Dr. Tim Stainton, UBC Associate Professor of Social Work and Family Studies, has requested the opportunity to reply to comments made by DR. Sabrina Freeman in this forum. Sabrinas post centered on a talk given by Dr. Stainton and the Community Living-IEII issues raised at the government sponsored Autism 2002 Conference. Her original post is available in the Government Topics room, dated October 22, 2002.
Dr. Staintons message to the group consists of two parts: an open letter to the discussion group followed by an excerpt-comment reply by Dr. Stainton to Sabrinas post. The second part has been reformatted with brackets in a Freemans post [Staintons reply] fashion. Aside from this minor formatting change to improve clarity, Dr. Staintons post appears unedited and in its entirety.
For those with thoughts and comments about the letter, discussion is encouraged. However, we know the issue of social services discretion over autism treatment funding is a highly charged and emotional issue for many, so please make every effort to critique ideas only and avoid personal attacks on the speaker.
Thank you.
Board Admin.
— BEGIN DR. STAINTON POST —
Dear Dr. Freeman,
I am very dismayed and concerned by your recent posting on the FEAT discussion list regarding my presentation at the Autism 2000 Conference and the Community Living Transition Process and want to clarify a few points to ensure your members are getting accurate information and to try and open up a more positive discussion on these issues which we all agree are critical to our son's and daughter's futures. Before I address some of the specific issues you raise I want to make a couple of general clarifications.
I have not been appointed by the Government to administer the proposed governance authority nor have I ever worked for, or under contract, to any BC government. I am one of 10 volunteer family representatives asked to sit on the Community Living Transition Steering Committee. I gave up much of my summer to try and work towards a better future for our children. No member of the CLTSC received anything beyond expenses. Incidentally, my presentation and the question period on Sun at the conference were also purely voluntary.
My second point is regarding your assertion 'that government bureaucrats have successfully turned a large group of parents of people with developmental disabilities against those of us who are advocating for autism treatment rights'. I am really puzzled as to how you could arrive at this conclusion from my talk. I certainly have never heard any parent express anything but admiration for the truly remarkable achievements of the families involved in the Auton Decision. My own view is the same. Certainly there may be fears that money will be transferred from other budgets to meet the requirements of the judgment, but the response has been more to ensure that money is added to the pot, not simply moved from other budgets, which is, I think, a fair concern and is not about dividing and conquering, but simply very legitimate worry about their own children's future which I know your members will readily understand. I would also point out that despite the omni-present issue of budget throughout the work of the TSC, one of the recommendations specifically refers to funding for autism treatment arising out of the Auton decision or otherwise and recommends that it be protected from any budget REDUCTIONS. Furthermore, we were careful to include a clear statement that any financial demands arising out of further litigations must be the responsibility of the government not the new authority.
I suppose on a personal note what saddens me is that you appear to be the one trying to divide families. I understand how hard you and your members have struggled to meet the needs of your children, just as the many families who are involved in the TSC. Some indeed have played a greater role in your victories that you may be aware-individualized funding would not be on the radar were it not for some of the families involved in this process. On an even more fundamental level, 'mental disabilities' would not be in the Charter of Rights were it not for the lobbying efforts of some of the people involved in this process-there was great resistance to its inclusion at the time and it was only through an eleventh hour effort that it was included. My point is, these families are not your enemies, they want the same things for their sons and daughters as you want for yours-further, the whole point of the process is to make sure families have the power and control they need to decide what is best for their children and that they receive the support necessary to make it happen regardless of whether it is ABA, housing or respite etc..
I would welcome the opportunity to meet with you and any of your members to discuss any of the issues you raise or the work of the TSC. Indeed I was approached by one of your families about whether this was possible and I am only to happy to oblige. I can appreciate that the speed and nature of the process has led to some understandable mis-understandings. The report is due out very shortly both electronically at http://www.cltsc.bc.ca/ and within a couple of weeks in hard copy.
Remember, the TSC is simply making recommendations to the Government; we have finished our work and have no further responsibility for implementation, the Minister will decide how and when he wants it to proceed. We need to talk and listen to one another now more than ever-let us not divide ourselves. As you point out your families have much to offer other families-and vice versa, so let's work together for the sake of all our children and everyone with a disability.
I have inserted some specific clarifications and corrections into the text of your original email below. I would appreciate it if you would post this letter and my response in its entirety onto your Chat room so families can make up there own mind. I would also very much welcome the opportunity to meet with you to try and 'clear the air' and see how we can work together towards a better future for all people with disabilities.
Respectfully Yours,
Tim Stainton
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By Sabrina Freeman (Freeman) on Tuesday, October 22, 2002 – 07:41 pm:
The Autism 2002 conference and Community Living Transition
Hi everyone,
[section deleted]
Individualized Funding through the Community Living Governance Model
As some of you may be aware, in April 2003 the IEII program is going to be administered by a quasi-government body. I heard a lecture given by Tim Stainton, Ph.D., U.B.C. Professor of Social Work, who is heavily involved in this transfer of funding authority. Dr. Stainton appears to be (at first glance)
[Given that ever since I was exposed to the concept by the Woodland Parents Group and the CLS I have studied, researched, written about, taught about and advocated for IF throughout Canada, Europe and the US I think it is safe to say your first glance is correct a proponent of individualized funding].
