Kids With Autism Deserve Responsible Leadership

Kids With Autism Deserve Responsible Leadership
Posted on February 13, 2019 | Jason Koblovsky | Written on February 13, 2019
Letter type:
Blog Post

Author's Note:

Author's Note:

Authorized By: Jason Koblovsky

We are constituents of Caroline Mulroney. I have a son who is 14, who just started to receive autism therapy under the new Ontario Autism Program. The government's announcement last week on autism services will see my son lose his therapy. The government announced that for kids over the age of 6, they would be providing $55,000 lifetime amount for autism therapy. The Ford Government is only allowing families to use $5,000 of that per year, for therapy that costs $80,000/year.

After taking to social media in response to being snubbed by one of Mulroney's staff that went viral, Mulroney agreed to meet with our family. We explained to her that we've had a tremendous amount of difficulty obtaining the little support we have, because we were purposely left out of the loop on supports we qualified for. We had an outside consultant come in to assess our families needs in 2017, to find out that our case managers and NGOs were intentionally not telling us about services and supports we qualified for, which landed my family in crisis for years while waiting for this therapy. Prior to 2016 our family had significant difficulties in getting placed on the wait list for autism therapy despite several requests over a 6 year period to do so.

We had a significant period of time where our son was going through meltdowns almost every two hours. This included yelling, screaming, hitting, biting, and self-injury. He was sent home on occasion from school, because the behaviors got so bad. As a parent, this time of our lives was our own version of hell. Having to watch my child in such emotional distress, and not being able to comfort him and protect him and to tell him everything will be okay, was a really horrible thing to go through. Both my wife and I have suffered health wise as a result of this. We went through 3 long years of this consistently being told there's no intimidate help. We did put him on medications to try and get these behaviors down to something manageable. The medications did help "a little".

We finally got on the provincial wait list for therapy in August 2016, and we were one of the first families in York Region to enter the Ontario Autism Program in March 2018. We chose the direct funding option. What direct funding is, is essentially the government pays for the autism therapy through a private provider which is what the government is currently offering under its announcement for us to do expect at $5,000/year. Upon shopping around for a private provider, there isn't very many in York Region to choose from. Most of them are based in Richmond Hill, Markham which would be extremely difficult to get to. Only one of these providers would do in home therapy sessions, and we didn't feel this provider was a match for our family and the budget we were provided at the time. So we chose the direct service option, which is where the therapy is provided by provincially funded organizations. We started our therapy through direct service provider in August of 2018.

Since August we've had huge gains in communication and toileting which have been the priority. His aggressive and self-injury behaviors have decreased. Our next goal, which is now up an in the air is to get him communicating words. I've never heard my child say "Dad I love you". Under the governments current plan as announced, that will not happen. I will never hear those words from him. I'm also concerned about going back into our own personal hell again as a result of him losing a lot of what he has gained in 6 months. This therapy needs to be maintained and we haven’t received it for long enough that it he will hold on to what he’s learned let alone learn other skills such as talking. He's now much bigger, and it's going to be very difficult for us to care for him at home without this therapy.

All of the above was communicated to Mulroney in detail as I presented these issues to her. She listened and was taking notes. Based on our experience I presented the following concerns recommendations to her.

Concerns with Governments Approach:

- While I recognize that early intervention is important, those whom haven’t had that opportunity as a result of the significant lack of accountability in the prior system should not be thrown under the bus. The government has a responsibility under law to accommodate based on need, not age.

- $5,000/year under the announced changes for autism therapy will NOT meet our family’s needs nor be beneficial to our son

- Our son will regress without the intensity he is currently receiving under current therapy making it extremely difficult to care for him in home.

- There is a lack of private providers in York Region and across the province. The government’s current approach will clear the public wait list, only to put these kids on other wait lists with other private providers as a result of the lack of capacity. This will significantly impact kids in service now. Gains made in service will be lost, and this will defeat the government’s current objective to get these kids the help they need ASAP.

Policy Recommendations:

Crisis Management and Prevention

- In 2016 the people of Ontario sent a strong message to the Wynne Liberals and to all political parties to properly fund this therapy. Reducing that funding for this critical therapy was seen unethical then as it is now. The resolve of the tax payers around this hasn’t changed since 2016. Doug Ford promised he would continue to support autism families during the election by looking strait into the camera and saying he was behind all of us 1000%.

