in Northern Ireland regarding ABA resulting in an 'us vs them' battle. Parents and their children are the ultimate losers in this war and no matter what 'camp' a parent is in, neither they or their child will 'win'. It suits private ABA providers to create 'sides' and to create scarcity and a certain 'preciousness' about what they do. Parents are lured to ABA because anything is better than what is currently on offer and there is no doubt that parents will pay for the opportunity of obtaining 'better'. The efficacy of ABA, however, is getting lost in the fighting and in the profiteering.

We have an autism 'industry' that requires our children to remain as 'autistic' as possible, so that cozy jobs can be maintained. It's akin to millions of pounds being spent on trying to educate the public about health, yet having off-licences and pubs on every corner, bad food and cigarettes readily available to most people. I still hear of doctors handing out 'nerve pills' to parents who want them, instead of writing letters on their patients' behalf to MP's and MLA's demanding more support and help.

It's a safe bet that anyone who purports to be working to 'help' children/individuals with autism will currently be making money. Faith healers, drug companies, nutritional supplement companies, ABA providers, TEACCH 'teachers', OT's, SLT's, psychologists, special education advisors, paediatricians...the list goes on, they all are employed, many of them making a very good wage, both privately and publicly funded, and they all are making their money off of our children's autism. Autism is a definite money maker and a job keeper.

Universally, as much as autism is presented as a 'drain' and strain on health services, it is also a cash cow for anyone who can think up a new way (or old way) to dip into the pockets of parents/carers who will do just about anything to help their precious children.

Below are some of your comments to my ABA blog post. I could not post these responses directly in the comments section. They had to be edited not only to protect myself but also the poster, their nature often being inflammatory and/or libelous.

I would not want to print anything that may risk litigation being pursued against a family who has just spent all its money on an ABA provider. It would be difficult to imagine the company that you have just paid your life savings to, or remortgaged your house to pay, to then sue you for libel.

In the future, could I ask anyone who comments on this blog to refrain from naming individuals and/or companies. Even though the same names keep on coming up in your comments, I cannot print them. From some of your comments though, I would suggest you take legal action against those companies as they have done a disservice against your children. I do hope to those who have commented, that you have retained copies of your contracts that you signed with these companies and that you have had a solicitor look at them. In my opinion, and considering the costs of ABA in Northern Ireland, parents should be provided a money back guarantee that results be achieved and those results should be specifically outlined and measurable. I would very much like to know from families what promises you were made from ABA providers, if any, what results were achieved and what targets your child met or did not meet, in their learning. I am not anti - ABA but I am anti rip off. If I buy something I want something more than just a vague promise and I certainly do not want lame excuses for when it all goes 'wrong'. One commenter to my blog stated that her child's autism was blamed when it turned out her child did not achieve much success in his ABA program. The ABA company said that the child was 'more autistic than they thought'. This is a get-out clause and if ABA companies wish to rely on such ridiculous excuses, they need to put it in writing from the beginning, so parents know what they are buying into.

YOU SAID: -

"Very interesting blog indeed. My family have recently had a very short relationship with XXX. We are a family with a very low income and live in a terraced housing executive house on an estate. It seems that unless you are willing to pay ridiculous amounts of money and a lot of which does not directly involve treatment/therapy, they are not happy to help your child after all. An hourly rate of £38.50 per hour for consultants on a 3 hourly weekly visit turns into £66 per hour for a consultants visit 3 hourly on a fortnightly basis. Mileage to and from your home is charged...... XXX seem to act nearly as an agent for therapists (who differ from consultants) ...I really wish that there were some kind of regulatory body for this because as a parent of a child with severe autism I am devastated that XXX were extremely reluctant to tailor a programme to the needs of my family as it went outside their 'fair and balanced models and costs'. Parents who decide to challenge these costs with XXX can expect to be labelled as abusive and slanderous and an insult to other families, their children and their choices. To quote XXX in relation to our package ..... "We are not a money making scheme, neither do we take advantage of anyone, we provide quality services and we need to ensure that our Consultants have a salary, surely you can appreciate that." XXX went on to say, " To continue to receive our services it will be necessary for you to have a 3 hour initial presentation rate". "

The government need to sit up and take notice. In the long run any expense faced by providing ABA to our children be it in schools or home based would pay off as this would provide them with necessary tools and skills to live a potentially 'normal life' thus reducing costs of care etc in adulthood. "

By Anonymous on ABA in Northern Ireland - Got Money? Got ABA! on 10/07/11

and here is another comment from an ABA provider in the United States

Dear Blog Owner

We teach over 400 children (under the age of 7) in XXXX, USA. Our families often find ABA a financial struggle, though in comparison to what you imply is happening in Northern Ireland, our families do not encounter as much difficulty. Here in XXXX ABA is considered the intervention of choice and in schools it is not only used but welcomed by teachers who are constantly seeking out better ways and means to help children on the spectrum. I am at a loss to understand why parents are being put through such misery in Ireland when all they want to do is create the best education for their children.

By Rhonda1 on ABA in Northern Ireland - Got Money? Got ABA! on 15/06/11

and another.....

Hello Autism Northern Ireland. My husband and me read your blog about ABA. How did you know our experience? Do I know you? You explained exactly what we went through trying to help our twins (both have autism and adhd).....We employed XXXXX for over 18 months. My mum loaned us money to pay for ABA but after we spent it we couldnt afford it any longer. Too expensive. The twins are in a special school now. They are almost 9 years old. I am not sure if the ABA helped them or not because we didnt really have the chance to get a good program started. The first six months was spent faffing around.

I cannot tell you the guilt we both feel because we cannot afford to buy our children ABA anymore. We did not get any help from our ELB or from school and if we had to do it again I dont think it would be ABA . it was too difficult for us. Please let more people know that ABA is not for the faint hearted or if you are poor. You just wont be able to pay for it.Iits not fair. Something has to be done because there are people out there who will take your money and leave you when you have spent it. They dont care about my children. XXXXX stopped calling us after our money ran out. They said they had responsibilities to other families and not just ours. The total amount we spent on ABA with XXXXX was just under £11,000 which for us was a fortune..... I dont talk about ABA to my husband because he gets very very upset and angry.

By Anonymous on ABA in Northern Ireland - Got Money? Got ABA! on 29/05/2011

and finally

"Your post is spot on. There seems to be a very dark side of autism and it also seems to involve or attract unscrupulous people making money from the families of disabled children. Why is something as simple as the APPLICATION OF BEHAVIOUR ANALYSIS so expensive? I don't have a child with autism myself but I have two nephews with autism. What I also have is a fair bit of knowledge about behaviour having had 4 children of my own. Leave these shysters to themselves. Any parent can learn how to change and shape their childrens behaviour /and their own. They don't need a high priced pseudo science peddlar/consultant to teach them. I am torn between laughing and crying after I read this. Parents can be gullible when it comes to their own kids, but ABA program directors should be ashamed of themselves. Meanwhile the governmnent just stands back and laughs while it repeats its mantra that autism is genetic. Its a comic tragedy all rolled into one. "

By Stringvest on ABA in Northern Ireland - Got Money? Got ABA! on 03/06/2011

Carly Fleischmann

2011-06-18T23:47:00.000-07:00

Many times, people have sent me videos to watch and articles to read underlined with the imperative, 'you have to watch/read this.' Most of the time I am disappointed at not having learned anything new.

This short video is truly different (http://tinyurl.com/673gefd ) and is guaranteed to inspire and uplift. If you are at all feeling down at the moment, if you or your child are going through a rough patch, well, I suggest you get a nice cup of tea and absorb the message of Carly Fleischmann, the hope and the love and the pure awesomeness!

I have no need to embellish this short video about the amazing Carly Fleischmann.

Just watch it and share it with others and remember it the next time someone tries to say our children are 'autistic' like that means something negative!

ENJOY

http://tinyurl.com/673gefd (video)

http://carlysvoice.com/ (Carly's amazing website)

"Don't give up, your inner voice will find it's way out, mine did".

Carly Fleischmann

http://carlysvoice.com/

ABA in Northern Ireland - Got Money? Got ABA!

2011-04-01T02:58:00.000-07:00

Mickey Keenan, Senior Lecturer Psychology Research Institute, University of Ulster and others, have written an excellent article about ABA as a commodity not only in Northern Ireland but in Europe as a whole. There is money to be made in providing 'interventions' for autism especially in applied behavioural analysis. It shouldn't be this way, selling science to the well off, but in Northern Ireland, much of the ABA is being 'sold'. The effect this is having on the chance of public access to ABA is damning.

See here for recent case in Northern Ireland where a family wins a High Court case regarding ABA: http://www.bbc.co.uk/news/uk-northern-ireland-12878909

In the UK there is no regulation regarding ABA and basically anyone can place the word 'therapist' on their door and charge whatever the market will bear (usually a lot where vulnerable and desperate/scared parents are concerned, those that have money). High Court Tribunals are taking place between families who want to help their children and Education Boards. Families are having to sue the state to get financial help to educate their children appropriately.These tribunals cost tens of thousands of pounds, money that could be used much more effectively if the Education Library Boards would only provide ABA to parents who want it. It is obscene that parents must endure the cost and angst of waiting to see if their child will get the education they need.

I don't in any way blame parents for using private ABA companies. These parents only want what is best for their children and if parents have the money, they will of course employ who they must. Imagine though, if we had ABA trained teachers and consultants already within the Department of Education, ready and willing to train families and teachers in the use of ABA at home and at school. Guess what? These people DO exist and are employed in Education and Library Boards, but they won't be telling you that any time soon.

The blame for this problem lies collectively. The Education Boards don't want to train their staff in ABA and educational psychologists, speech therapists and teachers don't want to be bothered, preferring to carry on with what they already 'know'. Education Boards attempt, innocently, to hold up the very expensive private ABA companies as an example of why ABA is not feasible. The private ABA companies blame the Education and Library Boards for not adopting ABA. It's a circular argument.

If other parents have been effective in raising this issue, I would love to hear how they are making their voices heard. Please let me know in the comments section!

Similarly, if you are a parent who has never heard of ABA, I would like to know that too. Why is it that every parent whose child is diagnosed with autism is not given induction training in the use of applied behaviour analysis and given the tools how to build skills and communication, and to manage behaviour in their children? Is it that ABA is too scary for the 'professionals' and 'experts'?

Is it that 'they' don't want 'you' to be able to raise your child like any other child? What would happen to all the lovely high paying paediatrician, SLT/OT and Educational Psychology jobs if parents could teach and manage their children by themselves. What would happen if your child suddenly wasn't so 'disabled'? Autism is a huge industry. Who would the pharmaceutical companies and psychiatrists use as their guinea pigs to trial their 'autism' drugs on if your children no longer develop mental health problems? Perish the thought! Pardon my sardonic tone.

But back to the issues at hand, - the monies being spent on one child in an ABA tribunal could help scores of children. Worst of all, these high profile cases and the money used to fight them is stagnant money - the money spent to fight these legal cases does nothing to further the cause for early intensive science based intervention for other children who have autism. Behind these tribunals are not only desperate parents, but often a private company pushing the parent to sue so that the Education Board can then pay that private company, individual or organisation.

See this recent case in Scotland where £156,000 was spent to send one child to a Steiner School - see here: http://business.scotsman.com/scotland/Taxpayer-foots-156000-bill-.6720724.jp. Madness! That kind of money could be used for establishing a private school for children with autism serving 10 children. Further the 'need' to spend that kind of money is an admission of historic failure to that child from his local education system.

Tribunals where parents argue for ABA for their children fuel the fire for those who want to deny ABA to children. Tribunals arguing for ABA haven't and won't help my child or yours get ABA.

Keenan, et al, in the related article below argues that ABA should not be 'for sale', and should not be battled out in the courts where only those families with money can argue for it. It's elitist and counter-productive. ABA is a science, albeit a pseudoscience but at least it has built in measurement tools which can help in the treatment of the core difficulties of learning when you have autism (unlike the TEACCH program which is currently on offer in Northern Ireland.) I think it needs to be offered to those families who want it. It's also one of the few interventions/treatment or whatever you want to call it, for autism with a built in aspiration for our children. If you are using ABA then it says a lot about you - it says you believe your child will learn and that you are willing to do the work to ensure your child learns.

Keenan, et al in the article say a lot more, much better than I and if you know nothing about ABA, read this article to get a flavour of what is happening on the ground where ABA in Northern Ireland and elsewhere is concerned.

Link to that article here: http://firstmonday.org/htbin/cgiwrap/bin/ojs/index.php/bsi/article/view/2879

The introduction to that article is below.

But before you read the article I bring to your attention comments I have received from CEAT, (Centre For Autism Treatment, the staff of which were formerly associated with London's LEAP) the provider to the family noted in the above link who fought for ABA in Northern Ireland, again, see here: http://www.bbc.co.uk/news/uk-northern-ireland-12878909

I don't know what CEAT would think of Mickey Keenan's article though I did receive a couple of comments on my blog from Mary Hopton-Smith, Co Director of CEAT which I have printed below.

From her comments, I think Ms Hopton-Smyth, from her words, believes she has done parents in Northern Ireland a favour by moving herself and her colleague(s)/company to our shores. (blue emphasis is mine). I do not question the efficacy or professionalism of CEAT in any way. What I question is the nature of private ABA provision in general. In my view ABA should be accessible for all children. Parents who spend their money on private provision and argue in High Court Tribunals which are fought against by public monies, do very little for the rest of the children who have autism or those who will be diagnosed with it in the future, many of whom, in the present climate have very little hope of acquiring ABA. Your taxes are being spent in the tens of thousands to argue appropriate educational provision for the very few.

In Northern Ireland, where ABA is not publicly funded without a fight, the parental support of private ABA providers continues the damaging cycle of making ABA inaccessible to those less financially fortunate. Privately funded programs give the public impression that ABA is, and has to be, expensive.

I have known a few families who have used ABA, all of them have been middle class, educated and have money in the bank. There are of course, exceptions but in my experience, this was the case. So, if you are living in 2 up 2 down Housing Executive house in an estate and you have no separate room for your ABA play area and you are unemployed, unable to pay private ABA consultant fees, it's a pretty safe bet your child won't be getting ABA unless you are a very vocal and extraordinary parent, or unless you use the services of your local ABA charity(s).

When you mention you want ABA to your child's school, the teachers will give that stunned, deer caught in headlights look and try to imply you need a straightjacket. I can just hear some teachers comments in this regard, "Mrs Jones", they might say, "why on earth would you want to spend all your money on something that will turn your child into a robot and leave you penniless?" Of course one of your responses may well be, "Mrs Smith, why on earth would I want my child to leave school at 16, unemployable, with no social skills or ability, with mental health problems and living with me till I die?"

If you as a parent want ABA you can forget about it coming from the state. You can 'DIY' it yourself or join a charity that helps to train/provide it but that might take some time and it's a learning curve. A ready made ABA program that can be immediately bought will be undoubtedly preferable for parents who can afford it and who want to help their child immediately. If you have created your ABA program yourself (it's not that difficult) you will though, have difficulty convincing your child's school and the school staff in implementing it. Unless your program has fully trained ABA professionals involved and supervising you the school probably won't be compelled to mirror ABA in the classroom for your child. (when I say probably I actually mean 'won't'!)

Nature abhors a vacuum and in this instance there are those here who have filled the ABA vacuum. Something as potentially important as ABA should be a right for every child, not a privilege for those who can afford it. Parents can buy what they want but Ms Hopton-Smyth's words ring just a wee bit shallow in context of what is really happening here. Generally no money means no ABA. Do I blame her for making a living out of ABA provision? No. Do I believe parents would be better served by ABA being provided by the State? Yes.

Someone needs to request a freedom of information request to their child's local school just to see how much is being spent on a child who has autism. I suspect it's a lot more than one would imagine. Retaining the services of autism outreach staff, an educational psychologist, a full-time classroom assistant, occupational therapy, speech therapy, yearly training courses, etc all adds up. What does it cost for an educational psychologist to come to your child's school and observe for half a day? What comes out of these observations? Most educational psychology reports I have ever received for my child have been negative, non-prescriptive and wholly unnecessary. Autism = money.

FROM: CEAT - Ms Hopton-Smyth: "Dear Author of this Blog, I am very interested in knowing your identity. My name is Mary Hopton-Smith, the Co-Founder and Director of CEAT, the Service Provider to the family featured in the news article.
(I have three children, the youngest of whom has autism. I live in Northern Ireland and my comments on this blog are echoed by many other parents with whom I correspond, know and converse. My name is of no concern to you though my thoughts and opinions are similar to those heard around the UK. I am not a member of any organisation, Trust, Education Board or competing company. This is a public blog, you are welcome to read it or not read it. My self appointed role in this blog is to try and challenge the 20 years of intransigence (30 years?) that has gone on in Northern Ireland where autism is concerned and to try and empower parents to think about and change those things that are holding their children back. I am not saying I have succeeded in that, but it's my little contribution and judging from the feedback I have received from other parents and the thousands of people who have visited my blog just this year, I think my opinions have at least been read, and may be of some interest. You may think differently which is your right.)

Ms Hopton-Smyth: I admire your passion for the provision of EIBI in Northern Ireland and you are not alone, and this should be of great comfort to you.
(Yes Ms Hopton-Smyth, I do want ABA for all parents and individuals who want it and I want it to be financially accessible not detrimental). I am not in pain, so I do not need comfort but interesting choice of words.

Mary Hopton-Smyth: There are more children participating in EIBI programmes in Northern Ireland than ever before due to the fact NI is fortunate enough to have the largest and most qualified EIBI clinic in Europe i.e. CEAT.
(I was actually thinking of editing this part of your comment and I didn't want you or anyone else to use this blog as a sounding board for financial gain, but actually Ms Hopton-Smyth, Northern Ireland already had an ABA charity/provider called PEAT, run by parents which provides ABA training and ABA therapists based on a means tested scale of ability to pay and who lobby the government for ABA. I am not a member of PEAT. I am a realist. PEAT and the other ABA based charities in Northern Ireland have their problems too I am sure. At some point though, all the charities, and organisations promoting and using ABA/EIBI need to come together with one voice to lobby for ABA. I am sure, Ms Hopton-Smyth that you would agree ABA for all as opposed to ABA for those who can afford it, is what you ideally would like to see. When your clients no longer need ABA, or your company that would be the ultimate compliment no?

Ms Hopton-Smyth: CEAT is a non-profit making organisation which is able to provide weekly supervision to families to conduct research supported UCLA EIBI programmes. The results of which are significant.
(Ms Hopton-Smyth, unless you provide public access to your annual report on you website, I will have to take your word for it that you are non-profit making and that your clients have made significant progress. If the progress is that significant my point of this blog entry is palpable - parents, all parents want that for their children and it should be available to them all, not just those with money. Case in point is the family referred to above who recently won their court case. How they must have felt, not being able to access funds to continute the ABA program for their child. It must have been horrible for them, not being able to 'afford' CEAT any longer, or the therapists.

Ms Hopton-Smyth: You should be delighted for the families of NI that such a provision exists, indeed it was a group of families that pioneered the establishment of CEAT as they wanted NI to have a clinic of its own so that families did not have to fly in consultants. (see my comments about PEAT above. )
Ms Hopton-Smyth: CEAT is recognized by the Education Boards and Health Trusts as Specialist Providers and we work closely with many schools. In your blog you ask whether CEAT continued to provide services to the family when they could no longer afford payment.

Ms Hopton-Smyth: The answer is that CEAT is always available to the family by e-mail and by phone whenever they need us at no charge.

Ms Hopton-Smyth: Additionally, it needs to be noted that whilst £38 000 is quoted, this included the wages of the therapists, not CEAT services, and that in fact at least £23 000 of this money was spent on therapists and not on CEAT. The child in question made significant gains, he was non-verbal aged 5 and is now able to hold conversations and complete his home work independently.
(Ms Hopton-Smyth, have you thought about how families desperate to have science based interventions and treatment for their child could afford £38,000 in the first place? I presume, that with your knowledge of how much private ABA costs that you are strongly lobbying the government to provide ABA to all. In the meantime, ABA, through private provision is prohibitively expensive - when it doesn't have to be.

ABA is NOT rocket science and there are a myriad of ways for families to obain ABA volunteers for free. £23,000 for therapists may as well be £230,000 for a family who cannot afford it. £23,000 would train 5 families in the use of ABA. Because you are strong proponents of ABA I presume that you provide an intern program for therapists who will work voluntarily until they achieve their accreditation, thereby passing on much needed help to families for free or at reduced costs?

Ms Hopton-Smyth: The parents were trained thoroughly in the principles of ABA, they had in-home training for 3 hours every two weeks for three years, by a graduate of the ABA Masters Course in NI. Not too sure why they would sue us on these grounds.
(Ms Hopton-Smyth, I am glad that you answered that question)

Ms Hopton-Smyth: Finally, you make a few comments about ABA providers 'lining their pockets'. This is not so, any individual working in our private service provision earns less than if they worked for a public service, this includes us all. This is a vocation and not a money making venture, you are more than welcome to ride with me in my 7 year old car and come to my small terraced house. This work does not lead to a life of wealth and easy living, it is challenging work, but work that is amazing when we see the results that we see every day.

Many parents I know who have young children with autism cannot work as they are full-time carers, particularly single parents whose children are not yet in school because they cannot find a suitable nursery.

Some of them live on benefits as you can imagine and live hand to mouth, terrified of what will become of them and their children in a very uncertain future. They know there is a better education modality for their children, but they simply cannot afford it. Is that your problem? No, of course not, but if you truly want to help families and children with autism, putting them into debt and desperation about how to continue funding their child's program isn't helping much.

Further Education and Library Boards will NOT fund a program of ABA unless the parent has already paid considerable funds toward it. Failing that, a parent might enlist a private educational assessment that positively suggests that ABA would be beneficial. Parents do not have the money to pay for these reports either - your comments are rather simplistic). Unfortunately, in Northern Ireland, unless you have money, your child will generally not receive ABA.

Ms Hopton-Smyth: The smiles and speech of children, and their families who have their children and their lives back. So, please be reassured, NI has a thriving culture of EIBI, and a significant group of families who are conducting amazing programmes with a team of dedicated, qualified and extremely experienced individuals.

(Ms Hopton-Smyth, I suggest that the families to which you refer engage en-masse in vocal lobbying together with the ABA charity (PEAT) and other voluntary, human rights and education organisations to enlighten Education and Library Boards and demand ABA for all children and individuals who want/need ABA.

I note that on both the CEAT website and the PEAT website, that neither of your organisations mention each other. CEAT and PEAT are located less than five miles apart from each other. Why are both organisations not supporting each other and working in tandem to help children in Northern Ireland? Both of your resources could be pooled much more effectively if you were working together!

You are entitled to create whatever business you like, but where ABA is concerned you are running a business, plain and simple. Unfortunately your line of business can, in my opinion, encourage the public false belief that ABA has to cost a fortune, when in fact it does not have to. I am delighted that there are families who are your clients, whose children have progressed with ABA. I applaud them for pursuing the very best for their children.
Isn't it about time we all grew up and started working together though?

I do hope that you approve this comment. Kindest regards, Mary"

By Mary Hopton-Smith on Northern Ireland Trust Breaches Obligation to Auti... on 30/03/11

She continued with a further blog comment:

Mary Hopton-Smith: "Dear Author of the Blog, Myself and my colleagues and many interested families and professionals are questionning why you have not approved my comment. I would welcome an e-mail explanation at information@ceatni.net. And why be anonymous? All a bit curious, but hey if that is the way you want it, then so be it. Kindest regards, Mary"

By Mary Hopton-Smith on Northern Ireland Trust Breaches Obligation to Auti... on 31/03/11
(Ms Hopton-Smyth, there is nothing curious that I can see. I do not 'owe' you or anyone else an explanation and yes that is the way I want it. This blog entry was predicated on the news story about the family who won their High Court case and your company as their ABA provider is naturally an area of interest in that.) By the way, I have published every comment I have received on this blog, yours being no exception. I have yet to receive a negative one, I welcome criticism! Constructive criticsm helps me learn because I don't have all the answers, very few in fact.

Every good business has a 'complaints' department' and I am sure you welcome them too, as an opportunity to make your business more effective and to learn. None of us have all the answers and where autism is concerned, no one has any answers yet. If we did, we wouldn't be having this discussion.

I am sure you would agree that in Northern Ireland, autism and all the issues surrounding it, are well overdue in terms of requiring scrutiny.

For more on this topic, read the article below:

Science For Sale: But At What Price?

http://firstmonday.org/htbin/cgiwrap/bin/ojs/index.php/bsi/article/view/2879

© Mickey Keenan, Karola Dillenburger, Paolo
Moderato, & Hanns-Rüdiger Röttgers. Readers of this article may copy it without the
copyright owner’s permission, if the author and publisher are acknowledged in the copy and
the copy is used for educational, not-for-profit purposes.

SCIENCE FOR SALE IN A FREE MARKET ECONOMY: BUT AT WHAT
PRICE? ABA AND THE TREATMENT OF AUTISM IN EUROPE
Mickey Keenan
School of Psychology
University of Ulster, N. Ireland
Karola Dillenburger
School of Education
Queen’s University Belfast, N. Ireland
Paolo Moderato
Institute of Behaviour, Consumers, Communication
IULM University Milano, Italy
IESCUM
Hanns-Rüdiger Röttgers
University of Applied Sciences
Münster, Germany

ABSTRACT: Educating the public accurately about Applied Behavior Analysis (ABA) is
an important undertaking, not least because misconceptions and myths about ABA
abound. In this paper we argue that, unfortunately, the efforts of many dedicated
professionals and parents to disseminate accurate information about the benefits of ABA
for children diagnosed with autism spectrum disorder (ASD) are damaged by a few
behavior analysts whose focus seems to be more on monetary gains than social
responsibility. We cite examples of the resulting harm to the public image of behavior
analysis from a number of European countries. We conclude by calling upon fellow
scientists to unite in their opposition to unscrupulous abuses of free market forces for
short-term monetary gains that damage the dissemination of the science of behavior
analysis and thereby ultimately disadvantage those who should benefit primarily from our
science, i.e., some of the most vulnerable citizens of society.

