Posts Tagged Autism Commentary
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.
This blog will be dedicated moving forward to following the conversations and policy discussions about Ontario’s new autism policy. The discussions going on right now are a national ethical and moral issue and those across Canada should be kept up to date as much as possible. On Tuesday there was a very emotional rally at our provincial legislature Ontario Queens Park by parents of autistic kids:
Two really good shows Wednesday on CFRB 1010 in Toronto discussing the protest and policy. The first commentary on the autism story gripping Ontario comes from the Beyond The Mic show hosted by Mike Bullard. Comments start at 4:45:
The second one was is from CFRB’s Live Drive show. Ontario Premier Kathleen Wynne was on the show for a one on one follow up interview and she is digging in her heals on the new Autism policy. My comments were aired at 18:41 with an excellent discussion on them after by the hosts:
(Ontario’s Minister of Children and Youth Services Tracy MacCharles Feeling The Heat On New Autism Policy)
The Ontario Association for Behaviour Analysis (ONTABA) issued a scathing letter to Tracy MacCharles who is Ontario’s Minister of Children and Youth Services over the latest policy to strip intensive behavioural therapy from thousands of Ontario kids over 5. ONTABA is an organization representing Ontario’s behaviour experts, and these are the experts that Ontario would be relying on heavily in their new policy.
During questioning at the Ontario legislature last week on the new autism policy to strip kids over 5 of intensive behavioral therapy, MacCharles heavily relied on a government panel of “hand picked experts” to reaffirm the position of the Ontario government regarding changes to autism services. It appears the real experts in behavioural analysis don’t agree with the 2013 consultation findings that lead to this new policy change. The ONTABA was neither consulted nor invited to take part of the initial consultation and has put the report delivered to the legislature by the government’s expert panel into question. In the letter to Minster MacCharles ONTABA asked for “clarification” on 5 key points. One of those points the ONTABA stressed inconsistencies of the panel’s research:
Our concern stems from the fact that unfortunately, many of the reviews and meta-analyses cited in the January 2014 report titled Autism Spectrum Disorder in Ontario 2013 conflate studies of ABA interventions with studies of other intervention models that are sometimes described as “behavioural” or “based on ABA” but do not have the well-established defining characteristics of ABA or comparable supporting evidence. Although there is some published, peer-reviewed research on these packaged, mixed-method early intervention programs for young children with ASD (such as the Early Start Denver Model), there are many more studies demonstrating the efficacy of highly individualized intensive, comprehensive ABA interventions that are designed and overseen by professionals with documented training and competence in behaviour analysis (see Eldevik et al., 2009 and 2010 for meta-analyses of multiple published studies of genuine early intensive ABA). Further, unlike other early intervention models, the wide array of procedures for building functional skills and decreasing problem behaviours that comprise intensive, comprehensive ABA intervention have been evaluated in many hundreds of scientific studies. This supporting research does not appear to have been considered in the January 2014 report.
The letter goes on to state:
ONTABA members urge the Ministry to enlist expert behaviour analysts to assist in reviewing the published scientific research on ABA interventions separately from the research on developmental and mixed-method intervention models. Behaviour analysts are ethically obligated to use and recommend interventions that have proved most effective in scientific research and are eager to serve as a resource.
Only a very “small subset” of individuals “self-identified” themselves as behavior experts in the committee report presented to the legislature in 2014. I’ve watched and commented on a large amount of committees and expert panels at the federal level on different issues and unrelated topics in my time. The exclusion of ONTABA from any consultation process considering the recent changes in policy will rely heavily on their members is a fact I find extremely interesting. The exclusion of the Ontario Autism Coalition who has a very high profile background on bringing parents’ concerns to the legislature (regarding the system in place now) from the consultation process is yet another fact I find extremely interesting.
ONTABA in its letter also urged the government to act immediately to develop support in the school system for those who have been on the wait-list for intensive behaviour therapy. ONTABA stated:
One of the immediate implications of the plan to transition children five and above who are on the waitlist or who are currently receiving IBI to different service options is an increase in the number of children with ASD who will be entering the school system over the next 6-12 months. Further, as the changes to the Ontario Autism Program are expected to roll out over several years, these children (many of whom have been waiting for, or recently started receiving, evidence-based behavioural services) may not have immediate access to appropriately individualized, effective behavioural service options. Our membership and stakeholders are concerned about the potential effects of these changes on children and their families. ONTABA advocates for an approach that is consistent with our ethical obligation to protect the best interests of our clients.
