Ontario Liberals Set The Wrong Course On New Autism Program

Micheal Coteau the Ontario Minister of Children and Youth Services as been somewhat like a Sasquatch to many in the autism community.  There have been reported sightings, but often those reports come with fuzzy details, and then he seems to vanish into the wilderness of Queen's Park.  Almost a year has passed since Coteau took the reins on developing the new Ontario Autism Program (OAP), and he hasn't met with a broad swath of parents, nor has adequately addressed concerns.

Last Thursday I participated in what I hope to be many teleconference town halls put together by Coteau and his staff.  There were 12 of us parents on the line.  Over the past year I have been strongly advocating for such an approach with ministry staff. I'm glad that they are attempting to properly communicate with parents.

During last Thursday's teleconference, I got the impression that there doesn't seem to be an adequate understanding by Coteau on the problems within the system and the amount of advocacy needed from parents to ensure service delivery for their kids.  Most of the discussions in the teleconference revolved around the direct funding option, implementation of direct funding, appeals process, and accountability within the service providers.  Out of privacy for the others that were a part of this call, I will be only touching up on these issues since it directly relates to public policy and those discussions were generalized.

Direct Funding:

What direct funding will do is provide families who are on the centralized ABA wait list the option to opt out of waiting for services and provide them with funds to purchase their own.  Coteau stated that there will be no cap in funding and it would be geared towards the level of support a child needs.

When asked when direct funding would be made available for kids, Coteau stated by the end of the year.  I did bring up that there are currently 2,500 families who are receiving direct funding payments, but the vast majority of parents are still waiting.  I stated that it seems rather unfair for the vast majority of families to wait until the end of the year, when last year the Ministry immediately gave 2,500 families that funding.  Coteau stated that it is his hope to have the direct funding out as soon as possible, and they were looking at moving it up a few months.  I then stated that there is no reason for this funding not to be available to parents in June.  Coteau stated that he wasn't sure the capacity is there yet to handle the direct funding option so early.

The centralized ABA wait list is seemingly how people will be able to access direct funding during the transition.  So if you are not on that wait list, get on it.  If you are on the wait list, the Minister stated that the regional service providers must provide you with information on where you are on that list when requested.  Several parents brought up that the regional service providers are actively refusing to provide that information.  Coteau stated he would be following up with the regional providers on this and asked those that couldn't get that information to connect with Ministry staff who would source that out.

Currently the ABA services offered are useless to many families and are 1 - 2 hour/week blocks.  When the new OAP is rolled out, ABA services will increase to a maxim of 20 hours per week.  For the current 1 - 2 hour/week blocks, there was some discussion on how this would work if your family is currently on the ABA wait list.  Once the direct funding is rolled out, you have to wait until your child's name comes up for an ABA spot before you will be able to access direct funding in the new OAP, which runs counter to the intimidate direct funding the ministry provided 2,500 families last year.

From my take of this discussion, if you are currently on the wait list for the useless current 1 - 2 hour/week ABA blocks, and your child's name comes up before the direct funding roll out, you have to go through the block of useless ABA.  If that useless ABA is done before direct funding is rolled out, it is my understanding that you will be put on another wait list for another block of ABA.  Once that next spot becomes available is when your child will be able to access direct funding.

The way things look right now is that direct funding won't be an option for many families until after the next election due to wait lists, "capacity problems", and politics.  Direct funding should be an option to all in June in my opinion.

Appeals:

This is a big one.  If a family disagrees with a professional decision made regarding how many hours of service a child is entitled to; will there be an appeals process to appeal a reduction of service or service withdrawal in the new OAP?  Considering the amount of problems I am aware of through social media and how regional service providers have in the past treated families, to my utter surprise Coteau stated that he was on the fence regarding an appeals process in the new OAP.

