[Deleted User]

This is in response to Tony's email regarding SLP services. I do not know much about SLP curriculum so I'm afraid I can't recommend any tracking tools. I can however recommend an excellent Speech Path whom I have had the pleasure of working with. She is very ABA friendly, very cooperative with teams and parents and fully willing to teach and explain all that she does. Her name is Ginny Martin. I'm not sure how comfortable she would be with my giving out her email address to the masses. I'm pretty sure her name is on the ASBC list. If it is not there please email me at Michelle_Karren@hotmail.com, and I will send you her information.

[Deleted User]

Tony — Brijanresources.com has many great programming resources (thinking publications, ecl publications pro-ed publications to name a few) of which I came across a CD-ROM resource I wish I had called “Normal Development: A Database of Communication and Related Behaviours” which tracks developmental milestones from birth – 12 years. It says it covers phonology, semantics, cognition, syntax, pragmatics and fine & gross motor skills. The product says it is fully searchable and The listed cost is $128 Cdn. and the best part is with Brijan you can order software/books, review them and if they’re not for you return them for full refund. And shipping is free! Hope this helps.

t

[Deleted User]

Hi Tony,

Our son was in Tae Kwon Do two years ago. We thought it would be a good class/activity as an instructor stands at the front of the class and the kids imitate. There are components that require following verbal directions but if a child can imitate in a naturalized environment they can do well.

However, the class that we put our son in did not work out as well as we had hoped for several reasons: the room was in a large warehouse type building. The other classroom was partially open to ours and because of the size, sounds echoed. IN addition, the parents were able to sit in the "classroom/warehouse" and the parents were not quiet, talking amongst themselves. All of this combined equaled a very loud, distracting environment that made it difficult for our son to pay attention to the directions. One of the insturctors was fabulous about putting our son up front, close to the teacher and she was really good about following through (we didn't train her, she was just a natural behaviorist!) Unfortunately she was the co-owner and wasn't our regular instructor. THe regular instructo was pretty good and tried hard to keep our son's attention but he was young.

I think that in a different venue, it would have been a good activity. Our son was not super into it after a few months so we did not continue and have switched to other activities.

Hope that gives you some ideas of what scenarios you might want to avoid!

[Deleted User]

Basic and Intermediate workshops in the Okanagon?

Hello chat board members,

We are wondering what level of interest is out there for a FEAT of BC workshop in the Okanagon area? At our workshops in the past we have been approached by a few families who live in this area who have impressed upon us the need for such workshops and we would like to if possible, fill that need.

In order to come to the area, we will need a location that can seat 20-80 people, an overhead projector, tv and vcr or vcr projector if possible, someone who can organize this as well as advertise locally i.e. at parent groups etc.

If the demand is there we would be willing to come up and teach our basic workshop on the saturday and our intermediate workshop on the sunday.

Please email me directly at Michelle_Karren@hotmail.com with information and thank you!

[Deleted User]

Hello everyone,

I just completed the survey that Sabrina referred to… its been 4.5 years since I found myself thrown into the world of autism. Both my children are doing well, making progress, learning, making me laugh… Their growth and change has been nothing short of miraculous!

Completing the survey reminded me of those changes, bringing up sadness and tears, heartache and pain that I had forgotten about. The sadness, the anger, it is so overwhelming! It consumes you, eats at you and changes you forever.

When our first child was diagnosed with autsim it took months for us to find out about Lovaas aba. Months of wasted time.

When I finally called FEAT, for the first time in months I spoke with someone who gave it to me straight. That person didn't encourage me to cry and then accept my child's autism, she encouraged me to fight it. She opened the door to treatment and the results have been amazing.

When we started our program, we had enough money in our budget to last 6 months, maybe one year. We figured we'd just start it and hope for the best. Six months later our second child was diagnosed with Autism.

And there was no funding.