SCIENCE FOR SALE

Research evidence has shown clearly that the science of applied behavior
analysis (ABA) offers the most effective basis for the treatment of autism
spectrum disorder (ASD) (e.g., Howard et al., 2007). However, ABA-based
treatments are not available to all children diagnosed with autism spectrum
disorder and their families worldwide. While in some countries there are laws to
ensure that treatment for ASD is based on best evidence (e.g., Ontario IBI
Initiative, 2002) this is not the case across Europe. On the contrary, European
governments have fought parents to prevent funding of ABA-based treatments.
For example, the Irish government has spent €millions on tribunals against
parents who requested ABA-based treatments for their children.

The parents of a young autistic boy who lost a €5m court battle to secure
State funding for a dedicated form of education for their son will have to
pay their own legal costs. Cian and Yvonne O'Cuanachain battled for 68
days in the High Court to oblige the State to provide Applied
Behavioural Analysis (ABA) for their son, Sean. (Healy & McDonald,
2008)

In the United Kingdom too, ABA-based treatments generally are funded only
if so ordered by a tribunal. Similarly, in Germany and in Italy statutory ABA-
based services that are free to the end user are virtually non-existent. In most
cases parents still loose their fight for funding home-based early intensive
behavioral intervention programs and end up funding them themselves, e.g.,
through remortgaging their homes (Byrne & Byrne, 2005).
Morris (2009) outlined some of the many obstacles that parents face if they
want to employ ABA-based treatments for their children.

http://firstmonday.org/htbin/cgiwrap/bin/ojs/index.php/bsi/article/view/2879

(click link above to see the entire article)

Correspondence should be addressed to Dr Mickey Keenan, University of Ulster, Cromore Road,
Coleraine BT52 1SA, Northern Ireland, m.keenan@ulster.ac.uk

Northern Ireland Trust Breaches Obligation to Autistic Child

2011-03-30T03:32:00.000-07:00

http://www.bbc.co.uk/news/uk-northern-ireland-12878909

28 March 2011

A health trust breached its obligations to provide services to an autistic child whose parents spent nearly £40,000 on private support, a High Court judge has ruled.

Mr Justice McCloskey granted a declaration that the authority failed to take steps to help the boy lead as normal a life as possible.

His parents funded support for three years until they ran out of money.

They claimed there was a breach of duty under the Children (NI) Order 1995.

The child, now aged 10, and the trust cannot be identified for legal reasons.

The court heard how no assessment of the boy's development was conducted from his birth until 2009.

No services were offered either, apart from occupational therapy, physiotherapy and speech and language therapy.

The boy's parents were informed by a social worker of the availability of respite services but declined to use them.

In 2005 they became aware of the Centre for Early Autism Treatment (CEAT) and an Applied Behavioural Analysis (ABA) it provided.

The programme was delivered by trained therapists from November 2005 to April 2009 at a total cost of £38,391.15 to the parents.

Vindication
They were said to have continued funding it because of perceived positive developments in their son.

When it ceased because they could no longer afford to pay for it, they began extensive correspondence with the trust seeking support funding for an ABA programme or comparable services aimed at maximising their son's life skills and minimising disruptive tendencies.

The trust responded by carrying out an Understanding the Needs of Children in Northern Ireland (UNOCINI) report which concluded the child could benefit from respite support services.

It noted that the parents agreed with a recommendation for 20 hours a month of direct payments for respite support.

However, the family became dissatisfied and alleged that the UNOCINI assessment was limited to such care.

They claimed it failed to address their child's needs in developing positive life skills and discouraging disruptive behaviour.

Granting a declaration in the judicial review case, Mr Justice McCloskey said the trust breached its obligations by failing to assess the needs of a child in need, and provide services designed to minimise the effect of his disabilities and the opportunity to lead as normal a life as possible.

Nicholas Quinn, of McEvoy Sheridan Solicitors, who represented the family, said the parents were satisfied with the outcome, but also disappointed that proceedings were necessary to ensure their child secured his legal entitlement.

He added: "The outcome of the proceedings represents a clear vindication of the parents' decision to bring the proceedings before the court.

"The declaration should now be considered carefully by all the health and social care trusts in Northern Ireland to ensure that children who the law recognises to be in need receive the necessary services according to their individual assessed needs." "

<><><><><><><><><><><><><><><><><><><><><><><><><><><><><><><><><><

There are more than a number of issues and unanswered questions arising from this article:-

1. Which Trust did this happen in, why the secrecy?
2. What support was provided to this family and child from the ABA provider (CEAT) and from the Education Board after the family had spent all of their money? For their £40,000 spent, were the parents trained up enough to carry out the program themselves? There are ABA trained employees within various education boards. Did they fulfill their obligation and step in to help educate this child? What about those parents who don't have £40,000 to spare? Why couldn't the Education Board provide what this child needed?
3. If you have been forced to buy private services from an autism intervention provider you too, may have a similar case and be able to sue your local health trust or education board for dereliction of duty!
4. Why do parents have to go to the High Court and spend their life savings in the private sector, in order to educate their children?

The very 'precious' attitude of so-called autism 'professionals' out there has got to stop. The negative attitude of Northern Ireland towards ABA or any early intensive behavioural intervention (EIBI) for children with autism is a result of fear and ignorance on the part of 'professionals'. They don't know now to provide ABA (aren't trained) and its far easier to criticise it, or just tell you, the parent, that your child has autism and throw their hands up.
They will continue to do this and they will continue to persuade you to believe your child doesn't need intensive autism specific evidence based teaching until you, the parent challenge the system here that believes your child is not capable of learning or does not 'need' such interventions. (despite the rest of the world saying your child does need them.)

Instead, what you may receive here is a watered down TEACCH program, with no supervision, no evidence, no measurement and potentially, very little success for your child. Or worse, your child's teacher will tell you 'we use what works', whatever that means. You will be told by teachers who have taken a five day course in TEACCH, that they are fully qualified to teach your child and address his core difficulties. You won't ever get an explanation of what those difficulties are or how they will address them, you will just be 'assured' with great hyperbole and enthusiasm. Your child's teacher may tell you, 'as long as s/he is happy.' When you ask the teacher how they prove this or that 'works', the subject will quickly change.

It's just not good enough. You won't find out how inappropriate TEACCH is until your child turns 18 and is still living at home with you, with no hope of an independent life. Those same teachers who 'taught' your child with TEACCH will say, 'sure didn't your child have autism? What did you expect?". Good question though, what do you 'expect'? What are the expectations you have for your child? Clearly the parents in the article have high expectations and went into serious debt in order to fulfill the expectations they had for their son. All parents have high expectations for their children but over time, so many parents are beaten down by others and their negative attitudes and it all can become just too difficult to fight anymore. There will always be someone around who will enable you, to convince you to accept the crumbs on offer.

In fact, there are plenty of people you meet every day including other parents and professionals who may be lying to you, who have invested in the lie that your child will not achieve, will not live independently, will not learn, will not have a job, etc etc. Parents whose own children have suffered the irresponsible 'treatment' plans of ill-trained speech therapists and teachers might be feeling guilt and anger about their own children, when they see other children doing well and children who have received the best interventions. It must be painful for some parents to read the article above, knowing that the parents of this child fought for what they believed their child needed. How is it that some parents with a child who have autism will fight all the way to the High Court for their child and others will accept what is offered them?

It's a safe bet that if you fight for the right to ABA or another intensive intervention program for your child that there will be parents and professionals who will try to dissuade you. What is it about the parents in the article that made them fight in the first place? What do they know that many of you may not know?

There are professionals out there, speech therapists, paediatricians, teachers who consider themselves 'experts' who haven't read a new piece of research in years, who are stuck in a rut, who don't have the time to engage in new thinking, and whose egos would be dented should someone suggest that the children they work with might be helped in a 'better', measurable and scientific way.(...by the way, what exactly does a speech therapist do and why are they involved with our children? Our children's social communication difficulties do not fall into the remit of speech and language!)

Yet, you can't stop progress and the article above is testimony to that. Northern Ireland is slowly moving forward, finally. If you are a parent, I strongly urge you to stop listening to those people, be they parent or professional who don't believe in your child and who won't or don't support you in finding the best way to help him/her or who use money or the lack of money as an excuse to not help your child.

Maybe we should start identifying the people in our children's lives who are truly helpful and also those who are damaging them, sometimes on purpose, sometimes through sheer ignorance. Plenty of those 'damaging' and enabling people will give you sympathy when your child is 18, living at home and can't tie his shoes. How many of them will encourage you now though, to help your child to be the very best he or she can be with the best interventions and education programs available?

If you really thought about this, you might find yourself crossing some names off of your Christmas card list. You might, however, be helping all those children who will be diagnosed in the future. They deserve an appropriate education delivered in a way that a child with autism can understand and use. Applied Behaviour Analysis - it's nothing to be afraid of. I think that those who deny it to children in Northern Ireland, truly do know what it is, and they deny it based on the high cost of delivering it.

In my opinion ABA/EIBI needs to be classed as a medical intervention. It needs to be absorbed and taken away from the private providers and offered by the education boards to any family who wants it. Families should not have to use their life savings. Our children have to stop being someone else's commodity or excuse for inaction.

It's going to happen, eventually, so I suggest to the Health Trusts and to the Education Boards to get your affairs in order and prepare for an onslaught of empowered parents who are not going to take no for an answer where ABA is concerned. Parents shouldn't be expected to re-mortgage their homes to pay for private ABA providers. ABA can be taught in homes and in schools just as easily as some of the other so-called 'autism interventions' like TEACCH, etc.

ABA needs to come 'out of the closet', it's not rocket science and once you get past the jargon and the often deliberate obfuscation of very simple concepts, (aka good parenting) any parent could potentially run an ABA program and live the program in their daily life with their children. Parents will and have spent every last penny they have in the belief that what they are buying will help their children. Health Trusts together with Education currently waste incredible amounts of money on useless autism awareness courses for parents, few of which supply a parent with real tools to help their children learn or tools to help teachers teach our children. If your child was diagnosed with cancer (don't like this analogy but it serves a purpose here) you wouldn't be expected to pay £40,000 for treatment. We have politicians duly elected by the democratic process who have passed laws protecting and enshrining your child's rights in law. Our children have the right to a full and happy life like any other child. Why is this right more a privilege for the well heeled where our children are concerned?

As an aside, where is the much lauded Autism Bill in all of this? The bill will enshrine nothing, will guarantee nothing and when it passes certainly will not be securing your child an appropriate education or intervention model. There is no money for autism and no amount of autism bills will legislate forking out £40,000 per child for ABA.

As a parent, you are the change and plenty of you out there are effectively advocating for your children. Where autism is concerned, it will only ever be parents who bring in positive change.

For the rest of you, please remember that no one will come knocking on your door to provide your child with a selection of educational options. You have to demand it, you have to argue your child's case for it. All of our children and the children of the future are counting on you. The alternative is ....what?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
If you want to know more about Applied Behaviour Analysis and want to be a parent/educator in ABA see PEAT (Parents Education as Autism Therapists) http://www.peatni.org/ It's Northern Ireland based and it's a charity. You can become a member, and even join their committee. If you want ABA for your child, PEAT is your first port of call in Northern Ireland.

More resources for Applied Behaviour Analysis: http://rsaffran.tripod.com/aba.html

"Let Me Hear Your Voice", a wonderful book about ABA, providing real resources for setting up your own
home-program - by Catherine Maurice: http://www.amazon.co.uk/Let-Me-Hear-Your-Voice/dp/0709063466/ref=sr_1_1?ie=UTF8&qid=1301483580&sr=8-1

Free materials to help your child learn social communication through Verbal Behaviour, The Mariposa School: http://www.mariposaschool.org/learning-materials

2000 Children on Waiting List for Educational Psychology Services in Northern Ireland

2011-03-03T12:18:00.000-08:00

http://www.bbc.co.uk/news/uk-northern-ireland-12596279?print=true

28 February 2011

More than 2,000 children in Northern Ireland are on waiting lists to see an educational psychologist, it has been revealed.

Figures for the last academic year show that 11,000 pupils in primary and post-primary schools have been getting help.

The data was revealed in response to a question by Ken Robinson of the Ulster Unionist party.

Of the five boards, the south-eastern had given education psychology help to the largest number of children.

Four and a half thousand were seen in that board area, more than double the number seen in the other boards in the 2009/10 academic year.

The north-eastern board had the longest waiting list at 666.

Ken Robinson said he was concerned that there were too few psychologists. He said it was important for children in need to get professional help "as early as possible".

Autism NI Charity - the case of the disappearing website

2011-02-20T00:17:00.000-08:00

I recently took a look at the Autism NI website. For the past year many of the most important  pages of their website have been empty and 'under construction'. This charity claims to represent 1000 families (there are about 20,000 families presently living with autism in Northern Ireland) and also claims to be Northern Ireland's foremost autism charity. Websites are a charity's calling card and should represent what the charity does and what it offers.

Based on their website, I wouldn't fancy needing help from Autism NI.

Here's a look at what they offer (or rather don't offer) via their website. As a parent who often meets other parents, particularly parents with newly diagnsosed children, I despair when they ask me what Autism NI does, and if they should 'go' there.  After viewing the AutismNI website I understand when they become deeply disappointed. At least they soon learn that they must rely on themselves to get what they need. That's where other parents come in (the experts). No wonder AutismNI's membership remains at only 1000 families.

Autism NI's links page (see here: http://www.autismni.org/familysupport/links.asp ) does not include the biggest Autism charity in the whole of the UK, namely the National Autistic Society (NAS)!
So to fill that gap, here is their link: http://www.autism.org.uk/

Nor does AutismNI include the locally based Asperger's Network. Again here is their link: http://www.aspergersnetwork.org.uk/ .

How could these two very important organisations be 'missed'? (ignored?) particularly when they both have branches throughout Northern Ireland?

It's my guess that the other 19,000 people living with autism in Northern Ireland have steered clear of AutismNI.  Further, there is a new wave of parents out there who aren't going to put up with giving their hard earned money and time to an organisation that in my opinion, offers no help (or hope for that matter). Parents want help and they know how to get it, they don't have time to fill the coffers of a charity that does little for them.

Apart from lobbying for an autism bill, I personally don't see Autism NI doing much of anything.

Anyway see for yourself. This charity which claims to be the Northern Ireland's autism charity has very little to offer the hundreds of families whose children are diagnosed in Northern Ireland every year. I cannot see what Autism NI actually does for its 1000 families. Perhaps if the charity posted it's annual report on its website, we might find out more.

If your child has just been diagnosed and if you are in need of help, contact me and I will gladly give you my list of preferred websites and organisations, with people who provide real help and tangible services.

From Autism NI's website:..........

FAMILY SUPPORT TRAINING
http://www.autismni.org/training/familysupporttraining.asp (retrieved 13 February 2011)

This section is currently under construction. For more information please contact:
Autism NI Training Department
Donard, Knockbracken Healthcare Park,
Saintfield Road,
Belfast,
BT8 8BH
Tel: 028 9040 1729
Helpline: 0845 055 9010 (Monday, Wednesday and Friday 9.30am-1pm)
Fax: 028 9040 3467

TRAINING CALENDAR
http://www.autismni.org/training/calendar.asp (retrieved 13 February 2011)

Our training calendar is currently under construction. For more information please contact:
Autism NI Training Department
Donard, Knockbracken Healthcare Park,
Saintfield Road,
Belfast,
BT8 8BH
Tel: 028 9040 1729
Helpline: 0845 055 9010 (Monday, Wednesday and Friday 9.30am-1pm)
Note the above helpline - the helpline number is only open 10.5 hrs per week - make sure your family crisis only happens within these hours

BOOK A COURSE
http://www.autismni.org/training/bookacourse.asp (RETRIEVED 13 February 2011)

This section is currently under construction. For more information please contact:
Autism NI Training Department
Donard, Knockbracken Healthcare Park,
Saintfield Road,
Belfast,
BT8 8BH
Tel: 028 9040 1729
Helpline: 0845 055 9010 (Monday, Wednesday and Friday 9.30am-1pm)
Fax: 028 9040 3467

OUR STAFF AND BOARD

http://www.autismni.org/about/staff.asp    (RETRIEVED 13 February 2011)

Please come back shortly to view our updated Staff and Board information.

BOOKSHOP
http://www.autismni.org/bookshop/index.asp (RETRIEVED 13 February 2011)

Our bookshop is currently down for maintenance. Please call back soon to view our new online shop.

If you want to give or raise money for AutismNI, funnily enough all of these links work fine.
You can take your pick from the following fully functional links: www.autismni.org/howcanyouhelp/index.asp

-Make a donation
-Become a Member
-Leave a Legacy
-Events
-Social and Community Fundraising
-Business Support
-Fundraising at School
-Merchandise
-Charitable Trusts
-Volunteer

"You can't build a reputation on what you are going to do." Henry Ford

AUTISM EYE - New UK magazine for parents and carers of children with ASD

2011-02-09T05:46:00.000-08:00

A brand new magazine written by and for parents of children who have autism is here!

Autism Eye (http://www.autismeye.com/) is published in the UK and is packed full of information and new research. The publishers have done a fabulous job of bringing valuable local information into one publication. Autism Eye is published quarterly and the very first issue is expected this month.

I like the look of this magazine and it's approach. It's about time that we had a magazine that was both balanced and informative regarding autism. I wish the publishers the very best of luck and look forward to my first copy.

http://www.autismeye.com/

Have your say on DLA - Last Chance to Respond to Consultation 14 February 2011

2011-02-09T04:53:00.000-08:00

It seems Northern Ireland isn't too worried about the potential havoc the new proposed changes to DLA will bring. I have visited various charities including AutismNI/AutismUlster/PAL and there is no mention of these very important changes taking place (AutismNI too busy lobbying for a useless autism bill).

Carer's UK, however, are urging the public to voice their opinion now before it's too late.

Have your say on DLA! Last chance to respond to consultation
We need your help!

The Government has announced proposals for the biggest changes to disability benefits since the creation of Disability Living Allowance and there are only days left to make sure carers' voices are heard in the consultation.

Can you spare five minutes to respond to the consultation? All you need to do is:
Why we need your help:The Government plan to replace Disability Living Allowance with a new Personal Independence Payment, with a new application process including 'independent medical assessment'. In addition, the Government plans to cut £1 billion from the Disability Living Allowance budget, which could lead to hundreds of thousands of disabled people seeing their benefits reduced or removed. Carers UK is deeply concerned that the knock-on impacts on carers have not been considered and we are also worried that the future of Carer's Allowance remains unclear.

The Government's consultation on the DLA proposals closes on Monday 14 February and we need to make sure that carers voices are heard loud and clear. We will submit a full response to the consultation making it very clear to the Government what carers need, but our response will only be counted once and we need lots of carers and carers groups to respond as well.

Best wishes,

Imelda Redmond CBE
Chief Executive, Carers UK

Copy our five key points into your email.
Write a few sentences about your caring responsibilities or the carers you represent as a group.
Send it to the Government and your MP!

Visit our website for these key steps and who to email. more...

Autism Speaks, so Shut Up

2011-02-07T03:52:00.001-08:00

Much has been written about the charity 'Autism Speaks'

The youtube video below sums up what many are thinking and the video speaks for itself

http://www.youtube.com/watch?v=xz2X8f15x5k&feature=related

The video could also be describing any number of autism charities, and the big question is, where is all the money going?

Callous Disregard for our children - Children in PAIN not autism !

2011-02-06T13:52:00.000-08:00

When your child rocks, screams, shouts, writhes in pain do you see it as pain or do you just see what you believe is autism? So many physical problems go unnoticed, misrepresented or ignored in children who have autism, particularly those who have suffered regressive autism due to toxic vaccines like this little girl in the short video : http://articles.mercola.com/sites/articles/archive/2011/02/07/new-research-shows-link-between-mmr-vaccine-and-autism.aspx

Even though this child does not have language she is saying loud and clear what torment she is going through. Every doctor in the land should be made to watch this 3 minute video and be asked to diagnose this child (minus telling them she is autistic). Any doctor worth his salt would have to admit this child is suffering.

How many of you have children who present like this? How many of your children have gastro intestinal problems like this little girl - problems that are continually ignored by doctors? This kind of pain is suffered by so many children on the autistic spectrum - imagine trying to learn in school when you are in so much pain. Notice the little girl's hands with her wrists bent backwards. Clear signs of severe pain. Look at her face, twisted in pain.

If an animal acted like the girl in this video you would take it to a vet. Yet, so many parents believe doctors when they say that their child is autistic and there is nothing they can do - it's just autism.

Please watch - this little girl may be just like your child. Please watch and never believe what doctors may tell you that autism can't be treated.

http://www.youtube.com/watch?v=PzYREX0jrY4

or here: http://articles.mercola.com/sites/articles/archive/2011/02/07/new-research-shows-link-between-mmr-vaccine-and-autism.aspx

(http://www.cryshame.org/)

DLA for Northern Ireland is being reformed - make your voice heard now!

2011-01-22T12:09:00.000-08:00

Here ( http://www.dwp.gov.uk/docs/dla-reform-consultation.pdf) is the Department of Work and Pensions Consultation paper on DLA reform.

Bet you didn't even know there were plans to reform it? Alex Atwood brought the consultation to Northern Ireland (London didn't think it was important enough for us to fret our little heads about!!) but it seems no one really knows about it yet, and that probably includes you.

The autism charities certainly didn't tell you, nor did the other disability charities. So what is all their money being spent on. This is a huge issue and you should have known about it.

Please take the time to read the document and provide your response (before 14 February 2011)

If you don't and the reform is agreed then you may have to say bye bye to your child's DLA. See here for more: http://www.bbc.co.uk/news/uk-northern-ireland-11926796

DO NOT DEPEND ON disability groups to speak for you and your children. Make your own views known.
http://www.dwp.gov.uk/docs/dla-reform-consultation.pdf

After you have read the document you can send your responses in writing to

DLA Reform Team
1st Floor
Caxton House
Tothill Street
London
SW1H 9NA
Fax: 0 2 0 7 4 4 9 5 4 6 7
Email: consultation.dlareform@dwp.gsi.gov.uk
Ensure your response reaches them by 14 February 2011. Please say whether you are responding as an individual, or on behalf of an organisation. If responding on behalf of an organisation, please make clear who the organisation represents, and how the views of members were obtained.
=======================================================================

Monday 6 December 2010

http://www.northernireland.gov.uk/index/media-centre/news-departments/news-dsd/news-dsd-061210-proposals-to-reform.htm

The Department for Work and Pensions (DWP) today launched proposals for consultation to reform Disability Living Allowance (DLA).

Over 182,000 people are in receipt of DLA in Northern Ireland, 103,500 of who are of working age, and this is the group that will be targeted first.

The proposed changes to DLA include:

Renaming the benefit,
The introduction of an assessment process,
Simplifying the system with a reduced number of rates being made available to claimants,
An extension to the qualifying criteria i.e. the new benefit will only be available to those with a long-term health condition, expected to last a minimum of 12 months, as opposed to the current six months,
All those who are successful in being awarded the new benefit will be periodically reviewed.

The Coalition government intend to introduce the reforms in 2013/14 and, as part of today’s consultation paper, are asking for the public view on whether or not to roll the proposed reforms out to include children and pensioners in receipt of DLA in the future.
Responding to the proposals Social Development Minister Alex Attwood said: “I am concerned about the scale, pace and intention of these proposed changes, given the high number of people who are in receipt of DLA here. The Coalition Government has to acknowledge the different circumstances in Northern Ireland. I will work to have our conditions fully recognised.
“We have the highest levels of DLA claimants in Britain by far. We don’t have to look too far into Northern Ireland’s past to discover why this is.
“I met with the Westminster Welfare Minister, Lord Freud last week, for the third time. I outlined to him in detail a number of measures in terms of welfare law, benefits practice and hardship needs which I believe will provide a pathway through Northern Ireland’s difficult conditions in a way that would help those in need.”
Minister Attwood added that he will be meeting again with Lord Freud to raise his concerns about the potential fall-out for Northern Ireland if the reform of DLA was to go ahead here.
Minister Attwood continued: “The full impact of many of these cuts and changes is beginning to be felt and understood and this places a higher need and obligation on all of us in London and Belfast to work out how best to do everything to protect those in need.”

Notes to editors:

For further information, please contact DSD Information Office on 028 9082 9497. Out of hours contact the Duty Press Officer via pager number 07699 715440 and your call will be returned.
Questions and answers:

What is Disability Living Allowance (DLA)?

DLA is a tax free, non means tested benefit for adults or children with disabilities. It is intended to provide money towards the extra costs associated with disability and can be awarded to those in, or out, of work.
DLA is divided into two parts, the Care Component – for help with personal care needs, (which is paid at three different levels); and the Mobility Component – for help with walking difficulties, (which is paid at two different levels).
These factors lead to a possible 11 different payable rates of DLA.
Where an individual does not agree with the outcome of their claim, they have the statutory right to appeal to an independent tribunal, called The Appeal Tribunal Service.
To receive DLA a person must meet the eligibility criteria – laid out under legislation - for a period of three months, and be expected to meet the entitlement conditions for at least a further six months.
The decision to award DLA is based on the customer’s completed application form which details the impact of their disability on their daily lives. This evidence can be supported by relevant medical reports.
There is currently no process to trigger reviews of awards which have already been made to individuals, to ensure they continue to reflect the appropriate level of support.

How many people currently receive DLA in Northern Ireland?

