Archive for category Autism Policy

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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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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Autism Parents Say They’ve Been Duped In Open Letter To Coteau

(Autism Parents Say MCYS is still cutting therapy from kids 5 and up)

In an open letter to the Ontario Minister of Children and Youth Services, several parents of autistic kids say they’ve been duped by the province into thinking that funding was restored for intensive therapy for kids over 5.

Last year Ontario Premiere Kathleen Wynne decided to cut funding for intensive behavioral intervention therapy for kids over the age of 5, which sparked heated protests from parents, and support for parents concerns from both opposition parties, experts and the public.  After months of  tremendous public pressure, the Wynne Government “backtracked” and “restored” funding stated that all kids would get the therapy they need regardless of age.  Parents are now refuting that, and almost a year later, evidence is starting to emerge that only a some kids have received funding from the government with many over the age of 5 still being denied.

What’s also in question is the transparency around a committee set up by the Wynne government to look at implementation of the Government’s new autism program set to start in June of this year, leaving many questions parents have with respect to this new program and what is currently taking place with therapy for kids over 5 unanswered.

A full copy of the open letter can be found here, and displayed below:

Hello Mr. Coteau,

Surely you are aware that the autism (ASD) community has been closely following the progress the Ministry of Children and Youth Services (MCYS) has made in regards to the implementation of the new Ontario Autism Program (OAP), since you, Mr. Coteau, were named the Minister of Children and Youth Services this past June.

Your initial commitment to improving the roll out of the new OAP and including the ASD community in the process, feels like nothing more than an exaggerated attempt at manipulating parents into believing we have a reason to celebrate, a reason to be hopeful. Many children are simply being forgotten, the public is still left without crucial information, non-disclosure agreements remain in effect on both the Advisory and Expert Committees, and many families are feeling as though their child’s services are about to be taken away. We are not hopeful, we are terrified.

In June of 2016, you had committed to removing the 5 year age cap and ensuring that all children with autism, regardless of age, receive the clinically recommended, individualized services that they need, including those currently receiving services and those removed from the Intensive Behavioral Intervention (IBI) wait list. You did not announce this as a short-term offering, but a long-term solution. As we approach spring of 2017 and are just a few months away from the anticipated start of the new Ontario Autism Program, things clearly aren’t going as planned.

Some things have remained consistent, in contradiction with your commitments. Regional providers are still suggesting and moving forward with plans to reduce services for those over 5; many families were delayed in receiving or simply not told that they qualify for the one-time funding payments, others face great difficulty reconciling funds though spent appropriately; wait lists continue to grow as services are not being offered to families any faster than before; Children 3-5 years old receiving new diagnoses’ are not only continuing to age out of IBI eligibility, they do not qualify for any interim funding or continuous ABA; and parents continue to be left in the dark about how the new OAP will affect their children’s lives.

Though you assured parents that all children would receive individualized therapy at the level of intensity that they need, every contract, letter, and even the Ministry web page make it very clear – when the new OAP begins in June, as spots become available, children 5 and older can not continue their DSO/DFO IBI, those removed from the wait list can not continue their currently funded private therapy or continuous ABA treatment from their regional provider. The age cap for intensive therapy? It will very much still exist as IBI will remain in place for those under the age of 5. How can we rely on the notion that the new OAP will offer children the same intensive services, when it belongs to a separate stream that they do not qualify for?

With no insight into what the new OAP will offer, committee meeting updates lacking great detail and nobody answering questions, all we are left to know is that in a few short months, regardless of whether or not our children are currently receiving exactly what they need, it will all be replaced with something different, and it appears, something less. If children were going to receive exactly what they need, many of these children would not be ripped away from their current services, or continue to be denied access to services they have long awaited – due to their age.
You should understand that after the Government’s misinterpretation of the expert committee’s recommendations last year, there is very little trust left within the ASD community. Any apparent attempt to refuse the release of essential information is seen as an attempt to prevent parents from opposing it before it is implemented. What issues do you anticipate will arise if you inform parents in a direct, transparent manner on decisions regarding the development of the OAP?