A lot has changed – shorter waitlists (becasue many of those instructors who began working with many of the Auton case families, have gone on to become top notch, amazing, brilliant consultants) easier access to information about ABA, more instructor/therapist availability/more families doing ABA…

But one of the greatest changes that has occurred is that children under the age of 6 receive funding every month. It doesn't cover all costs but it is something. The credit for this money does not belong to the government. For those of you who are new to this battleground, please don't mistake this funding as government generosity. To put it rather crudely, they'd screw you over in a second given the opportunity! The credit lies to those who fought the battle (and keep on fighting) not just for their own children's rights but for the rights of those children yet to be diagnosed.

Its easy to be complacent when you are receiving money every month.

This is our last month receiving government funds for our ABA program. Oh yes we'll receive the oh so generous $500 a month… it will get used, in a heartbeat, but it won't even put a dent in our costs. We will soon be back to wondering how we will even make it through the next 6 months. But I am grateful that we even made it this far.

So to those of you who endured Auton, who struggled to put aside the money, who spent long nights in steering committee meetings, who sat in court filled with anger and sadness, listening to the other side and wept with the pain of what was sometimes said… thank you. My children are the benefactors of your hard work and oohhh, do they shine!

Michelle Karren
(a little mushy perhaps but sincerely grateful)

[Deleted User]

A Generous Offer:
A church preschool in the West Point Gray area has offered to pay for support for an ASD child for 1/2 day in their preschool program. 3 year olds: Tuesday, Wednesday and Thursday AMs; 4 year olds: Monday – Thursday PMs. The family is responsible for the remainder Lovaas-ABA program costs. Preschool fees are negotiable.

The preschool has previously worked successfully with a child in an ABA program, and is amazed at the progress and potential that such a program provides. The Preschool is using funds to provide the1:1 preschool aide from their Capital Projects Fund to support this endeavour.

Contact tleger@autism.bc for more information.

[Deleted User]

someone sent this to me and they are the interpretations and accounts of Lisa Simmermom of the Autism Society of Canada

the poster nor FEATBC are responsible for the accuracy of content.

Summary of the Auton Case Hearing before the Supreme Court of Canada

June 9, 2004

Autism Society Canada

Representatives in attendance: Lisa Simmermon, President; Jo-Lynn Fenton, Vice-President; Louise Fleming, Executive Director

Summary provided by Lisa Simmermon June 11, 2004

The Auton case from British Columbia was heard by the Supreme Court of Canada on June 9, 2004 in Ottawa. Participating were the original parties of the case (the Auton families and the Attorney General of BC), the Canadian and many provincial Attorney Generals as interveners (ON, QB, NS, PE, AB, NF), lawyers for a number of interveners supporting the Auton families (LEAF/DAWN, ASC, CACL/CCD, FEAT ON/AB, FOCA) and the lawyer for an intervener who supported neither party: Michelle Dawson. Attendees that filled the entire available spectator seating that were recognized included representatives from the Auton families and the related Anderson case families from BC, and representatives of the record 29 filing interveners. Supporting the families, this included representatives from Autism Society Canada, Friends of Children with Autism (involved in the Ontario suits), and FEAT Ontario. Michelle Dawson was also in attendance. Several families brought their children with an Autism Spectrum Disorder.

The Attorney General from BC began the day and asserted that discrimination had not occurred related to the Auton case, that there was no human rights dimension in this case, and that the case could not be considered a constitutional question as health care is not a right under the constitution. He indicated there was a terrific risk if the judicial process takes over health care, and that health care should be determined by the government. As well, he asserted that this was not a case about basic needs, so Section 7 of the Charter (legal rights) was not applicable. An argument was put forward that since autism treatment professionals are not physicians, they are in the category of other health care practitioners who are currently funded only partially by insured medical services in BC. The AGBC indicated that the decision, at most, should only be to fund ABA therapists on a partial basis, and that if families are not satisfied, they could pursue further legal actions.