In Northern Ireland, 182,423 people currently receive DLA, ranging in age from children to 80yrs and over - 103,500 of these people are of working age. 48% of all recipients are male and 52% are female.
Northern Ireland has seen a growth of 2.6% in DLA recipients since 2009 (177,653 recipients); the equivalent rise in Britain has been three per cent since last year.
Northern Ireland has the highest prevalence of DLA claimants per head of population, in the UK. For example, for every 1000 people in Northern Ireland 102 claim DLA – this is equivalent to 1 in 10 people. In Wales (where prevalence is highest in Great Britain) 80.5 per 1000 people claim DLA, this equates to 1 in 12 people.
A number of ‘disabling conditions’ are taken into account in the current DLA system, including arthritis, back ailments, blindness, deafness, heart disease, epilepsy, alcohol abuse and learning difficulties, amongst others. ‘Mental health causes’ is listed as the most frequently occurring disabling condition in Northern Ireland, with 41,944 people currently receiving DLA for this reason.

What are the changes being proposed to DLA on which the Department for Work and Pensions are consulting?

a.) DLA will be renamed and this new benefit will be introduced in 2013-14. The new benefit will not be means tested. It will not be incorporated into the wider Universal Credit, announced last month. Special rules for people who are terminally ill will remain.
b.) The consultation paper focuses on working age people in receipt of DLA. The paper also seeks views on whether the proposed changes should apply to children and pensioners.
c.) An assessment process will be introduced to gauge a person’s entitlement to the new benefit. This will use existing evidence from the claimant, and in many cases include a face-to-face meeting with a healthcare professional to enable an in-depth look at an individual’s circumstances.
d.) The new benefit will have two components, one focused on a person’s ability to get around, the other on other activities related to participating in society. It is proposed to maintain different rates, but to lower the number of these and simplify the system.
e.) The new benefit will only be available to those with a long-term health condition, expected to last a minimum of 12 months.
f.) It is proposed that all those who receive the new benefit will be periodically reviewed.
g.) Once the new benefit is introduced, DLA will be closed to new claimants. Individuals currently receiving DLA will remain on it until they are reassessed.

How many people will this effect in Northern Ireland?

It is estimated that the proposed changes will result in a 20% reduction in working-age claimants once the proposals have been fully rolled-out.
There are currently almost 103,500 working-age claimants in Northern Ireland.

Why are the Department for Work and Pensions seeking to reform DLA?

DWP’s reasoning for DLA reform is to ensure that the benefit is focused on supporting disabled people in greatest need; to help them remain independent and to help them participate fully in society.
DWP recognise that it will cost money to change the current systems to align with their proposals, but the Coalition aims however, to save money in benefit spend in the long term. The projected savings are estimated to be 20% of the current expenditure on DLA.
The reforms are a key component of the Coalition Government’s plans to reform the welfare system.
A group has been set up to develop the new assessment process by DWP and the Social Security Agency in Northern Ireland is represented in this group, to ensure that the specific needs of people, living with disabilities in Northern Ireland, are taken into account.
What will happen to those people who no longer qualify for DLA?(i.e.YOUR SON OR DAUGHTER)Those who no longer qualify for DLA will be offered help and support to ensure that their needs are met and that they receive the level of benefit that they are entitled to, for example, Employment Support Allowance (which has replaced Incapacity Benefit / Income Support) or Jobseekers Allowance. OH DEAR

Autism Bill Northern Ireland - an update

2011-01-21T06:58:00.000-08:00

There has been much activity in Northern Ireland regarding the proposed Autism Bill. Among other things, the Autism Bill proposes to amend the Disability Discrimination Act regarding autism and to change the description of what autism is or is not. (ALARM BELLS!)

The Bill passed its second reading in the legislature (Stormont) on 7 December 2010. ( You can read the proceedings of the 2nd reading of the bill here: http://www.niassembly.gov.uk/record/reports2010/101207.htm (watch it live here: http://news.bbc.co.uk/democracylive/hi/search?q=autism+17+december+2010&type=media ) (Scroll down to 7 December 2010 and 13 January 2011)

Relentless lobbying by one charity in particular, (Autism NI/Autism Ulster/PAL/) has resulted in every MLA now knowing a little bit more about autism than s/he did last year.

To the uninitiated and to general 'do-gooders' out there, enshrining the rights of persons with an ASD, under law, sounds like it would be a good thing, unless, of course, you are person with cerebal palsy, multiple sclerosis or Down Syndrome. You would be forgiven for asking, 'hey, where is my bill?' (Well, don't worry, if this bill passes into law, your advocacy groups will be following suit for their own legislation and rightly so!)

Persons with a diagnosis of ASD in Northern Ireland are already classified as having a 'disability'. Their rights are already protected under the Disability Discrimination Act (DDA).

An Autism Act won't magically change the hearts and minds of those, who prior to such an Act happily bent the rules. An Autism Act won't legislate away the past 'wrongs' and the past 'mistakes', and it won't correct yesterday. Quite simply, an Autism Act won't clean up what has been the biggest problem in Northern Ireland, that of people in high places not working together and passing the buck where our kids are concerned.

We can legislate all we want, but unless the individuals who are paid to work with and for our children actually start working together and come out of their 'silos' nothing much will be achieved. This was made clear as a major problem regarding the Scottish Autism Bill. How is an Act going to enforce cooperation? It won't. The Scottish Bill for an Autism Act failed miserably last week. The Scottish situation compared to Northern Ireland is very similar. The Scottish Bill idea was instigated by basically one person, Hugh O'Donnell, MSP, backed by the National Autistic Society. It failed by votes of over 100 to 5. Last September an Autism Strategy was introduced for Scotland and it wasnt felt that legislation could add anything to that strategy. Actually the Scottish strategy was and remains woefully inadequate but it was felt legislation would make things even worse. See here for transcript of the Scottish debate which took place on 12 January 2011.

http://www.scottish.parliament.uk/business/officialReports/meetingsParliament/or-11/sor0112-02.htm#Col32090

Here are some of the dangers we face with autism legislation here in Northern Ireland. As a parent, I do not subscribe to 'getting all I can just for my child'. If we just take and not worry about others, we all lose out which is why I believe there is a grave danger our scarce and diminishing public resources would be concentrated by an autism act (how much is it going to cost? anyone?) and that this may seriously disadvantage others and pit parents against parents, families against families. There is an inherent danger that society will come to dislike us and our children!

An Autism Act would set our child as 'more deserving' in his or her disability. Our kids are already ostracised and isolated. We don't need to risk society disliking them and us because of a perception that we are 'getting it all' to the exclusion of others. If you are a parent of a child with autism and think your life is difficult and that no one understands your family or your child, try and think of those parents out there whose children have very rare diseases, or genetic problems, problems that barely warrant a support group because so few people have the difficulty.

Further, if your services aren't up to scratch, it really is about time that you, the PARENT started complaining, and actively campaigning for your child with your own voices. Don't ever expect that anyone, government or voluntary will pick up the tab or the responsibility for your child. The people heading up the call for autism legislation are in paid jobs, jobs that with funding cuts are at risk of being lost. Autism legislation will create jobs, but will it create services and positive change for your child?

With the financial cuts already here, it's going to be a tough road ahead and parental advocacy, parental strength, and parental responsibility is going to be the most important thing you can do for your and for my child.

Here is a link to the draft budget, now open for consultation: http://www.northernireland.gov.uk/website_-_draft_budget.pdf. Read and weep. There is no money.

Parents, when are you going to speak up and stop charities who are interested more in your money and their own survival, than they are in your children? How much did the lobbying by AutismNI cost? If you are a member of AutismNI, it was your membership fees and fundraising that paid for all the lobbying. Why didnt you ask the organisation to lobby about what your child really needs, like evidence based early intervention, specialist schools (not special schools), effective peripatetic services, skilled-up teachers and aides, more opportunities (real opportunities) to gain employment and to live independently for adults? These are the issues that are most important.

How many of your children with autism are going to be unemployed for most of their lives?
How many will develop mental health problems? How many of your children are going to be happy as adults? Our kids eventually grow up (unless your children are already adults!) Can a parent out there tell me what is available for my young children? I don't see much. I know that I am going to have to create that myself, work for it myself.

An amendment to the DDA is NOT going to change the attitude of teachers who think that because your child has autism he or she should go to a 'special school', that he or she is really just 'mentally retarded' and always will be.

I personally would not ask or demand anything for my child that I could not ask, or demand for another child that was in need.

The Autism Bill idea has so many flaws I can't begin to count them. MLA's have just accepted as gospel what was told to them by AutismNI. AutismNI has had the same CEO for 20 years and in my opinion, I think she is probably well versed in how to play politics in Northern Ireland. Where ministers and MLA's have fallen by the way side, AutismNI was always there, always constant, using it's experience and influence. Further, each MLA is after your vote. They know this bill is going to sway voters and they want as much support from you as possible. It's hard to say 'no' to a charity professing to represent the families of children who have autism.

Yet, I have had many people contact on this blog who vigorously do NOT want autism legislation and who immediately saw the dangers such legislation would bring. These people are parents who live with autism and who know what they are talking about, who are articulate. Seems the Assembly doesn't want to listen to them. Their voices don't count.

We have had over 20 years of intransigence and of pouring money into charities (Autism NI, etc) because the government didn't want to do anything, didnt know HOW to do anything. Now along comes this Autism Bill, and its going to make everything alright? I beg to differ.

The Autism Bill is a case of the emperor's new clothes. It's all smoke and mirrors, it says absolutely nothing, guarantees absolutely nothing, We must carefully examine what happened in Scotland last week. Not a lot of difference between there and here except that the Scottish MSP's had the sense to figure it out. Money was the biggest issue and that's going to be the issue here too, whether we like it or not.

AutismNI, (together with the help of SDLP's Dominic Bradley, et al). MLA's and the Health Committee in general have some serious deliberations to make. I hope now, they get some rest from the lobbying so they can think straight and make the right decision.

I personally don't think the bill will pass, I do believe our MLA's have a modicum of common sense. And if they don't they certainly have sense about money. (HOW MUCH, PLEASE, HOW MUCH WILL IT COST?)

But in the unlikely and unfortunate event that it does pass, I would just like you to know beforehand, that I and so many of my parent friends and colleagues support all human beings and we believe that needs of human beings, must all be met in an equitable fashion, no one more important than the other.

You will know who to blame if this ridiculous bill passes. If you don't I will remind you after the fact. Beware Stormont, beware MLA's for the backlash should this bill pass. It will be your heads rolling when you are being hounded for hundreds of thousands, if not millions to pay for it, and for the future 'bill's' and amendments to the DDA that will follow from other charities who work with people who have a multitude of different disabilities, all equally deserving.

Should the bill pass as law we can also expect that a lot of parents out there will see that the only way to get services for their child is to convince doctors and other professionals that their child has autism or is on the autistic spectrum. I can just hear the local conversation of the disgruntled mummy whose child needs help with her speech delay. Molly says to Mary, "Molly, have you heard of autism, maybe you can get wee Janey an autism diagnosis, after all she has been known to step on her tippy toes and she does like to watch videos. Maybe you can convince her doctor that she has autism! That way you can get all the services those other kids get. Yes Mary, that's a great idea, I am going to phone the child development clinic right now!"

This Bill is not a good thing.

Watch the Scottish Education Committee debating the need of an Autism Bill. http://news.bbc.co.uk/democracylive/hi/scotland/newsid_9191000/9191238.stm

"No law or ordinance is mightier than understanding. "Plato

Autism Bill Scotland fails to gain support

2011-01-20T23:44:00.000-08:00

http://news.stv.tv/scotland/220130-autism-bill-fails-to-gain-support-at-holyrood/

12 January 2011

Autism Bill fails to gain support at Holyrood

Liberal Democrat MSP Hugh O'Donnell's Bill would have seen the Scottish Government prepare and publish an autism strategy.

MSP Hugh O'Donnell's Autism Bill - intended to bring in new laws aimed at improving services for people with autism - has been rejected by 109 votes to five, with two abstentions.

The Bill would have introduced an obligation on the Scottish Government to prepare and publish an autism strategy. It would also have required ministers to issue guidance to health boards and councils on implementing this.

The Holyrood Committee responsible for reporting on the Bill has already warned that the proposals could fail to make "meaningful differences" for those with the condition.

Mr O'Donnell called for MSPs to allow the Bill to be progressed further, or for the Scottish Government to adopt it and make any necessary amendments.

He said: "The intention from the outset was to provide a level framework for the 50,000-plus people in this country with autism.

"To give them the same opportunities to access appropriate support, education and employment as every other citizen in our country."

MSPs praised Mr O'Donnell for bringing attention to what was described across the chamber as an important issue. However members went on to say they could not support the Bill.

Consultation

In September, public health minister Shona Robison launched a consultation on developing an autism strategy for Scotland.

And members of Holyrood's Education, Lifelong Learning and Culture Committee said last month they were "not convinced" the Government strategy would be improved by Mr O'Donnell's Bill.

The MSPs said that while the Bill placed an obligation on the Scottish Government to publish an autism strategy, it did not detail what such a strategy should include.

They also raised concerns that introducing legislation for a specific disability could "lead to a perception of two-tier disabilities with some disabilities thought of as being more worthy of a legislative strategy than others".

Committee convener Karen Whitefield said: "Before we consider passing further legislation, resources should be directed towards ensuring that current legislation is being adhered to by local authorities and health boards.

"This Bill has successfully highlighted the barriers facing people with autism and help to focus attention on the crucial role of the Scottish Government in providing leadership across the public sector to surmount those barriers.

"However the committee does not believe that the Bill as introduced is sufficient to achieve this aim."

Strategy

Public health minister Shona Robison also praised Mr O'Donnell for bringing attention to autism provision, and acknowledged his role in bringing about the Scottish Government's consultation on developing a national strategy.

She added: "We don't need legislation to get there, particularly when we can start that process now.

"Following the legislative route would result in delays as the Bill took its passage, and would mean a strategy would probably not be published until early next year."

Labour's Claire Baker said it was regrettable the committee could not support the Bill beyond stage one, however she welcomed the development of the national strategy.

She added: "Hugh O'Donnell's work has changed the direction of government and that is to be welcomed, and Hugh O'Donnell's efforts on this should be acknowledged."

While she could not support the Bill, Conservative MSP Elizabeth Smith said: "Absolutely no-one doubts that we need to do more.

"There is a need to ensure there is no postcode lottery when it comes to support.
"The need for better information, the need for earlier detection in nurseries and schools."

Liberal Democrat Margaret Smith MSP added: "It is quite clear to me that the pressure that Hugh O'Donnell has placed on the government has resulted in them bringing forward a strategy, effectively delivering the first half of his Bill.

"A significant victory."

http://www.scottish.parliament.uk/nmCentre/news/news-comm-10/cellc10-s3-004.htm

Swine Flu Northern Ireland - does the vaccination pose risk?

2011-01-17T14:54:00.000-08:00

The media is having a field day with scare tactics as is the government regarding swine flu. A supply and demand issue has been created, and together with fear mongering it's a dangerous combination where young children and those 'at risk' are involved. Where fear is involved, people can easily tune out common sense or act hastily.

Even though the UK is telling us they didn't buy 'enough' vaccine for under 5 year olds, I think the real reasoning for this story is to panic parents and ensure compliance and uptake for next year. Pharmaceutical companies prepare vaccines and there is no end of money to be made by injecting you and your child. So they create a panic, (we are all going to die), coupled with a demand (there just isn't enough for your child) and what happens is everyone wants some, they are afraid and are worried their child will be missing out or will be 'at risk'.

Unless you are a virologist yourself, you probably won't be reading the scientific literature on flu and unless you are a statistician you probably won't be able to understand the millions of permutations of the collected data. For most of us, we just have to take the government's word for it that flu is widespread and a danger. We also have to take their word for it that our kids need or don't need the flu jab.

Alternatively we can think objectively, do our own research. There is nothing wrong with that, but the minute someone starts talking about the possibility vaccinations may pose a danger, that person is isolated, ridiculed and ignored. What's the fear in knowing what is inside a vaccine and how do we justify what is inside most of them when we know the ingredients can't be good? The government and media, at the behest of the profit making pharmaceuticals have done a very good job on dumbing down the public via scare tactics and silence. Many times I have sat waiting in a GP's office and a mother brings in her new baby for its 'jabs'. I am pretty sure that striking up a conversation with the mother about the potential hazards of those injections would be unwelcomed. Many parents aren't willing to even think about potential dangers. Their doctors and the nurses have been so effective in their 'assurances' that perhaps the parent really has no fear.

http://thinktwice.com/

MMR vaccine uptake by the public has waned and not enough money is being made. Even in Northern Ireland where vaccination rates are higher than the rest of the UK, there is still a lot of profit that has been lost by the pharmaceuticals who didn't get you or your kid to take their vaccine.

To the parents who know beyond a shadow of a doubt that vaccines injured their children, this post brings nothing new (except probably more pain and anger - sorry) But to those of you who are thinking about getting your kids or yourself injected with flu vaccine or any vaccine, I do wonder what your doctor would say, should you ask to see the ingredients of the said vaccines.

If he complies in showing you the ingredients, ask him or her what 'squalene' is or what the effect of thimerosol (mercury) is on a developing brain, much less aluminium and monkey cells. Ask your doctor the effects of squalene (see this link: http://www.novaccine.com/vaccine-ingredients/results.asp?sc=27 ) which is in flu vaccinations and is also blamed for 'gulf war syndrome'.

The link below is pretty shocking. It's a list of what goes into some of the vaccines. A note to Christians (particularly those who are Catholic), take a look at the number of vaccinations using aborted human foetal cells used in some of the vaccinations. Just food for thought.

http://www.informedchoice.info/cocktail.html

Many of you may not be aware that the UK has a vaccine injury recovery scheme.

Here is the link: http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/OtherBenefitsAndSupport/DG_10026664

In the USA the Vaccine Adverse Event Reporting System (VAERS) keeps track of vaccine injury. You can actually see raw data of the reported vaccine injuries across the nation. Please bear in mind, however, that many injuries from vaccinations are not reported and not all injuries in the VAERS system are proven as injury from a vaccination. See link:
http://vaers.hhs.gov/data/index

There is a link (below) to the list of the suggested vaccines for children and adults in the UK produced by the NHS.

If you take the time to compare each vaccine to its ingredient outlined in the link I gave you earlier, you will see that if you comply with the NHS vaccine schedule, your child will receive an awful lot of neurotoxins and organic material that in my opinion just shouldn't be there.

As a parent, maybe it's too scary to think about, or maybe you think you should just take the professional opinion of GP's and paediatricians as gospel and trust that they won't be harming your children with vaccinations. Equally, however, there is no harm in knowing what is inside a vaccine so that you can make up YOUR mind for your child and yourself. You do the best in researching what is best for your child, the best food, the best schools, the best toys, you try to be the best parent. Seriously researching vaccinations is part of being the 'best' parent.

http://www.nhs.uk/Planners/vaccinations/Pages/Vaccinationchecklist.aspx
2 months:

Diphtheria, tetanus, pertussis (whooping cough), polio and Haemophilus influenzae type b (Hib, a bacterial infection that can cause severe pneumonia or meningitis in young children) given as a 5-in-1 single jab known as DTaP/IPV/Hib
Pneumococcal infection

3 months:

5-in-1, second dose (DTaP/IPV/Hib)
Meningitis C

4 months:

5-in-1, third dose (DTaP/IPV/Hib)
Pneumococcal infection, second dose
Meningitis C, second dose

Between 12 and 13 months:

Meningitis C, third dose
Hib, fourth dose (Hib/MenC given as a single jab)
MMR (measles, mumps and rubella), given as a single jab
Pneumococcal infection, third dose

3 years and 4 months, or soon after:

MMR second jab
Diphtheria, tetanus, pertussis and polio (DtaP/IPV), given as a 4-in-1 pre-school booster

Around 12-13 years:

Cervical cancer (HPV) vaccine, which protects against cervical cancer (girls only): three jabs given within six months

Around 13-18 years:

Diphtheria, tetanus and polio booster (Td/IPV), given as a single jab

[][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][]

Harmful Mercury Additive Still Found In Vaccines

http://www.longbeachcomber.com/story.aspx?artID=2149

by Kirt Ramirez

Drug store pharmacies in Long Beach and across the nation already have signs out to “get your flu shot here.” But what they don’t tell you is the vaccines contain mercury – the most toxic element on Earth after plutonium.

Nowadays people can receive flu shots that do not contain the mercury preservative thimerosal, but they are limited.

Because of grass-roots movements like “SafeMinds,” “Moms Against Mercury” and others, the Centers for Disease Control and Prevention (CDC) now provides some thimerosal-free flu shots. But the CDC says on its website: “The majority of influenza vaccines distributed in the United States currently contain thimerosal as a preservative.”

From consulting with local drug store pharmacists from Walgreens, Rite Aid and Albertson Savon, the Beachcomber has learned they do not offer thimerosal-free flu shots.

But the pharmacists are not to blame for using mercury; they simply follow the federal government’s guidelines. The CDC approves of mercury in the flu shot and defends and promotes the toxin, saying it is safe for use in vaccines and that there is no “convincing” evidence that thimerosal is dangerous.

Each flu shot contains 25 micrograms of mercury, CBS News reported.
Several European countries and Japan have already stopped using thimerosal. Russia banned it some 30-years ago.

It appears the best way to avoid mercury in the flu shot in America is to get the vaccine through your doctor by asking for the “single-dose” “no-thimerosal” “no-mercury” flu shot, the Beachcomber has learned. If you don’t ask, you will be given thimerosal.

Mercury is found in “multi-dose” vials, which allows ten doses to be manufactured at once. It is a cost saver for vaccine manufacturers. When a vial is poked by a different needle each time, air enters and can cause contamination if no preservative is used. Thus thimerosal is added, since mercury kills living organisms. This has been going on since the 1930s despite advances in medicine.

Why mercury is still allowed in vaccines remains unknown. Some speculate lobbyists with the vaccine companies play a part. But media coverage of mercury also plays a role. The media largely fails to explain how poisonous the element is.

There is nothing good about having mercury in the body. It’s far worse than lead and can be toxic even in small doses. The Environmental Protection Agency (EPA) considers mercury a hazardous material.

All forms of mercury are toxic but some compounds are worse than others. Thimerosal contains 49 percent ethylmercury, a close relative of the better-known methylmercury – the type that is 100 times more toxic than basic elemental mercury and is found in fish nowadays due to industrial pollution.

Poisonings happened at Minamata Bay and Agano River, Niigata, Japan, where people died during the 1950s from eating fish that was high in methylmercury caused by contamination by factories. Many who survived became mentally retarded.

Iraq used to spray ethyl and methylmercury on wheat seed as a fungicide until people started dying and developing nervous-system disorders later when they ate the bread.

The compound dimethylmercury is even more dangerous. Karen Wetterhahn, a researcher with Dartmouth College, died in 1997 of mercury poisoning about one year after spilling only a few drops of dimethylmercury on her latex glove.

Wetterhahn had trouble pronouncing her words and began losing her balance about six months after the accident, then went into a coma. Her death made headlines and startled the scientific community at the time, showing them how hazardous mercury can be.

Mehmet Oz, MD, of the program “Dr. Oz” said during a show that it takes the human body about six months to eliminate the methylmercury found in one can of tuna after eating it – if no other fish is eaten.

Dr. Oz says on his website, “When mercury gets into our bloodstream, it goes right to our brain and attacks our nervous system. Left untreated it can cause permanent neuropsychiatric brain damage, learning disorders in children, autoimmune disease, and even heart problems,” according to www.doctoroz.com.

“Even if you don’t have these symptoms, mercury can still do you harm. It is the second most toxic agent next to plutonium, so experts recommend minimizing it as much as possible in your diet,” Dr. Oz adds.

According to a heavy metal handbook in the Long Beach City College library, introversion appears to be the most prominent feature in persons affected by mercury.

Other symptoms include gastro-intestinal problems, shyness, depression, confusion and lowered intelligence, as the metal is attracted to the brain and spinal cord.

The term “mad as a hatter” described hatters who became mentally unstable when working with mercury for use in felt hats.

Unlike other metals, mercury can negatively affect human tissues at a concentration of only a few parts per million, which is well-known in medical literature. The argument that a poison is determined by its dosage does not apply here.

During the 1990s more infant vaccines were added to the children’s schedule. During this time babies received up to 187 micrograms of mercury during the first six months of life. A typical dose received by a two-month old who received three mercury vaccines was 125 times the EPA’s daily allowable exposure levels.

During that same decade the number of brain-damaged kids across the country skyrocketed and government officials began to wonder if the mercury being injected into the babies’ bodies could play a role in the sudden “autistic” explosion. Thus mercury levels in babyhood inoculations were reduced starting in 1999. But not for the flu shot.

California’s “Mercury-Free” Act which took effect July 1, 2006 also lowered mercury levels in vaccines for kids under three years old and pregnant women – but like the CDC, the State still allows some mercury in the shots contrary to popular belief and media reporting.

What about pets?

William Ridgeway, DVM, of Long Beach Animal Hospital, was asked about mercury in animal vaccines. He initially did not believe it could be in the drugs.

After looking at product packaging and calling the vaccine manufacturer, he learned some dog and cat vaccines also contain thimerosal. Dr. Ridgeway contacted his colleagues to ask them if they ever heard of such a thing. But they had not, he said.
“I felt duped,” Dr. Ridgeway later told the Beachcomber. “I’m sure the USDA approved it, but I’d rather not give mercury to anything.

Mercury is not a good thing.” He said he would now look for vaccines that do not contain thimerosal.

Jean Dodds, a veterinarian and research scientist who has studied vaccines for 47 years, said, “We do not want to inject mercury into pet animals when they’re vaccinated.”

Jonathan H. Salkind, DVM, who is the medical supervisor for Centinela Feed vaccination clinics said: “Clients should have the right to know.”

Pet owners can request thimerosal-free vaccines which are now on the market and the vets can shop around to find them. Ultimately the clients have the upper hand because they are paying the bill.

