Living in Crisis with Autism in Ontario
I’ve wanted to write this blog for some time. I haven’t been strong enough to, and up and until now I didn’t think it was the right time to share this with each of you. It is deeply personal, but I feel that coming forward with this now will assist in shaping the discussion when we’re talking about families in crisis, mental health supports, disability supports and how to develop effective policy to ensure any public money earmarked for crisis prevention and supports is put to good use, and finds families that need it.
First let’s deal with the word “crisis”. A crisis can take many forms, and mean many different things to different people. If I wasn’t a parent of a disabled child or adult simply hearing “families in crisis” in media reports doesn’t really fit the definition of a crisis many of us face. It often means to the general public a sense of urgency to a problem. But what is the problem and how do we define a crisis? While I’m one voice of many in the disability community, this is what our crisis looked like.
Trouble began for us as a family in the spring of 2013 due to lack of supports, but ramped up in 2016. In 2016 the Liberal Government announced no autism support for kids over the age of 6. Prior to 2016 we had very little support available, just a case manager through York Support Services. My son was 11 in March of 2016. The school was reporting some pretty big swings in aggressive and self-injurious behaviors. At this time he was in a community classroom with an autism diagnosis from 2011. Up and until 2016 this classroom was suitable for him. I was stressed. I didn’t know what to do. We weren’t seeing these behaviors at home to the degree they were present at school. Every day, was another report of multiple meltdowns in class even taking close fisted swings at school staff which never happened at home. Even on bad days our son was never violent like this at home. But I did take the school at their word.
As an advocate for youth mental health in the past I often dealt with parents who advocated similar issues with their kids at the school level, only to find these cases land in court with several union lawyers trying to keep kids like this out of the school system. As a result of previous advocacy and the fact I was pretty much already burnt out from that, I choose not to take issue with the board and kept quiet for about a month and a half. Than June 2016 rolled around. The school started to send him home because he wasn’t controllable and was starting to become a danger to himself and staff.
By the end of the school year, he missed about a week of school in June due to behaviors. Which isn’t much compared to other situations, but I knew going into the next school year it was going to be a major problem. During this time we found out that Kinark Family Services did not put my son on any autism therapy wait list over years of contacting them since he was 6 and asking that we be put on the wait list. This is also the time when some parents were receiving pay outs from the Liberals that were lucky enough to be on the wait-list for therapy. The Liberal government at the time paid off families of children over 6. Due to the fact we were not on the wait-list to no fault of our own, we didn’t get any money for support at a time when that money would have made a significant difference in our lives, and kept us from falling into crisis.
We then sought help from board members and advocates through the Ontario Autism Coalition (OAC) only to be told that their only focus at the time were families who were paid off and receiving money by the Liberal Government. We were basically told we were on our own, and then harassed online by their board and members anytime I took issue on that. I was eventually banned from the group, and treated as an outcast.
To their detriment, this outcast is qualified enough and could have supported and helped a lot of other families in crisis in this organization had we ourselves been lifted up and supported by the membership. That didn’t happen. As a family we felt very alone during this time. No one understood our concerns and anytime I opened up about this through facebook support groups, I was followed by members of OAC asking admins of these support groups to ban me. I felt casted aside by the very people who claim to have my child’s best interest at heart and who were advocating directly to government officials during this time. I’m not the only one this group has attacked like this. There are many more.
Two weeks into July of 2016 we started to see a significant increase in temper tantrums and self-injurious behaviors at home with our son. Each episode lasting 3 hours often multiple times a day. By the end of August 2016, I was completely exhausted and concerned about the medical well-being of my son due to his self-injurious behaviors including biting down on his fingers and hands. He bit so hard he went right down to the ligaments in his hands. As a parent seeing your child hurt so much, and not being able to comfort him/her or even get the appropriate help goes against every instinct in your body as a parent you have. It is a horrible situation to see your child suffer and not be able to help. This is something that will be with me for the rest of my life.
Not only were we stressed, hurt, overwhelmed and anxious we took time we didn’t have to consult with the Liberal government on how we think the Ontario Autism Program should look like and share our experiences. All the while dealing with 3 hour melt downs multiple times a day. I didn’t want any family, child or parent to go through what we were going through again with the lack of supports and community engagement. I also ended up connecting with the Children’s Treatment Network here in York Region instead of Kinark to place us on the new Ontario Autism Program wait list towards the end of August 2016. I demanded electronic confirmation to ensure our request to be put on the wait list was recorded and was provided that.
In early September that year we approached the school suggesting that the classroom my son was in wasn’t suitable for him. We were lucky enough to have a teacher that cared for our son’s well-being, and helped us advocate to the board for school based behavioral therapy, and a complex needs designation. The teacher was successful in getting school based therapy involved. I also connected with our family doctor to inquire about community based supports and medications to help ease the anxiety and aggressive behaviors we were seeing with my son. I was told that very little supports exists outside of private supports, and school based supports would not assist behavioral support at home. We then were given a referral to a pediatrician for medications.