The various federal and provincial Attorney Generals continued. They echoed many of the points of the AGBC. The AG of Canada summarized this by saying that the system has never provided for everything to be covered, only that everyone should have some coverage for health issues. ABA is not a treatment, but an educational service, which he said supported the opinion that ABA is a service outside the healthcare system. South African judges, he noted, had refused to review a health services case because it was about the issue of allocation of scarce resources of health care. He indicated that if the claim of discrimination is upheld, that the remedy should only be a declaration. Ontario’s AG agreed there was no discrimination, and argued that the Canada Health Act was not applicable since this was not a medically necessary hospital or physician service. He argued that IBI is not a medical intervention and is not provided by health professionals, and indicated that healthcare should not be managed on a case by case basis. Quebec’s AG followed a similar path, arguing that autism treatment is not necessarily medical. Nova Scotia’s AG spoke about how courts do not weigh budgetary evidence in making such decision, and that when issues of indeterminate liability exist (as in the case of providing treatment to children with ASD), governments need protection. She argued that such a situation allows for people to have the treatment of their choice without assurance that such treatment is on the legislative agenda. Emphasis was placed on courts not having expertise in autism treatment, and that this subject requires coordination across health care and education and is only appropriately done by governments. The issue of competing interests was raised by the PEI AG as he noted that this case raised issues of detraction of services of an education or social services nature into the medical field, and that there is a need to have a balance of needs of disabled children addressed. Alberta’s AG noted that autism treatment is funded through a ministry other than his province’s department of health, and that decisions should not be made by courts directing provinces to provide autism treatment through specific ministries. He also asked should there be a basis to force funding for a treatment which does not take government issues into account. The UN convention of the Child, he noted, has no legal force in this case as it indicates that addressing needs is dependant on resources. Several questions were posed by the NF A, including what is the appropriate role of the court regarding the future and maintenance of the health care system, whether wait lists pose constitutional questions and should government fund all services, but inadequately, and whether these are appropriate for the legislature or judiciary to determine. He noted that there is a broad range of medically necessary treatment not covered by health funding. As well, he (like other AG’s) raised issues about the comparative groups in the Auton case. He concluded that use of such comparative groups led to the probability of many claims of discrimination, which raised the importance of governments using Section 1 of the Charter (reasonable limits) to maintain control over resources.

Chris Hinkson represented the Auton families, and he began by reminding the Court that when the case was initiated, it named the ministries of Education and Children’s Services originally in addition to the ministry of Health and the Medical Services Commission, and that the trial judge had ruled that the issue was only one of healthcare, and that the AG had not appealed that finding. He reviewed the case history briefly, and noted that, during the trial, the BC government did not arguer regarding the cost of the treatment, but rather that ABA/IBI treatment is ineffective, which perpetuated stereotypes and was discrimination in that it asserted that children would not benefit. No cost-benefit analysis was provided by the BC government during the trial. He continued to review the history of the case, noting how the government of BC has shown very negative conduct, and reminding the court that this negative conduct was noted by the trial and appeal judges. The inclusion of advice by medical professionals for treatment as long as it is deemed to be helpful was raised. Mr. Hinkson noted that there had not been a transparent process for resource allocation, and that lack of such a process involved discrimination. He also noted that Autism Society Canada would be addressing the issue of lack of transparent process for resource allocation across Canada regarding decisions pertaining to autism treatment. The fact that decisions about treatment funding are made by bureaucrats in BC with no expertise in autism was raised. He pointed out that this case is about addressing a specific issue as opposed to re-writing medical care policy, and that the remedy provided by the Court for this case needs to address the intransigencies and improve the process involved. With regard to published cost-benefit analysis information, he pointed out that this was not appealing to governments to spend in order to save money later, so any Section 1 (reasonable needs) analysis needs to include the total cost picture of a situation, and not just the cost of treatment. He noted that the BC government’s claim that ABA/IBI is a very recent experimental and controversial treatment is invalidated by the statement of the US Surgeon General that it has been around for more than three decades. He indicated that courts indeed have legal jurisdiction with regard to the issues at hand, and that doctors should be involved in treatment provision decisions, and not bureaucrats. With regard to issues pertaining to resource allocation in an article by Greschner and Lewis (Auton and Evidence-Based Decision-Making: Medicare in the Courts, The Canadian Bar Review, 2003) that had been cited by a number of AG’s, Mr. Hinkson concluded that they would be addressed more fully by Feat Ontario.