Meanwhile, the debate continues whether or not mercury vaccines are safe. The government now concludes they are, but other research says they are not. The same applies to “silver” amalgam dental fillings, which contain 50 percent pure elemental mercury and have been used since the 1800s – and are still used today contrary to popular belief.

That mercury is still used in vaccines and dental fillings in this day and age remains unbelievable. It is unknown if President Barack Obama will address these issues.

And you think your child's teacher or School 'knows' about autism?

2010-11-26T05:12:00.000-08:00

The cage you see below is not new. BF Skinner famed for his work on operant conditioning (verbal behaviour anyone?) built the 'baby box' for his daughter Deborah in 1945, see here: http://cliff.uconn.edu/babyinabox.html
If it's good enough for BF Skinner's daughter, it should have been good enough for this wee boy in Scotland don't you think? I have a spare dog house out the back if anyone wants it - would do for a small child, you could insulate it and put a hatch in it to slide the child's dinner into, no human contact whatsoever required.

------------------------------------------------------------------------------

http://www.bbc.co.uk/news/uk-scotland-highlands-islands-11664558

Autism NI/Autism Ulster and its PAL

2010-07-31T01:40:00.000-07:00

Sorry folks this is going to be a long one, so many issues involved here and in usual Northern Ireland style, the politics are confusing to the untrained eye. I will attempt to explain.

The Parent Autism Lobby (PAL) was launched in July 2009 by the charity Autism NI/Autism Ulster. (see page 3 here: www.autismni.org/news/ebulletinJulyAugust09.pdf. )

I am not sure why AutismNI/Autism Ulster felt the need to create a separate lobby group of its own existing members to separately represent parents. It could be that parents are not being heard within the charity. The Charity claims to have 18 branches across Northern Ireland, branches made up of parents. There are only 1.8 million people in Northern Ireland, so that is one branch per 100,000 people. The rate of autism in Northern Ireland is as yet unknown, but let's say it's 1 in 100. So each branch could serve a potential 1000 members. That's a lot of people, and a lot of voices. Why the need for PAL? Isn't AutismNI/AutismUlster providing a platform for all those voices?

The PAL group was formed at the same time as the launch of the new Northern Ireland Regional Autistic Spectrum Disorder Network (RASDN) in June 2009 www.northernireland.gov.uk/news/news-dhssps/news-dhssps-june-2009/news-dhssps-29062009-health-minister-launches.htm )

Until now, there has never been a province wide autism strategy like the RASDN. Previously, no one was working together. From reading about the RASDN (see link here: www.hscboard.hscni.net/ASD/ASD%20Aim%20objectives%20and%20membership.html )the cosy relationships between some voluntaries and the statutory might well be coming to an end.

It's not the voluntary sector's fault that much of the onus of delivering worthwhile services fell to some of them. The statutory sector abrogated their responsibilities to our kids long ago, preferring to just 'throw' money at the voluntary sector. What service does your child get that is being provided by a Trust that has been useful? Probably not much. Your child receives his/her diagnosis from the Trust (unless you had to go private due to waiting lists). That is usually where their help ends. What they do after that is up to them and as a parent, the maze one has to go to find and access useful help is abominable. Depending on where you live, what you know, and how vocal you are, you may or may not get what your child needs.

Thanks to a forward thinking Health Minister a new autism strategy for Northern Ireland was developed (see here: www.dhsspsni.gov.uk/asd-strategic-action-plan.pdf ) Presently, this strategy is being hammered out and will be rolled out across the province to establish standardised services, services that have been formed not only by medical and education personnel, but by parents and carers. I think this is probably unique within the UK and for Northern Ireland it is a huge step forward, one that has been a long time coming considering the dreadful state of affairs that have existed here regarding autism.

What has this got to do with PAL? Well, I am guessing (purely my opinion) that the powers that be at Autism NI/Autism Ulster (the largest autism charity in Northern Ireland, supported with Health & Social Services Trust funding ) wanted their 'voice' heard.

PAL, consisting of card carrying committee members of the AutismNI/Autism Ulster charity (for example - David Heatley, Vice Chair, Autism NI, and Anne Marie McCullough, AutismNI Belfast Chapter) quickly formed to present themselves as only 'parents'. I think, potentially, as only parents they might separately become members of the RASDN and more importantly, they could 'separately' lobby against it. These PAL members probably wouldn't be able to join the RASDN with their AutismNI hats on but they could do so if they were simply parents. Or maybe they formed PAL to create the illusion that they as parents, weren't happy with the RASDN. Possibly, they formed to bolster the illusion that parents are in support of Autism Legislation (Autism Act). PAL has publicly stated it supports legislation regarding autism repeatedly and across Northern Ireland.

In this regard, they (PAL and AutismNI) have continuously lobbied MLA's (mostly the DUP, notably ex MLA Iris Robinson) to the point where a motion was brought before Stormont on 28 June to launch an enquiry into the RASDN and it's work so far. See here for a transcript of those proceedings: ( http://www.niassembly.gov.uk/record/reports2009/100628.htm ) Scroll down 1/10th of the document to 'Private Members Business. This is pure and unadulterated politics.

In his opening statement, DUP MLA Jonathan Craig states, "That this Assembly calls on the Minister of Health, Social Services and Public Safety to instigate a review into the performance of the Regional Autistic Spectrum Disorder Network Group, including consideration of its appointment processes, independence, accountability, transparency, operating structures and competency...... "Autism NI also claims that the parent and carers representatives on the reference group were hand-picked by the chairperson to provide a positive response on behalf of the Department. Those are very serious accusations. In the best interests of public transparency, I commend the motion to the House."

I think perhaps MLA Craig's real reasons behind the motion are made clear later in his opening remarks when he says, "This issue is not about party politics. Some may want to use that ploy to deflect attention from the real issue. It is about how autism sufferers and the groups that represent them can be best served and represented. Furthermore, it is not about raising up old debates about whether there should be legislation. We are talking about accountability, which is getting to the core of what democracy and transparency are. How best can we serve and represent the people at the heart of the issue?"

Actually Mr Craig, the debate was exactly about those things you deny, and nothing else! Attention is drawn to your argument by your denial that those matters are the heart of the said debate. I am no expert in pseudosciences like psychology, but if you are about to reprimand your child and s/he beats you to it by blurting out, "I didn't touch the biscuits or the sweeties mummy", there is a pretty good chance that is exactly what Jimmy or Jane did.

One would have thought that a charity alleging the representation of so many families and individuals in Northern Ireland would welcome the RASDN and the opportunity for parents, all parents to be part of a process that in the past, had been closed to them. From what I have read about the Network, all of the members are considered equal and have an equal say in what is going to happen regarding autism in Northern Ireland.

Parents know what their children need and certainly the individuals who actually have autism know this, seeing as autism is a part of them, and also due to the fact they live in 'the system'.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Following MLA Craig's opening remarks, Michelle ONeill (Sinn Fein) piped in with her own opinions. She says, "Members will have received a briefing paper from PAL, which is the parents’ autism lobby. From reading that document, it is clear that parents and carers do not have any faith in the newly established Regional Autistic Spectrum Disorder Network Group."

I personally would love to see that briefing 'paper'. If anyone knows how to obtain a copy or has a copy let me know!

Who are these parents/carers Ms O'Neill refers to? One or two, four or five? Who? How is it, that an obscure group that no one has even heard about, gets the opportunity to submit papers to Stormont, papers that can cause such a furore? If you or I started a wee group, would we get such attention?

Anyway, here starts a circular argument. PAL is synonymous with AutismNI/Autism Ulster. PAL's members are also members of AutismNI/Autism Ulster. So basically Ms O'Neill is stating that it's AutismNI/Autism Ulster that is doing the bellowing. There is no 'PAL' per se. As a parent I am delighted that there are parents involved in this strategy and that everyone seems to be working together.

PAL does not represent parents and carers, except those that are within AutismNI/AutismUlster. They certainly don't represent me and there are thousands of parents, carers and individuals in Northern Ireland who have never even heard of PAL and who are not members of AutismNI/AutismUlster. Ms O'Neill goes on..."Parents participating with the network are already reporting consultation fatigue and feel that they are not seeing the outcomes that they wish to see." Do these parents 'feel' this, 'believe' this, or 'know' this? Did those same parents ask AutismNI/Autism Ulster, the largest autism charity in Northern Ireland why nothing much has happened here in the past 20 years?

AutismNI/AutismUlster celebrated its 20 year anniversary recently, and from what I can see, the state of affairs regarding autism in Northern Ireland hasn't changed much. Who is actually to blame here? AutismNI/AutismUlster picked up the gauntlet of providing autism support and services, and they did so with lots of government money and support so who is really accountable for the mess? If AutismNI/AutismUlster wants the 'glory', they also have to have the 'guts' to admit their culpability in the mess.

Anyway, back to 'consultation fatigue.' What is that? I have NEVER been consulted regarding any services my children have received. For sure, I have been offered a few crumbs here and there, but consulted? Consultation with parents regarding services does not exist in Northern Ireland, not with parents anyway. The breadth of this comment is so earth shatteringly patronising.

Many of the parents I know are crying out for opportunities to be heard. Some of them write books, some of them write blogs (like me) just to be 'heard'. No one is listening. How many times have you been patronised by some so-called professional about your child, and about the 'complexity' (translate - no money) of his or her condition. How many times have you been offered tea and sympathy instead of answers by some of the autism 'charities'? If anyone came to me and actually asked for my opinion, I think I would faint with shock. If you are reading this Ms O'Neill, please explain to me the beliefs upon which you make such interesting conclusions, because you have absolutely no facts to base them on. Pure conjecture. Clearly, AutismNI/AutismUlster lobbyists have been successful where you are concerned. In my opinion, the free junket to Washington (2007) you received, paid for by AutismNI/Autism Ulster may have sweetened the pot for you as well, regarding your 'support' for the charity. (see www.niassembly.gov.uk/health/2007mandate/press/PNHSSPS12_07.htm.

Ms O'Neill's comments about consultation 'fatigue' were parroted from page 17 of this document prepared by AutismNI/Autism Ulster - (www.autismni.org/10708%20Autism%20NI%20Report.pdf ) No facts here I am afraid. Sinn Fein, not particularly known for 'independent thinking' probably works very well for AutismNI/AutismUlster. I despair of our MLA's that they voluntarily offer themselves up as political pawns. Have the likes of Michelle O'Neill et al even read a recent research paper? Do they consult with anyone outside of 'parochial' Northern Ireland? No wonder we are so insular and provincial. I digress.

Back to this document prepared by AutismNI/AutismUlster. It is a self congratulatory essay on how wonderful the charity is. It describes the RASDN and other autism related projects as 'knee jerk' and states that, "By 2010 parents of children with ASD have been ‘consulted out’. There is a feeling of research fatigue and many parents are critical at the slowness of Health and Social Care and Education to think, act and respond strategically and in unison to the needs of individuals with ASD. "

Well, AutismNI/AutismUlster, you have had 20 years to change that, but you didn't.
I do have to give it to AutismNI/Autism Ulster though. It does its lobbying work so well that politically opposed parties like Sinn Fein and the DUP actually agree on something. Jonathan Craig and Michelle O'Neill are on the same page here. Wow!

Maybe the charity could expand its lobbying work to be an all party arbitrator on other issues in Northern Ireland? Maybe AutismNI/Autism Ulster should address policing and sectarian issues. Of course, they are on the same 'page' because they all want the 'kudos' involved in bringing forth an autism act into Northern Ireland. For some reason these people think that a law outlining the rights of persons with autism would be a good thing. If you talk to people who have disabilities other than autism you will soon find out that such an act would be an affront and ultimately damaging to anyone with a disability. The politicians aren't listening to the parents whose children have rare disorders or whose children have conditions like muscular dystrophy or cerebal palsy. Where is their 'act'?

Ultimately, i believe an autism act would damage my child. Section 75 of the Disability Act is more than sufficient for my child. Again, very little thought has gone on here, it's pure politics and many politicians want a piece of the autism 'cake'. They need to be seen to be doing something, anything, just to get on the autism band wagon. The phrase coined by the republican movement can be inserted here in that people with autism, 'haven't gone away you know'. Quite the opposite in fact and many more voters in the future will have autism in their lives. Politicians want to appear 'caring' about the condition now, to ensure they get those votes. Pity they are so misdirected.

Another reason why the DUP and Sinn Fein are together on this issue, is down to only one thing, they want your votes. I do believe that generally people are good and want to do good. In this instance, however, MLA's have been duped. These MLA's might presume that AutismNI/AutismUlster too, must be a 'good' charity. After all it is very vocal, has lots of staff, has political influence, and in the past had lots of money given to it by Trusts and by its membership. Does that mean there is proof that it does good work? Compared to what? How do we measure 'good'?

We, in Northern Ireland, are still the 'poor cousin' compared to the rest of the UK regarding autism. The very fact we are only getting a joined up strategy now, thanks to the RASDN, says it all. What has AutismNI/AutismUlster or any other charity working with autism been doing for 20 years?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It seems that AutismNI/AutismUlster brokered a 'deal' between itself, the government and the National Autistic Society (NAS) to keep the NAS out of Northern Ireland. See here:
www.autismni.org/about/history.asp (retrieved on 30 July 2010) from the charity's 'our history page. It states that in the year 2000, "The National Autistic Society (U.K) set up a duplicate service to Autism NI in N.I breaking an earlier partnership agreement. An enquiry was launched by the NAS Board and Autism N.I’s complaint was upheld. The NAS withdrew the following year due to funding difficulties in England." (whatever that means) Apart from airing their dirty laundry in public on the website, the charity looks much more like a business and its inventory includes you and your kids!

It appears that having exclusive access to you and your child was part of the 'bargain'. The NAS, a charity with 40 years experience providing a wealth of information and advice to parents and individuals was stopped from setting up here in Northern Ireland. They did not provide a 'duplicate' service, they would have provided a service, full stop. Check out their website here: www.autism.org.uk/about-autism/autism-library.aspx This is the NAS' 'library of autism resources. It's immense. Does AutismNI/Autism Ulster claim that the NAS is a duplicate service?

Take a look at the rest of the NAS website, particularly their research. It would take days and days to get through all the helpful information, the studies, the projects, the schools, the support networks. Takes about half an hour to get through the website of AutismNI/Autism Ulster. What do they actually do?

They are vocal, but the real issues here in Northern Ireland regarding our children remain untouched by them. A prime example of useless and worthless information lies in AutismNI/AutismUlster's 'links' page. (see here: http://autismni.org/familysupport/links.asp. When you open up all five of the 'further reading' links, on their website, one of them is 'for sale' and another is a 'casino' site. Another of them provides about six pieces of information from an american parent. The other two, one of which is under construction are both selling something. With millions, maybe billions of links to choose from, is this the best a charity with 20 years experience, can do for you? Where are the links to the NAS or to the locally based 'Aspergers Network'? Why bother at all?

Are you raising funds for PAL and AutismNI/Autism Ulster? Your money, in my opinion, certainly is not being used for awareness raising or website design. My own blog has more links to good information than this 20 year old charity, a charity that has been funded for years with public money. I don't 'like' charities that purport to help but in fact hinder vulnerable children like my own, as well as their families. I don't see that AutismNI/AutismUlster is about empowering families or informing parents. I don't see it campaigning for mental health services, or intervention choices. What I see is a charity more interested in fundraising than anything else.

The motion at Stormont was reprehensible. It was an assault on my common sense to read the transcript. The reasoning behind the move to 'take it to Stormont' is clear in David Heatley's comments to the Belfast Telegraph on 28 June when he said, "We view the action plan as a huge missed opportunity and misuse of resources. It provides convincing evidence that only with autism legislation, which is currently being drafted by the Assembly, will come the requirement for joined-up planning across government departments and the recognition of autism as a disability within the terms of the disability discrimination act".see: www.newsletter.co.uk/news/Assembly-to-debate-39insufficient39-autism.6387183.jp .

PAL and AutismNI/Autism Ulster have one objective, to steam roll an Autism Act in Northern Ireland. The two organisations are one and the same, their goals are one and the same.

To the RASDN, I applaud you all. For once, in Northern Ireland, things might be moving. Who is it that is not happy with that? - the biggest autism charity. Something clearly not right with that picture. Northern Ireland desperately needs a strategy!

With the current financial crisis, Health Trusts are going to ground in terms of their spending. I don't think there are many disability charities in Northern Ireland who received the kind of funding that AutismNI/Autism Ulster did. The autism gravy train has stopped and all of the charities, including AutismNI/Autism Ulster will have to find other ways to make their money and keep their staff on wages they are accustomed to.

Unlike the tea and sympathy I have been offered so many times by those individuals/groups purporting to offer help to me and my children, I couldn't muster returning that favour to PAL/AutismNI/AutismUlster. So much needs to be done in Northern Ireland for our children and their future and it hasn't happened. Change is well overdue.

As for the DUP and Sinn Fein, I was under the impression that as political representatives they are elected to represent their constituents, not charities.

"Affluence means influence"
Jack London

and another.....

If it talks like a duck, walks like a duck, it's a duck.

Demise of the Summer Scheme - Apathy

2010-07-30T00:24:00.000-07:00

In the last two years, the local summer schemes my son attended have both closed down. Their closure was not down to funding, but rather down to lack of interest. The funding was there, the kids were not.

The summer scheme my son attended this year had to end 2 days early. Out of the 20 parents who originally agreed to send their children to the scheme two weeks ago, only eight weighed in with their children. The scheme was excellent, the staff were motivated, fun and excited to work with a full compliment of children who had a range of abilities. The premises were safe, the activities were well structured and varied and the scheme was run in a high density area of population. It was assumed it would be fully subscribed and it was. Problem is 12 parents who signed up didn't bother to show up with their children.

The news was awash with stories of summer schemes for 'special' kid losing their funding. This was not the case where I live. The summer scheme that parents were complaining about most vociferously was in the Down area and was actually a finite program that was going to end anyway. Where I live there were numerous summer schemes available for my child that were inclusive. Due to lack of attendance, I doubt many of them will be there next year.

Two years in a row this has happened to my child. A scheme my child attended last year closed down a week early for the same reason - apathy. The two week scheme my child attended this year made a huge difference to him. He emerged after two weeks a different child, more social, more language and with more skills. I am sure if he had the chance of a four or even eight week scheme he would have gained many more skills and confidence. You 12 parents out there who decided not to bother to send your child to this particular scheme - what was your child doing for those two weeks? Where my child was making new friends, and engaging in art and music, cooking and learning how to play ball games, and use a computer, what was your child doing?

I have asked the leaders of the scheme for the names and phone numbers of all the parents who originally signed their children up to this scheme, many of whom have children on the autistic spectrum. Obviously the Leader isn't going to divulge that information. But, I want to ask those parents personally why they opted out. Why did they take up places and not avail of them? They prevented other children from benefitting from the scheme. Essentially, they ruined it for everyone else. No scheme next year. Ta very much!

The apathy I have seen both this year and last year by parents regarding summer schemes, particularly inclusive summer schemes has been a severe detriment to my own child. My son needs to have children to play with over the summer. I can buy a lot of things, but I cannot 'buy' children to play with him, to interact with him. Summer schemes are crucial for his continued development. Neurotypical children have all kinds of opportunities for play and interaction both during the school year and outside of it. Other children do not seek my child out to play with him. His language is delayed, his playskills are only just emerging. Kids generally don't want to know him. Watching him at his summer scheme, however, playing tag and interacting with kids of all ages made my heart soar. The fact that you parents out there (all 12 of you) who decided not to send your children to the scheme has left me feeling confused and angry. I echo my son's words to you - 'no more summer scheme mummy?'

When this particular scheme is not available next year, you 12 parents will no doubt harangue and scream at how your children's needs aren't being met over the summer. If you do, I will be there too, reminding you of your apathy.

Victimhood doesn't work with ASD. Action does. There are many many parents and carers in Northern Ireland who are fighting tooth and nail against this kind of apathy and all the forces out there that keep our children in limbo. I wonder if your voices are part of these. If so, you do a disservice to those parents and carers and invididuals who are actually doing something. Actions speak louder than words and this time, all 12 of you let all of us down.

I propose that summer schemes start charging parents in advance. £50.00 per week should suffice - non-refundable. Funders of these schemes need accountability. Without it, they won't fund. Why would they? Why should precious money be wasted? It's time that some parents acknowledge their tacit participation and contribution to the 'problems' our kids and their families face regarding the issues surrounding having a child on the autistic spectrum.

I fear that across Northern Ireland, there are a lot more than just '12' parents. I suspect a lot of parents conjure up all kinds of excuses for not engaging with what is out there preferring to tar it all with the same brush. Unless we know and experience what is available, how can we make it better? Who will listen to your voice and your child's voice if you don't have the experience of participation?

I hear parents complaining all the time about what there is, or is not available for their child. It is so easy to complain - it is not easy to get your hands 'dirty' and do the work yourself required to change things. Try and fund raise £2,000 per week to run a summer scheme and come to tell me how 'easy' it was. Guaranteed, if parents had to fundraise for summer schemes themselves, their children would definitely be in attendance.

Maybe next June when it is announced this summer scheme and others are no longer available, the unemployed Leader of the scheme will point out to me the names of you 12 parents as you 'demand' more services. I will ask my son to remind you that 'you did it' and get him to ask you 'why?'

To quote the old saying, 'empty vessels make the most noise'.

FLASH NEWS - Gut test could make autism preventable

2010-06-09T06:14:00.000-07:00

see: http://www.telegraph.co.uk/health/healthnews/7801077/Autism-test-could-make-the-condition-preventable.html

Autism test could make the condition 'preventable'
Autism could be turned into a "preventable" disorder after British scientists develop a simple test for the condition.
By Richard Alleyne, Science Correspondent
Published: 6:00PM BST 03 Jun 2010

Diagnosis of autism has always been difficult and often the condition remains unrecognised until too late for treatment to have a maximum effect.

But now researchers at Imperial College London have discovered a potential way of spotting the disorder that they hope could ultimately lead to a test for children as young as six months old.

That would mean that intensive behavioural and social treatment could begin before the disease has caused any permanent psychological damage.

Professor Jeremy Nicholson, the author of the study, said: "Children with autism have very unusual gut microbes which we can test for before the full blown symptoms of the disease come through.

"If that is the case then it might become a preventable disease."

It is estimated that around one in 100 people have autism, meaning there are around 500,000 in Britain.

The condition covers a wide spectrum of disorders with cases ranging from relatively mild problems with social interaction to more severe difficulties in behaviour such as not speaking or copying, rigid routines and social isolation.

While the causes of the condition remain a mystery, early and intensive treatment is known to help alleviate the symptoms.

The problem is that diagnosis can be difficult and often relies on waiting for the symptoms to develop by which time a lot of damage has been done.

At present, children are assessed for autism through a lengthy process involving a range of tests that explore the child's social interaction, communication and imaginative skills.

Early intervention can greatly improve the progress of children with autism but it is currently difficult to establish a firm diagnosis until children begin speaking.

The latest breakthrough shows that it is possible to distinguish between autistic and non-autistic children by looking at the by-products of gut bacteria and the body's digestive processes in the children's urine.

Prof Nicholson, who worked with the University of South Australia, said he hoped that the test, which could cost as little as £5, could one day be used in children as young as six months old.

Most children are not diagnosed until they are at least two.

The researchers are keen to investigate the link between the learning difficulties and the gut microbes further.

If such a link was established this might lead to "probiotic" treatments or cures.

The researchers reached their conclusions by using a Nuclear Magnetic Resonance Spectroscopy which is able to analyse the make-up of chemicals.

They used the machine on samples three groups of children aged between three and nine – 39 children who had previously been diagnosed with autism, 28 non-autistic siblings of children with autism, and 34 children who did not have autism and did not have an autistic sibling.

They found that each of the three groups had a distinct chemical fingerprint. Non-autistic children with autistic siblings had a different chemical fingerprint than those without any autistic siblings, and autistic children had a different chemical fingerprint than the other two groups.

Now they want to test the technique on a larger group of younger children in the next two years with the idea of having it available within five years for full medical approval in five.

The findings were published in the journal of Proteome Research.

Deepa Korea, Chief Executive, Research Autism said, "We welcome any scientifically robust research, which has been subject to the highest research methodology, that advances the improvement of early diagnosis of autism spectrum conditions, so that children can receive appropriate support from as early an age as possible.

"We recognise that more work needs to be carried out in this area."

A National Autistic Society spokesman said "Studies which consider differences in urine samples are interesting, but before these findings could be applied more widely, they would need to be tested and scrutinised on a much broader scale.

"This research appears to focus specifically on children with gastro-intestinal (GI) disorders as well as autism.

"Whilst some children with autism do have additional gut problems, this is not true for everyone, so the differences observed in this study, might not be representative of all people with autism.

"The most important thing that children with autism the right help and support as early as possible."

NAS Launches Shocking Report on our Children's Mental Health

2010-06-09T00:07:00.000-07:00

"Autism is not a mental health problem. But a recent
study showed that as many as 71% of children with
autism have mental health problems, such as anxiety
disorders, depression, and obsessive compulsive
disorder (OCD), and 40% have two or more."

The NAS report investigates the impact of mental health problems on children with autism and their families. The report focuses on how the CAMHS system isn’t meeting their needs and what can be done to improve the outcomes and experiences of these families,while recognising the wider responsibility of other agencies to promote the emotional wellbeing of this group.

