Posts Tagged autismdoesntendat5

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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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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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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Why Is Premier Kathleen Wynne Misinforming Parents on The New Autism Program?

This question was asked by Ontario Progressive Conservative leader Patrick Brown in question period twice today, only to be asked by the speaker of the legislature to withdrawal the questions.  Question I would like to pose; why is the speaker of the Ontario legislature shutting down completely legitimate questions to the government?

This latest bought in the heart wrenching autism policy war for parents, comes a day after the Toronto Star released an investigative piece on a letter of dismay written by experts tasked to revamp the new autism program shortly after Wynne’s government announced the changes. In the letter the panel of 6 experts expressed concerns regarding the government’s position on removing kids over 5 from intensive therapy; a move in which the government has not back tracked on to date.  In the letter addressed to Tracy McCharles the Minister of Children and Youth Services at the time the panel stated:

The new program, as it has been described, treats children five and up as if their needs and capacities are qualitatively different from those younger than five years of age. There is no evidence to support this view.

The letter also expressed concerns regarding how the new program is being rolled out:

The autism program was “initiated prematurely, without sufficient consultation” with families, schools, professionals and the committee and should have been developed and tested first, perhaps as a pilot project.

The committee’s report cited by the ministry did not propose imposing an age cut-off. Instead, it envisioned an IBI program refocused on children ages two to four only if there were ample supports for older children provided in schools and through an enhanced version of the Ontario’s applied behaviour analysis (ABA) program.

What the Ontario Government has done is essentially stopped all treatment, and only paid some support for families that were on the wait list prior to April 1st, 2016.  Others while waiting for the new program to be put in place (there is still no details as to what exactly this new autism program will look like in June 2017) are left with no support at all.  A sentiment echoed by Brown today in his question to the deputy premier, in which he was not provided an answer.  It was also echoed by the panel in the statement above that this transition was not properly planned.  As a result, kids like my son who are over the age of 5 are falling through the cracks.

 

What’s more troubling is the fact that the speaker of the legislature quite obviously wants to shut down questions regarding the new autism program, and problems with this “transition”, and misleading statements by government.  I find that extremely interesting, and possibly an abuse of power. The panel of experts has had their tongues cut out in the form of confidentiality agreements, and refuse to speak on the matter even though they have an ethical and moral duty to do so.  I’m a Liberal, and this doesn’t represent the Liberal ideology of transparency in democracy.

I’m getting so sick of having to question Wynne as a Liberal at every turn, and getting sick and tired of seeing this woman play politics with not just my son’s future, but the future of many kids in Ontario.  She has done nothing but pile on enormous amounts of stress on the backs of parents at the expense of a failed approach to spin problems that are in crisis, rather than actually show true leadership.  To get this Liberal government to even acknowledge a crisis in policy is like slow Chinese water torture, while pulling your finger and toe nails out, and getting castrated all at the same time.  As such this is a government that has significantly lost touch with the people they represent since Wynne has taken over, and is obsessed with narcissistic behaviors rather than concrete viable policy.  It’s time for the Liberal Party of Ontario to re-boot its leader, and clean out the desks of the kids in short pants.

UPDATE: August 15th, 2016 10:45pm:

The Ontario Autism Coalition has just released a press release in which it is demanding an apology from the Minister of Children and Youth Services for misinforming parents, and will be holding protests outside the Minister’s office tomorrow.  In my view this also raises very serious questions as to why the speaker of the legislature today shut down Patrick Brown on asking the government why they have misinformed parents.  From the Ontario Autism Coalition press release:

 “It’s about openness and transparency,” says OAC President Bruce McIntosh, “and it’s also about trust. What little trust that may have existed (between the Liberals and the autism community) has been seriously shaken … by the news that a non-disclosure agreement (NDA) was used to enable the government to promote and disseminate a false version of expert advice.”

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Follow up with Ontario’s Ministry of Children And Youth Services on Autism Services

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I’ve received a follow up from the Ministry of Children and Youth Services in Ontario regarding my son’s position (who is severely non-verbal autistic) after insisting on it regarding what we were told during the last conversation.  What I received back looked like a canned response. So here it is in full.  I’ll dissect the response.

Dear Mr. Koblovsky:

Thank you for your email regarding autism services for your son. I appreciate the opportunity to respond and provide you with some information.

With a canned pre-made template but okay I’ll listen.

The new Ontario Autism Program, which will begin in June 2017, will deliver individualized autism treatment that provides the intensity and flexibility of service to meet the individual needs of each child, regardless of his or her age.