We were connected with a case manager through York Support Services Network which is in York Region. We had very little to work with in respect to respite funding. Due to my son’s behaviors his regular respite provider refused to take him due to concerns he may end up hurting her. Being in northern York-Region with no car it severely limited our respite options (it still does to this day). I had asked our case manager what options we have for in-home support and respite. We were told not many, and were put on a wait list of a year and a half for an outside “autism consultant” to come in and asses our support needs.
In November 2016 our son was put on anti-anxiety medications. It wasn’t until months later that we started to see a little bit of a decrease in meltdowns at home.
In February 2017 we had a case conference/IPRC meeting with our school board. I spent most of the holiday season in 2016, and most of January 2017 preparing my case to the board on getting my son properly supported at school, with the expectation that at some point lawyers would likely be involved.
So with no respite, exhausted, anxious, no support and now dealing with insomnia I had to act as my family’s legal counsel and prepare a legal case against our board complete with law and evidence collected both on my side and the school’s side. We were preparing to go to court. I had also done some research and found the Justice for Youth Network, who specialize in legal issues with school boards to whom I had monitor the situation and on the ready to jump in if I needed them. But my kung fu was strong enough where they were not needed.
Prior to me starting my presentation at the board’s case conference, the board’s psychologist scolded our case manager from York Support Services on the lack of respite, since it was apparent on both my face and my wife’s that we were at our wits end. The meeting wasn’t very productive. The teacher’s recommendations to place my son in a complex needs classroom were shrugged off. It’s at this point when I started quoting legislation and law that all of the boards staff up and walked out of the meeting. I was smart enough to have recorded this meeting in its entirety.
About a month later in March of 2017 I e-mailed the board’s representatives that were at this meeting and cc’d the Ministry of Education along with the press demanding my son be properly supported in school. I also attached a copy of the recording I made during the February case conference. Within days, the board’s staff agreed to a complex needs designation and with weeks we secured a placement in a complex needs classroom for the following school year without the need for a lawyer.
Exhausted, stressed, anxious and no idea how to quell the meltdowns at home still - we were down but not out. For the next 6 months after this the focus was on attempting to get what little respite my wife and I could. We had a good friend that assisted with that, but it was nowhere near enough to get the break we needed. The medications my son was on started to assist with shortening the length of the meltdowns. We noticed a little bit of a decrease, but the frequency was still there.
What further complicated things was that my family doctor was not sympathetic to my mental health. I know I needed help in coping with a lot of this and reminded him on every visit I needed help (and I mean every visit), and to which those calls for help were dismissed, and told no support outside of private support existed. We currently have a new family doctor.
November of 2017 rolls around. Our number was called for the autism consultant we were waiting for. We were then assessed and told that in our situation, our case manager should have identified supports we qualified for that we were not receiving. She believed the problem lied with our case manager at the time and York Support Services not putting through the needed paperwork. Once we found this out I requested a teleconference with our case manager and her manager with supporting letters and communication by this autism consultant to get an explanation.
During the teleconference I was told repeatedly to lower my voice and watch my tone by this manager, while I was going through yet another legal presentation explaining to yet another part of the support system their responsibility under their own mandate, along with constitutional and human rights arguments. I was brushed off as being an angry irate parent and had no resolution to our lack of supports by the end of the call. I had recorded the meeting. Not once did I raise my voice and not once in that conversation did I appear angry. Quite the opposite.
I again e-mailed the manager at York Support Services quoting law and legislation, basically repeating what I stated during the call and cc’d the appropriate ministry with the recording of the call attached. It wasn’t until after this that we started to get crisis funding. As a result of the laws that were broken by this manager I was able to “negotiate a settlement” with the ministry. The ministry was to provide full interim funding for needs based behaviour therapy within the next few months while we were waiting for our name to be called up on the Ontario Autism Program wait list to which they agreed and signed off on. Again without the assistance of a lawyer.
We were then moved to a different tier of support through intensive case management, but not before this manager at York Support Services I had a teleconference with a month prior, met with us in person to hand the file off, that on her way out the door, slapped her hands in front of myself, our new case manager and my wife and stated “I’m done with you.”
As recently as late 2018 I requested to the Ministry of Community and Social Services under MacLeod, that they do a full compliance audit on York Support Services to ensure they are properly following through with their mandate and legislation. The government believes no compliance audit is necessary since in our case they believe they’ve acted to correct the situation. To this day I’m consistently told by our current support network that there are significant issues at York Support Services denying people access to supports to which they are entitled to. York Support Services is the agency that also oversees Developmental Services Ontario (DSO) in York Region and is the agency responsible ensuring compliance of adult developmental services with legislation in York Region.