You can access the new report here: http://www.autism.org.uk/get-involved/campaign-for-change/our-campaigns/you-need-to-know.aspx

Glencraig 'Steiner' and Camphill Communities

2010-03-03T13:46:00.001-08:00

I find it appalling that the Glencraig 'Curative' School in Holywood, has children who attend there, fully funded by the Education Boards in Northern Ireland yet we do not have an autism specific school for our children. (see: http://www.glencraig.org.uk/)
Link to the Holywood Steiner School: http://www.holywood-steiner.co.uk/

Tens of thousands of pounds per year is spent to fund individual children with special needs to attend this 'curative' school but to what end? Has anyone in Northern Ireland actually bothered to look into the teachings of Rudolph Steiner? Funny how if you want funding for an ABA program for your child you will have great difficulty, probably a tribunal, on your hands in order to get it. But, if your school Board thinks your child is a 'no-hoper' you might get a paid-for placement at the Steiner School. If ABA has little peer reviewed research backing it up, Steiner has absolutely none, yet it still gets funded.

Who in their right mind would submit their child to the teachings of these lunatics? How did Steiner's Anthroposophic ideals find their way to Northern Ireland, much less to the school boards who fund the school? He did have an affinity for Ireland, maybe that's it. Or maybe the schools thought that Ireland would be a good place, particularly Northern Ireland because of the political divide between the society and of course, schools. Steiner schools are no less politically motivated but they aren't 'catholic, nor are they 'protestant', so maybe someone at departmental level figured the school would be a kind of 'integrated' school? Integrated into what is the question? Give me religious sectarianism any day compared to anthroposophy!

I do not know, maybe someone has some answers? As a practicing Christian, I would never send my child to a 'Steiner' School. As a person who has a modicum of common sense and who is by no means a navel gazer or new ager, I also would not send my child to such a school, particularly a vulnerable child who has autism and who may take everything these people say literally.

If you google Rudolph Steiner or Waldorf School together with eco facsist, screwball and brainwashing/cult/ Anthroposophy you will form a picture of how unfortunate children with ASD and other difficulties as well as adults in Northern Ireland, this very minute are having their brains melded and their opportunities and potential scuppered by this movement.

Most of you can't get an OT to pay for a pencil grip for your child, but some 'lucky' (God help them) children are being funded by education boards year after year to attend schools such as these.

Here is an account of a Rudolph Steiner School in Wisconson USA. Sounds like a cult to me, in fact google brings up thousands of hits on cult like behaviour of these schools.

http://www.waldorfcritics.org/active/articles/lombard.html

Here is a thread of messages (over 1000) from UK based 'Mumsnet' from parents outraged by what the Steiner Schools have to 'offer' - pay particular attention to what one mother has said regarding Steiner's beliefs about children with development difficulties. http://www.mumsnet.com/Talk?topicid=education&threadid=487528-steiner-waldorf-schools-and-institutions&pg=1&go.x=14&go.y=8

'Here are some Rudolf Steiner quotes'
• “[A]n island like Great Britain swims in the sea and is held fast by the forces of the stars. In actuality, such islands do not sit directly upon a foundation; they swim and are held fast from outside.” [Faculty Meetings with Rudolf Steiner, p. 607.]

• “[I]t is not that the planets move around the Sun, but these three, Mercury, Venus, and the Earth, follow the Sun, and these three, Mars, Jupiter, and Saturn, precede it.” [Faculty Meetings with Rudolf Steiner., pp. 30-31.]

• “If the blonds and blue-eyed people die out, the human race will become increasingly dense.... Blond hair actually bestows intelligence. In the case of fair people, less nourishment is driven into the eyes and hair; it remains instead in the brain and endows it with intelligence. Brown- and dark-haired people drive the substances into their eyes and hair that the fair people retain in their brains.” [Health and Illness, Vol. 1, pp. 85-86.]

• “[Science] sees the heart as a pump that pumps blood through the body. Now there is nothing more absurd than believing this, for the heart has nothing to do with pumping the blood.” Freud, Jung, and Spiritual Psychology, pp. 124-125.]

• “There are beings that can be seen with clairvoyant vision at many spots in the depths of the earth...Many names have been given to them, such as goblins, gnomes and so forth...Their nature prompts them to play all sorts of tricks on man....” [Nature Spirits, pp. 62-3.]

• “[T]he brain and nerve system have nothing at all to do with actual cognition....” [The Foundations of Human Experience, p. 60.]

• “In the course of its development, the good portion of humankind will learn to use the Moon forces to transform the evil part [of mankind] so that it can participate in further evolution as a distinct earthly kingdom.” [An Outline of Esoteric Science, p. 393.]

• “The use of the French language quite certainly corrupts the soul.” [Faculty Meetings with Rudolf Steiner, pp. 558.]

All too surreal.

When your child completes the primary/secondary Steiner school,and enters adulthood after years of being cloistered away from real society and a real life (and is fully brainwashed, probably along with you as well) they can then be moved on to the Camphill adult wing and live there forever (if you can pay for it). Your child will be given duties of mucking out barns, growing vegetables or cooking. They will celebrate occultism, harvest moons and will be forced to suffer an unending turnover of staff, many of whom are students from abroad. They won't be using computers, their access to the outside world will be on the school's terms, not theirs and their psyches will undoubtedly be messed up by the Steiner philosophies (aka bunkum).

The mind boggles that Northern Ireland Education Boards will pay for this. Not surprising, I suppose. Muckamore is closing so I guess you could call Glencraig/Camphill the new mental hospitals - with grass.

Educational Apartheid aka special schools

2010-02-17T10:48:00.000-08:00

I recently found this gem of an article among many others equally well written. I have asked for permission to copy same and gladly do so. In light of the lip service happening in Northern Ireland currently regarding 'inclusion' and Catriona's special education botch-up, this article permits the reader to see the real reason why we and the rest of the UK continue to fail our children who have labels and difficulties.

I will be writing about the segregation of our children in more detail later, but this article provides a primer. I don't know how long parents in Northern Ireland will accept the crumbs doled out to them by school boards regarding the education of their children with special needs but I do know that one fine day parents will wise up to the fact their kids have been shafted, their lives permanently and negatively affected.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The Struggle for Inclusive Education – A Struggle Against Educational Apartheid
(www.inclusion-boltondata.org.uk/FrontPage/data1.htm)
by Joe Whittaker and John Kenworthy

An educational system that segregates disabled people is increasingly offensive to all learners. It damages relationships between disabled and non-disabled people. It is grossly ineffective and a waste of our most valuable resource – human beings!

We have to be more creative in the way we value and actively encourage difference. More direct action is required to end this educational apartheid.

"Change the label - say black instead of disabled and see if anybody would tolerate that kind of prejudice as it is against a disabled person."

Jim Hansen
Headteacher of a Special School in Canada

To exclude learners described as having Special Needs, from their mainstream local schools and colleges, is an injustice to ALL learners. Such an injustice demands that we look more creatively at the way we operate within educational systems as they now exist, and begin to change our legislation and our practices. We have to find different ways of hearing each other, we have to find different ways of seeing each other, we have to find different ways of learning together and more importantly we have to find different ways of being together. Simultaneously, we must start articulating a vision for the future which will influence the wider political structures and encourage the growth of local mainstream schools and colleges in which every learner belongs, in which every learner is actively encouraged to contribute, and in which those contributions are received and valued for their richness and diversity. Those who administer and those who teach have to recognise and value changes necessary for learners to make their personal and unique contributions, they have to learn that different contributions can be valued equally to the benefit of the whole school, and that difference should not be sacrificed at the altar of the artificial and often arbitrary standardisation of learners.

We have to plan now for the inclusion of every child, to be supported into their local mainstream school and college. We have to provide support that is valued and so effective it could be compared with the support provided to Head teachers or Principals, where such individuals can function within an organisation without necessarily having to write, without necessarily having to understand all that goes on around them, without necessarily having to move themselves around the building and without necessarily having to accept support systems which do not meet their particular requirements. In advocating such a direction we recognise that, at the present time, not all mainstream schools and colleges are organised in such a way as to ensure the smooth integration of previously excluded learners; not all mainstream schools and colleges appreciate the benefits of inclusion; not all mainstream school and colleges appreciate the contributions of their existing learners.

Mainstream educational systems must be improved and made more welcoming and offer more hospitality to ALL learners. However, regardless of the criticisms legitimately directed at the local and national organisation of some mainstream schools and colleges, their crucial advantage is that they have a place within a local community, such a presence can provide the scrutiny of ordinariness which can inhibit often bizarre and sometimes damaging practices we have adopted in segregated settings. Such a location also allows for links to a wider community with a potential social network which can enable the learner to translate her/his presence into meaningful relationships within and beyond the school gates - relationships which, arguably enable us to sustain and give life.

The presence of ALL learners is the first step in the eradication of irrational fears about difference - differences which are, at present, used as license to exclude learners from meaningful friendships and participation in their local communities.

Communities, like mainstream schools, are not always organised in ways that accommodate and value difference. Communities are not always friendly and welcoming. Communities do not always recognise the value of richness and diversity in relationships. We believe communities suffer as a result of such deprivations. It is our view that communities and schools will continue to be ineffective and dysfunctional without the presence and gifts of ALL learners. Integration is the first step to a very important process called inclusion.

"Integration is traditionally interpreted as the amount of time a learner spends in a situation with other learners who are not disabled – the deep meaning of integration is expressed in terms of "inclusion", "belonging", "unity". It is not a placement. It is a philosophy that says classrooms and communities are not complete unless all learners with all needs and gifts are Welcome".
Marsha Forest, Director
Centre for Integrated Education,
Toronto, Canada

Such a change within the educational system cannot be seen in isolation from the wider political activities. Indeed some might argue that it is directly a result of the highly competitive climate, created by current political ideologies, which makes the philosophy of inclusive education a practical impossibility.

"Despite the fact that we are now witnessing the most explicit political interference on the part of the government in the field of education, there is an orthodoxy abroad which views any reference to the question of politics as being biased, irrelevant and counter-productive. This is particularly applicable to those who would seek to raise the question of politics in relation to special educational policy or practice. To do so is to raise doubts about the nature of your commitment and whether you have the proper interests of individuals with learning difficulties in view.

Barton. Politics of Special Education.
1988; p.5-6. Falmer Press

In spite of recent government dictates which would support the view of Barton, we will argue that the effective inclusion of learners cannot and should not be a choice. It is necessary to right a national injustice. It is urgent that we work more creatively to overcome such injustices. Inclusive education highlights the potential value for a "whole school". We have to articulate a greater vision and look beyond the present fragile initiatives which come from shallow educational myopia.

We recognise the very powerful constraints and the conscious attempts to perpetuate a climate of moral intimidation where special education is concerned. To argue the inclusion of all learners who have been labelled as having special educational needs in any organised way, or to question the existing status quo in special schools, is to be "playing politics" with "vulnerable learners and their families". We see the segregation of a learner away from their local friends, away from their local community and schools, as a highly damaging political act. The practice is one that would appear to have the tacit or overt support of people across a wide political spectrum. It is striking that members of the political left, who quite correctly struggle to eradicate racism, who struggle to eradicate sexism and other barriers within our society, remain quiet at the forced segregation of disabled learners, away from their local schools away from their families and away from their communities. We should recognise that there is no consensus within any part of the political spectrum. There is a desperate need for more creative debate about how we are able to embrace diversity and rid ourselves of the scandal of exclusion of disabled learners from our schools and colleges.

We do not take a neutral position on inclusive education, this would be equivalent to taking a neutral position on racism and sexism. We believe that the present system of segregated special schools is a form of apartheid, that it is equally damaging to the community to separate learners with different learning needs as it is to reject the contributions of people simply because of the colour of their skin.

It is important to recognise the parallels with other forms of injustice and segregation. It took women 80 years of struggle to take their rightful place in University life, the reason for their initial exclusion was because it was "scientifically" proven that women's brains were smaller than the male. When women first entered University in the 1870's they had to have a chaperon, they were not allowed into the main body of the University, they were expected to wait in ante rooms during break times, they were also expected to attend courses to prepare them for the "Real" university life, these courses were called "Springboard Courses", it was no doubt assumed that full inclusion would be damaging to their moral as well as their educational development. (extracts from a feature on Radio 4 Women's Hour Programme 9.12.94.) We ask anyone working in the segregated sectors of education to consider the parallels with learners labelled as having learning disabilities. Surely we should not expect people to wait another 80 years to right a similar injustice?

It is not our intention to justify inclusion. The arguments for such a philosophy have been won. We no longer justify racism, but fight it. The same struggle should apply to segregation in education. We seek to highlight ways to promote inclusion and also highlight some of the barriers it will be necessary to challenge in order to succeed.

"Examples of successful integration of children with almost any given disability, irrespective of severity, can be found somewhere in the United Kingdom... The overwhelming conclusion is that where integration does not happen it is because people with power to make changes do not want children with disabilities in our schools."

Booth T. 1983.
In Fulcher Disabling Policies. 1989 p.164. Falmer Press.

We have to demonstrate an active commitment to ending segregated schools and segregated units in mainstream schools and colleges. The illogicality of the present ritual of exclusion is quite bizarre: We take young learners, we label them as having a wide range of "special needs" - the labels can be many and varied - with very little consensus as to the origins or meanings of the label, once the label has been successfully attached, it provides a license to have a learner removed from their local school and community. Having removed the person, we restrict their opportunities for developing friendships with others. We spend large sums of money transporting them on a daily basis, often in unsafe conditions (New Learning Together Vol III. J. Hall), to separate units outside their local community. Once we have excluded the learner we surround them with a multitude of "experts" who succeed in restricting their curricular activities by designing even more therapies and "special practices". Once we have collected sufficient numbers of children together, we make "statements" about them having the same "special needs".

It is rather ironic that after spending the whole of their school life in a segregated special school, the young learner is often presented with an "Independent Learners Programme" or "Preparation for Adult Life Programme", probably lasting for the final term of special school. Such programmes are expected to equip learners with the necessary skills to enable them to re-establish their place once more within the local community - the same community from which they were removed in the first instance. However, at this stage in their life, they have much more difficulty in establishing the network of relationships which were more likely to have developed as a result of their presence within their local community.

There is a great deal of anecdotal evidence which highlights the damage done to ALL when we segregate disabled children from their non disabled peers. We only have to ask the likely destination for children attending segregated schools, they tend to go to segregated college provision or segregated day centres, often living in segregated housing and segregated employment.

The year 2000 provides us with a benchmark by which time we should have planned the inclusion of ALL learners into their local mainstream schools colleges and universities. We cannot wait for legislation alone. The Warnock Report, which underpinned the 1981 Education Act, was hailed as the Integrationist Charter some fifteen years ago. This legislation has proved to be overly bureaucratic and unjust (CSIE Report 1992.) The 1993 Codes of Practice still fails to prevent the forced exclusion of disabled children from their local schools and communities.

We need a major shift in thinking about the value of schooling and the learning process. The present "special education system" is based upon a "deficiency model" or " medical model", which assumes that something is wrong with the individual. The special school and its staff are there to "put the wrong right", to "fix the child", to "get them ready", to go back into society. However, it is the deficiencies within the systems that fails to accommodate the diversity of abilities that we must address.

We should challenge the multitude of professionals who are in the lives of learners in segregated schools. We ask that we look at the systems in which they operate - systems which are damaging the lives of learners by barring their way to a rightful place within their local community and ask them to justify such injustice.

Since one form of segregation tends to lead to further segregated services, we challenge the local authorities to look seriously at their long term plan for the two-year-old child they will exclude and segregate tomorrow? What is that child's future within the present system?

We should encourage parents, and learners who have been negatively labelled, to question why the present segregated educational system exists, and to call for a more serious critique of the so called "special methods" and "specialisms" which exist in segregated special schools and units.

Jo is an eight-year-old child who has been labelled by the system as having severe and multiple learning disabilities. She is also blind. Her mother, Pat, struggled for over two years to get Jo into a mainstream primary school. It was a difficult struggle. The following, highlights some of the contrasts between the segregated special school and the mainstream primary.

At segregated school, Jo would come home with a dairy, once a week, on Friday. It didn't depend on much I had written the previous weekend, as the teacher usually wrote "everything is fine -too busy to write this week, I'll write more next week". That next week never came. I never knew what was going on. It was like suffering from amnesia for part of the week.

At mainstream school I get reports every day - all the little details helping me understand Jo's day. They don't come in the form of written statements, but the many comments, often unsolicited, come from the children. The class teacher and Jane, Jo's assistant, give me a brief but detailed report which is balanced and correct, which I can evaluate. It used to take Jo 1.25 hours to get to school using the Local Authority system. The transport was unsafe - children were expected to ride in their wheelchairs, even though they hadn't been tested for car seat safety standard, and the harness the authority used were just to keep children in their seats. I had to arrange for a special car seat myself, to be fitted. I compromised, and it was tied onto the seat with rope.

Now it takes just 10 minutes to get to her new school. Once we get to school, Jo's push-chair is often taken by one of the passing children who guides Jo safely into school. The person who pushes her never stops talking, the lollipop man always greets Jo., I follow on behind, chatting to other children or parents.

It came as a great shock to me that much of Jo's day in the special school was spent slumped over in a chair, dribbling, unable to breathe properly. Jo does not use speech and nobody spoke to her, hardly anyone touched her, kissed her, was loving towards her. The staff often seemed very busy, they often told me that I was being unrealistic to expect them to do the most simple things for Jo.

Jo would sit in a row with the other non-ambulant children in the playground, most of them were slumped over in their push-chairs and wheelchairs, none of them could speak. The ambulant children would be playing at the far side of the playground with the apparatus. This. I was told, kept Jo "safe".

Now at her real school, Jo sits with her head upright. The children are encouraged to talk to her and they do all the time. They read her stories, tell her jokes, sing to her. While they are doing this, they are touching her, wiping the dribble from her mouth, moving a hair from her eyes, making sure her waist strap is not too tight. They put cream on her face, they wash her hands before lunch. If they are writing, they place a pencil between her fingers. They laugh when she laughs and they get worried when she cries. At playtime, they play with her in the playground, pushing her around at various speeds, negotiating paths through football games.

Whilst at the segregated school Jo would have to eat her full lunch and have a drink in 20 minutes, even though at home it would usually take me at least 30-40 minutes to feed Jo and another 20-30 minutes to give her a drink. Jo had to sit in an upright chair, with a lap strap, a large wedge between her knees which was very difficult to clip into or out of place, her feet were strapped down and a large grey table was also fixed into position. It was thought that if Jo associated a good thing with sitting up, it would teach her to sit up. Jo has very little head control, so her head would be forced back, this would cause her mouth to open and food would be pushed in. Jo screamed a lot at special school.

By spending time with Jo, Jane has learned to feed Jo in a way that she enjoys. Jo is not strapped into her chair, she is not rushed, she has her friends around, she does not scream now. By watching Jo eat and watching Jane feed Jo, the other children have come to understand that Jo cannot feed herself or drink herself, but now her friends make sure she does not go hungry or thirsty.

When Jo went to the special school she was being taken out of her local community. Jo had no presence, people didn't know her, she certainly had no friends of her own age. Now, in her local school, she has many friends, not just school friends, but people of different ages. Brothers and sisters of Jo's classmates, friends of friends know of Jo.

Jo and I used to need organised respite care when she was in the special school. Neither of us liked it. The specialists had suggested it, therefore, it must be right. For so long, I believed that the special schools, with all the experts, knew what to do with Jo. I now know this is wrong.

We don't need respite care any more. Jo now stays at her friends houses, like any other child, she sleeps in the same bed as her friends. Her school friends stay the night at our house. Jo and her friends now go out together during weekends and holidays. She is invited to parties and out to play, and even though Jo does not use speech, her friends will telephone her. Jo knows she belongs.

Children with "special" labels are segregated everywhere. Jill and Bob Long, in Wichita, Kansas, have two children, Rachel and Dylan. They are an important part of an international network promoting inclusive education. Their experience with special school and services was very similar to the experience of Pat and Jo.

They gave her a label before we had given a name. However well-intentioned, whether by accident or design, the psychologists, social workers, therapists, special educators, who converged upon this label - for they failed to see the child - are in the business of building burdens. Families, friendship, community, inclusion. are about something far different. They are about retrieving dreams.

Our ten year old daughter, Rachel, spent the first three years of her life shuttling between therapy appointments, developmental evaluations, infant stimulation programmes, special education pre-schools, all of which served their function well: indoctrinating our family into a "special" world of isolation and rejection.

This process of indoctrination is about building walls. Walls between parent and child, walls between brother and sister, walls between classrooms, walls separating children one from the other. Invisible yet impenetrable walls.

When you live within these walls, you become powerless to see beyond them. Eventually, you grow accustomed to the sparseness and sterility of the "special" world, and forget what you knew of the real world, even fearing what exists beyond the walls. Those in the business of building burdens, would consider this outcome "successful indoctrination".

Fortunately, the walls of the "special" world created around us began to collapse of their own weight, began to crumble here and there. First, a bit of light from the real world leaked into our "special" fortress, illuminating the loneliness residing there. And then, a hand reached in and took our hands, and together we tore down the remaining walls. And in the rubble of it all, we began collecting, retrieving, pieces of our dream.

This is not to say, however, that there is no rejection in the real world. Rachel like all of us, and even more than most of us, is vulnerable to the threat of rejection. It is there when we are seated in an isolated corner of a restaurant. It is there when we're told "there are special recreational programmes for kids like her". It is there in human and charitable services campaigns of pity and exploitation. It is there in the perpetuation of a "special" and separate world. But it is not in the eyes, in the smiles, in the arms of her friends. It is not in the noisy lunchroom or spirited classroom of the ordinary school she attends.

Rachel loves and is loved. She belongs- not just to her family, but to her friends. She is included - not simply because she sits at a desk among her age peers, but because she is welcomed wholly and authentically within a caring and just community of learners. This was, and will always be, our dream. A simply dream. We found it, seven years ago, when we left behind the boundary of their walls.

We do not suggest that inclusive education is an easy option, or that it will be without struggle. We do not seek to avoid debate about the most effective strategies, nor do we suggest the inclusion of all learners into mainstream schools is the panacea for all our social, economic and political ills. We also recognise the resource issues that are often presented as the only barriers, "Of course I believe in full integration, if only I had the resources." This underpins a major assumption that we can't afford such a significant change. This assumption demands a greater degree of scrutiny. In 1992 Lancashire Education Authority spent almost 9 million pound, sending four hundred children out of the authority for special education, they spent almost 4 million pounds on daily taxi fares within the authority transporting children away from their local schools and communities. (Source Lancashire Local Education Authority 1992).

"There are those that argue that to allow all children to belong in the ordinary system is too expensive. We have found this not to be true. further, we'd suggest that the argument of financial resources is one based upon fear rather than any serious study of the issue. The cost of including a disabled learner is quite easily measurable, but the cost to the community of excluding the same learner from their peers in incalculable.
George Flynn. Director of Education.
Kitchener Waterloo, Canada

Each of us must choose our starting point when challenging existing practices of segregated education. We seek to highlight the deep injustice and the damage we have witnessed to individuals, schools and communities by the perpetuation of "special services". We believe there are no neutral bystanders, we must make no apologies for attempting to end the segregated world of "A special educational system".

Further information is available from:

Karen Barton (k.barton@bolton.ac.uk)
Bolton Institute
Chadwick Street
Bolton, BL2 1JW
England

Bolton Data for Inclusion
The Action Research Centre for Inclusion
(Sponsored by: The Barrow Cadbury Trust)at
Bolton Institute of Higher Education.

Transparency and AutismNI/AutismUlster

2010-02-07T00:34:00.000-08:00

AutismNI/AutismUlster's annual report for 2009/2010 is available for viewing. (see this link: www.autismni.org/news/08368%20Autism%20NI%20Annual%20Report%2009.pdf

Entitled 'Moving Forward Together', this 17 page document provides all you ever wanted to know about what the charity alleges it has been doing lately. ( page 6 entitled 'moving forward with information and resources is particularly disappointing, considering the charity's continued reliance on packages like the wholly overpriced 'Rainbow Kit'). I have found nothing of use, information wise, on the charity's website. Much of its content is about the charity itself, and its need for your money.

Page 14 of the document entitled 'Moving Forward Responsibly' attempts to furnish the reader with a balance sheet of the charity's finances. This page, a most important page is blurred! All of the other pages of the document are pixel perfect, and very easy to read but if you read this page, you might think you are wearing your grannys' reading glasses.

At first sight, I was not able to make out even one number or figure. I did attempt to place the page in my photo editor, and it looks like AutismNI/AutismUlster's bank account retains between £400,000 and £550,000. It's definitely a 6 figure sum. If anyone has a hard copy of the report, perhaps they could let me know to confirm what it says.

Pity AutismNI/AutismUlster did not advise their website manager to re-format this particular and very important page.

I dare say the Charities Commission know the exact figures but it still begs the question why the charity retains such a large sum in their bank account?

What is interesting is how the autism charity spends an inordinate amount of time fundraising (or rather, getting parents to do it for them) and claiming poor mouth when they have this kind of money in it's coffers.

"What better way to prove that you understand a subject than to make money out of it?" Harold Rosenberg

Money for Nothing

2009-11-08T03:09:00.000-08:00

You no doubt remember fundraising appeals from third world charities asking you to sponsor and give money to the ‘poor’ children of Africa with images of sorrowful little faces on begging boxes and cans, underscored by patronizing and trite appeals to your sense of sympathy and justice…AutismNI/AutismUlster’s public relations team have copped on to the power of ‘feeling sorry’ in their recent fundraising campaign. Nothing like using pain, unhappiness and pity to get what you want.

Instead of the ‘poor black babies’ of Africa, their focus of course, is our own ‘poor little autistic’ children.

Here is an excerpt from their ‘gifting’ postcard. For those of you who have not paid your membership to AutismNI/Autism Ulster, you will not have sight of the offending article. It features the photo of a child who allegedly has a diagnosis of ASD. The writing underneath his photo states, -

“This child has a diagnosis of autism. He may never develop language, is unable to relate to the outside world in a meaningful way and gets upset when taken away from familiar things. He also does not sleep well, will only eat certain foods and is very sensitive to noise. This is Autism. (Is it?)

