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 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 School 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 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 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 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"
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 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 School 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 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 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 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"
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
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