We can not take a chance on our children’s best interests and sit back until June in hopes of a favorable outcome with the ever-growing list of red flags and uncertainties. It is time that the Ministry explain itself, and provide detailed information in regards to the services & intensity options that children over 5 will receive in the Ontario Autism Program. Will you be keeping your promises, Mr. Coteau? Or are you balancing the budget on our backs once again?

Sincerely,
Brenna Bloodworth, Tanya Corey, John McArthur, Angelina Palmisano, Jenn Masonovich, Dennis Madge, Anne Jovanovic, Steve Cannon, Candice Shaver, Kate Dudley Logue, Ashley Sturgess, I Yu, Jenny Sturgeon, Jacques Sturgeon, Robert Shalka, Elena Gudyrenko, Jordyn Lee, Venette Gerden Purcell, Rhonda Allaby-Glass, Etienne Glass, Jason Koblovsky, Nicole Roy, Amy Hackett, Julie Ding, Hubert Wong, Angela Wong, Jenn Lalonde, Ross MacLean, Nisha Kapadia, Robert Orbegoso, Martina Pietracupa, Trish Dennis, Jennifer Stehlik, Omar D’Angelo, Pat McKenna, Julie-Anne Duncan, Stephen Chartrand, Marimuthu Ramakrishnan, Bobbie Arbuckle, Mike Arbuckle, Anne Mason, Rebecca Haight, Gwenny Seymour, Sara Haight, Lily Mondesir, Roberson Mondesir, Veronica Savage, Olen Boynton, Anne Burgess, Jillian Tweedy, Lesley Adams, Lina Khouri, Shannon Charlebois, Sarah Jones

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Ministry Responds To My Open Letter To Minister Coteau

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As many of you may remember I wrote an open letter to the Ontario Minister of Children and Youth Services Micheal Coteau regarding some concerns I had with the transition process, and with my son’s situation.  I was hoping for a direct response from Minister Coteau instead I received this (sorry for the chicken scratch, this is the number of the individual from the ministry that wrote this letter.  I was hung up on 3 times by the contact they gave me before I got to the program manager):

october-17th-2016-letter

For a Minister willing to meet with parents, Coteau seems extremely illusive to direct communication with those who are trying to reach him.  Apparently we’re getting busy signals.  As for my sons situation, apparently IBI still ends at 5 accounting to Cantkier, and she is unwilling to budge on giving my son the appropriate therapy he has been recommended by specialists and other medical professionals.  More soon.

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Brace Yourselves, The New Ontario Autism Program is Coming

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The Toronto Star recently sat down with the Ontario Minister of Children and Youth Services Michael Coteau to discuss changes being made to autism services in Ontario.  A common theme is starting to emerge over the past few months since the announcement of the new Ontario Autism Program.  The way the process for “change” has presented itself, could see catastrophic consequences going forward as a result of tight budget constraints, lack of transparency and consultation needed to identify problems, analyze the system on whole and come up with sustainable solutions.  The end result will be a number of children and families caught in the cross-fire and shoved aside as collateral damage.

In the interview with the Star Coteau stated:

“My job now is to deliver a program that will be considered the best program in this country”

Also from the Toronto Star article:

“It’s going to be tough transforming a system overnight,” Coteau said. “This is what I’ve been mandated to do by the premier. It’s what’s required and we’re going to get it done.”

If the goal is to create a system that is the best in the country, it cannot be done “overnight”.

There are two ways of fixing problems in any system.

1)    Crisis Management
2)    Structured Problem Solving and Analysis

If you try to solve problems that arise in complex systems on a case by case basis, others arise as a result of trying to solve those problems. You fix those, and more will pop up.  It becomes a web of problems in large part because the extent of the problems within the system when you are using a crisis management type of approach is not known. You are not looking at the system as a whole.  It’s a “whack-a-mole” type of approach where you only look at the problems you’re facing, you don’t analyze the system to anticipate problems, and develop solutions to lessen the effects of catastrophic damage that will likely occur if you don’t know the extent of the problems within the system as a whole.  The end result if Coteau continues with a crisis management case by case strategy are kids falling through the cracks (like mine) and the system will end up in a much worse position than it was prior to the announcement.

