Saturday, April 23, 2011

The Trouble With Advocacy

For those of you outside Canada:  We are presently in a federal election.  It's our fourth in seven years.  Elections always remind me of advocacy because they tend to be the time politicians suddenly become interested in what you might have to say.

Autism advocacy is tricky business.  There are many interest groups and all of them have a different spin.  There are very few advocacy groups with whom I completely agree.  Most active autism advocacy groups are pushed by parents, a group of people who are already lacking in both time and money, since kids on the spectrum tend to suck both away from us.  Let's examine a few well known autism groups and see where the chips fall.

I struggle a lot with Autism Speaks.  They are the largest advocacy organization in North America and tend to compete with local charities for dollars.  My biggest two issues with Autism Speaks are (1) their huge focus on research, and (2) their tendency to pay their staff ridiculous compensation (go to page 9).  Research is important but not to the detriment of advocating and supporting families struggling with autism, including programming and providing materials.  This seems to be left to local autism societies, many of whom struggle with financing.  If people ask me if they should give to Autism Speaks, I tell them they are better off giving their money to their local autism society, such as Autism Ontario here in Ontario. 

Medicare for Autism Now is an organization based in British Columbia that has been particularly active in trying to knock off Conservative candidates in the Canadian federal election.  Their claim is that children with autism are being discriminated against because treatment is not covered under Canada's universal health care system.  Their solution is to amend the Canada Health Act to include specific coverage for IBI and ABA therapy.  I have several problems with this:  (1) Not everyone accepts ABA as a treatment for autism they want (I happen to believe it is the best treatment but recognize not everyone agrees), (2) It is discriminatory to make ABA treatment funded but not so many other things like speech therapy or physiotherapy, (3) Putting this requirement in the Canada Health Act will not improve any services because it does nothing to make waiting lists shorter, which is the primary problem many parents have in accessing this treatment.  True, amending the Canada Health Act will put ABA therapy in the hands of some parents in provinces that do not provide it, but interestingly, the most vocal parents tend to live in Ontario and B.C., which already have comprehensive ABA coverage.  In the B.C. case, amending the Canada Health Act will not change a thing - $25,000 per year per child under 6 years old would be considered meeting that directive by a court.

Let's discuss the fairness.  As a parent of a child with autism, I understand the financial cost of treatment.  It's $50,000-70,000 per year to treat it with intensive ABA, and people cannot afford this.  We need help.  But there are other disorders, perhaps not as common, such as speech apraxia, that may need intensive treatment for success.  Speech language pathologists are not cheap.  What about a debilitating condition requiring physiotherapy?  What about people with no drug coverage for cancer or other conditions?  The reality is that Canada does not have a universal health care system, it has a partial health care system mainly concerned with keeping people alive, not about quality of life.  The only way to make this fair is to cover all para-medical professionals plus dentists and drug coverage.  In an age where 40-50% of provincial budgets are going to health already, do you really think this is going to happen?  I admire this group's goal but it's both unfair and unrealistic in this parent's view.

Autism Resolution Ontario is an advocacy group that advocates for timely access to ABA services in Ontario.  I am generally in agreement with this group (and indeed am part of it) but I have one major issue in that it advocates for redirecting all autism funding to IBI.  I strongly disagree with this for two reasons:  (1) While IBI works for some kids, it does not work for all kids.  It is unfair to withdraw supports, however meagre they may be, from children who do not respond to this treatment.  (2)  Support for summer camps is huge for the school age population and is one of the few things parents can obtain help with when children are this age.  It should not be withdrawn either.  Laurel Broten, the Minister for Children and Youth in Ontario has said this before and I tend to agree with her, even if I think the budget for the IBI program is terribly inadequate.

The Ontario Autism Coalition has been around for several years and was instrumental in opposing Ontario's age six cut-off years ago.  While inactive until recently, it is operating with renewed vigour as a provincial election looms.  Besides the medicare for ABA funding argument, there is little about this organization I find questionable and so far I have admired their advocacy efforts.

Tuesday, April 19, 2011

Fairness in Education

Ontario's public schools have long argued that Intensive Behavioural Intervention (IBI) is a form of "therapy" and thus cannot be delivered in the school system.  Although it is therapeutic in nature, IBI is simply a way of teaching students with autism in an intensive manner (it is just intensive ABA).  The principles of ABA are used daily in schools, whether teachers know they are doing it or not.  When you think about it, most types of "therapy" with the exception of medical procedures are really learning techniques.  Speech therapy is a way of teaching people how to change how they talk and process language.  Physiotherapy (or physical therapy) is a way to teach people how to move their muscles in different ways.  Occupational therapy teaches people how to perform daily living activities.  Psychologists use cognitive behavioural therapy (CBT) to help people learn how to change the way they think.  There is no real practical difference between education and therapy.

Let's examine how special education dollars are spent.  In Ontario, dollars are given to the board on a per student basis but the money does not follow the student.  Thus it is possible to have 100% of the dollars for one student go to a school where that student does not attend.  School boards like this because it gives them maximum funding with maximum flexibility and zero accountability.  If we look at the funding for a full-time educational assistant, we can see they earn between $20-24 an hour for 6.5 hours a day if they are full time.  In this particular link, you can also see there is a special stipulation that the EA in question should be able to translate American Sign Language (ASL), one imagines for a deaf student, but possibly also for a student with autism who uses sign language.

