Thursday, 21 May 2009

Middletown Centre for Autism - Funding Cut

SPECIAL NOTE:

A number of individuals (you know who you are) have contacted me anonymously with some very interesting facts and figures regarding autism/advocacy/politics/issues in Northern Ireland. If you are reading this I would be grateful if you would consider contacting me again. The fact that you felt your voice could only be heard anonymously, that you had to protect your identity (and ultimately your children's identity), says a lot about the state of affairs in Northern Ireland.

I detect a level of fear and intimidation felt by some parents to speak out against the status quo. One of you even intimated the fear of litigation being lodged against you if you expressed your real opinions. This is appalling. I doubt very much that you are the only people in the North who feel this way.

I would put to you that instead of fearing litigation that you consider instead the possibility of lodging a class action
versus the government/voluntary sectors for dereliction of duty towards your children. Parents have a right to their opinion, and to voice that opinion. Parents are experts regarding their children's autism and are their only real advocates. Every parent has a right to have their voice heard, and a right not to have their voice superseded by anyone else. I urge parents to speak their minds about what is happening to our children (or not happening). I also implore anyone who has received a threat of litigation or intimidation, either in writing or verbally, regarding speaking out about your child's treatment or your own, regarding autism, to not remain silent about it.



As an aside, this ( www.youtube.com/watch?v=vBgfDLnQyIk ) is a good example of what an autism rally should look like and an example of parents making their voices heard. We have 1.75million people in Northern Ireland. Apparently, there are 17,000 children and adults on the autistic spectrum. They and their families amount to a lot of people. Where are their voices?
(http://www.belfasttelegraph.co.uk/news/health/17000-people-with-autism-here-lsquoare-getting-raw-dealrsquo-14046146.html)

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The Middletown Centre for Autism idea is for now, on the shelf. The Southern Government recognised their folly (albeit 7 years too late), and cut their losses in this white elephant project. They have bigger projects to worry about like the Monaghan/Derry road that is going to cost 459 million euro.

In its 20 May 2009 coverage on the autism funding cut, RTE's website stated that "Today Mr O'Keeffe will confirm that the Government wants to pause on funding its share of the next phase. He will tell Ms Ruane the decision is due to the budgetary situation and for now he has no room to manoeuvre. A much more expensive plan is the proposed motorway project from the Monaghan border to Derry. The Government has promised £400m (€459m) for the work. So far there are no plans to pull back from that commitment."( see: http://news.ie.msn.com/article.aspx?cp-documentid=147424549 )

Roads generate money. Autism depletes money. It's a no-brainer really.

For those of you who are not familiar with the Middletown Centre for Autism, it was a joint North/South Initiative ostensibly created to promote 'excellence' in autism, via a centre, a complex, where children would come from all over the country to avail of specific services.

The idea was formally launched in 2002, and seven years, and 7 million pounds later, the fate of this centre looks pretty much sealed - and not going ahead. Catriona Ruane, Minister for Education responded with her infamous bullish take on things, and says she is going to push it through regardless, even though no one, including her, knows where the money is going to come from. With elections coming up, every head counts, and I fear Sinn Fein, so fond of their cross border initiatives, see a loss of votes over the funding cuts. I haven't heard anything clever regarding autism, being uttered by Catriona Ruane yet, and I hope her sputtering is short lived. The fact she wants to water down the definition of special needs and make it even more difficult for our children to obtain help gives me no confidence in her whatsoever. See: (http://www.theyworkforyou.com/ni/?id=2009-05-19.4.1) for a run-down on her plans for the special needs budget. Her 'insistence' regarding this centre serves her party, not my child.

If you have never heard of the Middletown Centre,

(or the 1. Middletown Centre for Autism Excellence, or the 2. Middletown Centre of Autism Excellence, or the 3. Middletown Centre for Autism Promoting Excellence or the 4. Middletown Centre of Autism Excellence),

you would be in good company. Despite its many names, the secrecy surrounding the centre has been akin to the G7 talks. For the past seven years, parents have been asking questions, but to no avail. Parents were not informed, not consulted and not invited to participate in the development of this centre. It was a purely us (professionals) vs them (parents/children) approach. This article ( www.sinnfein.ie/news/detail/23456 ) sums up questions that continued to be asked by parents throughout the past seven years and which still are not answered.

