Posts Tagged Autism cuts
(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
As many of you may remember I wrote an open letter to the Ontario Minister of Children and Youth Services Micheal Coteau regarding some concerns I had with the transition process, and with my son’s situation. I was hoping for a direct response from Minister Coteau instead I received this (sorry for the chicken scratch, this is the number of the individual from the ministry that wrote this letter. I was hung up on 3 times by the contact they gave me before I got to the program manager):
For a Minister willing to meet with parents, Coteau seems extremely illusive to direct communication with those who are trying to reach him. Apparently we’re getting busy signals. As for my sons situation, apparently IBI still ends at 5 accounting to Cantkier, and she is unwilling to budge on giving my son the appropriate therapy he has been recommended by specialists and other medical professionals. More soon.
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…
(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.