Friday, 27 March 2009

Middletown Centre for Autism - 6 Year Wait and Counting

Middletown Centre for Autism Excellence - sounds good doesn't it? Despite the fact it was announced in April 2002 and millions upon millions of pounds culled from the special needs budget have been thrown at it, not one child has benefited. At this very moment more staff are being recruited on top of the 12 directors and numerous existing staff, all who have been collecting paycheques for up to two years already. Northern Ireland is currently suffering a billion pound deficit and special needs budgets have been cut for classroom assistants and statements. Children with an entire range of needs are being affected, yet Middletown Centre for Autism continues to attract money with little effort.

Obtaining a Statement of Special Educational Needs, a legal document outlining educational need and provision for that need, is becoming more and more difficult to obtain in Northern Ireland. Children who deserve a Statement are being relegated to special schools or placed in mainstream schools without any support or right to support. Most children in Northern Ireland who have special needs walk into schools with no rights, but this Centre will offer a chosen few specialised help costing 25,000 GBP each. That would pay for 2 classroom assistants for each child for a year.

The Middletown Centre for Autism, located in Armagh, Northern Ireland, is a political move on behalf of the North/South governments to split costs and appear to look like they are committed to doing something about autism to make up for the fact that they have done very little so far.

Parents of children who have autism are currently drowning in a sea of red tape and never ending obstacles to find help for their children. For some of these children, only 70 of them, they will one day, be able to walk through the doors of a state of the art autism centre and receive help costing thousands upon thousands of pounds.

What about a Centre for Spina Bifida Excellence, or Down Syndrome Excellence? The parents of children whose difficulties do not arise from autism must be getting very angry that the Special Needs budget is being funneled into a Centre just for autism, a non-existent Centre. They must be very angry that money which could have purchased their children special equipment and services is disappearing into the bank accounts of persons who have yet to treat one child.

3.5 million pounds per year has been spent on the centre, and probably a lot more. No one knows, no information has been forthcoming though some political representatives do want answers. see:(

Imagine the amount of classroom assistants 3.5 million could buy. With the lousy wages assistants are currently paid, hundreds could be recruited. Imagine the intensive training programs that could be provided to parents to help them work with their child's sensory systems or teach them how to facilitate language and communication.

Two years ago, the public was consulted (and I use that term loosely) about this centre. I attended two of these consultations in the North. Headed by Mr Gary Cooper, CEO of Middletown. These were an exercise in public schmoozing. Attendees received some nice hand-outs, a steaming cup of tea, a very affable greeting and a firm handshake from the CEO. However, they left as ignorant of the facts as when they arrived.

Most parents in the North were not even made aware of the consultation. To my knowledge, it was not advertised in the mainstream media. I personally heard about it via word of mouth.

I still have my Middletown hand-out from those meetings. It said very little. Those persons chairing the meetings appeared to have had pathological avoidance disorder as no questions were answered. When questions were asked, an instruction was given to "write them down on your form so we can submit it to the consultative process.” The attendees thought they were attending a consultative process.

What is this centre? What does it claim it will do? After one weeds through the saccharin laced adjectives that have been used to describe the centre, it appears to be a hothousing project or “boot-camp” for children with “challenging” behaviours, children whose needs cannot be met by their teachers.

No one really knows, what the centre is going to do because the goal posts have changed repeatedly during the past six years. Even the autism charity AutismNI doesnt know its own mind regarding the Centre. At the start AutismNI was very vocal about its support for Middletown, then its support waned, now it is difficult to know what they think, they are quiet.

Most of all, parents have not been advised of how this centre will work, what treatment their children will receive, or even what the sleeping arrangements will be. The Centre is nowhere without children and the parents of those very important children have not been consulted.

140 children, 70 each from North and South will attend per year. It is not clear how selection of such children will be made, but it appears they will be selected from mainstream schools. If that is the case, the centre will not be seeing many children with autism. They will see children who have Aspergers Syndrome, or PDD-NOS though. Children with autism are usually fast-tracked into special schools in Northern Ireland, segregated away from the “normal” kids. In effect the Centre may never see a child with autism.

How children will be referred to the Centre is also unknown. Only 70 children per year will be admitted from the North and it will be very interesting to see if parents who know how to work the system will have an advantage over parents who do not.

For those lucky (or unlucky) 140 children who will use the Centre, a siege will be laid upon them to make them more manageable for their teachers. Educational psychologists, speech therapists, behavioural interventionists and more will work with the child hopefully sending him/her back to school/home with a healthy respect for compliance. Home educating parents should note that their children will not be considered for treatment. This is purely for the benefit of teachers who can't cope.

The idea of sending children, particularly young children away from their parents for up to five weeks is quite unbelievable and a potential nightmare for the child..

The Commissioner for Children has been very quiet regarding this Centre despite the equity issues. Child protection issues abound as well. Parents have not been advised what this Centre will look like but surely the Commissioner knows. If she doesnt the Inter-Board Autistic Spectrum Disorder Group should be able to tell her. (Has this group consulted with parents I wonder?)

Reference to this group can be found here: ( Carmel Hanna MLA questioned the Education Minister on 24 November 2008 regarding how her department and others co-operate regarding pupils with autism:-

"The inter-board autistic spectrum disorder group, which was established in 2002 to advise the regional strategy group on special education needs and the Department of Education on issues relating to ASD, liaises regularly with representatives from the trusts. At those meetings, discussions are held on a range of topics relating to autism: the diagnostic assessment of children and young people; parent training; support for community services; joint training arrangements; and joint strategic planning.

The inter-board autism spectrum disorder group has developed an ASD strategy. We have also produced classroom resources to support positive interventions for children with ASD, and we are doing that on a North/South basis. There is, therefore, good sharing of practice and resources. The Department of Education, in partnership with the Department of Education and Science in Dublin, also advanced the arrangements that were necessary to enable the Middletown Centre for Autism to begin offering services in December 2007. That marked an important development in the delivery of educational assessment for children with significant levels of autism."

Selection of children to attend such a centre cannot be equitable, and cannot be ethical. The Centre touts itself as a Centre of Excellence. With the thousands of young people in Northern Ireland today who have autistic spectrum disorders, how is it equitable to provide “excellence” to some, and not to others? If the Centre is a Centre of Excellence what are the rest of the North's children getting - mediocre? It is completely unethical to provide gold standard service to some and not to others. It is unethical to spend a considerable amount of the province’s special needs budget on 70 children and not on the rest.

In terms of financial equity, the Southern government is getting a raw deal. The population is considerably greater in the South yet admissions from the South will be the same as from the North – 70 per year. The costs of the Centre are going to be split 50/50 North and South. This does not make sense.

Plenty of government representatives have raised serious questions about this centre. Last Monday on 23 March, a question was posed in Stormont, as to how much the centre has cost so far. I very much look forward to the answer that will be provided to that question.

The answers will undoubtedly lead to even more questions.

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