Thursday, 9 August 2012

An Open Letter to Arlene Cassidy from Dr Mickey Keenan, University of Ulster

Dr Mickey Keenan has written an open letter to the autism charity AutismNI.

In his letter he asks AutismNI CEO Arlene Cassidy to support evidence based education for children who have autism, i.e., education based on science and measurable evidence of efficacy.

The letter is overdue, and highlights the need for transparency and dialogue regarding autism education and services in Northern Ireland. Dr Keenan has written a letter that parents should have written. Please support him in quest to obtain answers regarding the education of your children with autism in Northern Ireland.

You can view Dr Keenan's open letter here.

You may ask why Dr Keenan bothered to write such a letter to a charity.

Recently, Arlene Cassidy, the CEO of AutismNI, was appointed by the government to chair an inter-departmental research committee on autism. Together with other voluntaries, she and they will be looking at autism research, something that has not been done in Northern Ireland.

Despite the existence of a plethora of international autism research in the last 10 years, no one has been deferring to the evidence coming from that research, nor has it been applied or used in Northern Ireland. Arlene Cassidy and her fellow members of this research group have a duty to YOU and to YOUR children and to all who have and live with autism in Northern Ireland to be fair, equitable and fully cognisant of what is going on in the world of autism today. 

No longer can Northern Ireland be selective in terms of what it wants or does not want to know about autism. No longer can your children's education be based on someone's 'opinion'. No longer should you accept programs like AutismNI's 'keyhole' program. It's a marketing tool, developed to provide AutismNI with a 'brand', nothing else. Children who were unfortunate enough to have received this 'keyhole' program missed out on having a researched and evidenced based program with real and measurable outcomes.


The Keyhole program filled a  void 20 years ago when Northern Ireland was lost in terms of how to find help for children with autism and unfortunately, now, 20 years later, these programs are still being offered. They will continue to be offered until parents become informed.

The government does not provide ANY autism 'interventions' or treatments for autism whatsoever, even though it pretends otherwise.  Nothing they provide is based on sound science and they do not dare even use the word 'intervention' because they know they would be lying.  If you want evidence based interventions and treatments for your child's autism, and you live in N.Ireland, you must source and pay for them yourself.

Please read Dr Keenan's letter and take a cue from him to ask further questions of the system that continues to churn out autistic adult 'statistics' in Northern Ireland - adults who have no jobs, no independence, no skills, no hope for the future.






===================================================================

8 comments:

Anonymous said...

i read this poost at 1 am this morning, and i have just reread it again. the so called asd team in belfast is a joke, st there training days they dont even gove parents time to ask quedstions or most of all talk to each other, i have been to a few talks about autism and i have to say this was th worst, Dr Mickey Keenan can i please say ty so much for writting this letter as this blog is wer i have pound most of my answers in hte past year. to the blogger u dont knwo how much u have helped me. im not into joining a group and sitting round talking rubbish i just want to know wats out there and how i can help my daughter more and on this blog u have done that..... thanks again xx

AutismNorthernIreland said...

hey Anonymous - no need for 'thank-you's' - been there, done that, wore the t-shirt. If you have any questions you want answered leave a message at this blog and will try to help (if you want your questions left anonymous - let us know - or leave an email address and will email back)

There is no excuse for training being 3rd rate - did you get a feedback form from te training you received? Did you make the 'trainers' aware that you were unhappy? All this training costs money and they NEED to know if it is not effective or useful. Your voice needs to be heard!!

Desperate housewife said...

The letter (and the replies) have opened up the can of worms that is 'Intervention' in NI. Autism NI are employed by a number of Trusts to deliver 'family support'/ interventions/ training and it is clear from the replies that they have no intention of taking on board the huge weight of evidence for EIBI. They will continue to sell 'tea and sympathy' and a mish mash of TEACCH 'approaches' in a one size fits all package (and in this case I literally mean sell, this is not done for nothing despite the huge reserve of money they have,previously shown in this blog).

There is NO robust evidence for effectiveness of TEACCH. Why do they-and their many professional 'associates' in the Trusts - refuse to read the scientific literature & rely on their own preferences & so-called 'expertise'? How many of these well-paid 'professionals' spend more than half an hour once in a blue moon with an individual with autism, let alone 24/7? Their CEO is chair of the new Strategy Group's research Committee- let's see some evidence that Autism NI are actually taking research on board, informing & supporting parents about EIBI and other effective interventions.

