Exploitation of Parents (Autism)

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)

An Open Letter to AUTISM NI

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.

ABA in Northern Ireland - Got Money? Got ABA!

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

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

28 March 2011

"Health trust 'breached obligations' to autistic child

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

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

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

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

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?

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

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:

1. 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.
2. 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.
3. 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