Wednesday, 30 March 2011

Northern Ireland Trust Breaches Obligation to Autistic Child

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


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." "

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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?

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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

7 comments:

Anonymous said...

My husband and me spent over 25000 to buy ABA for our daughter. She is now 15 and is in a very good grammar school.

I dont know what we'd have done if we didnt know about AbA. We consider ourselves very fortunate and feel very badly for other parents who cannot afford to do what we did. Its a sin that children in NorthernIreland are treated so recklessly.

Please keep up the good work with your blogging. We need more people to speak up. There are lots of good good parents out there who are struggling. Dont forget we arent all accepting, but many i think do just take what is given because they dont know better.
L.W. Ballynahinch

Anonymous said...

I am a single parent (father) and have 3 children. My youngest lad has autism. I am a fulltime carer and cannot work (I also have a son with mild cerebal palsy)
My son with autism just turned 6. I want to know more about how to do ABA at home. Can you contact me so i can find out more. Can I do ABA for free at home?
James

Tracey said...

This case is a real eye opener. Its unbelievable really - I checked out the weblink you posted just to make sure it was true.

There is so much money involved here.I thought we had no money in NI. how much did the court case cost. Altogether this must be costing hundreds of thousands. I pay taxes so why are my taxes being used to pay for private companies to give education to a few children! Can someone please explain this to me. Why does all of this cost so much because the children want an education?

Minerva said...

Couldn't agree more with what you have said.We did PEAT ABA with our son (we were one of the first, just so lucky to have that support). We have other kids & like Anonymous, I couldn't work outside the home because he was such hard work at first. So paying huge amounts of money for a package was out of the question-but also, as a parent, why would you not roll up your sleeves & get on with some -admittedly very structured and highly consistent- parenting with the proper (ABA) support? As for existing services-both universities now run ABA training courses at differing levels so there is no excuse for ELB's & HSCT's to say it is too expensive to buy in services- why not train their own staff? They're paying them anyway- & I can't see any great results from their current 'eclectic' approaches.

Karola said...

Hi
great to see all your blogs. Keep the good work up!!
have you seen these? Feel free to blog about them:

Evidence Based Practice and Autism: A Political Minefield Part 1

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


Evidence Based Practice and Autism: A Political Minefield Part 2

http://www.youtube.com/watch?v=Y_IXmT57mU8&feature=mfu_in_order&list=UL


Evidence Based Practice and Autism: A Political Minefield Part 3

http://www.youtube.com/watch?v=BpUUnn43zHI&feature=mfu_in_order&list=UL

Karola said...

also please tell all your bloggers about
www.simplestepsautism.com

here they can begin to learn about ABA for very little money!!

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