Thanks to Mickey Keenan, for bringing this into the open, and to parents like Anonymous, who don't just accept whatever their Trust scrapes together to tick the box marked 'interventions', but go and look for themselves. And to this blog, because so much of this information would never make it to the wider public without you.

Patrick McCormack said...

Hello

My name is Patrick McCormack. I am father to an eight year old girl with autism. I live in Dublin and I have campaigned for the right of children with autism to have access to evidence based education delivered by appropriately qualified professionals. I am a qualified teacher and I am aghast at what passes for policy in this area in the Republic of Ireland. Here there is no requirement for teachers of children with autism to have any specific qualifications in this area.

I am aghast that the policy has no basis in research evidence, that our Department of Education has repeatedly ignored the wealth of research evidence that supports the efficacy of ABA, that it believes that two and three day short courses in 'autism specific interventions' (most of them with no research to support effectiveness) will equip teachers to meet the complex needs of many of the children with autism currently suffering in the school system.

Along with Dr Keenan of UU, Prof Karola Dillenburger of Queen's University and Dr Tony Byrne of PEAT I met with Mark Mullan, advisor to the current NI Education Minister. Following that meeting I wrote the following email to Sean Crowe TD, Education spokesperson for SF in the ROI. I, along with Dr Keenan and Prof Julian Leslie, had previously met with Deputy Crowe in his Dail offices:

Dear Sean

Last week I had the opportunity to meet with the advisor to Minister O'Dowd in Stormont. Dr Mickey Keenan and Prof Karola Dillenburger presented and cogently detailed the misinformation that has corrupted government policy on the education of children with autism on both sides of the border. My own research in this area shows that the misinformation comes for the same source with both jurisdictions relying essentially on the pronouncements of two individuals and inexplicably ignoring the vast body of international research literature that exists.

Here I have attached a link which illustrates the position that ABA holds in the US as patents, professionals and some politicians have joined to knock down the indefensible barriers and ensure that children with autism have access to evidence based educational services:

http://www.huffingtonpost.com/jeremy-hilton/the-day-the-world-changed_b_1747701.html

Now that Sinn Fein know of the serious shortcomings in policy here on both sides of the Border, and in the interests of working to change this as quickly as possible can I ask what the party plans to do both here and in NI to ensure that for a lot of children with autism, their right to an appropriate education does not continue to be denied and that proper account of the research in this area is taken.

To show that we continue to press this issue I attach a link from yesterday's Independent.

http://www.independent.ie/national-news/state-ignoring-autism-advice-a-year-after-specialist-school-closed-3190934.html

I look forward to hearing from you soon.

Regards
Patrick

I received a response which states that SF education teams both North and South are meeting in early September to discuss autism and ABA along with other matters related to autism. I hope that something good comes from this for children with autism both in NI and the ROI. However, I believe that the NI Education Minister needs to understand how important this issue is, how important it is that, for the first time, the establishment in NI consults with ABA professionals and their representative bodies, that it is not safe to rely on the jaundiced opinions of some civil servants and their regular 'go to guys'.

In light of this I would encourage all parents and professionals in NI to contact the Education Minister to let him know that you are aware of this upcoming meeting and what you would like to see emerge from it.

Best of luck.

daisy said...

Ok, instead of sitting complaining to any of my family who can be bothered listening to the same old stuff, I am going to get off my backside & write to John O'Dowd. If Education looks at the evidence instead of going on about some outdated Task Group report which was written by the same people who still aren't listening, it's a start. Even if they aren't going to be throwing money at ABA they might stop wasting it on useless 'TEACCH -type approaches' where your kid's teacher has sat in total boredom for half a day being 'trained' by somebody who might have been 'trained' in TEACCH themselves a few years ago.

Patrick McCormack said...

I see that some people are looking for a time, date and location for the meeting. I wasn't given an exact time and date other than "early September" and that the meeting would be with Minister O'Dowd. I believe it's taking place in Stormont offices though once again this was not overtly stated.

However, perhaps parents could write to Minister O'Dowd letting him know that you are aware that this meeting is taking place with SF education team from the Republic to discuss "the ABA issue and wider Autism issues", asking himm the time and date of the meeting while also highlighting why you think that this is such an important meeting for you and your child.