I would also add to this statement that school boards and the ministry of education do not have a very good track record when it comes to money being allocated for social programs or accounting for the money used in those programs. I have a blog forthcoming on that very issue. There may be a strong need here to set up a watchdog to keep track of the programs in the schools independent from the ministry and the legislature to ensure that kids who need behavioral based services are actively getting it in the schools, and that the level of service remains constant throughout different regions of the province and through different school boards. A point echoed by the ONTABA to some extent when requesting that ABA services be regulated:
In light of the plan to invest significant efforts and money in improving and expanding the Ontario Autism Program, we believe it is critical to initiate appropriate regulation of practitioners of ABA in the province as soon as possible. In order to protect the public, build capacity, and ensure that all consumers have access to ABA services delivered and overseen by qualified providers, it is essential to set standards that are consistent with the Behavior Analyst Certification Board credentialing requirements as well as recommendations from the 2015 SEG report commissioned by MCYS and stakeholders surveyed for the Autism Spectrum Disorder in Ontario 2013 report. ONTABA is eager to work with MCYS on this process.
Speaking as a parent with an autistic son; it takes a small village to raise a child. It takes a small army to raise a child with autism in the current system. Parents are constantly fighting the system; fighting to get on wait lists, fighting to get the right specialists involved, fighting to get a case worker to navigate the system, fighting for funding, navigating through an enormous amount of red tape, even fighting to get a small break once in a while. It’s not easy, and sometimes exhausting and extremely frustrating. This is a system that isn’t set up to be user friendly. Many like me have sacrificed a career, money, and style of living to dedicate themselves to the care of their kids and family. The people of Ontario are owed an explanation as to why a proper consultation process wasn’t commenced with these recent policy changes to begin with.
The system has been in need of desperate repair for a long time. Premier Wynne ran on fixing this system in the last election. Shouldn’t the most effective way at fixing the system include ALL stakeholders in an open consultation process, and a balanced approach put forth on policy as a result of scientific evidence and user feedback?
The Wynne government doesn’t seem to have attempted this to the extent its needed judging from the outrage the recent policy announcement has caused, and now experts are refuting the government’s own reports as a result. Whether the exclusion of such a balanced approach to policy in this case was intentional or just plain carelessness is something I will leave it to you too judge. For those using the system however, it is not fair to families dealing with autism to put forth policy that puts us all in a position of fighting yet again to get the services our kids need. It shouldn’t be a battle to get the government on our side as a result of the problems we face in the current system. We have enough to worry about regarding the care of our children. We need a government in place that understands our side of the system and the problems within it, rather than one that makes a mockery of the challenges this system faces thus sets a pretty good example to tax payers of what we all have to deal with as parents who care for autistic kids.
It’s not just the policy that needs to change, it’s the culture around autism our policy makers have that needs to change. Only then can we develop meaningful, sustainable, and reliable systems of support inclusive to all age groups who are on the autism spectrum. I would hope that all stakeholders commit to a more open consultation process to discuss the problems this system faces in the near future. Anything less would be a great disservice to the most vulnerable this system is set up to support and to the tax payers of this province.
(Ontario Premier Kathleen Wynne’s Decisions on Autism Services Politics Not Evidence Based Experts Say)
There has been very strong reaction to Kathleen Wynne’s decision to de-fund therapy for kids with Autism, from experts to advocates to politicians. Wynne looks to have picked a fight with the wrong crowd, and there are developments that the situation is getting even worse for the families affected.
In the 2014 budget, the first thing the Wynne government did after being re-elected was to increase funding for respite support for parents under a program called Special Services At Home (SSAH) to help give parents who have kids with a disability a break, or to hire private in home support when needed. Service providers were sent a memo last year by the Ministry of Youth and Child Services letting them know that clients should be applying for this money, and those that are already receiving should apply for an increase if their situation has changed.
The new money for SSAH should have kicked in starting this month and instead I’ve heard from several parents who are new applicants and qualify for this support money still waiting for approval or being actively denied. So far all those who have applied for an increase have not received a dime more than they usually get with no reason as to why they were denied the increase.
It’s looking very much like Wynne did a bait and switch during the last election by promising to fix the issues with a system in crisis to get votes, than back track on those promises and put a system that’s already in crisis to the point of near collapse.
Three experts appeared on CFRB 1010’s Nightside Talk Show last night to denounce Wynne’s recent decision to cut funding for IBI therapy for kids over 5 calling the move not based on scientific expert opinion. A clip of the show can be found here:
Political reaction at Queens Park is being led by the NDP:
This blog will be following developments as they occur.