Posts Tagged Ontario Autism Program

Parents Set To Protest New Autism Announcement

FOR IMMEDIATE RELEASE

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June 14th, 2017

TORONTO – The parents of several autistic kids will be rallying at Minister Children and Youth Services Michael Coteau’s constituency office on Friday, June 16th, 2017 at 1:00pm. Parents are concerned that transitional services over the past year to the new Ontario Autism Program have not been equally distributed, leaving many children suffering.  Last week Coteau announced changes to the Ontario Autism Program, and that it will include a direct funding option (DFO).  Last June, the DFO option was only given to a few families on wait lists, leaving many children suffering without appropriate service options over the past year.  The announcement last week by Coteau did promise DFO to all families by the end of the year, however details on how that will be rolled out, and exactly when each family can expect that option remains unclear.

Jason Koblovsky, a parent of an autistic child has witnessed first-hand the suffering of his son as a result of the government not offering appropriate transitional services to a majority of families affected by Autism over the past year. “Quite simply, you cannot accommodate some with transitional support to the new Ontario Autism Program, and leave the rest of us hanging like this, which is what has happened over the past year.”  Koblovsky said. “There is nothing available for my son who has been waiting, and who has had an extremely rough year with behavioral issues. All I have been offered as transitional support are group “workshops” in which due to my family situation I can’t even get to.  My son needed the same access to ABA as those who have received DFO over the past year.  The decision last June to provide “some” families with appropriate transitional support and not all represents a major lack of understanding on what our kids go through on a day to day basis without support, and a lack of understanding on how wrong that decision was, which continues to this day by this government. My patience has run out.”

Another parent Angelina Palmisano had to also watch her son suffer as a result of the lack of appropriate supports stated: “For over a year I heard promises from the government. My child has not had any early intervention. EVER! But the government has now decided to accommodate a small demographic of children and leave out a large portion of children out.  The turmoil it has caused me watching my son struggle with behaviors that are severe, is unbelievable and the future scares me.”

Brenna Bloodworth who heads up the Alliance Against The Ontario Autism Program agrees: “Children still left waiting while Direct Funding continues for a minority. That’s not right.”

The rally to support children current suffering and in need of transitional support will get underway on Friday, June 16th, 2017 at 1:00pm.  Address 1200 Lawrence Ave East, Toronto.

More Info: https://www.facebook.com/events/418281901877395/

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Human Rights Appears To Be An Issue In New Ontario Autism Program

 

Minister of Children and Youth Services Micheal Coteau has been a champion of human rights especially in the black community and around racism, but when it comes to autistic kids it may be a different story.  Coteau made an announcement yesterday that was very short on detail regarding the roll out of the direct funding option for many Ontario families. I sent an e-mail to Micheal Nicin who is Coteau’s chief of staff today for further followup and clarification on several key issues relating to the transition over the past year, and providing unequal level of services to children and families.  E-mail is as follows:

Mr. Nicin,

Your ministry appears to be in violation of Section 1 of the Ontario Human Rights Code which states:

Services 

  1. Every person has a right to equal treatment with respect to services, goods and facilities, without discrimination because of race, ancestry, place of origin, colour, ethnic origin, citizenship, creed, sex, sexual orientation, gender identity, gender expression, age, marital status, family status or disability R.S.O. 1990, c. H.19, s. 1; 1999, c. 6, s. 28 (1); 2001, c. 32, s. 27 (1); 2005, c. 5, s. 32 (1); 2012, c. 7,

There was a lack of detail in the Ministers response yesterday, that further confirms the government is not acting within the law.

Last June, the government immediately implemented a direct funding option for 2,500 families.  I argue the government as a result has waived any legal argument under section 14 of the human rights code due to those services not being equally distributed to other families on the wait list at that time, nor any new adds on the wait list during this transition over the past year. The government also had a legal duty over the past year to accommodate those children on wait lists with equal access to services under the code as well, in which undue hardship would not apply since the Minister during his teleconference a few weeks ago stated to parents that there was money already in the system, and that “Money isn’t the problem.”  I also argue that if there was any question regarding capacity going forward that those 2,500 families shouldn’t have been given priority treatment over the past year while others have suffered as a result of not providing them with equal treatment in services (documented), in order to be within full compliance of the law.

Can you please explain to me what is being done to ensure that the Minister and his staff are properly following the law, and exactly what the details are with respect to the roll out of the direct funding option so that all families currently on wait list currently have that option in a reasonable time frame.  I require specific details at this time.

Regards,

Jason Koblovsky

I will keep everyone informed of any responses.