Arggggghhhhhhhh ….it goes on….(am retaining this postcard for future posterity - i will show it to my children when they grow up and tell them what some people 'used' to think of their brother. )

“But you can help! Through your support we can provide effective services to families who have a child with Autism and can enable the 20,000 people in Northern Ireland affected by Autism to become valued members of the community.”

(Interesting to note that AutismNI/Autism Ulster has had 20 years to do this so far, and it still hasn’t happened.)

On the reverse side of the postcard suggested donations are outlined : -

£4.00 – will pay for an information pack to be sent to parents of a newly diagnosed child
£20.00 – will support our parent/user helpline
£30.00 will pay for a counselling session with a family support worker.

(£50.00 will pay for an ox, a goat, a chicken coop – you get the picture)

Considering Health Trusts already fund AutismNI/Autism Ulster for many of their helpline/counseling workers, I don’t understand the need for more money in this regard.

But, let’s get back to the language used by AutismNI/Autism Ulster to describe autism. Don’t you just love it when the word ‘never’ is used regarding our children. Self fulfilling prophesies abound regarding our kids and feed the autism industry no end. Who is AutismNI/AutismUlster that they know anything about the possibilities of our children?

The description of autism here is offensive in the extreme. Instead of dwelling on impossibility, (for which there is no such thing regarding our children) they could have said, ‘he WILL develop language if only we could get it together to get our finger out of our proverbial and provide a concerted challenge to society to change their beliefs about our kids and lobby for programs (and not expensive autism bills) that are individualized and tailored to the specific child and his family.’

It begs the question of what is the point of contributing your hard earned cash to this charity if they believe our kids are lost causes. Autism is treatable, and recovery from autism is possible. AutismNI/AutismUlster promotes a self fulfilling prophesy for our children and seems to be expecting you to pay for that. Why? If our kids are so hopeless, why bother?

They could have said, ‘this child relates to the world in a different way, one that is fascinating, unique, authentic and totally within the ability of society to understand, if only they would shuffle off their skewed beliefs about the importance of ‘conformity’, and what is ‘acceptable’.

They also could have said, ‘peer reviewed research around the world is consistently pointing to the environment as a possible causation of autism and your donation will help us fund quality research and a care pathway for children suffering from sleep disorders, gut dysbiosis, allergies and other physical correlations with an autism spectrum diagnosis.’ (Of course, when you have a charity who accepts money from huge pharmaceutical companies who ply drugs to our children and their parents, you aren’t going to bite the hand that feeds you!) AutismNI/Autism Ulster was very happy to accept money from Glaxo Smithkline here: http://www.autismni.org/news/pressreleases_view.asp?ID=25

AutismNI/AutismUlster, in my opinion, takes the low road in this regard. The biggest joke of this fundraising campaign is on the reverse of this card, where they state that AutismNI/AutismUlster ‘increases the quality and range of services available for individuals with Autism through training and education. Northern Ireland still provides one teaching program for our kids (TEACCH), no ABA, no Montessori, and limited funding for alternatives for home educators who want something specific to their children. Every year, talking heads from North Carolina TEACCH central come to Northern Ireland to drone on about the same old thing.

By now, we should have had many of our experts in this 'system' who could provide in house training across the province instead of having to spend thousands of pounds continually year after year.
Speech therapists are scarce (and often useless), sensory integration is virtually unheard of and autism specific schools, well that is another matter altogether. Meanwhile, in my opinion, parent members of AutismNI/Autism Ulster waste their time echoing and fighting for the political aspirations of Arlene Cassidy and her buddy Iris Robinson, wasting their time picketing the offices of certain political representatives who have eschewed the autism bill in favor of common sense.

‘Quality’ and autism services in Northern Ireland anyway, is an oxymoron. We need a good outcomes study of the millions of pounds already spent on so called autism training. Classroom aides in mainstream schools are wholly under-trained, if trained at all, parents get even less access to training unless they want to pay for it.

Meanwhile ‘our’ autism charity continues to tout our children as potential lost causes, making money off their backs and off their diagnosis’.

The fact that children all over the world are losing their diagnosis’ of autism doesn’t seem to interest AutismNI/Autism Ulster. Why would it? This should be on the front pages of AutismNI/Autism Ulster's web site. But no, not a dickey bird. Better to keep that kind of information hidden in case parents start to ask for more for their children.

Here is an excerpt taken from AutismNI/Autism Ulster's quarterly newsletter (Summer 2008). An article entitled 'Autism', written by a 15 year old girl explains her take on autism. As the article was vetted for the said newsletter by the charity, I presume the charity agrees with it as well. "Remember", she says, "Autism is a lifelong sentence and cannot be treated." Again, if that is so, why is it that on virtually every page of the newsletter does the charity beg for money for those 'untreatable' children? Why not just call for the blanket institutionalisation of all children with autism?

AutismNI/Autism Ulster appears to be working closely with Autism Initiatives (provider of group homes, etc) this is, in my opinion, a nice little number, a cozy airtight relationship – with one group guaranteeing the existence of the other. Autism Initiatives would not be building group homes all over the province unless they were sure they would be filled. ‘If you build it, they will come’ springs to mind. Continuing to use words like ‘never’ will ensure a steady stream of in-mates for these facilities.

AutismNI/Autism Ulster is proud of its 20 year history. I don’t know why. The only reason the charity has been allowed to flourish is because the statutory sector relinquished it’s responsibility to our children, favoring instead, to delegate the ‘problem’. AutismNI/Autism Ulster was ready and waiting to keep our kids in a holding pattern that now employs 24 staff.

In my opinion, the lack of, in fact the clear absence of lobbying by AutismNI/Autism Ulster for evidence based services and training in the province attests to this fact. The only 'lobbying' of the charity has been Arlene Cassidy’s autism bill. Politicians have realized how they had been duped, but moreso, how much it would cost, both in legal challenges and in rolling it out.

But back to the topic of this blog entry. Before you even consider giving one penny to AutismNI/Autism Ulster, please ask yourself the following questions: -

Is it ethical for the charity to fundraise from already financially overstretched parents, parents whose homes often break up with the breadwinner (husband) often leaving, homes where parents often cannot even work?

Are you sure where and for what the money is going to be used for? It costs a lot of money to pay 24 staff, money that could be used to actually lobby for real change in this province. With that many employees, the government should be inundated with demands for positive change for our children. We shouldn’t be in the mess we are currently in. Does AutismNI/Autism Ulster need money for more public relations, media and lobbying tables? Is anyone asking these questions? Does anyone actually know or care how much the charity has spent on lobbying for the autism bill? Maybe Iris Robinson knows and should indeed be asked.

Could you do better? Could you start your own autism support group and elect someone to carry out research, a scoping exercise of services in Northern Ireland? Could you disseminate that research to the wider community for free? Could you fundraise monies from the lottery or from private patrons and use it directly for your children? I bet you could, I know you could. And I am sure you could do it without the need of employing 24 people.

AutismNI/Autism Ulster will never receive a penny from me until it starts demanding what my child needs as an individual first. To date I see nothing of interest on their website, in fact compared to the NAS website, it is a blank page. There is so much going on regarding autism in Northern Ireland right now with the RASD autism strategy – yet Autism NI/Autism Ulster remains silent.

I believe AutismNI/Autism Ulster has spent much time and money and effort lobbying for something I did not want, the government does not want, and something my child does not need. Instead of financing the political aspiirations of AutismNI/Autism Ulster with your hard earned cash, a simple phone call to the charity might be better. Ring them and ask them for their current financial statement and an explanation of how next year’s projected budget is going to be spent and how it will benefit your child. The worst that we, as parents can do, is to just assume. That is what the statutory sector has done for 20 years and that is why our children are living in this current mess.

The rot we currently face regarding autism, here in Northern Ireland does not solely rest with AutismNI/Autism Ulster. I am hopeful for the future though, as more parents are becoming aware, are being empowered and governments officials are realizing the error of their ways. Big things are afoot in Northern Ireland regarding autism and they have nothing to do with AutismNI/Autism Ulster or any other charity for that matter.

It’s an exciting time and should be embraced. The word ‘never’ is slowly being removed from the autism lexicon and the autism dinosaurs here are having to face their own extinction. To all the wonderful, astute, well informed parents I have met in the past 2 months, I say thank you and thank God for the opportunity to have met you all.

Nothing stays the same forever, even here in Northern Ireland! Exciting times are ahead whether you fund AutismNI/Autism Ulster's 'never' campaign, or not.

UTV wins autism Stupid award!

2009-10-15T00:45:00.000-07:00

UTV (Ulster Television) are not exactly known for their research capabilities and I don't think any of their presenters or producers even know what the word 'erudite' means, but a cursory google search would have imparted to them more information than what they wasted 9 minutes of airtime on in this short piece which aired this past Tuesday evening (link embedded above). If you want to see the program for yourself you can watch it on UPlayer until November 13th when it will be removed from their website thankfully.

The opening 5 minute vignette about autism featured a parent and her 7 year old son. There are a myriad of ways in which informed parents could have have been interviewed by UTV to help dispel the myths about our children and what they need. This program wasnt about dispelling myths though. It was about pandering to the existing system and asking for more of the same. Charities like AutismNI/AutismUlster could have selected the mother featured in the program as she laments the fact that she needs more of what groups like AutismNI/AutismUlster offer (training in TEACCH, Pecs, etc)

This parent lamented the lack of services, the long waiting list she encountered in having her son diagnosed (two years) as well as her fears for the future of her son once he leaves his special school at the age of 19. Much of her worry centered around whether or not her son would find employment when he reached adulthood.

This is where I started screaming at the television....I don't believe this parent deliberately set out to mislead the public, though I do believe UTV cynically chose this parent to gauge sympathy rather than inform. The viewer is told how her son received six months of a TEACCH program and how he was six years old before he received any benefit from interventions.

TEACCH is not appropriate for children with an ASD. TEACCH is a system of control set up to embed routine into the individual's day to repress and suppress personality, spontaneity and of course motivation. It is not a social communication program and in fact the TEACCH trainers admit that is so. It is cheap, and teachers love it because it allows them to put structure into THEIR day and keeps autistic kids and adults quiet. Coupled with the PECS system, it's a sure fire way to prevent any child from ever having an independent life, a happy life, a life of equity with his or her peers. It is NOT an intervention for autism.

The parent then went on to talk about how routine plays a big part in her son's life and the life of autistic children. If only she could have given this a bit of thought and hadn't internalised the lies that professionals fed her, she may have concluded differently. Clearly someone along the way had spun her a yarn, a yarn so big that all it needed was a self fulfilling prophesy, in the form of TEACCH and of course in the form of a charity that makes money at rolling out the said program. (by the way, does anyone know how much money AutismNI/AutismUlster has in its coffers?? anyone bothered to find out, or even how much they have spent or been awarded to roll out TEACCH?)

Why wasn't this parent asking for something else. She says that her son received no benefit from 'interventions' offered, until he was six years old. Maybe she believed (or was led to believe) that 'autistic' kids take a long time to learn and that well, you know, it's the autism, etc etc.

This parent went on, 'you do the best you can with what you have', (I don't know if she was referring to services or to her son). She went on to say that any employment for her son "would have to be very repetitive...there is work out there that is repetitive work and autism children would be the best at that because they do like to repeat everything and I hope that when xx is that age to go out into the world that there would be something for him, but at the moment it doesnt look very good there is no understanding of the autism world."

I doubt any one came knocking on this parent's door to give her and her family choices in the training of specific educational interventions that would individually suit and help her son. I also doubt that she were given much hope by 'professionals' who have worked with her boy. The fact she expects him to stay in the special school (dumping ground) system until he is 19 kind of verifies that.

Persons with autistic spectrum conditions do not like to 'repeat' everything. In fact, I would venture that many individuals with an ASD absolutely hate repetition, even to the point where repetition becomes an uncontrollable co-morbid condition of ASD. If you insist on using a TEACCH program for your child, however, repetition and 'routine' may become so ingrained in your child that he may very well not be able to cope or learn without repetition, it becomes a learned behaviour, purposefully and deliberately projected by those who promote TEACCH.

As I have said before there are over 300 well known educational models for autism now, probably a lot more, that I do not know about. This province has not delivered in any other way for our children so why would any parent think, or accept that an educational model offered (TEACCH) has any merit?

As an aside this parent also said in the UTV program that her child gets up in the middle of the night, and also has some major gut and bowel difficulties. I would ask her to investigate biomedical interventions, homeopathy, stress reduction techniques, cranio sacral therapy, neurological chiropracty, sensory integration and of course her child's diet. His problems are common and unfortunately are not addressed by doctors and paediatricians here until they become life threatening. By the way if you want any of these things, you will of course have to pay for them yourself. You will NEVER get a sensory integration specialist even though it looks like your son really really needs one. Sensory integration is not OT, is not Physio. It's a very complex art and isn't offered here. You need to go to England to get anyone that is any good. But, I thought I would mention it. In fact, your child's special school probably can't even spell sensory integration much less know anything about it.

And now on to you, UTV, you should be ashamed as you knew exactly what you were doing by cynically using this parent and her son to pull the heartstrings of your viewers and keep them watching. I didn't expect anything less though. Your station is not exactly known for rocking any boats. You didnt do your research. Either that, or else the lack of depth of this program was planned on purpose.

Below is an article on how one parent, who believed in his child created something unique and wonderful in terms of employment for persons with an ASD based on their amazing and unrivalled skills. Would this ever happen in Northern Ireland? I doubt it.

Our kids can work, and no they don't need repetition. What they need is for their strengths and abilities to be valued, honoured and respected. My son is never ever going to leave a special school, to enter into the workforce to make baskets or pencils for some government training scheme. If that's where you see your children heading, only one question - why? I say over and over again, if the floodgates start opening up in terms of realisation about how bright our children are, the government will be horrified. No longer will parents buy the crap fed to them about how their kids have learning disabilities, can't do this, or that. It only takes a few parents to lead our kids out of the darkness we have in Northern Ireland. I just wish you would find each other and not waste any more time because no one else is going to do it for us.

http://www.independent.co.uk/life-style/health-and-families/health-news/the-company-that-turned-disability-into-an-asset-1801627.html

Just Leave Us Alone

2009-10-11T01:50:00.000-07:00

Parents I know who have children on the spectrum often lament, 'if only "they" would leave us alone', our kids would be fine.

How true. How many times has your child been having a perfectly wonderful day and then someone says something, does something in response to you and your child? I suppose that the outcome of such situations is dependent on how you control your own emotions and behaviour. But sometimes, it's very difficult.

A perfect example of this is School Boards who make it their purpose to heap as much trouble, frustration, financial strain and anquish on you as they possibly can. All of this is in addition to what you are doing for your child at home and and in his community. A parent of child who did not have autism has very little idea and I doubt would even put up with it.

I believe our children mirror the beliefs, attitudes and fears of those around them. My child is not mean to other children, loves all those who love him and is devoid of most of those things that make some humans inhuman. Yet, it takes very little for him to 'trigger' others into cursing him (and me) and even less for others to treat him as something sub-human.

It's not just here in Northern Ireland. I was in a large American city recently and was in a queue waiting to pay for my shopping. My son saw something he wanted in the next aisle and was making it very clear to me that he wanted it. Up until that moment we had been having a perfect day.

An old man queued behind us with his trolley. By this time my son was on his haunches refusing to move. The old man said, if you don't get up I am going to run you over with my trolley'! I shook my head in shock at what this ole crone said and responded with something particularly pithy, vengeful and exacting. The old man recoiled in horror at what I said to him. Meanwhile, my child was oblivious to the old man's threat, and was still protesting on the ground. My son had been physically threatened by an 80 year old who probably had great great grandchildren. No compassion, no patience and no understanding. The best part was my son wasn't even in this man's way. He must have thought I 'needed' a lesson on child discipline, or rather child abuse!

Here in Belfast not too long ago, we had lined up behind a man in an ATM and my child said 'hurry up'(rightly so, the guy didnt know how to use his cash card and was taking forever). Before I had a chance to say to my child that what he said was inappropriate, this man turned around with a horrible scowl on his face, looked down at my smiling son and said, 'what did you say?' in a very threatening manner. I replied 'he said hurry up!'

Muttering something quite distasteful under his breath, he moved away and proceeded to stare at my son and me until we finished our business. I felt like calling the police and could only think about how my son would deal with such a situation if I wasn't there.

Finally, a month ago in yet another queue (queues are such fun) a woman who was standing behind me in what is a very typical Northern Ireland style (she was so close to me, I could feel her breath on my neck,and her trolley was rammed up against the back of my legs) she was 'tsk - tsking about my boy who was touching items in the next person's shopping basket.

I turned around to see where this annoying sound was coming from and saw a very hard looking woman. She was spray tanned, bleached blonde and clearly a victim of middle aged spread standing with her very young and very pregnant daughter. They both had that 'look', you know the one, particularly in some women with little self esteem who 'dare' you to stare them down. My other children were with me, equally agitated as me about the carry on.

A bit of 'discussion' ensued between me and them. My son looked at these people with a huge smile, oblivious to their scorn and uttered 'hello'. Neither of them responded and my son said 'hello' again. I told him, 'some people don't know how to talk'. Who has the problem here?

Something in what my son was doing triggered the need in all of these people to react negatively. My son is a contented child and it amazes me how he brings out the worst in people. I can only surmise that either 1. there are a lot of very unhappy people out there, or 2. his failure to comply with their very selective social rules is a threat. Obviously the 16 year old very pregnant young woman who was behind us did not comply with certain rules either and I could very well have made a number of judgements and even comments. Considering her mother was rather formidable looking, I doubt anyone would ever contemplate such behaviour at least whilst she was around. It was ok though for them to chide me and my boy for something completely trivial and unimportant.

The problem, at least in our house, is never the 'autism' - it's usually you.

Restraint of children with 'special needs' in our schools

2009-10-09T14:00:00.000-07:00

http://www.youtube.com/watch?v=ninImoQbX60

The above link takes you to a video of an Illinois police officer brutally beating a youth in an Illinois special needs high school.

15-year-old Marshawn Pitts was beaten by the police officer, because his shirt wasnt tucked in. Pitts was a student at the Academy for Learning High School in Dolton, which claims to be a school for children with learning disabilities. In this video, the officer, whose name has not been released, is seen slamming Pitts (who has a learning difficulty) into lockers, and then slamming him facedown on the floor. (This technique, known as 'facedown/takedown' has caused the deaths of some 20 people so far.

Ok, Northern Ireland is not Illinois. Our problems are different but I do wonder why some schools in Northern Ireland are receiving staff training on 'restraining young children with special needs'. A number of schools have sent their teachers on 3 day courses on how to 'restrain' our kids in a classroom.

My own boy has very rarely needed to be 'restrained' except in his car seat and the seat does that. The way in which I conduct myself with him, teach him, respond to him, negates any need for 'restraint'.

It's sort of like mental hospitals and group homes - you wouldn't build them unless you intend for them to be used. What is the belief of teachers who feel the need to take a 3 day course on how to physically manipulate/overpower/oppress my child when in fact he has a fully functioning brain and responds so much better to trust, compassion and understanding?

Why is it that so many children in 'special schools' 'behave' in a manner that teachers think needs 'restraining', either for their own safety or the safety of their peers/teachers.

Something is very wrong with this picture. I don't know if you know this parents, but your child's teachers and aides are being trained in how to 'hold' your child in a quasi arm lock and march him down the hall. It's all made to look very compassionate and P.C. but its adults weilding physical power over your child, just the same.

very VERY worrying.

Watch the link to the video above and see how its done 5000 miles away. Incredible is the belief system that tells a police officer to brutally assault a child for a shirt tail hanging out. What are your own children being 'restrained' for and why? In particular watch towards the end when the teacher carrying files just walks past the frenzied attack and doesn't even give a blind bit of notice. She just non chalantly carries on with her business whilst a vulnerable youth is brutally beaten.

You can bet if there is a 3 day course on child restrain, that it's going to be used on your child at some stage, and possibly for no reason whatsoever. Funny, how there is no 3 day course on how to listen to children, or a course on how to examine your belief systems on what is 'important', or on how 'attitudes' colour judgement.

I personally am thinking of designing a course for teachers to help them understand why they believe what they believe about our children. A lifetime of 'attitude', belief, judgement, etc is wrapped up in every teacher. Our children, so very vulnerable, are prone to being the butt of teachers beliefs about 'naughty' or 'unruly' behaviour.

If a teacher had the crap beat out of him as a child, or if his parents constantly nagged him, judged him, criticised him, how do teachers shuffle off the effects of such a legacy, when they are working with our children?? When it comes to 'restraining' our children, what stimuli triggers a response in a particular teacher warranting in them, a need to restrain??

Do you think teachers would attend such a course? Would they be open enough to spend 3 days examining their belief systems, thoroughly examining themselves, before they pre-judge our children as something needing 'restraint'??

Hmmmmm. There are many many teachers out there who have never even heard of sensory integration, don't know what it is, and certainly don't know how to reduce/eliminate environmental triggers that cause our children to 'react'. There are to date, no courses that I have seen offered, training teachers how to re-design their classrooms, modify their curriculums and offer techniques on how to calm over active nervous systems. Further, I have not seen a course for teachers on how to 'talk' to our children, to teach them to self advocate, to learn how to express their frustrations at a school system that lumps them in classes of 28/30 and expects them to sit at desks for much of the day, or eat food in the canteen that sends them doo lally.

The cart is being put before the horse here. Techniques in ensuring 'low arousal' in the classroom, examination of behavioural techniques (antecedent, behaviour, consequence) and so much more would be way more effective than just training teachers carte blanche in how to restrain. Our kids' brains are getting 'restrained' in the process, much less their trust of adults.

It's all very sad.

Build a school, build your own dreams

2009-10-08T00:03:00.000-07:00

In Northern Ireland, the hope of attaining a ‘good’ education in a ‘good’ school (whatever that is) can depend on a number of things. For any child, some of the obstacles to attaining a good education include whether or not your child sat the 11 Plus, what postal code you live in, whether a child’s parents value education and are proactive about it and of course the academic ability and/or motivation of the child.

In terms of the 11 Plus exams, many parents are well aware that for their children who did not sit the exam that their child sat ‘in the back’ so to speak while the 11 Plus pupils got all the attention.

Separate curriculums, even separate classes are formed between the ‘smart ones’ and the others. Don’t believe me? Ask your son or daughter who did not sit the exam, what their schoolwork consisted of, just prior to and following exam time. Were they colouring in a lot of maps and being kept busy with ‘artwork’ while their peers were busy cramming in concepts, facts and figures with the full attention of all the teachers?

We all know there is a two track system in Northern Ireland best exemplified by the grammar schools. Regardless of the 11 Plus being phased out, it has already done its damage.

For our children on the spectrum the obstacles set against them include all the above and so much more. Large class size, over stimulating environments, curriculums that have not been modified, teachers and classroom assistants who have not been highly trained, teachers who can’t cope, the list goes on and on. Put our children in a class of 28 and most of the child's day could well be spent having teacher and aide calming down his overworked nervous system. My own child is incredibly bright. I know this. His 'active' presentation, however, would prevent him from coping in such a large class. He could be a veritable genius but if his sensory system is in overdrive, he won't be able to filter information in or out. So, does this mean special school for my child?

I do not want my child or any other child for that matter to be shunted into a ‘special’ school, the connotations of which, so often mirror reality. What I do want, however, is my son’s education to be specialized enough to meet his educational needs. Attempting to fit my child into a mainstream school where even ‘typical’ children are failing is not the answer.

Northern Ireland has a number of empty schools, schools that with very little effort could be used to create ‘autism’ schools. There is one of these empty schools near me. A good friend of mine pointed out ‘why are these schools lying empty when your child needs a school?’ Very good question. She further asked, ‘why don’t parents get together and create their own schools out of these empty buildings for their children?’ Another very good question.

There is no school available in Northern Ireland that is suitable for my child. The fact that a parent would have a very hard time obtaining a classroom assistant for their child in one of the ‘special’ school says it all – these people seem to think they are more ‘special’ than our children. Unfortunately, I do not see 'special' outcomes coming from these schools and in fact what I see is special schools that run from primary age to graduation. What exactly is the belief system of placing our children in a school that covers their education for 14 years. Clearly no one expects them to venture outside the special school system. This is so very wrong. This is the belief system that parents must vehemently counteract if they have any hope for their children's future.

If parents want schools for their children, schools that will specialize and will honour the opportunity to help our children, then parents must start demanding them. Why should we as parents accept what is on offer? The product is well past it’s sell by date and is actually starting to mould.

Have parents in Northern Ireland succumbed to the system just like the government and school boards hoped they would? Since when do we have to accept anything? Instead of governments telling us what to do, it is they who should and must listen to us, not the other way round. I see and hear parents complaining all the time, each carrying out their own personal battle with the authorities and schools, each in isolation, each signifying nothing to the bigger picture except isolated bouts of disruption. Even if a parent launches an appeal and tribunal regarding the education of the child, unless it's going to create a precedent in law, the impact of such is not felt in the wider community (despite the danger of potentially causing a nervous breakdown in the parent due to stress)

All of these isolated voices of parents that are battling the system get lost and never come together. Despite the fact that there are five autism charities in the North, the voices of parents continue to make very little impact. Parents are separated, corralled and effectively silenced by the fact they are not coming together as one.

There is a big difference between being bitten by one spider and being bitten by ten. Parents could be those 10 or 1000 spiders. They would need to be because they are fighting mosquitos, the pesty bug that will suck the blood from you and your child if you don't swat it.

Who will take up the gauntlet in Northern Ireland and bring the voice of all parents together? Our children are not 'special', no more special than any of God's other creatures. All children are special. Our children are, however, extraordinary and exceptional and I truly believe that children who have autism intimidate a lot of people particularly those who fear autism and do not or will not make efforts to understand the condition.

If you are a parent of a child who has a diagnosis of autism you know how intelligent, intuitive and sensitive your child is.