To be an EA, one usually needs a nursing background, an early childhood educator background, or a developmental service worker background, all available through Ontario's colleges. 

To employ an EA full-time at $24/hour for 6.5 hours a day costs the board (excluding benefits and other sundries) about $33,000.  This assumes a 42 week year (I am guessing here - eight weeks for summer plus one week at Christmas and March Break).  If there are benefits, that might bump us up to $37,000 a year.

A typical ABA worker might receive the same hourly rate, without benefits, and with much more training than this EA.  They would be more accountable to parents.  They would allow children with autism to make real gains on an IEP.

So tell me why we hire people to be EAs for children with autism who are not qualified?  If we can require EAs to be ASL interpreters, why can we not require experience with ABA?  And then tell me why we don't hire the people to conduct the education that we know works for less cost?

The problem is not money in the system, it is how it is wasted.  Our kids deserve better. 

Sunday, April 17, 2011

I Wish

As Tyler gets older, I marvel at how I can have a full on conversation with him.  He's not even two yet, but somehow we can talk about the things he likes in a book, his favourite numbers and letters, what he did in his diaper and how he is feeling. 

I have been solo with Alanna this week since her mom is away with Tyler, so there's been lots of good daddy-daughter time.  Despite all this time with her, I miss her.  She's been withdrawn lately and very hard to engage.  It has felt like it used to two years ago when she was there but it was like I wasn't in the room. 

I can interact with her, but there is a lot of prompting going on and it seems so forced.  This isn't always true - usually she is more engaging and it is easier, but not lately.

We went to the pool today because Alanna usually loves swimming and it's great exercise.  We both had meltdowns... her at the pool, and me in the parking lot after the pool.  She wouldn't give up her blanket and I think was just too anxious today to venture in (this is highly unusual).  So we sat and watched the kids swimming for about fifteen minutes, then left.  She was frustrated, I was frustrated.  Going to the pool is a hassle and I felt like it was a waste of $10 and driving there and back.

While I was cradling Alanna I watched all the other kids and thoughts crept into my head.

I wish Alanna could be like that.
I wish she could be normal just for this afternoon.
I wish she could talk to me.
I wish she didn't get anxious.
I wish I had my daughter back.

Some parents have this whole "autism is a gift" thing going.  I am just not there.  I choose to fight autism because I do not think that the world is suddenly going to wake up and bend over backwards for people with disabilities like Estee Klar.  Instead, I want to equip Alanna to be as independent as possible while still being herself... indeed, the job and goal of any parent.

Today, for a few moments, I stopped looking at my daughter as a person I loved and instead looked at her as a disabled person.  When I realized in horror what I was thinking, the guilt kept on coming.  Because if a girl's daddy can't recognize her as a person with strengths and talents, worthy of love and with something to contribute, then how will the world treat her?  It was only a few minutes, but those are thoughts that should never enter my head.

I wish I could stop wishing she didn't have autism.
I wish I was I better parent.
I wish so many things.

Friday, April 15, 2011

Fanshawe Success

Yesterday I got a chance to meet with the graduating class of Fanshawe College's Autism and Behavioural Science program, designed to create trained staff for working with children with autism in IBI/ABA and school programs.

I was very pleased with the turnout and the interest.  Many of the graduates had a strong desire to work privately with families but had no idea where to begin.  I am hoping the information we gave them was helpful in getting them to a place where they can launch successful careers and help lots of parents and kids in the process.

The reality is that there is still a shortage of trained therapists and still not a good way to connect families who need help with people who can help them.  Even for families who elect to receive services directly from the local autism provider in Ontario, such as Thames Valley Children's Centre, there are still many parents waiting or ineligible for the Autism Intervention Program.  I hope that through this we can get more therapists together with parents who need them!

Wednesday, April 6, 2011

Vocalization Frustration Part II

Back in August, I blogged about my frustration with attempting to get Alanna to speak (and when I say my frustration, I imagine hers is even worse).  We were pumped about seeing our new speech-language pathologist.  The good news is, she is truly excellent, probably the best speech-language pathologist we have ever seen.

Did PROMPT work?  Yes, it did work.  She was able to get Alanna to learn new words, like "on", "open", "ball", "more".  Alanna was paying attention, clearly motivated, clearly understanding speech was expected, but she just couldn't get her mouth to move in the right way to make the right sounds.  After hours of therapy we did get her mouth to move in the right way, but she had difficulty switching (say from an open mouth for open to a closed mouth for more).  Open and on were good, ball was coming, bubbles had a good approximation, but "more" was "open" and then "buh".  Working on "more" turned everything into "mama".  So it appears we are back to the beginning again.

Alanna's recurrent pattern is always to get to five or six words and then as new words are learned, she loses the ability to say the words she knew before because she seemingly no longer can make the sound properly.

What's the verdict?  The speech-language pathologist has told me that the inability to make proper sounds and switch between sounds is typical of speech apraxia, but that "losing" words once learned is not.  Regression is more typical of autism, but usually if there is a regression it is more global and not specific to one area, due to seizures or major life changes.

We will try for several more weeks to see if this pattern continues.  If so, then we will discontinue speech therapy because it is expensive and is not breaking the cycle.

I used to have great hope Alanna would be able to use speech as a primary form of communication, but as time passes, I have to admit that I am less hopeful.  It breaks my heart.