The Women’s Legal Education and Action Fund (LEAF) & the DisAbled Women’s Network Canada (DAWN) presented an interesting point that the most important distinction for the Court to consider was abled and disabled. It was pointed out that the medicare system is designed for and mostly meets the needs of the able-bodied population. Thus, for competitive groups in the determination of discrimination, the issue is proportionality: children without autism have most of their health care needs met, while children with autism do not have most of their health care needs met. Discrimination involves situation where there is privileging of the norm. Caution was expressed that the Court should not get caught in community prejudice such as autism creating prejudice against people with disabilities in general. It was noted that the lower courts did not include the perspective of people with autism. Their conclusion noted that the approach required in order to avoid inequality is the application of equality rights principles including: responding to differential needs, commitment to non-pathologizing of difference, consultation and option consideration in good faith that includes the inclusion of adult people with autism, commitment to non-violent and non-coercive programs and governments committing financial and other resources in an equitable way.

Autism Society Canada‘s lawyer Domenic Crolla indicated ASC’s support for the Auton families, and noted that the core medical need of children with autism is treatment. He said there is a need for government to show it has used a process to not fund a treatment, and that little had been revealed about the BC decision-making process regarding autism treatment, and that the process is similarly not clear across Canada with unexplained criteria. The need for transparency, accountability and clear communication was emphasized. Procedural issue is not to be discharged; it must be a constitutionally appropriate process. Therefore Section 1 issues can not be arbitrary and must be non-discriminatory. Unless it can be proven to be true, and include transparency, accountability and clear communication, the Court should not allow governments to say that they have an acceptable decision-making process.

The lawyer for the Canadian Association for Community Living and the Council for Canadians with Disabilities indicated that they were gravely concerned about the assertions of the BC government in this case. The Court was asked to respond to the AG’s about resource allocation that governments are accountable for their decisions, and that cost-benefit analysis must be a part of the decision-making process. As well, if it is accepted that there is no true comparator group getting the exact benefit being sought (in order to determine discrimination), this excludes all people with disabilities. Differential treatment must be determined by looking at the group in question, and determining if needs have been met. If courts scrutinize health care, then it is at risk. However, equality must not be compromised, and governments must be accountable for funding resources in all areas of their responsibility, including health, education, and others. Courts should not be responsible for reviewing situations requiring resource allocation, but in a situation where a government does not do a reasonable review of the situation, it is appropriate for a court to be involved. They noted that no treatment was offered to children with autism, and resources were the only reason cited for not providing it. It is apparent that the BC government did not carry out an equality impact assessment. In conclusion, it was stated that it is not appropriate to discuss resources in the context of taking away services from other people with disabilities.

FEAT Ontario noted that this is a case in which the Charter protects the right of the child with autism to access treatment; not protecting that right means that a child’s options are removed, reducing life options. Although healthcare is not constitutionally enshrined, it is referred to by the Court, indicating its importance. Treatment is fundamentally important as it impacts the quality of life, and must be provided in a manner consistent with the law. The Charter compels provinces to provide core medical services which are fundamentally important to a person, which is indicated in the Ontario government’s funding of sex-change operations. The fundamental importance of treatment to children with autism can be shown in the reality that almost all can not benefit equally from a reasonable quality of life until they get treatment. FEAT Alberta supported the comparative groups in the lower court cases, and noted that such categories of comparative groups had been used in other cases. They indicated that individuals with ASD will be so compromised by lack of treatment they will not be able to benefit from any regular services, and asked that if we send children to school without treatment, which reduces their ability to acquire an education, are we saying we do not value them? They concluded that government’s obligation to treatment does not end at age 6, and noted that Alberta courts also now accept this reality.