Right now there is a Transition Steering Committee in charge of the transfer of authority. Although this sounds like simply a bureaucratic reorganization (yet another MCFD 'restructuring' shuffle), I am somewhat concerned that a group comprised of parents of children with a VARIETY of special needs will have power over autism IEII funding. For those of you receiving this funding, it is important to remain vigilant.
[In very general terms this is correct but it is important to know that government made the decision to move virtually all services provided by MCFD into community governance authorities. This affects both community living and the protection services side of the ministry. In community living, the transition steering committee, of which I was one of 25 appointments made by the minister, has no authority or control over the process – it is a body struck to make recommendations to the minister on how the transition should occur. It has completed its work and the report is expected to be available on the internet next week and in hard copy within a matter of a few weeks].
Why the concern? Partially because Dr. Stainton's comments and some unfortunate facts and opinions were telegraphed by this key speaker.
Points to keep in mind follow:
– Conspicuously, IEII parents running ABA programs are not part of the Community Living transition steering committee. The question is, will they be part of the group that decides who does or doesn't receive funding, and how much? This appears to be a small group of parents who have a disproportionately large amount of power and discretion. They are unelected and most certainly do not represent the majority of children with autism who require necessary treatment.
[THE TSC WAS COMPRISED OF PARENTS OR FAMILY MEMBERS [10], SELF ADVOCATES [3], SERVICE PROVIDERS [7], ADVOCATES [2] AND GOVERNMENT STAFF [5]. THEY WERE APPOINTED BY THE MINISTER IN APRIL AND WORKED AS VOLUNTEERS OVER THE PAST SIX MONTHS. No particular group or organization was represented beyond BCACL. There were parents of children with autism involved in the process in various ways, however, as noted, the composition was the Minister's choice not the parents. I should further add that we did not make recc. on specific programmes or funding levels but you will find that special expertise on issues such as autism will be required by the planning system].
– Dr. Stainton seems to challenge the fact that IEII funding is earmarked for "medically necessary" autism treatment. When a mother asked about whether such necessary treatment was going to be means-tested, Dr. Stainton said that although many folks believe that this is medically necessary treatment, the BC Court of Appeal had not yet decided on this and that we were all going to have to wait for that ruling. Key point is that Dr. Stainton was not prepared to concede that ABA is medically necessary treatment. This is quite troubling and should sound the alarm for all families running home-based programs.
[I do not recall saying anything remotely akin to this, my comment on the appeal was about whether there would be any further money available and whether the age restriction will be lifted. I was simply saying I did not know and like the family members present was awaiting the decision. I also stated I believe that I hoped the proposed system would, regardless of the appeal, make the system more flexible and responsive with regards to levels of funding and age limits, but I have no knowledge of what the future budget might hold. As to my views on whether ABA is medically necessary, as you point out I made it quite clear I do not have the expertise or knowledge to make that judgment BUT I fully support a system which allows parents to make that decisions based on the best advice available to them. Quite frankly-I think my talk should encourage families running home based programmes that structurally at least, limits on funding and age may well disappear].
– Throughout Dr. Stainton's talk and via discussions at the conference, I arrived at the opinion that government bureaucrats have successfully turned a large group of parents of people with developmental disabilities against those of us who are advocating for autism treatment rights. They have used the tried and tested technique of "divide and conquer." Specifically, the government pitch appears to be, "since the court case makes us spend all this money on autistic children, there just isn't enough for your special needs children." Of course, this false zero sum argument was made and lost by BC Attorney General lawyers in both BC Supreme Court and BC Court of Appeal.
[In addition to my comments above, I can assure you that, having been at the table, the TSC was anything but "turned". When you review the report I am certain that you will be reassured as to commitment of the members, parents and others].
The Community Living group — and I've spoken to a few of the movers and the shakers who have cozied up government for many years, and whose grown children are being funded — denies that there is a qualitative difference between the treatment needs of our children, and the housing/care/respite needs of the families they represent. We know there is a big difference. Our children's primary need is costly treatment for a health issue, not respite! This is potentially a VERY SCARY situation.
[This is a very sweeping statement and I am not sure who the people are that you refer to that you have spoken with, but it is not consistent with what I observed at the table over the past six months. Nor is it consistent with the recommendations. I think it is also an insult to families who are at the table some of whom I can assure you are not having their children's needs met and are struggling with this daily as I'm sure are many of the families you represent].
Another view of the Community Living group seems to be, apparently, that we are trying to change our children purely to conform to society … that we should just let our children be who they are and work to see that society changes for — and adapts to – them! In my opinion, the fact that this attitude is pervasive in Community Living quarters reflects an utter ignorance regarding what autism treatment is all about and what this devastating condition holds for children and families absent bona fide treatment.
[Nothing in my talk referred to anything like this nor does it reflect my opinion].
