Archive for category Autism Commentary
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”.
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.
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.”
I’ve had several parents come up too me with their stories since last week’s post on my son’s situation. There seems to be a large number of fights and battles with regional service providers like Kinark across the province that manage services for kids with autism too get kids the services they need. It’s important to note that these service providers fall within direct oversight of the Ministry of Children and Youth Services. The Ontario Autism Coalition has been fielding complaints from parents regarding these service providers as well. Too simply state that my son’s situation is an isolated incident would be to undermine the enormity and severity of some of the problems parents are reporting to advocates regarding regional service providers across the province. Kinark has been named one of the top three worst service providers in the province for parental complaints by the Ontario Autism Coalition.
In 2006, Ontario Premier Kathleen Wynne’s spouse Jane Rounthwaite worked as a consultant with Kinark. According to ontariosunshinelist.com there was a spike in 2004 where the total number of employees at Kinark that were paid $100,000 or more reached 29. Prior to when the Ontario Liberals took office in 2003, Kinark only had about 1 – 2 people making over $100,000. When Rounthwaite was hired by Kinark in 2006, the total number of people employed by Kinark making over $100,000 was around 8. In 2015 that number has ballooned to 22 people working for Kinark that are making over $100,000 (click image to enlarge):
There was quite obviously a problem with this organizations management back in 2004 with ballooning overhead costs, in which I would think was the primary reason why the organization was looking for a contractor to “fix” the issue. Somehow, Rounthwaite got the contract. It’s still not clear why Rounthwaite was given that contract. Wynne was the education minister at the time, and Rounthwaite was a principle stakeholder in the contracting company hired by Kinark. To date the public isn’t clear on what Rounthwaite’s involvement with Kinark was. Questions journalists had while investigating Rounthwaite’s involvement with Kinark have been repeatedly blocked by the government, and the issue hasn’t seen the light of day with the ethics commissioner for proper follow up either.
What we are seeing from an advocacy point of view; a steady increase in people employed by Kinark making over $100,000 since Rounthwaite’s involvement, with a lot of complaints coming in regarding the treatment of eligible families for services in which Kinark oversees (full disclosure my family is one of those).
What’s worse right now is that there seems to be a lack of enforcement by the Ministry of Children and Youth Services regarding their own “guidelines”. There seems to be a lack of legislation to hold these regional service providers in line with those guidelines and/or enforcement of these guidelines to ensure that families get the services they need. The most recent issue that has come up, is that those parents who received money for their kids for transitional services while they wait for the new autism program to be implemented are being misled by these service providers in thinking the best option for services is to spend that money with them, instead of properly informing parents of their choices and rights to seek treatment outside of these providers as per ministerial guidelines.
There is a huge push right now in the autism movement to provide all families with immediate funding for services to get the kids what they need now while they wait for the new program too roll out. By providing every family affected now with money to purchase services while they wait, it would be cheaper for the province in the long run, but also put the parents in charge of their kid’s therapies. However there is also a problem that has crept up with that as well outside of many not receiving the money.
The province during its announcement to give families the support they need, upped the amount of money they were giving families for DFO to $10,000 until the new autism program would be in place. It seems like kids over the age of 5 are not receiving the full amount (a proposal was sent to the Ministry of Children and Youth Services to fix the issue yesterday), and some due to administrative issues with regional providers are ineligible to receive anything. Allegations are also surfacing by those that have received the funding that the government is tying their hands on what type of support and intensity of therapy they can receive with this money.
So as we go further down the rabbit hole, there seems to be an upset in the balance of accountability and enforcement where these regional service providers are not providing the services to the kids that need them, misinforming parents, ignoring ministerial guidelines, and what looks to be quite the issue with overhead costs of these non-profit service providers, along with government tying the hands of parents who are looking outside these providers for services with money provided to these families by government until the new program rolls out.
Pile on the fact only a select few got this money to begin with in which that process for eligibility is in the hands of these providers; it becomes a sick and cruel joke on all families and kids affected by this “transition” that need support NOW! All this at the expense of Wynne trying to save a few bucks, while these regional providers run insane overhead with no accountability or enforcement under the Ministry of Children and Youth Services.
The plot thickens. Stay tuned…
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.
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:
(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.
(Ontario’s new autism policy lipstick on a pig, rather than implementing needed changes)
With the Ontario Government announcing major funding initiatives over the past few months, it looks like autism services are not high on its priority list. Back in March, the Ontario government announced that it was going to do away with much needed intensive therapy for autistic kids over the age of 5. That was later “back tracked” in June after parents of autistic kids held massive protests against the new policy claiming that #autistimdoesntendat5 and after experts came out strongly against Ontario’s move to eliminate intensive therapy for autistic kids over 5. It appears the Ontario government didn’t back track at all, and is refusing to put the needed money into funding intensive therapy for kids.
One of the main points for parents with autistic kids back in March was the elimination of Intensive Behavior Intervention therapy (IBI). The lack of intensity in autism therapy in the new program announced in March was a trigger point for the parent protests. From a policy perspective, intensive therapy is expensive. The government announced $333 million in March towards the new program topped up with another $200 million (only for those who are currently on wait lists, not those actively seeking to get on wait lists) to purchase therapy while this new program has been phased in. All of this sounds like a lot of money, but it isn’t even close in order to fund the intensity of the therapy needed which can run close to $60,000 per child per year.
Nothing has been “restored” as a result of parent’s protests. Instead what Wynne has done was re-package the old plan announced in March, and re-branded it to try and quell parental and public decent.
A month after the news that autism funding was going to be “restored” parents are starting to realize that they’ve been deceived. IBI therapy has still largely been cut from the new program meaning that intensity of therapy needed for many children will not be reached, and parents are starting to speak out:
“They are still delaying what our children need. Still cutting back the hours for the children who are already getting the services need.”
After the announcement last month which was lauded by all leaders of Ontario’s political parties as being a big win for democracy, I checked out the Ministry of Children and Youth Services only to find an exact carbon copy of the Government’s talking points on the program changes back in March. It very much seems that the government is not willing to put the needed investment into some of our most vulnerable, nor is making them a priority. This is not representative of the people of Ontario, and all our politicians need to take note rather than cheering for democracy, when the devil is in the details, and the lack of response this government has had on special needs constituents.