Coteau brought up an argument against an appeals process stated that he was worried that parents would constantly use the appeals process to advocate against service reduction.  If this is the main concern, Coteau is very much tone deaf to the problems the system faces right now.  I brought up twice that every patient in Ontario has the right to a second opinion, while he was defending this view.  It is a legal right and cannot be taken away. The appeals issue is being punted back to the implementation committee for further review and recommendations.

I find Coteau's argument against an appeals process to be quite telling.  If he's worried about parents using the appeals process en masse due to service reductions, than one has to wonder if the new OAP will actually properly support the kids that need it.  The argument against, seems to suggest Coteau is worried about backlash regarding service reductions.

Accountability:

There was some talk about getting regulation in place for those providing services through the direct service option with regional providers. There didn't seem to be a lot of will to do so.  Coteau stated that everyone's take on the regional service providers seems to be different.  Some really like the service they are getting, and others don't.  This runs counter to public statements made by Coteau not even a few months ago stating that things need to change with the regional providers because he was getting a lot of complaints from parents.  This also seems counter to a lot of the discussions I have been monitoring through social media about how badly families seem to be treated by regional service providers across the province.

Off side of the three main points of direct funding, appeals, and accountability within the new OAP, I did bring up the issue of wait times, and wait lists.  I know firsthand how much damage it's caused my son, my wife, and myself and we're still waiting for proper ABA supports.  Coteau went on a bizarre rant about how everyone has to wait for services on a number of fronts, and used shootings in the black communities in Toronto to justify the lack of services and wait times for those services, yet in the same breath stated regarding autism services in Ontario that the money is there, and the system just needs to be more accountable, and transparent.  I'm not sure how that's going to be accomplished without regulation, and an appeals process.

Coteau went on to say that he wants to make parents happy and proud of the new OAP, and that this government is committed to helping youth and children, and he will be doing more of these teleconference town halls after the OAP announcement in a few weeks, trying to focus on parents he has not heard from.

Coteau has had a year to consult parents, and only now when it's starting to become election season that seems to be starting to happen.  I think going forward it's going to be a certainty, that many families will fall through the cracks, and we're going to see the legal side of this very soon appear in Ontario courts and tribunals.  Many serious problems will arise as a result of poor planning.  There just simply isn't a level of understanding I feel that is needed to fix the most pressing concerns with the autism community properly.  Coteau seems rather tone deaf to major concerns facing the autism community.  Most of that is a result of the lack of consultation, and misrepresentation of the autism community on whole rather than ensuring a direct line for parents with the minister over the past year.

The caveat in all of this is that they are now committed to broadly consulting parents, but I think it's way too late to contain a lot of the carnage that this new OAP is likely to incur. I hope I'm wrong, and I hope that all those that have worked so hard over the past year in different committees don't see their work flushed down the toilet due to poor planning, and execution by a tired and desperate government trying to do everything it can to cling on to power, and score a win with Ontario voters. We've seen that before with the government's take of expert panels on autism services last year.

In contrast, it took me 10 months to get a direct line into this provincial minister, when it took me 10 seconds to get often direct responses from federal ministers in the past through social media on questions or concerns regarding policy on a variety of topics.  Almost all federal politicians of all stripes have been a lot more forthcoming, open and approachable than Coteau has been towards concerned autism parents, and the community as a whole over the past year. One would figure that a Minister of Children and Youth Services would have been a lot more accessible to parents, especially when it relates to some of our most vulnerable in society.

As for our situation at home, none of what was talked about during this teleconference does anything for my son who has been waiting 7 years for a proper level of ABA support due to disappearing paperwork and records at Kinark. Nor was there any commitment from the government to ensure that never happens again to another family through regulation. We're still going to be waiting when we need that support now.  My son is dramatically, and unnecessarily suffering as a result of that support not being made available while 2,500 families received immediate direct funding last year to get that support, and no solid time line as to when we can expect in home proper ABA support from this government. All this teleconference did for me, is solidify who not to vote for in the next election, and I have a strong feeling unless some major developments happen between now and the announcement of the new OAP, I won't be alone.