Archive for category Autism Policy
The Minister of Children and Youth Services Michael Coteau has actively refused to bring in regulation of the provinces regional autism centers despite major issues being reported to the government regarding the behaviors of these regional service providers. I’ve heard significant issues over the past few months with respect to the roll out of the new Ontario Autism Program and the lack of compliance with ministerial guidelines by these providers in which the Minister himself stated was an issue in a town hall last May.
The issues right now are with respect to wait list management in which is the responsibility of these regional centres, and adherence to new OAP guidelines. The Ministry has stated it will be providing regulations regarding how private autism centres are administered, however Coteau in a townhall with parents last May rejected the claim that regulations were needed on the regional centres because “some people are happy” despite admitting frustration that these centres were not adhering to guidelines. This decision to not regulate the regional autism centres may have opened the door to massive legal liability on the province moving forward.
I’ve written a lot on this blog about autism and our long battle to get service for my son, which has come at great cost to all in our family. While doing this I’ve been making a legal case directly to the Ministry regarding the need for regulation of the regional autism centres. That appears to have fallen on deaf ears. With less than a week away from the election writ dropping, there has been no legislative movement on the file. I recently commented on social media about the case we made to the Ministry with the hopes that it might assist others legally going forward. We are now getting service through our regional provider. Here is that conversation:
JK (me): “The implementation committee rejected calls for legislation to regulate the regional centers. I have the Minister on tape with respect to that, and even acknowledging the fact that these regional centres do not follow ministerial guidelines. It’s the ministry’s legal responsibility as the legislative body to oversee these centres. The minister is also on record that these regional centres HAVE to provide you with your place in line when asked, and an estimate as to when you are expected to get service.
In short those that are on the implementation committee who rejected regulating the regionals hoping a direct funding option would cure any bad behavior, opened up the government to substantial legal liability. The government can’t distance itself from the behaviors of the regionals because they’ve openly admitted there are problems, and have actively refused to legislate a solution.
Statute of limitations for all of this began May of last year with the admission from Minister in the first pilot teleconference. Families experiencing problems now, have one more year to file with the Superior Court of Justice. There may not be any limitations on the Human Rights Tribunal since the problem is ongoing.”
Link to the May 2017 Townhall is here:
MB: “The ministry has successfully argued before the Ontario Human Rights Tribunal that the government is not responsible for the service delivery of the AIP. We are just on of many other programs the province claims ownership of but the reality is there is no oversight over any programs.
The MCYS has allowed children’s aid at at with impunity for years. And the youth justice system under the MCYS doez what exactly?
It was public embarrassment that lead to the current charges, nothing more. The only way to affect change is through public awareness.”
JK: “Yes they have successfully argued that they are not responsible in the past, however these cases didn’t include an admission from the Minister and government directly of the problems, and admittedly walking back on regulation because “some people are happy”. We also had several phone calls recorded from our regional provider, blatantly disregarding ministerial guidelines, and treating us as hostile.
I would also add, after we slapped this on the Ministry, the Ministry essentially took over, and is currently overseeing progression of our file with the regional provider ensuring service delivery. I’ve been in consistent contact with the Ministry regarding service delivery since November. They’ve been working along side the regional ensuring we are properly supported.
MB: “I have an email from the ministry asking about accountability. They avoided answering the question.
I used this example: as a feberal employee i am responsible for my actions with the public. My employer, the federal government is accountable for my actions. They will not admit accountability.”
JK: “Of course they aren’t going to blatantly admit it. They are currently trying to duck liability. You don’t need them to admit it. The minister already has.
Coteau is on record stating the the Ministry is accountable. Not only did he state that in the teletownhall in May last year, but prior to that he reaffirmed that position here:
“Parents have long complained about red tape, miscommunication and inconsistencies when dealing with the regional centres. The minister said he has heard from families who say they’ve been pressured to choose services run by those centres instead of the direct funding option they prefer, which would allow them to arrange and pay for their own therapist and treatment schedule.
Many say they’ve been told by the centres that choosing direct funding will mean waiting at least a year longer for treatment, he said.
“To me, that’s unacceptable. We need to hold systems accountable,” he said. “When you have so many people complaining about a particular system, the status quo cannot be maintained.””