The seven million pounds spent on this centre so far seems, in light of the other recent news stories, to have fallen into the backdrop. Sexual, physical and emotional abuse of children by the Catholic Church, together with the Parliamentary Speaker and expenses rows consumed the autism story. It was a one day wonder and I have not seen mention of it again. Considering the institutional abuse in this country of vulnerable children in the care of so-called pastoral caretakers, Catholic 'teachers', I wouldn't send my dog to Middletown. My child will never be out of my sight.

Further, the belief systems of those who hatched up this idea are reprehensible. Our children, those who have been failed by the educational/social systems and who may have naturally developed distrust and fear, culminating in the dreaded 'behavioural' problem, would be tagged and unceremoniously whisked away to an autism de-programming centre. The mind boggles - I imagine retired teachers, 2nd year psychology students and general do-gooders with no children of their own but with letters behind their names, projecting all of their negative beliefs on our children (you are bad, which is why you are here; you don't fit in, which is why you are here; we are right, you are wrong, which is why you are here; we need to justify our hefty salaries and seven million wasted pounds which is why you are here!) What must the rest of the world think of us? Present this scenario to parents in the USA and they would recoil with horror.

Ruane tried to make links between this proposed centre and the TEACCH centre in North Carolina, in her Stormont speech on special needs (www.theyworkforyou.com/ni/?id=2009-05-19.4.1 ) This was an interesting comparison, considering the TEACCH program comes with a set of particularly odd and negative belief systems as well. Considering TEACCH is the only intervention strategy used in the North, these comments were illuminating. There has always been a connection between the TEACCH centre and the autism boffins in Northern Ireland. It would take a book to delve into this properly but soon I will endeavour to uncover the minutiae of that very odd relationship. Needless to say it's to do with money and not wanting to spend it.

The remarks of AutismNI/AutismUlster CEO Arlene Cassidy were interesting, following the breaking of this story. Maggie Taggart's piece on BBC1 found Ms Cassidy to be quite sanguine about the whole matter and altogether non-plussed. (see for yourself here: (http://news.bbc.co.uk/2/hi/uk_news/northern_ireland/8056444.stm) In this clip Ms Cassidy says, "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."

I do wonder if, by using the word "otherwise", AutismNI/AutismUlster hopes money ring fenced for the autism centre, might now come to the charity? As far as I know, AutismNI/AutismUlster was not invited to roll-out training at the Middletown Centre. Perhaps they see this funding setback as opportunity for the organisation, a chance to usurp the Department of Education/Health's role in autism leadership? There is talk of possibly developing the post of an Autism Commissioner. Would the incumbent to this post be culled from the voluntary or statutory sector? There is a lot at stake right now in terms of autism in Northern Ireland and whoever fills this post will inherit substantial influence. Is autism now more than just about 'the money' or is it about the 'power'? Is it about making sure parents never get ahead of themselves and ensuring that spending is corralled? The public (at least those who paid attention to the news for the brief 20 seconds of coverage on this story) might be feeling resentful that seven million was wasted on children with autism. How will future spending on our children be greeted? Will the public blame our children for this spend in the same manner that those who developed this centre blame our children for their 'failure' to comply?

I did expect AutismNI/Autism Ulster to be more vocifereous in its remarks regarding the funding cut to the Middletown Centre. Monies to fund the centre came from the Northern Ireland special needs budget, your child and mine are going to suffer because of this. The 'oh well' attitude was surprising considering I know parents who were indeed jumping up and down with anger and frustration over the lack of transparency in this matter - you did not hear their voices. Well actually, if you were listening to Radio Ulster at about 7.15am on Tuesday 19 May 2009, you would have heard a sound clip from one parent who said she did not want, and never did want this centre. Unfortunately, this coverage was cut from the program, and no mention was made of it again.


AutismNI/AutismUlster were very much in support of the endeavour from 2002 onwards.