Friends of Children with Autism (FOCA) expressed concern that if one accepts the AG’s saying that normal processes are the same for everyone, then a Charter-free zone is not good. They asserted that the Courts and Legislature and Executive branches of government are all the guardians of the Charter. There is Supreme Court of Canada jurisprudence that accommodation of difference is equality, and includes ameliorating groups who have suffered disadvantages in Canadian society. Therefore, if you treat all people the same, and do not accommodate their difference, then that constitutes a disadvantage, and is discrimination. It was noted that the Canada Health Act indicates that its primary object to work to protect, promote and restore Canadians' physical and mental well-being, which includes mental health issues, and that autism treatment should therefore not be on a basis to pay. Also raised was the possibility to designate autism treatment therapists as health care practitioners, and that this is possible by both BC and Canadian law. Courts do need to step in where a government’s process to determine funding is not reasonable. With regard to the issue of efficacy of ABA/IBI past age 6, it was brought to the Court’s attention that the cases before the Ontario courts are addressing this issue, and it does not need to be addressed by the Supreme Court at this time. This case allows the Supreme Court to make decisions and will not deny governments’ future ability to exercise decision-making; the Auton case is about government not fulfilling its responsibility.

Michelle Dawson’s lawyer indicated she is not in support of either party in the case, and is very offended that because she has not sought treatment, she could be seen to be going against her own Section 7 rights (legal rights) by not having her dignity until she pursues treatment. Comparison of this situation was made to language used regarding homosexuals, and it was noted that maybe people with autism do not want to change. Disability is society’s inability to make accommodations, and it was questioned whether efficacious is acceptable in our society. It was disputed as to whether people receiving treatment improve, and whether it mattered if people did not improve. The Court was informed that people with autism do talk and have written books, and that they should not believe that children with autism will only get back their dignity if they receive state-provided treatment. This was likened to First Nations residential schooling and the Court was asked to look at the cost to society of the mistake about how that was handled. Similarly it was suggested that society considered that, unless treated, children with autism are doomed, and are equivalent to cancer, which is deeply offensive to people with autism. Points were raised about Lovaas treatment in 1964 which used coercives, and the Court was asked if we know that we are losing by extinguishing certain abilities, and what a loss this is to our society. He concluded that there is a requirement of people to provide permission to receive treatment.

The counsel for the Auton Families had retained some time from his allotment for presentation to respond to Ms. Dawson’s intervention. He indicated that it has never been said that all people with autism should get ABA/IBI. It is also wrong to say that nobody should get treatment. He noted that Ms. Dawson offered speculation, while he had offered the Court fact, including medical evidence. Families are not advocating for ‘60’s style of ABA; that is not what is recommended by medical professionals and not what is being asked for by parents. He also noted that jurisprudence indicates that parents have the right to make decisions for children, and noted that children with autism rarely have speech before treatment, so communication is a very serious and problematic issue.

The AG BC had an opportunity to provide closing arguments, which included that BC was not dismissive of the requests from families since the BC government had developed an Autism Action Plan including references to a need to balance services to other children. Although this plan was never implemented, the AG asserted that writing it shows that the government did investigate the need for early intervention and met the responsibility of considering the situation. The problem was that the families were not willing to wait for the plan’s implementation, so the government then declined all requests for funding. He concluded that the right of equality is not equal to the right for funding.

The counsel for the Auton families indicated these had all been addressed in his earlier remarks.

The case was concluded at the end of the day on June 9, and the judgment was reserved. Two judges who are retiring did not participate in the hearing, which leaves seven judges to address the case.

[Deleted User]

I would like to extend my gratitude to those of you actively fighting for our children. Mere words are inadequate.

Each one of us, sat in that doctors office and had a name attached to our fears-diagnosis: autism. We were offered inadequate service, and minimal hope.

From the time we went to the GP to address our concerns, and the time we were finally given a diagnosis, we waited a year. We watched our son regress. My baby did not play with toys. He had minimal eye contact. From the time he was 2 years old until he was 3 1/2 he did not speak a word. He did not acknowledge my presence in the room.

Thank you Sabrina. You personally took time out of your busy schedule to address my concerns in the beginning of this journey. With the information you provided us, we are on our way.