Structured problem solving on the other hand, allows a much broader look into the system through analysis.  Since the Auditor General’s 2013 report on autism services there hasn’t been any call for a public consultation from the government, just tightly controlled committees looking only at small pockets of the system, and the government hand picking what it wants to sell through those committee reports.  The users of that system are way more knowledgeable of the problems within it because they are the ones dealing with it on a day to day basis, and you can’t have an accurate picture of the problems without first broadly consulting the users.

The system as a whole needs to be revamped.  The government has stated it’s committed to that, but their actions to date seem to suggest otherwise.  The expert committee laid down a path for forward, which the government is still refusing to follow because they don’t seem to want to commit the needed funds.  That’s quite clear on the fact that Coteau is still steadfast on only providing expensive intensive behavior intervention therapy to kids under 5, which the expert panel has since refuted as being anything but their recommendation.  The experts have also been muzzled by the government in participating in any public conversations on this public policy.  That runs counter to the mandate Coteau has been given, when open public participation in the democratic process should be facilitated if the goal is to make the system rise above others nationally.

The path forward should include broad system wide open and public consultation with parents and people within the system who are the users of the system and the most valuable part of the system on whole in order to provide a complete picture of the problems within it, along with complete transparency so that the experts and the implementation committee can publicly contribute to this public conversation and consultation.  Simply selecting a few hand picked people will not represent the extent of the problems, nor provide proper analysis.  Putting any kind of muzzle on these people strongly suggests the government is anything but committed to doing what’s necessary to make the system the best in the country.

The proper way to deal with this in which the experts alluded too in their letter to the Minister, back a few weeks after the announcement of the new program,  is to first start out testing the any new changes to system first as a “pilot project”, or in analytical terms, alpha and beta testing. I would add that alpha and beta testing commence after proper public consultation with users of the system and a proper plan has been developed as a result of those consultations. This gives the government the chance to test changes made to complex systems in a controlled environment to lessen the effects of problems limiting any damage the system might occur as a result.  This does NOT happen “overnight”!

If you’ve done open consultations with the users and know the full extent of the problems, you can anticipate those problems moving forward.  You need to first analyze the effects on the system in a controlled environment, work through the problems, and slowly expand those changes out, repeating the process. In a complex system like autism supports, it can take upwards of 2 years or more to fully role out.  Open consultation with the users again has not happened, and Coteau has no idea of the extent of the problems in the current system because he is focusing on small samples of the user base.

Simply rolling out changes to complex systems “overnight” without knowing the extent of the problems within it it, due to lack of consultation will create a tremendous amount of collateral damage, as the government is only interested in saving face and on a budget, rather than seriously looking at a massive systemic and sustainable change, and realizing this is about children not politics.  I’m sorry Mr. Coteau, but it is unacceptable in my books to use autistic children as collateral damage while your government plays politics and tries to cover up the extent of the damage you’ve already created since March by ignoring the advice of your own expert panel, and refusing to broadly consult with parents across this province which continues to this day.

The only good news is that Coteau is now looking at placing accountability mechanisms on regional service providers, and looking at their budgets.  Reallocating money within the system is a step forward, but will likely not produce the funds needed to restructure the system on whole, nor cover the costs of collateral damage that has and is about to occur as a result of the lack of consultations and understanding of the problems that will inevitably be serious moving forward.

So my message to my fellow autism parents if the status quo in the current process is allowed to continue:

“Brace yourselves, the new Ontario Autism Program is coming.” Expect massive problems and collateral damage.

We need a commitment to an open and transparent process, and one that has a flexible budget, if Coteau is at all serious in delivering his mandate of creating a system of autism supports that can be looked upon as one of the best in the country.  Not one child should fall victim to collateral damage as a result of political games being played by the Wynne Liberals to save face and a few bucks.  A lot already have as a result of how Wynne has handled this.  The government has a moral and ethical obligation to openly and transparently consult with stakeholders during this “transition” phase to ensure that no child is left behind when the new program is rolled out “overnight”.