Dr. Stainton offered an anecdote about one autistic person who he apparently 'deinstitutionalized,' and for whom he found employment. In telling this story, he displayed a profound ignorance of ABA and likely offended 3/4 of the audience. In his defense, Dr. Stainton DID admit he knows nothing about autism or ABA. However, the anecdote shows his hand regarding an attitude towards ABA and children afflicted with autism that is an anachronism.
[The story I told was not about a man with autism nor did I 'deinstitutionalize him', I worked with his family to help him move out of Woodlands and begin to establish a life in the community. The part of the story regarding the 'behavioural treatment programme' did not refer to ABA per se, but to what I consider a badly planned, designed and executed behavioural programme which resulted in his being labeled as having challenging behaviour-this was juxtaposed to how we achieved a far more positive outcome for this man by listening to his family and his own communications. I would expect you of all people to agree that ABA interventions need to be well planned, executed by well trained staff and be appropriate to the needs of the person and involve the family. As noted I don't claim expertise in this area, but do not regard myself as 'profoundly ignorant' of ABA. As to offending 3/4 of the audience, my understanding is that the evaluations do not bear this out and the spontaneous applause at the end of the story would seem to suggest otherwise. My concern however is not with the type of treatment or support, but that families have the right and support they need to get what they feel is best-including ABA].
For those of you receiving IEII funding, you need to be vigilant and communicate the moment your monies start to be eroded. We all know that the amount of IEII only pays for 1/3 of your program. We cannot afford any erosion whatsoever. In addition, the minute any means testing is introduced (Dr. Stainton claimed there would be no means testing for autism I stated that this was not in the TSC reccs.), you MUST communicate. Understand that if we do not hang together on this, we will hang separately. Remember that many parents with special needs children who are not autistic, are not happy about gains made by our community. They feel as though somehow their children are going to lose out … what Justice Allan referred to in Auton 2 as government pitting one special needs group against another. The saddest part of this for me, personally, is that I would be more than willing to share ideas with these parents on how to see that government lives up to its responsibilities for other special needs children. I think we all have to help each other, irrespective of our children's disabilities.
[I agree, so lets do that].
I strongly suggest that every parent receiving IEII funding e-mail me directly (skfreeman@featbc.org) and I will compile a list. The moment I hear that this money is being eroded, I will contact you all and we can then meet to review all legal options. Unfortunately, I know of no other way to keep the Community Governance structure accountable. Quite frankly, I'm surprised that the government is so naïve as to think they can delegate the treatment needs of our children to a group of parents who don't believe in the legitimacy of medically necessary autism treatment needs and then expect them to administer the funding as the courts have ordered. This is just untrue as to what is going on and your families need the facts. The last time the government set up a similar parent group was with the "At Home" funding program, which we all know discriminates against children with autism because the four criteria for funding are: a child's dependence for 1) eating, 2) toileting, 3) dressing and 4) sleeping. As we all know, once a child is in an IBI program, the above criteria no longer apply for many children with autism – the entire program has a clear physical (vs. neurological) disability bias. All the other issues parents with autistic children face, such as safety concerns for example, don't count for folks running the "At Home" program.
[I think it is good to be vigilant but again, I think you should wait to see the report before you conclude what the position of parents or anyone else might be. Again an example is one of the recommendations specifically refers to funding for autism treatment arising out of the Auton decision or otherwise and recommends that it be protected from any budget reductions. Again I would just add a general caution in your assignment of beliefs to anyone without actually confirming the information. I saw and heard nothing during the work of the TSC that would support your contention that the people involved had little or no understanding of autism or its treatment or fundamentally disagreed with the positions taken by parents of children with ASD].
Government hides behind this group of parents by saying, "it's not up to us, it's up to the parent group." I hope the new Community Living structure for autism treatment funding does not turn into the latest rendition of the Monty Python Cheese Shop skit. Gains made thus far for younger children may be reversed unless we are stay smart and well-organized.
[I think we all share this hope. Many hundreds of parents, family members, service providers, self advocates, and others have worked for more than a year to protect the community interest in the outcome of this process].
If you would like to know more about the way that IEII money is to be distributed, please e-mail the conference speaker at: timst@interchange.ubc.ca for policy clarification. But remember, he has been appointed by government to administer a quasi-government body.
[I would appreciate hearing from parents and doing what ever I can to help them understand what is going on and what is in the report, as well as their concerns. I do need to reiterate that I am not appointed by the government to administer anything. I was a member of the CLTSC which has now completed its work. While I do have a professional background in IF and the Planning, I sat as a parent and would be happy to talk to any other parent-parent to parent].
Sabrina Freeman, Ph.D.
Executive Director,
FEAT BC
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A late addition. As of Wed. the interim authority has been declared and I have been appointed as a board member for the transition period. This is not a staff position. For those who would like to see the report of the CLTSC I would urge you to look at the web site noted above.
Respectfully Your,
Tim Stainton, MSW, PhD
Associate Professor
School of Social Work and Family Studies
University of British Columbia
Vancouver, BC
CANADA
V6T 1Z2
[01] 604-822-9674
— END DR. STAINTON POST —
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