^^ He assumed liability with these statements in the Star. Couple that with an admission that the regionals are disregarding ministerial guidelines, a walk back on regulation in the teletownhall in May, and they can’t distance themselves from it. After the first teletownhall in May last year, all the questions were screened and Coteau stuck to talking points, for this very reason. We got him off script in the May teletownhall. He screwed up royally. They need to regulate. It’ll be up to next government to deal this with now. In the meantime that’s the door to walk through.
One final point and the reason why I’m coming forward in a public way now on this, is because the election writ drops next week. So unless the Ministry drops legislation in to fix it and passes third reading in the next 3 or 4 business days, this door will be open for a while for others to walk through.”
If any of you have any further questions you can e-mail me at jkobopoli at rogers dot com
Since the Patrick Brown scandal broke on CTV, there are a lot of unanswered questions about the allegations surrounding Brown’s accusers of sexual misconduct, to the role both the party and the reporting by CTV News played in Brown’s freefall as leader of the Ontario PC party. In a two part interview with Global TV which played out over two days, Brown blasted CTV News for its reporting on the scandal calling it utterly false. Brown also dropped a bombshell stating that he didn’t authorize his own resignation. Toronto’s CityTV was pushed out of the PC’s offices in Queen’s Park when asking for proof of Brown’s resignation. Combine that with a leadership race in which all leaders are willing to throw out the party platform to take a much less progressive direction in their bid to wow voters, and we start to see a pandora’s box opening up on the Ontario PC Party.
Brown stated in his interview with Global that he has a lot of political foes inside and outside the party that could have set this all up and that CTV didn’t do their due diligence in its reporting on the matter. From following this story closely over the past few weeks, there has been several news organizations trying to verify CTV’s reporting on the allegations and have not been able to verify CTV’s reports on Brown’s sexual misconduct. Eventually the media themselves have raised questions on CTV’s reporting on the allegations. Then it was revealed that witnesses to the events CTV reported on had a different take on what had transpired were ignored. Brown has threatened legal action on CTV News.
When listening to the PC leadership debates, it’s quite clear that all of the proposed candidates are way more right than Brown. Leadership hopeful Christine Elliot even suggesting that the province needs to privatize autism services in Ontario. This would be a front to the privatization of health care in this province and representative of far right wing ideology. Full disclosure I have a child with autism. This approach would mean that needed therapy and supports would be out of our reach financially. While the federal conservatives argued against due process with respect to Omar Khadr, and that the financial pay Khadr received should have gone to kids with autism, I’m really curious to know as a parent with a child who has autism, what the federal conservatives think with respect to Elliot’s suggestion of privatization, and what they think on due process for Brown.
What seems to have transpired is that this inside hit job on Brown could be best described as the right wing of the party going after the progressives. If that is the case, than we can expect to sit back and watch this party plunge itself into civil war prior to an election and there’s a lot of indication that’s going to happen in the weeks ahead. There are indications that the voters of Ontario may have shifted from a traditional right of center voting intentions to left of center lead by the millennials. Brown represented that shift with a much more progressive direction he wanted to take the province in. If the party’s shift is to the right, it’s going to be very difficult to not just win the next election, but if civil war breaks out in the party it’s going to be near impossible for the party to win opposition let alone form government.
Whatever the case maybe, the public is owed an explanation and transparency by the party prior to any new leader taking over so that voters of this province can make an informed choice moving forward.
(CUPE Says Money Should Go To Its Members Rather Than Autistic Kids)
CUPE who is the union representing educational assistants (EA) in the province of Ontario released a press release this week in which it has lambasted the provincial government for piloting a project which will allow autistic kids to receive privately purchased therapy to be administered in public schools. CUPE says by doing this would open the door to privately funded education, and that its current members are not qualified to handle special needs students despite millions that have been negotiated in front line workers with the province over recent years.
As part of its revamp of Autism services in Ontario the provincial government is expected in the next few months to allow families a choice to purchase Applied Behavior Analysis (ABA) therapy for kids with autism privately or go through publicly funded Centre’s. This move by the province to offer a private option paid for by the province is expected to reduce wait times for this needed therapy.