I personally can recount stories to you about my child that I have never heard repeated by another parent. My heart has soared at some of the things my son has achieved, things that have been so incredibly and awe inspiringly brilliant!

Every parent, without a doubt has some amazing stories to tell about their child. Are teachers and the Department of Education afraid of what our children might achieve? It would set a very dangerous precedent if our children started 'achieving' beyond the belief systems of these people! A veritable 'pandoras' box would soon open. There would be no going back to suppressing and repressing our children and their parents. The Department of Education, I think, is terrified of providing opportunities for our children to grow because the flood gates would open to possibilities and all of that costs dearly. Best to keep parents and their children in a holding pattern. It starts with the negative attitudes of the diagnosing paediatrician and it ends with your child still at home at the age of 25.

I ask all of you who are parents to take one hour and really think about what kind of educational environment you really want for your child. Try to exclude the niggling comments from your child's teacher that he is 'happy' (he might not be happy at the age of 18 when he hasn't got the skills to get a job or a girlfriend) Talk to your fellow parents and compare notes about what you really want for your child. Then ask yourself 'are these things achievable?'

I believe all things are possible but that nothing comes unless the work is put in. No one is going to work for our children without parents becoming vocal, empowered and fully accountable. My own child's education is my responsibility and I have not and never would leave such an important part of my child to anyone else. Not only am I responsible for seeing that he achieves, I am also responsible to ensure he is not permanently damaged by the school system. We have all seen this happen too many times.

If anyone out there is interested in creating 'good' schools for our children, please let me know. If necessity is the mother of invention, there has never been more need. If anyone tells you it can't be done, question their motives and ask them why they believe what they say is true. Only I know what my child needs and only I know what I want. I expect as parents, you are the same.

We can change the future for our children. 'Tick tock, tick tock....what are we waiting for?

SHAM - Autism Bill - Everybody Now Knows!

2009-10-02T13:16:00.000-07:00

2 October 2009

Top doctor's autism bill concerns

NI's chief medical officer has said he has "significant concerns" about proposed autism legislation.

Dr Michael McBride said it could lead to discrimination against those with similar disabilities who have not been diagnosed on the autistic spectrum.
He warned the assembly's health committee that parents could seek an autism diagnosis to access facilities.

Arlene Cassidy of the charity Autism NI said she was "astounded" by Dr McBride's comments.
"I find the chief medical officer ill informed about the purpose of the Autism Bill," she told BBC Radio Ulster.

"This is a good thing, it is about building upon the good work of the departments of health and education - this bill is about joining up government."

Dr McBride said he had a number of major concerns about the Autism Bill (NI).
“ Legislation would encourage more strategic planning regionally across all departments ” Arlene Cassidy Autism NI

He said he was worried about the "substantive administrative costs that would be incurred and the lack of clarity over how the legislation could be put into operation, given our current equality legislation".

"I believe this legislation could discriminate against individuals who could have a similar range of disabilities such as speech, language and communication problems but are not on the autism spectrum," he added.

His comments were backed by director of mental health Dr Maura Briscoe, who warned the committee the bill could create a hierarchy of disability and create labelling "not to the benefit of the people of Northern Ireland".

An action plan to improve services was introduced earlier this year, but Ms Cassidy said legislation was necessary to ensure a multi-agency approach.
"The autism action plan is a positive step forward but it is for the Department of Health - autism is a holistic problem, it is a lifelong problem and involves other government departments," she said.

"People involved in the action plan have found they haven't got co-operation from other departments, so legislation would encourage more strategic planning regionally across all departments."

'Support'
One of the bill's supporters, SDLP assembly member Dominic Bradley, told the BBC he remained confident the bill would eventually be passed despite the objections of Dr McBride and Health Minister Michael McGimpsey.

"I don't think it's the end of the road - we have the support of the majority of political parties and indeed we did have the support of the Ulster Unionist Party until recently," he said.
Mr Bradley said cross-departmental planning would save money by removing "duplication of effort".

Ulster Unionist peer Lord Maginness, who was involved in drawing up the autism action plan, said introducing legislation would be costly and time-wasting.

"Based on the needs of parents, carers and users rather than the demands of a voluntary group or politicians, we've got a lead autism director in each trust, a project team and will soon be able to assess every two-year-old child in Northern Ireland," he said.

listen live on BBC IPlayer here: (fast forward to 1 hr and 42 minutes for this particular 9 minute clip) http://www.bbc.co.uk/iplayer/episode/b00n01vl/Good_Morning_Ulster_02_10_2009/

Story from BBC NEWS:http://news.bbc.co.uk/go/pr/fr/-/1/hi/northern_ireland/8286565.stmPublished: 2009/10/02 08:50:48 GMT© BBC MMIX

**Let's remember Arlene Cassidy's references to 'looking on the bright side', following the Middletown Centre for Autism fallout in May this year.

In this clip from 18 May 2009,(http://news.bbc.co.uk/2/hi/uk_news/northern_ireland/8056444.stm) Ms Cassidy was asked her opinion over the Middletown debacle. She responded, "maybe this provides us all with an opportunity...I am a great believer in looking for the silver lining and maybe some of the funding diverted to Middletown can be used otherwise."

Yes Ms Cassidy, I agree with you on that one. With regard to the Autism Bill and the exorbitant amount of money it would waste, your previous comments regarding 'diversion' of monies are applicable here too. Let's 'divert' money for this ridiculous bill, to those who need it most, namely our children. Seriously, what has changed for our children in the past 20 years, actually the same 20 years that AutismNI/AutismUlster has been in existence? How many ASD specific schools with trained teachers would the Autism Bill buy? How many youth/adult employment transition schemes would it fund? The comparison of Northern Ireland to the Republic or to England is dire in terms of what is available for our children. We need real early intervention, not half hazard 'attempts'. We need a complete overhaul of the belief systems of those who work with our kids in this province. Our children need so much - legislation guarantees nothing - in fact it might even make things worse by creating a restrictive perimeter around what can/cannot be done.

Autism in Northern Ireland seems to be more about wasting money than anything else. 7 million pounds has already disappeared down the Middletown rabbit hole, much of it having gone into the pockets of Directors.

The fact our 'legislators' allowed 7 million pounds to be wasted, that it was done 'legally' is not very encouraging. What we could have done with that money!!

Let's not make the same mistake again. The Autism Bill is a fruitless, redundant and ultimately damaging idea and I am so thankful that some people in Northern Ireland are seeing sense and that others are finally having their voice heard over the din of others' egos and career ambitions.

IRIS ROBINSON tells us like it is?

2009-10-02T07:42:00.000-07:00

Hello dear readers. We are at a major crossroads regarding the future of our children and all individuals who have an autistic spectrum condition who live in Northern Ireland.

Yesterday (1 October 2009) in Stormont, a meeting took place of the Health, Social Services & Public Safety Committee. At 2.00pm a Departmental Briefing on Proposals for the Autism Legislation began. If any of you were party to the proceedings you would be reeling with shock. Why? Kieran McShane, parent and ASD Strategy member suffered a verbal outburst from Iris Robinson, MP, DUP in a discussion about the taking forward of the proposed Autism Bill.

Kieran McShane: "I am a parent and carer and a member of the Autism Strategy. Nothing in this bill is for me. "

Iris Robinson: "You may be a parent but I am an elected representative!"

For those of you out of the loop, there is much afoot regarding autism and politics at the moment and if you have not already done so, you will be very interested in seeing this: www.dhsspsni.gov.uk/asd_strategic_action_plan.pdf . Go to page 38 to see a diagram of how parents are going to be key to the future decision making regarding our children.

I personally, am appalled and highly insulted that Iris Robinson DUP appears to hold the view of her friend Ms Arlene Cassidy CEO AutismNI/AutismUlster higher than the views of parents, carers and service users.

I personally cannot equate Ms Robinson's comments yesterday to be based on anything else than what she is being fed by AutismNI/AutismUlster. Who wants this autism bill except AutismNI/Autism Ulster? We have laws here regarding all disabilities and it is my opinion that fear is rising in the hearts of certain organisations both statutory and voluntary that parents are going to be furnished with the power, authority and mandate to shape the future for their own children. Iris Robinson in my view, now has the responsibility to prove to her electorate who she is representing.

If you are a parent, a carer, or an individual with an ASD and you live in Iris' riding,she desperately needs to be re-educated by you.

Does Iris Robinson represent ALL of her constituents who have varying 'disabilities' or does she represent only those with ASD I wonder. Will she fight for legislation for those with cerebral palsy, down syndrome, the blind, and the physically disabled, under section 75? Is she as 'well-acquainted' with the leadership of these groups as she is with Arlene Cassidy? Iris seems to have a lot of time for 'autism' and AutismNI/AutismUlster. I suggest to other 'disability' groups to get cracking and bend her ear equally.

Nothing escapes the attention of parents where politics is concerned. It's not about politics - it's about our children and we are watching, watching very closely.

So many questions. Will the rest of Northern Ireland's carers (185,000) be meted the same treatment as Iris Robinson projected onto Mr McShane yesterday just because she is a political representative? I would not like to think so.

If you would like a dvd copy of the DHSSPS proceedings from yesterday for your own records, you can order your own copy for free by emailing: Sound&Vision@niassembly.gov.uk. In the body of your email advise the proceedings, and the date they occurred. Don't take it from me, watch what is going on for your own eyes.

Catriona's Carnival

2009-09-26T12:42:00.000-07:00

As many of you are aware of by now, Katrina Rooney, Minister for Education has been sending her talking heads out into the province to summon up support for her 'Every School a Good School Inclusion consultation paper.

Interestingly enough, though not surprisingly, the majority of questions asked at the meeting I attended,were from teachers in special education and from parents. I don't believe mainstream teachers are aware of what is going to 'hit' them should this consultation become policy.

The meeting I attended was chaired by an ex special education teacher who had the charm of a pitbull. She spent the first hour 'explaining' the dire contents of the consultation paper, how it came to be, and then 'permitted' the audience to ask questions in the second hour.

Members of the audience who had questions were curtly advised that only one crack at the microphone would be permitted. The woman ensured that the queue of questions was maintained in scrupulous order. If she wasn't a teacher, she would definitely have a career as a sheep herder - all she needed was a whistle.

Alarm bells began to ring in my head. Controlling the room and maintaining order seemed to be paramount over and above answering or even responding to questions asked.

I only attended one of these 'roadshow' meetings. I estimate over 100 people were at this one. I do know, however, that other meetings were not as well attended so perhaps the poor woman was a bit intimidated.

Despite attempts via bad timing of the meeting, to make it as difficult as possible to attend, people continued to roll in after 4.00pm.

The chair of the meeting explained the timing of the meetings (4.00-6:00pm). She advised that it was in fact parents who displayed their preference for that time slot because a 7.00-9.00pm time slot would 'interefere with dinner and homework'.

I doubt very much the Department of Education listened to any parents regarding the timing of these meetings and for those I spoke to, the timing was universally inconvenient.

I could go on and on about the content of the meeting but you can read the document yourself. (see link to the right) One of the most salient points raised was by a teacher who asked, 'if I mis-diagnose a child, will I get sued?'. This teacher was referring to page 15 of the document which clearly states, "a move to formal assessment of a child's difficulties or disabilities will only be necessary when it has been clearly demonstrated that the IN-SCHOOL support programme has not been successful in meeting those needs."

Incredibly, the Chair's response, after consulting with her stage partner was 'no, teachers are not being asked to diagnose', but that there are 'protection' and safety nets for teachers who might be accused of misdiagnosing a child. (when you read the excerpt above you will see that teachers are going to be expected to be front line assessors of children in need and will be expected to 'flag' them up.) I foresee many children being incorrectly 'flagged' up and also ignored. What about the children who have an autistic spectrum condition, are from the Travelling Community, have recently suffered a bereavement and who are 'looked after' children? What additional need must be tackled first?

What I really wanted to say at that juncture is that as a parent of a child with autism, I can spot another child with autism at 90 paces. I see them on the street, in the park in the shopping centres - why is there such a problem with 'flagging' children. I think most parents who have kids on the spectrum are capable of this. Our experience provides us with a built in 'radar'.

In front of many parents in the audience, (potentially the parents who would indeed sue such a teacher for neglect or misrepresentation of their children) an explanation was given to this individual teacher by the Chair as to how he will be 'protected', how there are checks and balances in place to always protect the teacher.

Incredibly, parents said nothing whilst listening to this, but of course, most of them had by now used up their one chance at the microphone. (Teacher had laid down her rules and we all abided by them.) In retrospect, I wish I had told the Chair at the start that I would not abide by her 'rules' and that I would ask as many questions as I bloody well pleased.

The format of the meeting was almost exactly the same as the Middletown 'roadshow' (farce). Questions were asked at those meetings too and the Chair of those meetings Mr Gary Cooper continued to respond with, 'that's a great question, write it down so we can look at'. That was over 7 million pounds ago. I would love to know what this consultation paper has cost so far. Despite its cost, I can only hope, for the sake of all our children, that it also goes the way of 'middletown' and is forgotten about.

No notes were taken by the Chair or her co-hort, and I doubt very much that the proceedings were recorded. Important questions were posed by parents and teachers and others. Those questions and comments, largely ignored, and with no recording of them, will disappear unless the individuals who posed them make sure to write them down and submit them to the Department. I do wonder what the Chair of these meetings is telling her department about the content of the said meetings. Really, what is the point of having meetings unless the proceedings are recorded in some way. Will the Chair go back to her department and say all was well, or nothing to report? Such a joke.

The question arose during the meeting, 'who do parents sue, should their children suffer from neglect? - the Board or the School.

Shockingly, the Chair of the meeting advised us all that the consultation document is not finished, that there are many more parts to complete before it could be submitted to departmental level.(which begs the question why it is being presented for our response, if it's not even finished.) We were told very clearly that we are being expected to comment on something when that 'something' is not complete and when the most important part of it, has not even been presented yet.

The Department of Education considers you, parents and teachers, as fools.

Those who asked the questions about guarding children's rights were informed they would have to 'trust' the school board, that there was no 'foreseeable' relinquishing of rights of children should the document become policy.

So, to all parents, all you have to do is trust your education board.

I don't see much point in delving into this consultation document any further as it is a total joke.

The fact that no one, not one person clapped or publicly thanked the Chair for her 'speech' said a lot. A deadly silence ensued once she signed off of her microphone. She knew it too as she very uncomfortably walked back to her notes. What did she expect?

Standing outside and eariwigging on the conversations of both teachers and parents, I can tell you that no one I spoke to was impressed, and many were exceptionally angry and rather stunned at it all. Following meetings such as this, at least in my experience, it's always like this -parents gather and 'complain' and teachers do as well.

This time, I was very glad to participate in the ensuing 'bitch fest'. I could hear parents and teachers talking to each other with much concern about this fiasco and comparing notes. These people may never meet up again but it is my deepest hope that all who had concerns about what they heard that day, will take the time to fill in their response booklets which can be downloaded online from the Department. One does not even have to use the downloadable form. You can email, write a letter or memo to let them know what you think and why.

(interestingly, the organisers of this consultation did not think to bring copies of the 90 odd page document for the audience, nor did they furnish us with hard copies of the response booklet). To read the document online is very difficult and in fact many of those at the meeting had not even read the document at all.

Our children are in great peril should this document become a reality. In my view, legal action is required against the Department to ensure this document never sees the light of day again.

The Department of Education is 'at it' again and still believes that they can ride roughshod over the needs of our children and the desires of their parents. The Department I believe, has every intention of just doing what IT wants to do, with no desire to consult with parents, voluntary or other sectors.

If you allow them to do this, you only have yourselves to blame. Parents standing up to School Boards in Northern Ireland, is incredibly overdue. There is no excuse for ignorance on this issue and I apologise for sounding preachy but sometimes parents are their own worst enemies.

Parents have got to stand up to the Department on this one. The only thing I wanted to say at this particular meeting was 'shove it' right back where it came from, it was an affront to me, to even have to discuss such drivel.

SEN & Inclusion Roadshow begins - Bring in the Clowns

2009-09-19T00:58:00.001-07:00

The Consultation on Every School A Good School: The Way Forward for Special Educational Needs (SEN) and Inclusion will be brought to you via a province wide road show. You can see the dates and venues below. Go here: (www.deni.gov.uk/index/7special_educational_needs_pg/review_of_special_educational_needs_and_inclusion.htm) to the consultation document as well as the response document which all parents should make time to respond to.

I have already spoken at length about this document and every time I read it, it is more and more appalling. I personally cannot wait to scrutinise the civil servants who will be trying to present this abomination to parents and teachers during their upcoming road show. Should be a good laugh. I hope these individuals were picked for having thick skins because they are going to need them. I predict a no holds barred verbal assault from audiences province wide. If this does not happen, there is something terribly wrong. No parent, whether they have a child with special needs or not, could be happy about this document.

Particularly, parents of children with autism and other difficulties have to remember that the special needs budget is not and never should be culled from or included in any other pool of money. The budget for our children's education is and should always remain separate. What does a child with autism have in common with a child who is from the Travelling Community or a recently bereaved child or a looked after child?

My child's diagnosis is autism and is not a result of his culture (Travelling culture or any other culture) and will remain with him whether I am alive or dead. (Mind you, AutismNI/Autism Ulster are trying to prove the exact opposite right now, with their own roadshow 'Trauma of Autism' and psychotherapist Rosie Burrows is going around the province trying to drum up business for a nice little earner of a research project to prove that culture, the trauma of the Troubles, caused your child's autism - argggh - more on that later, much more!)

The consultation is ludicrous and an exercise in brinkmanship - let's see just how far we can push society before they revolt. The day Katrina Rooney leaves her post (or is unceremoniously pushed from it, will be a 'whoo peeeee' day for me and my child.) My son already has his pet name for her and its not because he has a lisp that he pronounces her last name with an L.

Please take time to read this document and the plans that the department of education has for your child. Take time to tell your child's teachers about the document because some of the teachers I have spoken to have not been informed about it. If you are a teacher, your union needs to be on board with this one because teachers are central to this plan, and will also be the 'fall guys' when it inevitably falls apart. Place notices up in your schools about it to make sure everyone knows.

I am not aware that the 'roadshow' meetings below will be accommadating persons with special needs so you will have to contact them and ask first. You can phone the Department of Education at: 028 9127 9279.

All meetings below take place between 4.00pm and 6.00pm.

The meetings are very inconveniently timed and in fact many teachers may or may not have time to attend and parents who are waiting on their children's buses and other forms of transport may have to take their children along to the meeting, if they can attend at all. Spouses will not be home from work by 4.00pm and for many, there will be no dinner on the table, and many of you will have to arrange care/babysitting and your own transport. If you live in Glengormley, for example, a taxi ride to Dunmurry, will be rather pricey.

Whoever decided 4-6.00pm was a good time for a meeting should have thought about the audience to whom these meetings would apply. Maybe that's just the point, maybe they thought long and hard about who might be coming and did their best to make it difficult to attend? Nothing in this consultation is about our children so why should the 'roadshow' be about accommodating parents?

For you in Belfast, the meeting in 'Belfast' on Thursday 24 September 2009 is not actually in Belfast, it's in Lisburn (Dunmurry) so if you who want to make your voices heard, if you live in the North or East of the city, please leave enough time to get to the Dunmurry location. Again, the rationale for holding a Belfast meeting in Lisburn when there already was a meeting in Lisburn last week, is not known. There is a plethora of conference and meeting venues in Belfast which could have been booked for this meeting negating the need to place it outside of the city. When you attend you will have an opportunity to ask why this has happened.

If you are a parent and if you think 'someone else' is going to take care of this for you, think again. Please read the document and attend these meetings. If you cannot attend because of inconvenience, please let the Department know why by contacting them.

DATES AND TIMES OF MEETINGS:

Leighinmohr House Hotel, Ballymena 22 Sep (Tuesday)

The Strule Arts Centre, Townhall Square, Omagh 23 Sep (Wednesday)

Beechlawn House Hotel,Dunmurry, Belfast 24 Sep (Thursday)

The Lodge Hotel, Coleraine 28 Sep (Monday)

The Canal Court Hotel, Newry 29 Sep (Tuesday)

The Armagh City Hotel, Armagh 30 Sep (Thursday)

First Day of School -

2009-08-24T00:06:00.000-07:00

For most children in Northern Ireland, the first day of school is an exciting time. The feel of new shoes, crisp school uniforms, together with seeing old friends and catching up with summer exploits remains a pleasant memory until adulthood.

For other children, however, (much less their parents), the beginning of school means nothing but stress. The new shoes are too tight, too loose, too different. The fresh school uniform isn't 'broken in' and feels stiff. The anxiety of having to sit in yet another class of spit ball throwing boys, and girls who shun you or quietly cackle behind your back can feel like too much.

From Primary One onwards, school can be a horrendous experience for many children, particularly at this time of year, after two months off of relative freedom from academic and social demands.

For other children there will be no 'first day of school' . The first week of September passes by as unrecognisable as any other week of the year because school happens at home. The parents of home educated children in Northern Ireland have my deepest respect for bucking a system that imposes incredible pressure on children to conform to a schoolroom education.

Parents don't home educate to be different, they do it because they believe it is the best, safest and most humane way to educate their children, particularly for parents whose children have been damaged by participating in the Northern Ireland school system.

For my child 'school' was never more than a building, just bricks and mortar. It was never magical, or infused with special 'school power' - simply a place. For home-educating parents, school is the dining room table, the back garden, the museum, the shopping mall, the library, the world. School for them is totally about 'who' as opposed to 'where'. I have seen parent friends of mine dragging their children who have an ASD to school. Some of these children were still wearing their pyjamas and refused to wear their uniform, considering it more like armour than clothes possibly. (God forbid your child does not wear his uniform - no telling what would happen to his education if that uniform wasn't worn). Northern Ireland loves it's 'uniforms' and uniformity. Bank tellers and office secretaries wear them, (bankers and office 'bosses' do not). It's a class thing, and I despise school uniforms as much as I despise the poor excuses meted out for having to wear them. Where would it lead to if our children wore their own clothes? Individuality? Creativity? Our kids wear the school's clothes, eat their food, and parents have very little say as to what educational approach is used to teach them (TEACCH, PECS, etc) It's about control much more than it's about education. I digress.

The parents who must go to work and whose children do protest at going to school have my sympathy. My compassion and empathy goes to their children as well. My children have always known what is good and what is not good for them and where school is concerned they always advised me, very clearly of how they felt. All children are good at this - the question is do we listen. If parents whose children have difficulties like my own, had choices as to where to send their child to school, how different it might be.

In England there are scores of schools that cater to our children, some are outstanding, some are not so good. Our 'special' children should have access to very very special schools, not be dumped into mainstream school and expected to cope without adequate teacher training, or equally 'dumped' into special schools, forced to have useless programs thrown at them (TEACCH) and molly coddled by teachers who have negative belief systems about our kids.

In the interim, it would be wonderful to have schools like this http://www.lvs-hassocks.org.uk/ - Can you imagine a school like that here? The front page of their website reads: "A supported Learning Environment - Children with Communication, Socialisation and Imagination Difficulties. Ok, Lorna Wing had something to do with that description and for all intents and purposes it is a call to parents whose kids are on the spectrum, but it resonates much better than 'Severe and Complex Needs Learning Facility' which is how many of our special schools would be better describing themselves. If you look at this particular school in England, I think you will be amazed at what it offers. We could replicate that school and others like it, here in Northern Ireland.

(John Clements, Clinical Psychologist is a staff member at LVS Hassocks and is one of the featured speakers at AutismNI/Autism Ulster/ACT/PAPA, etc's 'Autism 2010' conference next year taking place in Belfast, so maybe someone can ask him how we could establish such a school here in the North.

This school has even adjoined itself to the aims of 'The Autism Trust' a charity offering bio-medical support and learning to parents whose children have an ASD. Can you imagine a school in Northern Ireland offering your child organically made meals? Can you imagine your child's school going to the trouble of reducing environmental toxins in the school and making sure your child is not exposed to these toxins? (I remember my own child having a reaction to 'Cillit Bang' after the teacher sprayed it on the table he had working at in school. Tea tree oil and lemon juice would have done just as well. Why do schools expose young children to these products, the kinds of things I would never use at home?- Despite the fact my son has severe reaction to some food substances, I came to pick him up one day from school to find him chomping on an ice cream cone - his teacher looked sheepishly guilty, knowing full well she had just contravened strict instructions outlined in my child's statement that were put there to protect his health.

Not only did my son's statement not guarantee him legal entitlement to services which he needed at the time, it didn't guarantee him his health at school either - my child had a very serious reaction to eggs in the past. She said, "but they were all eating ice cream and he felt left out". I can understand how she felt uncomfortable about not giving my son a treat, but why is it that feeding a child healthily, minus sugar and treats is considered to be depriving the child? My child didn't get what he needed in this school but when it came to feeding sugar, he and the rest of the children presented a level playing field? Ice cream or cyanide, same difference if they both kill equally. Will teachers in Catriona Ruane's brave new school system have to train as nutritionists as well?

I suspect that together with Catriona Ruane's desire to shake up the education system here in Northern Ireland, and empty the money pot dedicated to our children, that many parents are going to say 'enough is enough' and pull their children out of school altogether. We have not been advised how many home educated children there are in Northern Ireland, nor have we been advised of the number of children excluded from school.

The government has no desire to find out, much less any incentive to let you know. From tallying the number of excluded children in my own circles it appears that the numbers of those children would probably be shocking. If there are any parents out there with cash to spare, it's not impossible to start your own school. They do it in England, we can do it here. Our children desperately need alternatives to what is on offer.

The consultation on inclusive education released this month by Ruane's ministry (see link in my list of links) advises that the plan, if adopted will incur a three year phase-in period. If plans like this are going to become the norm in Northern Ireland, its the children caught up in those phasing in periods who will suffer the most should problems arise (and they will).