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Open Letter to Minister Michael Coteau MYCS – Ontario

Minister Coteau,

I received a letter from the central region of your ministry while I had expected an answer regarding my complaint against Kinark directly from your office.  Part of this complaint was to raise policy concerns to your office directly regarding the lack accountability of AIPs while your office further and directly investigated my complaint against Kinark. From the September 22nd Ministry letter underwritten by Ms. Cantkier:

“The Ministry is committed to monitoring the Autism Intervention Program (AIP to ensure that the program achieves its goals and objectives and makes efficient use of public resources).”

Had your office directly followed up on my complaint it would have discovered that the system to apply for AIP’s is deeply flawed.  My son Matthew received a diagnosis of Autism in which it was recommended that we as parents contact Kinark directly and verbally to be put on the IBI wait list only to find for years after we did just that, multiple times Kinark refused to do so.  I’ve also provided the Ministry with documentation from another family that has gone through a similar situation with Kinark.

In an electronic age, recommendations from family support network professionals to AIP programs should be done by those professionals and submitted to Kinark electronically.  I have to question even in 2010 why that wasn’t done in our case. It should be an automatic electronic process.  It should NOT be left for families to connect with AIPs verbally to apply. That should be handled on the back end, and allows the possibility of the AIP to manipulate the process, with little to no evidence of a verbal request to be put on wait lists often pitting the care givers word against the AIP.  This policy doesn’t have any common sense in this day and age whatsoever.

I don’t understand why under these circumstances the ministry is refusing to find a viable solution for my son who has been waiting 6 ½ years for IBI (while others on the wait list who have been waiting far less than my son are entitled to support now) and why the ministry hasn’t taken the initiative to work with Kinark upon my complaint to find a solution, nor properly and fully investigated which would have revealed the policy flaws outlined above that need to be corrected in order for the Ministry too fulfill the mandate to accurately monitor the AIPs ahead of the new program.

Back to the September 22nd letter, in the same paragraph the Ministry stated:

“In situations where families have concerns with transfer payment agencies, including regional autism providers, the ministry encourages families to raise their concerns directly with these organizations and follow their complaint resolution process.  This process may include the senior management, and if necessary, the board of directors to resolve differences.”

Ultimate responsibility for ensuring compliance with policy and legislation regarding transfer payments falls directly under the Ministers portfolio.  There seems to be a lack of enforcement audits by the ministry to ensure AIPs are actually monitored for compliance  to ensure AIP goals and objectives are properly met and use of public resources (such as transfer payments and administered programs) are actually reaching eligible families under these circumstances.  The fact that this Ministry didn’t do proper follow up on my family’s situation now TWICE is representative of that.  Where there is a lack of accountability and compliance audits, one could reasonably without a doubt expect abuse and manipulation of the system as a result.

Instead of this ministry periodically questioning users of this system (parents and caregivers) electronically to ensure legislative and policy enforcement of regional AIPs on a regular basis, it is the Ministry’s position from the statements provided above that compliance with legislation, mandates, and policy, is left to the AIP’s board of directors and complaint resolution officers to self-police.  I find that interesting considering it is well within the legislative scope and jurisdiction of this Ministry to ensure compliance with such upon complaint to this office.

I also find it very interesting that parents who are receiving ACSD support are subjected to compliance audits every few years, yet under the nose of this Ministry Kinark’s administration budget has ballooned yet again, while advocates list this agency as being one of the worst in Ontario regarding the treatment of eligible children and families, and providing the proper care, and following ministerial guidelines under their own mandates.  The Minister even acknowledged recently to some degree that there are problems being reported to this office regarding the conduct of AIPs, and yet I’m referred back to a complaints procedure at Kinark, when it’s this ministry who has direct oversight of this organizations compliance with ministerial guidelines.