Thank you Michelle. You cannot see my tears as I write this, but I assure you they are there. After only 4 months of treatment, my son is starting to look into my eyes when I walk in the door. He has spoken 8 words, there is a light shining in his eyes were there had only been indifference. You have given me a gift beyond all measure, my child is calling me mom for the first time.

We have had so much help along the way. Without the efforts of those of you that came before us, we would be looking at our future in a totally different light. We are so grateful to you all

Sincerely, Amie
Lyric and Ayn's mom

[Deleted User]

Carol —

I can recommend 2 SLPs who work collaboratively with ABA programs:
1. Lesley Blok is fabulous and is on the North Shore. She also has 2 year + expereince working as part of a ABA team. I'm not sure if she is accepting new clients, but might be available to do an assessment. You can email her at mlblok@shaw.ca

2. There is also a Vancouver SLP who has trained as a line therapist and worked on ABA home teams doing ABA therapy under a consultant. She is located in Vancouver and is currently accepting new clients. She was at the last ASBC|North Shore meeting, but I do not have a contact for her….

Good luck to you!

t

[Deleted User]

Ahhh, once again a post about the son-rise program…. I am not going to bother addressing this issue… new parents, do a search on it and you will see the members of this chat board have dealt with this program and its lack of evidence or scientific backing many times. There have been many eloquent posts about this issue, none of which need to be repeated again.

And may I just say testimonials are not evidence… testimonials are neither objective nor based on data.

What I would like to state is that putting your child into an ABA program is an important step however you must ensure that your ABA program is of the best quality. There are many people, qualified and unqualified who provide "ABA consulting services". Some are great, some are good, some are mediocre and some are appallingly bad.

Its also important to note that ABA is a large umbrella under which many therapies exist. Not all are equal.

I am not an expert but in my opinion, as a parent and a therapist, some of the qualities of a good program include:

1. accurate, systematic, consistent data collection (and by accurate I mean trial by trial and this means writing down a data point for each sd delivered. Estimated data has its place and there are times when this is appropriate and there are times when it is not. It is however not accurate data and should never be regarded as such.)

2. analysis of data collected – what good is data if no one looks at it? someone should be computing the numbers, analyzing the patterns and identifying concerns. Data contains many answers if you just look at it. Lovaas ABA is based on science. Science is not about feelings, it is about providing hard evidence to back up its claims. (Son-rise, has been around for almost as many years as Lovaas' research, and yet they still can not back up their claims with science.)

3. consistent and regular workshops with your consultant. Some consultants travel great distance, some can see their clients monthly, or even weekly. 6 months between workshops is probably too long – again that is just my opinion! But a lot changes in 6 months. A lot changes in a month!

4. Consultants design programs, they monitor programs, they design interventions. If you are not a consultant, you shouldn't be doing these tasks. If you are a sr. and you are doing these tasks, you need to understand that you have overstepped your bounds. You are not helping your client and you could very likely be harming them. And if you do not understand why that is the case you need to get out of this business or speak to someone at FEAT as to why that is the case!

5. regular communication between the parent/sr. or team leader/consultant and whole team is essential. The parent and/or the sr. on the team should meet with the team at least every other week to discuss questions, concerns etc as well as lead a team meeting (see below) and take concerns to parents as well as when necessary to the consultant.

6. regular, consistent team meetings attended by all staff and preferably at least one parent. Team meetings are an opportunity for additional ongoing training. The allow the parents or sr. instructor to monitor staff on issues of consistency, follow through, reinforcement, data collection, as well as answer questions, review and introduce new program procedures. Demo's at meetings are always important, paricularly if the sr. is not able to overlap the team members on a regular basis.

7. The quality of your team also makes a huge difference. This is a hard issue to control sometimes as their seems to be a shortage of instructors and challenges to effective training.

8. But most importantly, the quality of your program is based on the quality of your consultant.

Not all ABA programs are created equally. A poorly designed, poorly implemented ABA program is no better than any other ineffective program… quality counts.

Just my thoughts
Michelle Karren

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