It may be that more and more parents will take up their right to home educate their children here in Northern Ireland as a means of protecting their children from being used as guinea pigs whilst the Education Department gets its act together. Or perhaps parents will just move to England for a few years. Ruane's Consultation document quotes Helen Keller in the forward. "To treat everyone the same, we must treat them differently." It's so easy to pull quotes off the internet, I do it myself. When it comes to Helen Keller, however, I have read almost all she ever wrote, as well as biographies and histories. My favourite quote from her is this one: "Never bend your head. Hold it high. Look the world straight in the eye." You don't have to have physical 'vision' to 'look'. The people who wrote the above noted document are the worst kind of 'blind' and as Helen would say, "It's a terrible thing to see, and have no vision."

How would Helen Keller be educated if she were a 'special' student in Northern Ireland's schools today? How many individuals like Helen have been overlooked in Northern Ireland because of the medical and educational predeterminism we are so fond of here? Of course, it was divine intervention that Helen found the people who loved her so much and learned with her, not many children like her would have been so lucky during the time she lived - this is obvious.

Clearly, the needs of Helen Keller were indeed different from the needs of her peers, but one 'need' that was and remains the same for all children is for educators and parents to believe in our children, to believe that all is possible and nothing is beyond reach. Carving up special needs budgets in the name of inclusivity isn't going to help my child one jot. The belief that my child and all children will achieve the title of 'educated', will prosper and will lead bountiftul lives is all they need. The rest will follow. Money and political correctness cannot buy this. Catriona needs to find another way to access all those euro-millions for inclusive societies because that is what her 'consultation' is all about.

Our Children to Pay for "Inclusive" Society in Northern Ireland

2009-08-16T02:04:00.000-07:00

(If you are a parent of a child with special educational need (SEN) in Northern Ireland, and you haven't read the document linked above, then you are about to be truly shocked. In the meantime, please don't just take my word for it, before you read this, get your own hard copy of this document, including the response booklets by contacting the Department of Education (phone: 02891 279762) or email them for a copy (seninclusion@deni.gov.uk) and read how your child's educational future will continue to be deliberately compromised.

If you are a parent or someone who cares about someone who has autism, and that person has educational need over and above other children, this is the time to act. Even if you have never done anything before, please do it now. Catriona Ruane, (Katrina Rooney)Minister for Education and her co-conspirators very nicely decided to launch the consultation 'Every School A Good School: The Way Forward for Special Educational Needs (SEN) and Inclusion' in August when you you are on holiday. You have until the end of October this year to make your responses.

While you are at it you might like to look at this proposal: http://www.benefitsandwork.co.uk/news/latest-news/1092-dla-and-aa-fight-back-begins which is Labour's attempt to restrict DLA. Do you fancy asking your social worker for your child's DLA money? Read the link and sign the petition. Oops forgot, the petition is closed until Mr Brown returns from holiday in September!! How convenient. Here is the response to this paper by Carer's UK: http://www.carersuk.org/Newsandcampaigns/Parliamentary/Responsestogovernment/Careandsupportconsultation.pdf

You might also be interested in this, the 'Report to the Secretary of State on the Review of Elective Home Education in England' by Graham Badman. Here is a link to the report: http://www.dcsf.gov.uk/consultations/downloadableDocs/PDF%20FINAL%20HOME%20ED.pdf and here is another link to the report: http://news.bbc.co.uk/1/hi/education/8095864.stm. If you are unhappy with the present education for your child, please be aware that in England home education is under immense pressure and threat. Your right to home educate your child may soon be thwarted if Northern Ireland picks up where Graham Badman (how appropos) leaves off. Not only are your children's rights to a good education being compromised, your rights as a parent are being rescinded as well.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The simplest summary I can make of this consultative document is that it is an attempt to once again change the goal posts regarding special education, in the hope that no one is looking. It's an attempt to dazzle us with hope of intentional positive change without addressing existing and past failures. I now possess over 20 consultative papers (not including this one) regarding special education and education revision in general since 2001. I am sure there are more.
The system offered to our children has been in ruins for some time. This consultation document attests to that. If we were in good shape, such changes would not be needed. The School Boards are drowning in a sea of unmet need. Along comes Catriona with the great (old) idea of changing everything to cover up past mistakes. 'Emperor's new clothes' comes to mind.

Changing everything will prevent the nasty habit of past failures being thrown in one's face. Make it all new and shiny, right Catriona? I remember in my student days, I bought a bed from a thrift shop. It looked brand new. I realised later, that the bed simply had a new cover put on it - I was sleeping on someone else's dirt for almost a year.

You are leaving soon anyway Catriona, so you can blame the new incumbent when this plan fails, particularly if that person is a member of a unionist party.

In the meantime, children like my own will lose teeth and have limbs broken during your political football game. Catriona wants to build 'inclusivity' in Northern Ireland. It started with the Irish language. In order to bolster that particular argument, Catriona has decided to build her inclusive society off the back of our children's difficulties. That's where the money is coming from anyway. 'Special need' will now include the temporary and presumed need of children whose first language is not English, Newcomers, Traveller Children, children in care, children facing domestic upheaval, looked after children and of course many of our own children, and more. Where a child who has lost a relative may suffer temporary psychological pain, Catriona wishes to place that child on an 'at risk' register and throw money around.

Funny, but when my own child was not able to grip a pencil due to his limbic system not being connected up properly, together with all the rest that was causing him to focus elsewhere than on a teacher's commands, both his teacher and his occupational therapist said 'he was not trying hard enough'. How scientific, an approach oozing with compassion and understanding! No money was available, not even enough to pay for a special pencil grip made of rubber that cost 49 pence.

Funny but when I attended endless annual reviews and IEP meetings the teachers and 'experts' all said they were doing the very best for my son and that the problem lay with him and his 'severe learning disability'. As is so common, my son and his autism were blamed, in fact overnight my son went from having a diagnosis of ASD to having 'severe learning difficulties'. It was interesting how speech therapists diagnosed this for him, the same speech therapists who had never worked with him. Doling out labels makes these people feel better though, it lets them off the hook for having to actually do anything. The premise is always that THEY are doing the very best - it's always the child who lets THEM down.

You can look at this video clip (if you dare) and the accompanying article about how teachers said 'things were going well' for this 14 year old boy with autism - truly shocking - http://www.myfoxtampabay.com/dpp/news/local/nature_coast/autism_abuse_lawsuit_081309

As per usual, he was blamed, it was never the lack of resources or training/experience on behalf of teachers and 'professionals'.

Now it seems, according to this consultation that re-naming my child's difficulties will make the boo boo all better. The band-aid in this case is the magical expertise that will appear once the new terminology in this report is applied.

This consultation intends to lump together my child's difficulties together with children who might be suffering temporary educational setbacks due to psychological trauma or cultural conformity differences. What is insidious about the matter is how parent may well be pitted against parent in future fights for services and support. Can you envision my child getting a classroom assistant in the same class that a child who needs a wheelchair ramp can't get one? Catriona is going to pit us against each other and God help the schools and our children who will be in the middle.

Just like the Middletown Centre for Autism fiasco (remember that one?) the Department of Education for some reason thinks Northern Ireland is ahead of its time that it can magically fast forward to enlightenment from a place of complete 'backwardness' regarding meeting my child's educational needs. Into the mix, they think (hope) that an illusion of liberalism can come out of it, 'look at us, we value all minorities and communities. OK, we still force immigrants, including children and babies, from their homes in the dead of night by howling mobs of rabid racists but nobody is perfect right? It's more important to 'look' like we are doing something, than actually do it. Right Catriona? Children with disabilities here are kind of like immigrants, (segregated, misunderstood, maligned) so we might as well lump em all together. Right? It's appalling in the extreme.

I thought the idea of Middletown and the millions wasted on it, was to provide expertise to struggling teachers, a place where teachers could send their 'hard nuts' to get 're-programmed' and compliant enough to re-enter the school system. (if you can't teach em, brainwash em). The very fact that an idea like 'Middletown existed at all, implied that teachers were struggling. Talk to any teacher in any classroom and if they are honest they will tell you how much they struggle with special education.

Now it appears, that teachers don't need a 'Middletown', that they were quite capable of teaching our children all along, that they will be able to do it on their own. Where this magical experience and knowledge is going to come from in only three years is beyond me. Not one teacher I have met to date, had even an inkling of how to teach my son, nor any teacher I have met so far been able to step out of his/herself enough to truly 'click' with my child much less motivate him to shine. (he does and continues to do that all on his own)

Previously, I would have labelled Catriona Ruane witlessly ignorant and a mindless talking head/mouthpiece for Sinn Fein. Now, I think she and her party are just plain wicked, intent on messing up as many lives of children as she and they possibly can. Sinn Fein, who, for decades, have highlighted the abuse of power and the little guy's 'rights' in this statelet are backing this woman who wants to stomp on the rights of vulnerable and innocent children. It's time to bring the bin lids out again. I don't know if its a case of the abused carrying out learned behaviour or if a great experiment is being carried out on our children. Either way Catriona needs to examine the essence of her own humanity on this one. I seem to remember a story about her sending her own children across the border to be educated despite her living in the North. If the story is true, she obviously is aware of what parents must do to find decent schools for their children.

Apart from Sinn Fein, the other political parties here are no better and complicit in their silence and lack of action towards improving the educational system for children like my own. As for the the so-called Northern Ireland Autism Charity (Autism Ulster/AutismNI/PAPA/ACT et al) I simply don't have the time right now to tackle their deafening silence on this issue. The front page of their useless website still reads 'April is Autism Awareness month'. Yoo hoo, it's August now!.

Needless to say when your funding depends on cozying up to the statutory sector, what do you expect them to do? The 24 staff of Autism Ulster/AutismNI/PAPA/ACT et al could well be rubbing their hands in glee at the increased opportunity for 'training' should the document become policy. The potential for future funding of this charity will hopefully negate the need for this silliness: http://www.northcoastni.com/whats-on/2271/sarah-travers-meets-fergie-the-tractor/ . At least the money raised from that venture seems to be going to the Mid Ulster AutismUlster/AutismNI/PAPA/ACT et al Branch and not to AutismUlster/AutismNI/PAPA/ACT et al Headquarters. Both AutismUlster/AutismNI et al and the National Autistic Society are so called 'stakeholders' to this consultation report. I await seeing their responses. The consultation document, if accepted, will be a veritable goldmine for some and I can see why some organisations want to 'stake' their claim on our children and the money their numerous labels will bring.

I have stalled long enough.... it's just very difficult to comprehend the immensity of this consultative document and the potential peril it will mean for so many children.

Ruane and the other individuals who cooked up this report want to take money specifically earmarked for children with SEN and play semantics with it. This consultation intends to water down and re-classify SEN giving it a new name (Additional Educational Need - AEN). This new classification doesn't sound so bad until you discover that 'additional' means children with medical diagnostic labels as well as the children I mentioned above.

There is a very worrying connection being made in this report between children who may have suffered emotional trauma, parental abuse and our children. I don't like the idea of having my child's educational needs combined with the needs of children who may have been removed from their parents or who are somehow at risk. I also wonder what the Travelling Community think about having their children labelled with 'additional need' children. Personally, I think the Travelling Community know very well how unsatisfactory the school system is for their children and how un-accommodating it has been for them. They and I have a lot in common. If the Travelling Community were indigenous just to Northern Ireland, I doubt very much that any attempt would be made to 'include' them, they are being used in this report as a political pawn, part of the 'inclusivity' ticket that Sinn Fein loves so much. I expect they are looking for votes from the newly 'included' communities seeing as their 'own' aren't voting for them anymore.

Anyway, that's just for starters. It gets worse...

The legal document currently known as a Statement of Special Educational Need will be beyond the reach of 99 percent of children. They won't be getting them - ever. Children will not receive educational psychologist reports (no bad thing there mind you, because they are already useless jargon loaded pieces of toilet paper) no speech therapy, (also hard to come by and generally useless - what exactly do speech therapists do anyway?) no occupational therapy (presently almost non - existent and very few are trained in sensory integration - you have to go to England to get this) no free transport, (you won't need this because your child will be going to your local mainstream school) and more.

If your child has needs that simply cannot be met by a school your child might (if you are prepared to fight) receive the new 'Co-ordinated Support Plan (CSP) This document will replace the Statement. Your child will have no immediate right to a CSP, however, and your child might receive one only after exhausting all your child's school has to offer (providing your child is not already one of the over 25 percent who have SEN and who are excluded from school.)

Whilst you wrangle with lawyers and tribunals to get your child the useless CSP, your child's needs will remain unmet (not so different from now really). Once you get the CSP, you will still fight for the Board to uphold the law and provide to your child (just like now). Plenty of children with current Statements are not in school. The Board has no idea how many and don't want to know.

So, really there is not much difference here, except for the fact that your child's legal rights will be virtually eliminated by the reduction of Statements. You will have to engage with schools who will involuntarily be forced to tout themselves as 'experts'(see : Every School a Good School http://www.behaviour4learning.ac.uk/attachments/6bc4342c-2016-461f-9a8b-555a0d67809f.pdf . It will be you against the Headmaster or Headmistress. If you are the 'schmoozing' type, it might be an idea to start courting your child's school leaders and get on their right side.

Schools that previously may have absorbed your child's special need budget into their new carpet and office furniture budget can now turn around to you the parent and say 'sue me'. But wait, you can't because if this document becomes policy, you will have no legal right to do so. Special education budgets will be given directly to schools. Yes, the document outlines stringent tracking procedures for the money but you and I know what really goes on where money is concerned. For two years my son's school promised they would purchase a touch screen computer and computer programs to help him in his reading. It never materialised. What they did with that money I do not know. His classroom aide was split between 2 other children despite having a Statement that provided him the assistance of a full-time aide. You and I know as parents what the real deal is. See if you don't, you soon will.

The Ministry doesn't wish to change the law regarding Statements - that would be fraught with much difficulty. They just want to ensure that it will be very unlikely for your child to ever receive any legal recourse to services or support. The premise is that schools will be 'good' schools and that teachers will be 'good' teachers. If we wish it, it will come true?

Think I am kidding? Here is an excerpt from the document....."Only when a sub-group within each Multi-disciplinary Group (MG) ...is satisfied that the school has exhausted its own resources and can demonstrate that planned support programmes have not been successful, would the statutory assessment process (which may or many not result in the provision of a CSP) for a small number of children with SEN then commence." (page 44)

"We propose to change the current focus and dependence on external support to strengthened and improved provision within schools. The schools will be responsible for the vast majority of their children's diverse needs within a funding allocation....Initial diagnostic testing, if needed will be carried out at school level. The school will be expected to draw up a PLP (Personal Learning Plan) [no more IEP's]...which will form a comprehensive record of any diagnostic testing, interventions commenced and the progress expected and achieved within a period of time.

It will be important that schools should not assume that an increase in a child's level of need, or time within a school, necessarily calls for increased level of resource (for example classroom assistance or peripatetic teacher)...the employment of more appropriate teaching strategies is often as effective or even more effective in ensuring that a child achieves the agreed outcomes and level of progress." (pages 42-43)

The school boards are washing their hands of their responsibility for special education and laying it firmly at the feet of already overworked and ill-equipped mainstream school teachers. Considering there is still no certification required by teaching students regarding special education, I am at a loss to understand how teachers now or even in the next few years will achieve this super hero status of all things to all people. Further with administration and other paperwork duties, I do not know how teachers will ever get the time to teach our children. Extensive training plans will have to be undertaken by teachers, and much stronger relationships between schools will have to be formed. When will teachers ever get the time?

Nowhere in this document is there any mention of the fact that children like mine cannot cope in a class of 28-30 children and that no amount of teacher training will overcome my child's heightened sensitivities. No amount of teacher training will change the belief systems of teachers who think my child is just being 'naughty'. Will they really understand that he just cannot cope with 27 other screaming children, flourescent lights, smells, walls/floors and tables strewn with visuals? My child couldn't give a toss about league tables and P Scales. Teachers do though - how will my child fit into the current teaching construct?

This report suggests that label driven services will be a thing of the past. I totally welcome that! However, the report also suggests that our reliance on the medical model and labels will magically evaporate within a 3 year phasing in period. This is too quick, children will suffer. There is a presumption that Northern Ireland will somehow be ready to shuffle off label driven objectification of persons with 'disabilities'. The very fact 'disability' is still widely used says it all. My child has so many abilities but not once have they ever been 'professionally' referred to. It's never been about what he can do, but what he 'can't'.

For many children, holding it together all day at school means losing it at home where they feel safe to 'let go' of their stress and frustration. Parents then get blamed and have behavioural plans slapped on them by teachers who don't want to admit that their schools are not working for our children.

I personally would never want to be in a room all day with 30 other people. Further, the age at which children start school here is way too young. Some children are in day care virtually from birth, nursery from 2 years and 10 months and primary school from age 4. It has been proven that kids do better who start school later. No one is listening to that here in Northern Ireland. Children must go to school so their parents can ensure the economic system keeps on churning (case in point Income Support ending when children are aged 7). If I was to go to work, my child's babysitter would probably be making more than me. It's ok for her to babysit and take care of children, but it's not ok for me to take care of my own child? This is the mindset and much of what should change. I digress.

There can be no inclusion in Northern Ireland until special schools are a thing of the past. This document appears to be pushing for that. Currently, the belief system of teachers and many parents, however, is that children with special educational needs should be ostracised from their peers and placed in special schools where their own children can't be 'influenced' by children who are 'different'. I believe this is completely and utterly wrong, ultimately damaging and from a human rights perspective, wholly inequitable. I also know it's quite prevalent in this society.

God forbid that my child disrupts the cutting and pasting of Ronan whose mummy has her sights set on Cambridge. Who knows the untold damage that could be done if Ronan or Nigel's playtime is interrupted unnecessarily. Ronan and Nigel's mummys' concerns are currently written into the Code of Practice. Their children always come first. Don't believe me, then read your own copy and you will find that if a teacher deems your child is disruptive to the rest of the class, he can be removed. The disruptive behaviour I see in children my child's age is quite intense at times, they get up to stuff he would never dream of. Their cheekiness, loudness and lack of respect is something I have never witnessed in my own child. Still, if my child knocks over a chair or humms loudly or pours water over someone's crayon drawing, he may be excluded. It's not the behaviour that is being excluded though is it. It's the label.

This consultation document is basically suggesting that all children attend mainstream schools. I agree with that in principle. There are countries where this is the norm and though fraught with its own problems, is no worse than what we have here, minus the segregation, the 'hiding away'.

The entire responsibility to usher in inclusivity is being laid, however, at the feet of teachers, overstretched teachers who themselves are of the mindset and have been instrumental in sustaining the 'special school' dogma by labelling particular children in their class as 'behaviourally challenged', unruly to other children, etc. So now, these same teachers, with very little training (let's face it, autism training in Northern Ireland is a complete and utter joke!) unending paperwork and classes of 28 and more to teach, will now be expected to magically replace speech therapist, educational psychologist , occupational therapist, classroom assistant and more, and develop a whole new belief system overnight?

The consultation document suggests a 3 year phasing in period. The optimism of whoever made this suggestion is admirable, but completely out of touch with reality.

The document suggests your child will go to the local mainstream school. I couldn't be happier with that suggestion, I am a fervent supporter of full inclusion. What I won't be supporting, however, is the resentment that will ensue from teachers who were pushed too quickly, without satisfactory re-training, and who simply cannot cope, who will very likely blame our children and their parents for their heightened stress levels.

I also wonder what reception my child will receive from the other children in the class who may never have met a child with different abilities - how will they react? Will bullying increase? What are the belief systems of those children about children like my own? It's one thing to take the right to a mainstream placement, it's quite another having to deal with fear and ignorance of other children, and possibly even their parents.

It's very sad that there are more than a few parents who don't want their children in the company of 'window lickers' and 'spastics'. I apologise for the use of those words but they are still bandied about in Northern Ireland on a very regular basis by young and not so young children just like the "N" word that was used on the night that Romanian families had to flee their homes. It's one thing hoping that a parochial and ignorant subset of society will accept those with differences, it's another expecting that mentality won't be 'catchy'.

We cannot have inclusion in Northern Ireland whilst special schools remain full. At least 25 percent of parents already know from bitter experience, however, that their children cannot cope in oversized busy classrooms with 1/2 of a classroom assistant and very little general understanding of their child's need. For mainstream to work for children like my own, class size must be reduced. I don't see this happening and in fact the opposite has happened with many schools merging together or closing down altogether.

Teachers who are already overstretched, will have to re-train on and off-site in order to make your and my child's experience at their school worthwhile. Whilst they are updating their woefully inadequate skills, you and I will have very little legal recourse to 'encourage' these teachers to do so.

Unfortunately, all the training in the world will not make up for lack of intent, desire or will by teachers to include our children in their mainstream classrooms. I can imagine the teachers who are reading this document saying to themselves, 'how are we going to cope?' That is a very good question.

The bigger and more important question is how do I protect my child from suffering damage? (to be continued)

"In the first place, God made idiots. This was for practice. Then He made School Boards."-- Mark Twain

Autism Strategic Action Plan takes shape - PARENTS WANTED

2009-07-05T03:18:00.000-07:00

Do you want to make a difference in Northern Ireland regarding autism? Do you want to have your voice actually heard as a parent/carer? Here is your opportunity. No, you didnt get a leaflet outlining the information below, through your door, (in fact the first meeting to discuss this strategy publicly was only publicised 7 days prior to it actually happening.)

But, you do have further opportunities in the next month to attend meetings discussing the ASD Strategic Action Plan. Parents are being invited to attend these meetings, so that they can form the reference groups. Here is your chance to make a difference for your child. Parents are needed from every board area.

Please make an effort to attend the remaining meetings (cited below).

If you have complaints about the way things operate regarding autism in Northern Ireland, here is a chance to make a difference. It's a start and they state they 'really' want to hear from parents. This strategy needs new blood, get in now to prevent others speaking for you.

The next meeting is tomorrow (6 July) in Portadown (Seagoe Hotel) at 7.00pm.

I think that what the Autism Strategy organisers are looking for is to find parents who are knowledgeable, politically astute and who have the time to commit to this very important venture. They won't find you unless you present yourself. You will be responsible for shaping the autism strategy and forming/creating positive alliances and improvements in all areas of our children's lives.

Don't let the same old voices speak for you. No doubt certain organisations are going to 'pack' these meetings and cuddle up to the Chair, Dr Stephen Bergin. He is a very affable man, and very easy to talk to, but perhaps has something to learn about the 'politics' of autism in Northern Ireland. I am hoping that with his extensive experience, he will see through what is and has been been happening in Northern Ireland in terms of politics. Don't leave this opportunity to others because 'others' will certainly fill the vacant positions.

You have just as much opportunity to get involved in this as anyone else. Imagine setting the agenda for what happens in the future for your kids and mine! Slowly ever slowly things are changing in Northern Ireland and the government has realised that they must involve parent/carers/users. It's the law! Contact him via the phone number at the bottom of this page.

http://www.northernireland.gov.uk/news/news-dhssps/news-dhssps-june-2009/news-dhssps-29062009-health-minister-launches.htm

29 June 2009 - Health Minister launches new autism strategic action plan

An action plan that will deliver significant improvements in services for people of all ages affected by autism, their families and carers has been launched.
The Autism Spectrum Disorder (ASD) Strategic Action Plan (2008/9 – 2010/11) follows an independent review of ASD services which was chaired by Lord Maginnis.
Launching the Action Plan, Michael McGimpsey said: “From the outset I have been committed to improving care for those affected by autism. The need has been clear. This Action Plan will drive up improvements in the service for the benefit of all those affected by autism, their families and carers.

“I recognise that to do this partnership working will be vital. All sectors must work together and no one organisation can work in isolation. A joined up approach will ensure that the needs of children, young people and adults affected by ASD are addressed, through the delivery of high quality, timely and effective services.”
The Minister continued: “The Action Plan follows on from the excellent work of the Independent Review, chaired by Lord Maginnis of Drumglass, and I want to thank him and his team for the very valuable contribution they have made.”

A major action within the ASD Strategic Action Plan (2008/9 – 2010/11) was the establishment of a Regional ASD Network Group. The aim of this multidisciplinary, multiagency Regional Autism Spectrum Disorder (ASD) Network Group is to provide a regional perspective to the development of autism services and to oversee the implementation of the Action Plan.

Dr Stephen Bergin, Chair of the Regional ASD Network Group, welcomed the Minister’s support and encouraged input from parents and carers. He said: "Communication with service users, parents, carers and the voluntary sector is vitally important to the success of this action plan. To facilitate this, the Regional ASD Network is holding a series of open meetings across Northern Ireland where additional information regarding the Network will be shared. I look forward to working closely with services users, parents and all voluntary and community sector groups.”

Open meetings have already commenced and will continue to take place across Northern Ireland in June and July as follows:

June 29 - Omagh (Silverbirch Hotel).
July 6 - Portadown (Seagoe Hotel).
July 29 - Ballymena (George Sloan Adult Centre).
All events are scheduled to commence at 7pm.
Notes to Editors:
1. The ASD Strategic Action Plan and the Consultation Response Document can be found on the DHSSPS website.
2. The Regional ASD Network Group is chaired by Dr Stephen Bergin, Consultant in Public Health Medicine, Public Health Agency. Dr Bergin was a member of the Independent Review of Autism Services.
3. The Regional ASD Network Group will be supported by a Regional ASD Reference Group, chaired by Lord Maginnis, to provide valuable expertise and advice from parents, carers, and individuals affected by ASD as well as the voluntary and community sector.
4. Public consultation on the ASD Strategic Action Plan ran from September to December 2008. Over 450 consultation responses were received.
5. The ASD Action Plan is organised around five key themes:
service redesign to improve ASD care
performance improvement
training and raising awareness
communication and information
and effective engagement and partnership working.
6. Press enquiries to DHSSPS press office on 028 90522841. Out of office hours please contact the duty press officer via pager number 07699 715 440 and your call will be returned.