On Friday 28 September 2007, AutismNI/Autism Ulster made the following comments: ... ‘It is a milestone in the campaign for government recognition of the specialist needs of children challenged with the social, communication and behavioural difficulties associated with Autism. The development of the Centre of Excellence provides a tremendous opportunity to make a wide range of interventions known to be effective in ameliorating the long-term effects of Autism, more accessible to the wider community. PAPA, the Autism Charity for the North of Ireland and Donegal, believes that the Centre of Excellence will act as a catalyst for the enhancement of awareness, expertise and research activity regarding Autism throughout the island of Ireland. We look forward to playing our part and working with the Education departments, North and South, to ensure that the Centre of Excellence for Autism is second to none’". ( www.niassembly.gov.uk/qanda/2007mandate/writtenans/070928.htm )

Where did all that previous enthusiasm go?


The NAS (National Autistic Society) were also sedate in their remarks, stating only that children were 'slipping' through the net'. Considering only 70 of Northern Ireland's children were ever going to get through this centre per year, and even if it was the best centre on earth, plenty of children would still 'slip' through that 'net'.

I now know of 80 or more children just in my own personal family/social circle who have an autistic spectrum condition, many of whom need help with very acute difficulties. Multiply that with the rest of you out there, and the statistics will show most of Northern Ireland's children would never get a look-in into this centre. Equity issues, child protection issues, even the very name of the centre were never resolved. Apart from the money wasted, I personally am sighing with huge relief.

It was madness from start to finish. That's why it was kept so secret, they knew it was madness. Seems anything goes where autism is concerned. A vacuum exists in Northern Ireland regarding autism and nature so loves a vacuum.

So to make up for the empty space of no services, no equality, no understanding, 'they' thought they would overcome all of that with a hatchet job of a 'centre of excellence'. I believe there are now, more than a few beaurocrats hoping this elephant will be allowed to retire. Very little thought was put into the idea, and whoever did think it up, had aspirations well beyond their means. We are a poor cousin in terms of autism compared to anywhere else in the 'developed' world, someone clearly got ahead of themselves here, someone who wanted to run when they are only learning to walk.

I ask you though, what would have been worse - an expenditure of 7 million pounds, or the trauma of hundreds of vulnerable children forced to leave their homes for up to five weeks to enter an autism 'rehab' centre, miles from home, without their parents and family support. Just imagine these unfortunate children subjected to run a gauntlet of behaviourists and mentalists all with the same belief system about autism (this kid isn't fitting in = 'bad').


What we really need is a centre for those who work with autism and our children to allow them to undergo de-programming of their negative belief systems and to provide them with an opportunity to confront the damage they have waged on our children as a result of their own ignorance and arrogance. For the teachers who view your child's stimming behaviours as something 'weird', 'bad', or unacceptable, they would need two weeks in group therapy to help them overcome their beliefs about conformity. They could then promote their new understanding to all the students they work with. This would foster acceptance and help to shuffle off stigma. For the educational psychologists who continue to speak in jargon and view parents as a hindrance rather than the central link to the child, they would require three intense weeks of having their own IQ assessed, as well as their social skills scrutinised, particularly their skills that involve working with parents.


All the children (guinea pigs) that would have been fed through this centre, had a very lucky escape.

The powers that be in Northern Ireland, both on a statutory and voluntary level, created the problems our children now face. They then offered a quick fix solution to their own lack of action by coming up with the idea of a centre of excellence. They hoped that vulnerable and desperate parents would bide their time for seven years, and understand that the wait for 'excellence' was worth it.

Will lessons be learned from the mistakes made? How much provision and forward planning was put on hold while the Province waited for this miraculous centre to materialise?

I leave it to you to ask more questions.


"You cannot solve problems with the same level of consciousness that created them." Albert Einstein




Tuesday, 12 May 2009

Autism Legislation in Northern Ireland

To readers, this update is long and laden with many issues/concerns. I have been talking to a lot of parents recently, particularly parents of newly diagnosed children. With few exceptions, these parents are scared, isolated, confused and angry that following the diagnosis of their child, (a diagnosis some of them had to beg for), no help has been forthcoming. I brought up the issue of the proposed autism Act with a number of these parents and after discussing what the Act might or might not be doing for their children they were unanimous in their response. "Give us access to knowledge, give our children appropriate social and educational opportunities and stop isolating our chidlren."


One parent in particular asked me "what good is an autism Act when we are sitting here with a child who doesn't know its own parents? He needs help, we can't afford it and in Northern Ireland, even if we could afford it, very little is available."