Also, might I suggest that you contact Professor Julian Leslie of the University of Ulster (JC.Leslie@ulster.ac.uk) asking for his and the DBA's support and input. Prof Leslie is the Chairperson of the Division of Behaviour Analysts (DBA) in the Psychological Society of Ireland. Following representations from parents in the ROI the DBA wrote to Minister Ruairi Quinn. I will attach an extract in a new post

If the DBA has involved itself in the debate in the ROI I am sure that it would only be to be willing to stand shoulder to shoulder with parents in NI.

One of the real failings of the DES in the ROI is the failure to acknowledge that ABA is a science. This failure, of course, has serious and adverse implications for standards of training for teachers, employment of appropriately qualified Behaviour Analysts, for quality of provision for children and adults with autism. Sadly, this misinformation has festered and will continue to do so unless it and the officials that repeatedly misinform Ministers are challenged at every juncture.

Regards
Patrick

Patrick McCormack said...

Extract from DBA letter to Minister Ruairi Quinn (pt 1):

“The field of study that is behaviour analysis, and of which applied behaviour analysis (ABA) forms part, is a science. The current committee of the Division includes academics that offer Masters degrees in ABA at Trinity College Dublin, NUI Galway, and my own university, University of Ulster. Over two-year postgraduate courses, we teach students the science of behaviour analysis, and how to apply it to human behaviour problems. Problem areas include those of children with autism, but many others including those arising from learning disabilities, brain injury, long-term psychiatric problems, and those in the broad areas of mainstream education, care of the elderly etc.

The Division of Behaviour Analysis has produced a brief paper for those outside the field that outlines the development of this scientific study of human behaviour over the last 70 years or so (I attach a copy). It also includes reference to some of the main reviews and enquiries that have been recently conducted by public authorities across the world in the last number of years that have concluded that an approach to the education and support of children on the Autistic Spectrum that is rooted in ABA is both effective and cost-effective.

These reviews are based on systematic reviews of the evidence that is available in peer-reviewed scientific journals of the outcome of use of ABA-based interventions in educational programmes, often in comparison with the eclectic mix of intervention strategies supported by the Department of Education and Skills that you refer to above. Such evidence- favouring the use of ABA- continues to accumulate: at the recent annual conference of the Psychological Society of Ireland (November, in Galway), Professor Richard Hastings (Bangor University, Wales) summarised in a key-note address some recent studies which he has been associated with (and which are appearing in peer-reviewed science journals) showing that ABA-based interventions in schools in England, Wales and Norway are more effective than the eclectic approach. The Norwegian study was designed to use only the same level of funding as would be available for the eclectic approach.

Patrick McCormack said...

Extract (pt 2):

I appreciate that government ministers must take advice, and must expect to receive quality advice from their advisers. It is the view of the Division of Behaviour Analysis that this has not been happening in this area. The other “approaches” you referred to, PECS and TEACCH, are sometimes marketed as though they were free-standing methods that can be taught in a few brief sessions. When their effectiveness is evaluated, as all educational practice should be, it is done using the methodology of behaviour analysis. While TEACCH is a package of behavioural and other measures (which have not done particularly well when formally evaluated), PECS is a behavioural teaching tool often used as part of a broader programme for the child which is based on the principles of behaviour analysis (that is, the science of behaviour analysis) and will include other components.

The approach used for each child should indeed be child-centred and tailored to the child’s individual needs as you said. In an ABA programme for a child with autism this is ensured through a complete behavioural assessment prior to any intervention and through continual monitoring of the child’s progress, with amendments being made (based on data collected) if parts of the programme are not effective. This means that such programmes take time, effort to develop and implement effectively, but, as Professor Hastings has confirmed, this can be done within the resources typically available for the support of a child diagnosed with autism.

There are many families in Ireland who are currently devastated at the recent loss, or impending loss, of ABA programmes that have supported the educational development of their children. Some of them have written to the Division of Behaviour Analysis asking that academics and professionals should voice their protest at the systematically misleading statements about ABA that emanate from the Department for Education and Skills, and that on this occasion were reflected in your Dail statement.

We share this concern, and the committee of the Division of Behaviour Analysis has asked me to write to you stating this. We would urge you to reverse recent policy changes that withdrew (in all but name) support for ABA schools, and to take advice from those properly trained in behaviour analysis in charting the way forward.”