As of April 1, 2016, children five and over are no longer eligible to apply for IBI. These children can apply for ABA services and receive ABA when a space becomes available. The ministry is increasing the number of spaces available in ABA beginning this year, and doubling the maximum intensity available for each child in 2017. These changes mean that more children who are waiting for ABA will receive services sooner, they will receive more service, and for longer than they would have before these changes.

What’s being said here is that my son who is 11 is no longer eligible to apply for intensive therapy.  The only therapy that is available for him is the ABA program.  That program only allows for 1 hour per week slots, and most of it is training the parents on ABA rather than observing the child.  The ministry is indicating it will “up” the program here to 2 hours per week?  Still not effective, not even close to being enough.  It’s a waste of money across the board.  This amount of therapy from our experience as well as many others hasn’t produced any successes I am aware of in its history.

The wait time for this ineffective therapy is 1 1/2 years! This is being used as “transitional” services by the ministry for kids who are over the age of 5.  Those that apply now for these services will not receive support until well after the new program takes place.  The government promised that all kids affected by this transition to the new program would receive intensive therapy no matter the age until the new program is in place.  Many parents were given upwards of $10K to purchase those supports, until the new program has been rolled out.  That doesn’t seem to be the case for my son, largely due to his age.

Beginning in 2017, children of all ages will be eligible to apply to the new program, and will receive more flexible and individualized services based on their needs. There will also be a single access point for autism services in each region, so that families do not have to apply to two separate programs.

It better not be Kinark! What this is saying to me, is parents will not be eligible to apply for the new program until it is rolled out.  Meaning there is no plan to have a wait list right now for that program. Those who were on the IBI wait list prior to April 1st, 2016 will keep their spot from what I understand, and those not on the wait list will have to wait for the new program in order to even get on this wait list and will be at the bottom of the barrel.  It is unclear from this whether those who are on the ineffective ABA wait list will have their spot in line transferred to the new program, or will this be an automatic transition with priority given to those who were on the wait list prior to April 1st, 2016 (most of which were the ones protesting at queens park), and our place in line determined in 2017.

I’m getting the feeling from the way this has all been set up, the “backtrack” was to make those who were the majority of the autism protests happy, and screw everyone else in the process.

Your email to Sharon Gabison from the Ontario Autism Coalition regarding your family’s situation was forwarded to your local ministry regional office. I understand the program supervisor contacted you to provide information on what services are currently available to your family. If you have any written documentation regarding your son’s past application to IBI, please contact Kinark or your ministry regional office.

I had previously stated that we had documentation from Kinark regarding our placement on the wait list for IBI.  Turns out that it was actually for the ineffective ABA program.  To date Kinark hasn’t sent anything to my family regarding putting my severely autistic son on the IBI wait list after repeated attempts to get them to do so.  I am aware and have forwarded another case to the minister directly where this has happened to another eligible family as well.  I have filed a ministerial complaint against Kinark, read the Ministry’s response and my open letter to Minister Coteau.

We know the transition to an improved autism program may be challenging for some families. Information is available online at http://www.ontario.ca/autism on how the changes may have an impact on your family while transitioning to the Ontario Autism Program. It includes the changes that will occur and the next steps a family can expect.

The problem with this statement is they used the word “challenging”.  Parents of disabled kids have enough on our plates regarding “challenges”.   This represents a lack of understanding and complete ignorance of the challenges we face as care givers on any given day.  To add to these challenges intentionally is immoral, self serving, ignorant, and also representative of the fact that Kathleen Wynne was not listening to parents over the past few months that came to Queen’s Park looking for understanding from politicians on what we all have to go through on a day to day basis.

It seems to me, this “backtrack” on autism funding and age restrictions has been nothing more than smoke and mirrors, combined with an attempt to put lipstick on a pig.

If you have further questions or concerns about specific services in your community, you may find it helpful to contact Greg Ladyka, Program Supervisor, at 905-952-1907, or Brenda LeMoine, Community Program Manager, at 905-952-1901.

Thank you for bringing this matter to my attention.

Elsbeth Schokking
Assistant Deputy Minister’s Office
Service Delivery Division
Ministry of Children and Youth Services

A very junior contact being provided to members of the Ontario Autism Coalition.  Politically that states that autism services isn’t very high on the priority list anymore after the protests died out.  In solidarity to the autism community on behalf of my son who has been waiting 6 1/2 years for intensive therapy:

thefight

hunger games

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Ministry Staffer Claims His Boss Mislead Public On Restoring Autism Funding in Ontario

 

MichaelCoteau

(Ontario’s Minister Of Child and Youth Services Michael Coteau (above) And Premier Kathleen Wynne called out on false statements regarding Autism funding by Ministry staffer)

A few months ago, the Ontario Ministry of Children and Youth Services announced plans to “restore” autism funding for intensive therapy.  On the Ministry’s own website and press releases during this announcement the Ministry told the public that “all children with autism regardless of age will get the services they need at the intensity they need.” According to sources within the Ministry I spoke with today regarding getting my own son the therapy he needs, the ministry staffer acknowledged that statement provided by the Ministry to the public is indeed false.