T
he autism charity
AutismNI (Autism Ulster/PAPA/ACT) has lobbied for some time for legislation (they want it to be called the 'Autism Act') to underpin the "rights" of individuals with an ASD in Northern Ireland. When convenient, AutismNI/Autism Ulster rolls out their support of this non-existent Act to show how committed they are to the label of autism. The idea has dragged on for years, and I personally think that all it is, is really just a stick that AutismNI/Autism Ulster grabs to beat it's own drum.


One cannot examine the proposed legislation without looking at the organisation that is spearheading it.

From reading AutismNI/Autism Ulster's proposals for legislation, together with the Autism Bill presented at Westminster recently, these proposals are not about rights. They are about underpinning self fulfilling prophesies that our children will always need help, and will always be viewed within a medical model, will always need services, will always have a label and will always be dependent on the state or their carers. Just like the NAS battle cry 'autism is a lifelong and incurable condition',(and don't you EVER forget it), AutismNI/Autism Ulster seems more interested in existing as an entity than in helping people with autism.


England has a multitude of educational facilities specifically tailored for young people with autism. The NAS has its own schools in England. Whether these facilities are 'good' or 'bad', at least they are something. In Northern Ireland we have nothing like this. What we do have is over 25 percent expulsion rate for children on the spectrum.

One guarantee for our young people is that if you do nothing, they will suffer.

If you believe autism is 'forever' or that there is very little that can be done, you can be sure that very little will change. For each and every newly diagnosed child, the same broken wheels turn - depressing diagnosis, no support for the family, limited services for the child, inappropriate nursery/primary school provision, no money, intransigence, etc, etc.

What is the autism Act going to do about this and when?
See the following link to find out how one young man has not been able to return to Northern Ireland for 10 years due to lack of services here. Where are his rights to live in his homeland with his own family? (http://www.nwipp-newspapers.com/FH/free/364604903183554.php)


I have never contacted AutismNI/Autism Ulster, never met them or availed of their expensive training packages. This goes for many other parents I know. There must be some parents who attend their highly regulated support groups, (and of course who don't mind fundraising off the backs of other financially stretched parents), but I doubt very much that parents who 'question' are welcomed, at least from the stories I have heard. All parents who have a child on the spectrum have questions, perhaps those questions are asked outside the confines of the AutismNI/Autism Ulster living rooms cum 'offices'?

Perhaps Autism NI/Autism Ulster could answer some of my questions - from my site tracker, they have visited this blog no less than 218 times in the last month (11 times today, and it's not even 9.00am!) I hope staff members are not using 'company time' to do it. If you have questions about the efficacy or need of the proposed legislation, you could post them to this blog because the staff at AutismNI/Autism Ulster are definitely reading this.

Like any good business, (and it is a business) Autism NI/Autism Ulster should understand the importance of a complaint department.

I guess all is rosy in AutismNI/Autism Ulster land. No complaints, no suggestions - no progress. The proposed autism Act has dragged on for years, its simply a stick that AutismNI/Autism Ulster grabs to beat it's own drum.


Legislation like the proposed autism Act guarantees more for service providers than it ever could for the individual. There is now a huge and growing service 'industry' surrounding autism and legislative proposals like these will go far to protect this industry and ensure our children will need that industry. AutismNI/Autism Ulster is associated with Autism Initiatives (both organisations occupy the same location?? apparently

Autism is becoming a make-work project and will continue to be viewed that way until parents understand the difference between what real 'help' is versus maintaining the status-quo. 

Education for our children at young ages is not just about education, its about 'intervention' for autism, first and foremost addressing the social communication needs of the child. The educational matters come second compared to our children's need to learn social skills and be able to advocate for themselves.
see this website: (www.peatni.org/pdfs/5412_A4_Leaflet.pdf ) for an upcoming ABA conference provided by PEAT (Parent Education as Autism Therapists)

To not provide access to therapeutic programs is denying my child the right to a future. We know these interventions exist but they are very difficult to obtain here in Northern Ireland and more difficult find the money to pay for them. So the majority of us must accept a selection of 'special' or mainstream provision, both of which are usually wholly inadequate for our children.