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New Autism Announcement: Self Congratulatory And Very Short on Details

(Micheal Coteau Announces “Milestones” For New Autism Program With No Details and No Questions From Media)

Today the Minister of Children and Youth Services Micheal Coteau made an “announcement” on what the new Ontario Autism Program (OAP) will look like.  The announcement was made at one of the regional service providers in Ontario – ErinOak – and live streamed via web.  About half of the announcement was congratulating the people involved for their hard work, before many found the live streaming of the event cut out, just as Coteau started his “announcement”.

Most of what was “announced” today is what a lot of parents already knew.  It wasn’t really an announcement, more of a presentation of what the government is working on.  I participated in a teleconference town hall a few weeks ago with Coteau, and wrote about it.  The only real take away from this announcement is that the Minister seems to have moved in the right direction around regulating providers in the Ontario Autism Program, which he pretty much dismissed a few weeks ago in the teleconference.  Another big take away is that a few weeks ago the Minister told parents he was on the fence regarding an appeals process to allow parents an option to appeal decisions made in service reductions, diagnosis, etc.  There will be an appeals process in the new OAP, but no details as to what that will actually look like.

In fact, there’s basically nothing in this announcement that details anything with respect the new OAP. Concerns brought up a few weeks ago with the minister regarding direct funding and how that would be implemented were not addressed today.  Coteau stated to parents that the vast majority of kids waiting on ABA wait lists not currently receiving a direct funding option, would have to wait for a block of ABA to become available after direct funding was rolled out before they would qualify.  This would put the vast majority of kids on wait lists right now without direct funding options well into the provincial election of 2018.

Coteau then ended this “announcement” of milestones by taking no questions from media.  The Ministry has provided the following information today to media and parents, along with a “puff piece” press release on the “announcement” today:

Beginning in June 2017:

-Single point of entry: Families will join the new Ontario Autism Program through a 1-800 number for each region. Families will no longer need to apply to two separate programs, nor will they receive separate assessments or have multiple autism service plans.

-More treatment spaces: The number of treatment spaces available province-wide will continue to increase so families will experience shorter wait times and access services sooner.

-Child and family-centered services: Consistent, evidence-based clinical decision making will be focused on children’s individual needs and will include input from parents, service providers and educators. Autism services will be tailored to the individual needs of children and youth, regardless of age. Families will be actively involved and play a central role in the assessment, goal-setting and intervention planning process for their child.

-Fair and transparent waitlist transition: Families will enter the OAP in chronological order, based on their position on the current waitlist. For children who are on both ABA and IBI waitlists, the position with the earliest date will be used. New families will be added to the OAP waitlist in chronological order based on their date of referral.

-Service continuity: Families currently receiving direct funding will continue to receive funding throughout the transition, until a new direct funding option is implemented by the end of this year.

Beginning by the end of 2017:

-Ongoing engagement: The government will continue to engage with the OAP Advisory Committee, families, providers and other stakeholders throughout the transition to the new program.

-New support workers: Family Support Workers and Support Teams will be available to help families navigate the new program and to provide individualized support. These teams could include support workers, clinicians, educators, service providers and other experts that families wish to work with on their child’s progress.

-New appeals process: If families have concerns with their child’s plan for behavioural intervention, they will be able to request an independent review of the plan through a new appeals process.

-More treatment spaces: The number of treatment spaces will continue to increase, to reduce wait times and provide services sooner for all families in the OAP. When a child’s spot becomes available, the child’s family will be able to choose to receive service through direct funding or direct service.

-A choice of direct funding for all families: A new direct funding option will be available by the end of 2017 to all families who choose it. This will give families a clear, fair and transparent choice in their provider.

Spring 2018:

-Full implementation: By spring 2018, the new OAP will be fully in place.

-Ongoing engagement: Consultations with families and service providers will continue as the new OAP is fully implemented to ensure that the OAP meets the needs of families.

Over all I can only describe as a gamer.  It felt like an over-hyped tease we see all the time in the gaming industry than anything useful.  I just hope that unlike the gaming industry who hypes up game releases for a year with very little details, that on release day we don’t all feel like we’ve bought into something that quite clearly isn’t the product we expected, and that it’ll be too late to ensure things run smoothly, or to appropriately change.  The lack of details today concern me very much as a parent.

I’m not sure patting each other on the back today is at all appropriate considering 21,000 families are still waiting for services while others are receiving “preferential” treatment. There are very real ethical and legal questions surrounding that. It’s quite clear from what was announced today that the vast majority of families waiting for equal levels of service, will most likely have to wait pending the outcome of the 2018 provincial election. That is quite simply and unequivocally unacceptable.

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Minister Coteau Finally Sighted By Parents On The Autism File

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.

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