My son who is now 11 received a recommendation by several specialists (to which is documented) for Intensive Behavior Intervention (IBI) therapy.  That was in 2010.  I called Kinark who handles the wait lists for IBI shortly after this recommendation in 2010 (my son was 5 at the time), and during that call we were put on the wait list and told we would have an assessment 6 months prior to receiving IBI.  We were told the wait list was about 2 1/2 years so we should get a call within the 2 year mark.

In 2012 we didn’t receive word regarding any assessments from Kinark.  I called to follow up only to be told we were not on the wait list. We went through the intake process for IBI yet again.  At the time we were experiencing major anxiety issues and self-injurious behaviors with my son along with toileting issues.  I asked Kinark if we there was any immediate support available, they told me no and to apply for Applied Behavior Analysis (ABA) until we received IBI.  Once IBI was involved it would take over the ABA therapy I was told.

Between 2012 – 2013 we received ABA.  ABA was 1 hour per week for 8 weeks, most of which was done without my son being observed, and mostly done with my wife and I at home while my son was attending school.  The goals set out in the training as a result were not successful.  As a result both my wife and I decided to not follow through with another block of ABA since we were not seeing the results and my son needed to be properly observed through a more intensive process. We wanted to wait until IBI was involved. In late 2013 we connected with Kinark again, to find out once again my son was NOT put on the wait list.  We were assured that would happen for the third time.

Fast forward to last week. We still hadn’t heard anything from Kinark.  I followed up with them, only to be told that my son is now 11 and does not qualify for intensive therapy anymore as per the new ministerial guidelines released to the public in June.  They told me to connect with the Children’s Treatment Network to get on the centralized ABA wait list for the one hour per week sessions we had done before and were not successful.

With the help of the Ontario Autism Coalition (OAC) I forwarded off the medical documents from 2010 recommending my son to IBI with Kinark and basically stated what I had just written above to the Ministry of Child and Youth Services for investigation and follow up.  I got a follow up call today from the Ministry.

Right from the beginning of that conversation I got the impression that they were not going to help, and they were even questioning whether or not we got the recommendation from our doctors and specialists for IBI, all while the staffer had the paperwork I submitted into OAC from the doctors for just that in front of him.  It took him 5 mins to look through 8 pages, and he still disagreed with me regarding the recommendation stating he couldn’t “find it”.  I pointed him to the page # on where the recommendation was and had him read to me line by line.

Once he got to the recommendation, the ministry staffer stated that regardless of what was on the paper, that the only thing Kinark had a record of was my call in 2012 for ABA.  There was no record of my son on the IBI wait list. Say what?  I asked the staffer what our options were, again I was told to apply for the centralized ABA wait list.  I brought up my concerns regarding the one hour per week ABA therapy, only to be told that was our ONLY option.

I asked: “Are you telling me that Kathleen Wynne’s promise to get autism kids the therapy they need at the intensity they need is false and misleading?”

He replied: “Yes as it stands right now.”

He then stated that any issues between Kinark and my family regarding the wait lists were a private matter and the ministry would not intervene.

So with my son now hitting puberty and the accelerated behavioral issues that come with that stage in life, we still don’t have the intensive therapy that has been recommended by at least 4 specialists 6 ½ years ago and from what the Ministry has told me today, that’s not on the horizon either.  Kathleen Wynne needs to explain to the people of Ontario who were behind the parents of autistic kids, exactly what the heck is going on, and why parents and kids months after this announcement are still NOT getting the services they need at the intensity they need, and why she has mislead the public in believing that this therapy was restored?

Author’s Note: I want to make it clear, that I’ve heard of several stories from specialists and from parents that Kinark is notorious for “losing” paperwork.  I’m not the first one with this problem and it extends to other regional providers as well. This needs to be immediately addressed.

What our family desperately needs right now is a commitment that my son will get the therapy he needs at the intensity he needs at some point in the future, in writing from the Ministry with a date on when to expect it, so we can develop a support plan with my sons school, and support network who have been waiting for 6 1/2 years for this support to be in place.  I did not get that commitment from the Ministry today, nor was any attempt made at resolving the lack of intensive supports for my son, nor given any direction on which to take to ensure my son at some point would receive the intensive therapy he needs as directed by documents submitted to the ministry and promised by the Premier.

As it stands right now, and from my conversations with the ministry and Kinark, my son will not be getting the intensive treatment he needs as promised by Wynne regardless of the circumstances, due to his age, and he’s not alone.

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