This is where legislation is needed. I want an Act that addresses our children's social communication difficulties but furnishes them appropriate and sustainable educational and therapeutic services delivered by specifically trained professionals (not 18 year old underpaid classroom assistants) I can dream. I also would like legislation that doesn't cost other people with disabilities the price of their own services.


This Act is an attempt to 'streamline' the industry, make it as cost effective as possible. Gathering statistics is an important part of this proposed legislation. Knowing how many persons have a diagnosis will give the government and service providers plenty of information on how to tailor services, how much to spend, how much NOT to spend and where to spend it. I don't know if this kind of information is discussed at AutismNI/Autism Ulster coffee klatch support groups, but I doubt it. If it was, parents would think twice before signing their name to the Act proposal.

Clearly the Stormont Assembly have not thought about this judging from their recent ill-informed and mis-informed debate on the topic.

Scores of speeches, see here (http://www.theyworkforyou.com/ni/?id=2009-03-31.4.1&s=autism#g4.52 ) that were inordinately painful to read, waxed lyrical about the 'need' for legislation and not one of these speeches addressed the question of what really IS autism, and who really HAS it. In typical Northern Ireland style, an argument ensued when someone dared to question the efficacy of not only the proposed legislation but the driving force behind it (AutismNI/Autism Ulster)

Unlike the lemmings in the legislature, persons with an autism label do not follow any one path, do not think the same, do not feel the same. Complications like visual agnosia, semantic pragmatic disorder, dyspraxia, hypotonia, auditory processing delay, sensory integration disorder, and many many other difficulties are experienced by persons with autism. So if your child has Down's Syndrome accompanied by autism, what will an Act do for your child if autism is a secondary diagnosis? Where will the money come from, the entire special needs budget? Will the child with Down's Syndrome be 'paying' for the child with autism? The mind boggles.

ANNOY A POLITICIAN - THINK FOR YOURSELF

There is a plethora of rather horrible and dangerous legislation being passed lately worldwide. Just because a proposed piece of legislation might have the word 'autism' in it, does not mean it will be for the benefit of those who have the diagnosis.

In the Belfast Education Board's recent 'Senco News' magazine, (Edition 7, Spring 2009) it is stated that the Chief Inspector's Report found only 4 percent of pupils in Northern Ireland have a statement of Special Educational Needs (SEN). 17 percent of Northern Ireland pupils have been identified as having special educational needs (the real figure is much higher, and has been estimated at 25 percent or more).

Many of those pupils will have autism or autistic spectrum conditions. A statement of special educational needs is indeed a legal document. It has legislation to back it up. Yet, only 4 percent of those who need this document, actually have it.

Despite having this 'legal' document, many of those pupils will not be in receipt of their legal entitlement due to the document's failure to notate their needs and provision accurately. What a child needs and what a child gets in Northern Ireland depend on so many variables. If a parent does not strongly advocate for the child's right to entitlement, the statement could well become useless. Similarly, the post code lottery of entitlement in Northern Ireland is dictating whether children are receiving speech therapy, classroom assistants and occupational therapy. This has nothing to do with the law, it has to do with money. Clearly, the 'law is an ass in this regard.

What young people need today is legislation to back up the legislation.


You can see how legislation guarantees nothing, apart from money saving. Who more than AutismNI/Autism Ulster, has a vested interest in ensuring that services for individuals with autism are 'legislated', or that incidents of the diagnosis are counted and statistics recorded? Part of AutismNI/Autism Ulster/PAPA is their own profit making company 'Autism Community Training' otherwise known as 'ACT' (yes the acronym was deliberately chosen to reflect the charity's political ambitions). Are you getting the picture yet?

Jobs are at stake with AutismNI/Autism Ulster. God forbid that children don't need these services. God forbid, children with autism get appropriate education, social acceptance and understanding, independence even! - oh dear, we can't have that. "No, we must ensure that parents continue to be vulnerable, uninformed and that they rely on us, their children must always need services! - We have our contracts with the Health Trusts to protect!"

There are so many parents who continue to buy the negativity, that is doled out to them by so-called 'professionals' regarding their children and their limited 'potential'. This Act fits in nicely with that mindset, and bolsters the clinicians who to this day tell parents that their children will 'never' walk, 'never' talk, will 'never' attend mainstream school, never have friends, etc. Imagine if such an Act was to read: 'to secure the right of every person with a disability to a full and productive life devoid of the negative and injurious belief systems of others and to make it a crime to project your negativity onto a young child or adult alike'.