The move by the province to pilot a project to allow privately purchased workers to administer this therapy in school would be a necessity to the success of students receiving that therapy at the choice of the families, and lighten the load on parents who often have had to drive autistic kids to and from these appointments, often in separate cities in which the these children are being educated in and miss days at work. CUPE on the other hand thinks that the province should shell out that money to retrain EA’s across the province, rather than give parents a choice or say in their child’s therapy:
“We represent 13,000 Educational Assistants who work hard, with other Board employees and parents, to develop and deliver individualized educational programs to assist students with multiple challenges, including those with autism,” said Terri Preston, Chair of the CUPE Ontario School Board Coordinating Committee. “They are deeply concerned by any initiative that opens the door to the privatization of those critical services in our schools.”
Parents of children with special needs, including children with autism, have every right to expect they can walk into their local school and receive the services their children need, fully funded and publicly provided,” said Fred Hahn, President of CUPE Ontario. “They shouldn’t have to worry about securing outside funding, finding a private provider or paying out of their own pockets, to ensure their children succeed at school. That is the responsibility of the government and instead of just abdicating their role to private operators, they should be properly funding and providing all the necessary services students with special needs require.”
The ABA therapy these kids will be receiving will most likely be publicly funded as part of the new Ontario Autism Program. Terri Preston, Chair of the CUPE Ontario School Board Coordinating Committee essentially stated in this bizarre press release from CUPE that the union negotiated $52 million from the province for front line workers recently, who by admission of this press release are not qualified enough to be working with special needs kids in our public schools, and the government must pay for unqualified staff to get degrees in behavior analysis (which is a two year full time university course at Brock University):
“As education workers, we know students with special needs need more front-line staff support,” said Preston. “It’s why, in contract extension talks with the government, we negotiated $52 million over two years to increase front-line staff working with students with special needs. Even with those hard-won investments, more support is needed for students with a variety of complex needs and that’s why the government needs to finally conduct a long-overdue funding formula review.”
The press release gets a hell of a lot weirder as you read on. In its closing remarks after blasting the government for allowing parents a choice and complaining that its membership is under-qualified to support kids with special needs ended the press release with this statement:
“Many of us already have ABA training or incorporate ABA principles into our work with students,” said Laura Walton, an Educational Assistant who is also Vice-Chair of CUPE’s Ontario School Board Coordinating Committee. “Educational Assistants are constantly upgrading their skills and knowledge, often at their own expense, so any funded training opportunities are always welcome. We have been asking the government to ensure Educational Assistants, and all board employees who work to address the complex needs of our students, have access to an array of professional development opportunities, including ABA training.”
Wouldn’t working with privately funded ABA therapists which I would think would be the goal of the government here, be more beneficial to both their own members and the students they serve? Wouldn’t that give EA’s workplace experience in ABA working alongside these therapists? Where’s the outrage from CUPE that university or college programs educating future EA’s are not required under law to ensure an extensive ABA training? After a $52 million investment from the province in front line EA workers to support special needs, why is the province agreeing with CUPE to hire unqualified staff in a $52 million negotiation in the first place? In our view it should not be the position of the province or tax payer to front the bill for unqualified staff. Simply hiring qualified staff would be a better more economical option, or better yet CUPE can pick up that tab.
The problem that exists right now in the education system is one where there is money in the system, but it’s not getting to the students that need it. There’s no accountability in the education system right now. From this press release, it sounds that CUPE wants to be showered again with government coffers, while the rights of special needs kids in the system are yet again pitted against the needs of education sector unions. For its part, in its press release CUPE blames successive Liberal and PC governments for the lack of supports in our school system, yet falls short on criticizing the NDP who have yet to come out with a platform recognizing the lack of accountability the public education system is currently facing right now – the lives that have already been lost across the province to due education sector unions ignoring student mental health issues – the full time battles parents of kids of all levels have had to deal with as a result of these unions – yet we continue to shove money down the throats of this unaccountable system in hopes it gets better. $52 million CUPE negotiated went towards unqualified staff. When will the rights of all students in Ontario be put before union demands, and when will we have an accountable public education system?
FOR IMMEDIATE RELEASE
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.
(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.
-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.
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.
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.
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.
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.
(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?
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