This self-policing approach to AIPs is leaving families such as mine without services (while we qualify) at great expense to the province and tax payer.  As a result of the lack of compliance audits and self-policing of AIPs, this Ministry cannot at all guarantee that families in the new Ontario Autism Program (OAP) in June 2017 will meet any sort of mandate, while currently several parents are left battling out who said what because the first point of contact with AIPs is left to one that is verbal rather than professional electronic and traceable referrals to the program!

Politely, it is this ministers legal responsibility to follow up properly with Kinark’s board of directors to get this matter resolved since it is entirely a complaint based on mandates, policy, legislation and this agency’s conduct in which the minister has direct oversight.  It should not be the job of the caregiver or parent upon complaint into the ministry to be chasing a moving target, adding to the frustration, stress, mistrust, and anxiety over a transition to the new autism program which should be seamless and transparent if the government at all was listening to parents concerns over the past few months.

Finally from the Ministry’s letter dated September 22nd 2016:

“The ministry funds a range of supports and services that may be of assistance to your family.  I suggest that you contact with Kerry’s Place Autism Services who provide ASD consultations and respite and Applied Behavior Analysis (ABA) program.  I encourage you to re-refer Matthew to the ABA program at which time service length and intensity will be determined”

Also from the September 22nd letter:

“The Ministry of Children and Youth Services is investing in ABA services to increase their capacity, intensity and length.  In 2017 the ministry will start implementing the new Ontario Autism Program that will adjust the intensity of services to correspond with the children’s needs and will offer a single access point to autism services in each region”

I’ve been in contact with Children’s Treatment Network (CTN) who diagnosed my son and referred us to Kinark for IBI.  There is currently NO community supports that are in place that are even close to the intensity he needs (as a result of the government’s policy decisions since March 2016) in which CTN is in full agreement of, along with descending views of your own expert panel your government is trying to keep quite through non-disclosure agreements.

We’ve placed my son on the ABA wait list in which the ministry acknowledged was a total of 2 – 4 hours/week as a supplementary which was sold to the people of Ontario as a transition program to the new OAP, even though he would not benefit from this program.   The current wait list for that in York region is 1 ½ years which extends past the date of the new OAP which is supposed to replace this ABA program.  This leaves many in “transition” with NO services while the new program is put into place.  It’s been over 6 months since the announcement of this program and investments into ABA “transitional” services seem to be nonexistent. In fact the last time we applied for this useless block of ABA was in 2013, and the wait list back then was 1 year.  It’s now grown to 1 ½ years wait with the government investing 6 months ago to “increase” capacity.

In conclusion Minister Coteau, your office has direct responsibility under its mandate to ensure AIPs are being compliant with legislation, transfer payments, and ministry guidelines.  As outlined and acknowledged by the Ministry in its September 22nd, 2016 letter, the ministry doesn’t have the proper enforcement regime in place, nor does it investigate compliance issues properly with AIPs, all the while you directly acknowledged to parents recently you are aware of concerns regarding AIPs yet have done nothing to date to resolve those accountability concerns, nor has the ministry added any acknowledgement of that in response to my complaint against Kinark.

This ministry is refusing to work with parents upon complaint, and is refusing get involved in finding a solution for my 11 year old boy who has been eligible for IBI for 6 ½ years.

When is the ministry under your leadership Mr. Coteau, going to start following its mandate to the people of Ontario,  and understand that neglect in doing so has severely impacted many families and the futures of our kids.  I believe this Ministry’s responses to date regarding my sons issues and unwillingness to get involved to find solutions to those caught up in an imperfect system closely align to that in which was reported by the Ombudsman in August regarding adult services with a different Ministry which launched a multiyear systemic investigation.  The culture in your office needs to change Mr. Coteau if you are expected to put forth viable solid solutions to a crisis your ministry is directly responsible for creating due to lack of enforcement and accountability mechanisms on AIPs.  Do parents have to go through yet another round of protests, fights, and complaints before your office does the right thing?

We shouldn’t be fighting for services at all Mr. Coteau.  I don’t think your government quite understands that point yet. We have enough on our plates, than to be dealing with this mess in which the people of Ontario pay you handsomely for.  I would like a resolution to my sons situation please.

Warm Regards,

Jason Koblovsky

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