As such I would recommend for an immediate reinstatement of the Liberal Ontario Autism Program (OAP) which was worked on by families, experts, and in a by-partisan way from input by all political parties. Up and until Patrick Brown resigned, the PC party was committed to that plan. All three parties were committed to providing the necessary funding during the election to ensure that the OAP remained in place. (autism debates). You made a commitment to the tax payers to support us. Keep it! The OAP was not bankrupt, it was 3 months old when the election happened and it was waiting for commitments that your government made during the election to keep it up and running.

- Referrals to the OAP need to be electronic and done on the back end.

- For wait listed families. I recommend the government create a Rapid Response Crisis Intervention team (RRCI) that will be able to assist with the immediate needs of the family AT HOME and current future funding and in home supports, while waiting for the provincial ABA to kick in. This team should include an outside consultant to ensure that the family is being properly supported, as required under the provinces legal responsibilities. High risk kids, such as those with self-injurious and aggressive behaviors should be receiving immediate funding for in home supports/services regardless of age, until long term ABA support is secured.

- While there is definitely a need for more training of staff in schools, it should not be at the expense of FAMILY SUPPORTS. I am concerned that the education unions are using parent protests to position themselves ahead of families like mine, and the support we need in home. I would recommend that the priority going forward is on supporting families, however I do recognize the need for investments in education as well. I would also ask as part of this an immediate amendment to the education act REQUIRING the school boards to allow ABA into the classroom regardless of where that ABA is coming from. I am extremely concerned that without this amendment that ALL ABA treatment for school aged children will be disrupted, further putting families back into CRSIS!

- I also highly recommend the government set up a public committee to work in a transparent and bi-partisan way to address the problem of reducing the wait lists, and legislating meaningful accountability mechanisms rather than building a system of supports in the smoky back rooms of Queen’s Park. I believe strongly that stakeholder organizations and NGOs that refuse to make their comments public and on the record in a matter of public policy and within the public interest, should not be advising government at this time. The autism community on whole requested public transparency in the implementation committee for the OAP under the Liberals plan through the Ontario Autism Coalition which failed to produce results. Members of the implementation committee were tied to non-disclosure agreements, and the community received minutes of meetings sometimes months after these meetings took place.

- I would be happy to testify before such a committee as a parent who has lived the broken system of supports and provide further evidence of what we’ve had to deal with as a family when asking for help.

- Moving forward the government's approach needs to be sustainable and respects its legal obligations to autistic children and adults. We can not keep going through a system overhaul every few months, and putting families and their kids through crisis after crisis. Stop it. This is emotional exhausting and it’s talking its toll on everyone involved.

After the presentation was finished. Mulroney pointed out that my recommendation on the Rapid Response Crisis Intervention team, was very similar to something they are working on in their plan for autism services. The term she used was a "family navigator". This was also part of the liberal autism plan, but I stressed the need for this role to be expanded and meaningful to families moving forward.

I got the impression from Mulroney that as of now, they will not be going back to the plan under the Liberals. Mulroney made a commitment to not just our family, but also others in the same situation that no matter what system is set up and in place, that the government will ensure that it is properly accommodating families moving forward. Mulroney observed my son in an autism therapy session for a little bit.

At the end of the meeting, came something I did not expect and it was a very human moment. Mulroney came up to me, gave me a really big hug, and said to me "You're an excellent father, don't let anyone else tell you any different." I replied almost in tears "You're an awesome lady, don't let anyone else tell you any different." This to me alone suggested that we got through to her. It's very hard to explain to people who don't know what it's like living with autism or for that matter caring for a person who is disabled. All MPPs should take the time to observe these kids in home, in therapy and listen to all of our concerns. Mulroney also stated that she will be hand delivering our recommendations to Minister of Community and Social Services Lisa Macleod.

We made a commitment to working with Mulroney's office to ensure our family moving forward is properly accommodated. Mulroney stated that she is also meeting with several other families in the very near future to discuss their individual concerns as well. I'm cautiously optimistic, but I will not support any plan that puts any family into further crisis.

Whatever the answer is, it's going to require responsible leadership moving forward, and I have serious doubts of whether or not that's going to happen under Minister Macleod. I think Macleod has lost the public confidence on this issue, and she keeps trying to spin it around how great she is, rather than actually walking back a bit and listening to us parents. Recently Autism Ontario has distanced itself from MacLeod's plan, and rather than focusing on building a coalition to come together in building a plan that is supportive of our vulnerable kids, MacLeod is publicly threatening experts that do not come in support of it. That is not an example of responsible leadership.

About The Author

As a former consumer advocate, Jason has been a part of the development of Canada’s Net Neutrality Rules in consultation with the CRTC.  In 2012 he... More