Securing the rights of persons with all disability is what we need. Label driven legislation will never work, and is inherently discriminatory. Guess what? We already have it with the Disability Act.
We also need more parents to make their voices and the voices of their children heard. I implore parents to stand up and be counted minus the shackles of autism charities and voluntary groups who in the main, seem to be telling you what to do. I can remember contacting the NAS years ago with a query about an article I was writing. I was advised immediately that if I was a member of their organisation that anything I wrote had to be vetted by them first. I was not a member and politely told this NAS staffperson where to stick her organisation's stasi-like policy. The NAS just like AutismNI/Autism Ulster like to believe they speak for you and me. You and me know that it's impossible to be all things to all people. They end up serving themselves first and sometimes our children don't even get a look in.


Upon reading the speeches of 31 March at Stormont by MLA's regarding this proposed Act, my heart sank at how incredibly ill-informed, backward and dangerously parochial these people are. We voted these people in, we need to inform them. They are clearly taking their direction from AutismNI/Autism Ulster. Not one of them admitted to speak from personal experience of autism and it was, in my opinion a mutual appreciation exercise.

Why wouldn't they support AutismNI/Autism Ulster. With the offer to MLA's of free junkets to Washington (which they accepted and apart from only one of them, never publicly divulged their involvement) and substantial money paid to buy lobbying 'tables' well, you just can't beat the influence of a pound.


Buying legislation is popular in today's politics and those who praised AutismNI/Autism Ulster during this debate, were among those whose tickets to Washington were paid for by the charity (I use the term 'paid for' loosely - the monies were inevitably culled from AutismNI/Autism Ulster's membership fees/fundraising events). If they specifically raised money for the purpose, they did not publicly advise their membership.

Nothing in this world is for free and those members who accepted this freebie trip (and all the other goodies that AutismNI/Autism Ulster may have plied them with) are now expected to 'pay back' by supporting the idea of the autism Act. Classic!

George Savage MLA brought up this 'matter' on 31 March 2009 in Stormont. It's interesting and comical to read how his comments touched a nerve. Dominic Bradley 'protests too much' when he responds to Savage's comments at Stormont on 20 April 2009:
5:00 pm
Dominic Bradley (Social Democratic and Labour Party)

"...Deputy Speaker. During the debate on world autism awareness day, which was held on 31 March 2009, Mr Savage made a remark that could be construed as meaning that Members benefited financially from their work with the charity Autism Northern Ireland. Members of the all-party group on autism, and Autism Northern Ireland itself, expressed extreme concern to me as chairman of the all-party group about the import of those remarks. Therefore, I ask that the Speaker examine those remarks and rule whether there are grounds for asking the Member to withdraw them. "
Perhaps Mr Bradley who is very au fait with AutismNI/Autism Ulster would like to explain to the Assembly and to the rest of Northern Ireland what it all does mean - who paid for this excursion and why? Nothing has come of it from what I can gather. It just sort of hangs there in the ether with a big question mark over it.

Best to clear it up once and for all don't you think Dominic?
John McAllister dutifully registered his involvement but others did not. Why? Neither did Michelle O'Neill (SF) et al. The register was set up to, “provide information of any pecuniary interest or other material benefit which a Member receives which might reasonably be thought by others to influence his or her actions, speeches or votes in the Assembly, or actions taken in his or her capacity as a Member of the Northern Ireland Assembly”. Members are required to keep that overall purpose in mind when registering their interests." At least, Dominic let us know where the monies came from. Flying, dining and accommodating 12 people to Washington (not a cheap place) via a charity is some feat. Surely members of AutismNI/Autism Ulster deserve to know what money was spent and why. Northern Ireland - so funny, if you didn't cry first.

see link to Register of Members Interests here: ( http://www.niassembly.gov.uk/members/expenses/register2.htm )

"One of the penalties for refusing to participate in politics is that you end up being governed by your inferiors." - Plato

Socrates was also known for posting questions to which there were many many answers, none of them 'correct'. Northern Ireland needs some Socratic method - questions are not being posed, much less answered. This in itself poses another question - why?

What are you afraid of? Please speak up.