In fact while applying for supports for my disabled wife through DSO on the recommendation of York Support Services, we caught a government contractor red handed in 2014 falsifying reports to ensure my wife didn’t qualify for supports through DSO. I had to file a freedom of information request to obtain this government contractors assessment of my wife, to which called into question a proven genetic disorder based on a questionnaire I provided answers to which those answers were also misrepresented. The government’s response under MacLeod and on the record is that regardless of facts disputing DSO’s assessment they don’t see anything wrong with it. So my wife is still without supports, and I’m home full time until we reach the courts on this.
With the changes coming to ODSP, I’m confident in our legal position moving forward, but I’m gravely concerned about those who are not legally inclined who will have to advocate around this, meaning caregivers and the lack of support this is going to bring will be ultimately be shouldered by these very caregivers to which the Ford government are most likely going to attempt to force back to work. I’m very concerned this will leave a very huge support vacuum for our most vulnerable in this province and create a very serious crisis which will ultimately result in the loss of lives of some of our most vulnerable.
By February 2018 we were told our name was next in line for the Ontario Autism Program for my son and interim funding that was agreed upon would not be provided as a result. At this point in time I could care less, just give my son support and let us be, although I could have taken issue with it. In March of 2018 is when we started the assessment period, and started behavioral therapy through the Ontario Autism Program in August of 2018. Between August of 2018 and February 2019 we were finally out of crisis. My son’s behaviors significantly decreased. And then Lisa MacLeod happened.
As a result of the initial program cuts to the Ontario Autism Program by MacLeod our behavioral team ended up trying to cram as much behavioral therapy in as possible, which saw a significant increase in self injurious behaviors and meltdowns, and abundance amount of stress on both my wife and I, in fear we would have to go through yet another round of crisis and legal advocacy. It took a month and a half before our behaviour therapists could continue with behavioral therapy due to my son consistently hiding and not co-operating during sessions due to burn out, and the constant set of announcements from government that followed and not knowing what comes next for our therapy has taken yet another hit to my mental health, and has put us back into crisis mode.
Since all of this we’ve met with Caroline Mulroney (with very limited time on our hands and not a lot of patience left) in which we provided with this entire story. Her reaction to me was to state that I was a good father. This is the first time someone said this to me, throughout all the online abuse I took from OAC, to the ignorance I got from those in the system itself. It almost brought me to tears. I got a hug out of it, and I was told that all of this would make its way to MacLeod’s desk. I don’t believe it ever did. Mulroney’s staff has been pretty good with pointing me in the direction I need to go to get my own mental health support (although the little offered in the community is still not enough). I’m still suffering, but coping.
In my experience as an advocate, I’ve never seen such discontent and lack of oversight in those providing youth, family and disability supports. Prior to 2016 I never thought I would ever be on the receiving end of this. I trusted the system to take care of my family. I should have never done that, knowing the horror stories that came from other parents accessing supports in a number of areas. For some reason I felt this would never happen to us. I was too busy making waves and advocating for others rather than my own family. When it came time to apply the lessons learned from helping others to my own family, I was pretty burnt out and beaten up pretty badly as I shouldered a lot of the brunt though my advocacy in a number of different causes, so that others wouldn’t have to.
The system of supports itself requires a level of advocacy I only previously thought was necessary while appearing before regulators like CRTC with a bunch of Bay Street high paid lawyers, academics and MIT experts telling everyone I’m wrong and I will never be successful. Add on top that my family in crisis dealing with a child who is in such distress with no help available, along with my own mental health issues. For most this chess game is one sided and exhausting. Most don’t even know how to move the pieces, and the system as is expects that. There’s money there for crisis supports, but you have to fight like hell to get it, and that has to change especially for the caregivers of the disabled who have enough on our plates to begin with.
The Ford government’s response to all this has been to hold behavioral “workshops” for families in crisis, and as little as $5,000 to families in crisis who are waiting for behavioral supports. Not only is the province not fulfilling its obligations under the Canadian Health Act in my opinion, it’s also not fulfilling its legal obligations under international treaties in human rights our federal government has signed and ratified, but it’s also discriminating against people with other disabilities by only offering up crisis response to autism families on wait-lists.
So where’s the solution? When does this get fixed, and is this current government even aware of the problems in the current system around administration and accountability? As a family who relies on government supports we are subjected to forensic audits on a yearly basis. Why is this not the case with those that administer support services in this province? Isn’t that a form of discrimination itself?
Yes I agree that a crisis means different things to different people. If there is such a thing as an autism community or a wider more accepting disability community, than it’s up to us whom have been successful in advocating to share our stories, and lay our bricks for others to pick up and lay theirs. Advocacy isn’t about hitting a “home run” or being a “hero” or "saving the world". It’s laying bricks. Once enough bricks have been laid, then and only then will the system change. I hope with this blog, I’ve laid my brick.