We’re on the brink of some real and devastating research that’s been done regarding how bad of an impact COVID 19 had on people with disabilities and their families. Living through this pandemic and through my own lived experiences over the past year and a half as a caregiver of an autistic child; those tasked with supporting not just autistic children, but the disabled in general were very reluctant to adapt to situations on the ground or even recognize the situation unfolding with vulnerable populations during COVID. Some of this had deadly consequences for many families.
A lot of the research that’s coming out is grim, and researchers are looking at ways of making this research public in a compassionate way. This research must surface for people with disabilities and law makers to understand the flaws in the system and to make it better going forward. It’s going to be a tough learning moment for all of us families effected by a disability. Right now, in the disability community there’s a lot of anger, resentment and sadness because of being forgotten. A lot of the research coming out will help to justify those emotions, but we as community need to band together and support one another through the next few months. There’s a lot of blame to go around, but we need to try and move past the emotions and work together to make this a better moment for all.
Many individuals and families effected by a disability were basically left to fend for themselves throughout the pandemic. Many support agencies shut down, rather than adapting to situations on the ground. Many of the regional autism providers stopped offering support to families completely. Mistakes were made from all levels of government to adapt and properly support families and individuals with disabilities during COVID and direct those on the front lines, including offering up appropriate mental health supports to not just people with disabilities but caregivers as well. This is all going to come to bare with actual data over the next several months.
The Ontario Government has responded in part to a growing mental health crisis in the disability community with an app, rather than a voice on the other end of the line. It’s patronizing and ignorant to many who couldn’t even afford food on the table, let alone protective measures to keep them safe, to offer a phone app in response to the trauma these people have been through as a result of inaction by decision makers. You can’t treat post traumatic stress disorder with an app.
On the caregiver/parent side some support agencies have started offering “workshops” to caregivers to learn how to detect caregiver burnout. As if we didn’t know as caregivers what burnout is after what we’ve all been through because of the lack of support during COVID. It’s very patronizing as a caregiver to see front line support organizations offer up workshops on how to detect burnout when ALL of us were going through this during the pandemic. I think by now the vast majority got a real-life lesson on what burnout is. We don’t need to know how to detect burnout, moreover we need one to one support to help us cope with coming out of the pandemic.
It’s as if these people on the front lines weren’t paying any attention to the very serious mental health crisis that was unfolding with us caregivers/parents during COVID. As a caregiver during the pandemic I was expected by the system to be my son’s teacher, ABA therapist, occupational therapist, speech language pathologist let alone the extra task of being the only one in my household to go out for supplies, cooking, make sure cleaning was done properly, and having a tremendous amount of anxiety because I was in the high-risk category for serious illness had I picked up COVID. It was too much for me to handle. I needed not just a break but understanding of our situation from those on the front lines and I wasn’t afforded any.
There were pleas I made to our case manager at the time during COVID for help and someone to talk to that were ignored. Rather our case manager went into secret meetings with my son’s support team without my authorization because she was concerned about my stress levels. Not once did she voice those concerns about my stress levels directly to me, and not once did she offer up any immediate mental health supports to me like calling 310-COPE. Not once did she connect with mental health experts to look at applicable resources to send over to me. And we’re talking about the highest level of case management support in the province for families with complex needs children, on top of her being an expert in behavioural management. Her focus wasn’t on me.
I even quoted some preliminary legal research I had did to advocate for a break on my own behalf (which is absurd I actually had to go into legal mode for this), in which the Ontario Superior Court of Justice overwhelmingly sided with high-risk individuals when seeking accommodations throughout the pandemic. That research was passed on to management at the Children’s Treatment Network and Kinark by our case manager. This research was entered into my son’s record. Both of these organizations responded to this (along with repeated requests from me to put some services on hold until I was able to cope) by threatening to totally withdraw those services rather than pause them. This would mean my son would have been completely withdrawn from school, the Ontario Autism Program, case management, and we would have to reapply for most services which meant after I could cope and re-engaged, we would be put on a wait list, and my son would have aged out of any meaningful supports as a result.
Then children’s aid was called for the specific reason (very clearly spelled out in our records) of me asking for school, ABA etc. services to be put on hold temporarily. I was basically spanked for asking for a break despite quoting what the courts were saying. I wasn’t taken seriously at all. It took a complaint into the Ministry and a legal threat to have them comply with pausing my sons’ services, to give me a chance to breathe.
Another thing that weighed very heavily on my mind during COVID – what would have happened to my son if I got sick with COVID? I’m the sole caregiver, and had I contracted COVID I would have most likely ended up in the ICU because of underlying health conditions. Who would take care of him? There was no planning by government health officials, nor support organizations on the front lines during covid on this very issue. No answers were provided to repeated questions I had on this very topic including from several parents with similar concerns to lawmakers and support organizations during the pandemic.
What I’m trying to explain here is that through lived experiences and listening to other parents and people with disabilities during the pandemic, there was a tremendous amount of ignorance displayed by support organizations and government officials as to what the situation was on the ground with the disabled and their families during COVID, and recognizing what supports were needed. It wasn’t just the catastrophic situation we saw unfold in Ontario with long-term care, the same lack of response was happening system wide. We saw a lack of leadership from the province to adapt, so why in a leadership vacuum did the vast majority of those on the front lines in disability supports not step up, adapt, and help support individuals with disabilities and families on the ground in a meaningful way?
A new study was released in July suggesting that adults with intellectual disables such as autism had a much higher rate of death from COVID 19 that others:
The study, published online by Disability and Health Journal in late July, also looked specifically at outcomes for adults with Down syndrome (one of the diagnoses included in the IDD group, alongside other chromosomal anomalies, intellectual disability, fetal alcohol syndrome and autism spectrum disorder). It found a rate of COVID-19 death more than 6.5 times higher than that seen in adults without IDD, as well as a 3.6 times higher likelihood of hospitalization, after testing positive.
This study focused more on underlying health conditions people with intellectual disabilities have rather than addressed the impact of the lack of support and access to the vaccine – especially in Ontario throughout the pandemic. In Ontario the province’s vaccine roll out created a huge bottle neck, and lack of accessibility to the vaccine to vulnerable populations who were without any supports. Supports in teaching and supporting a lot of these individuals to keep them safe and follow public health guidelines during COVID were also very much missing from both the federal and provincial health officials. Support organizations were basically not even a factor for many during COVID because of government lock downs and inability to adapt to real time situations on the ground. Taxpayers pay a huge amount of money to executives of these support agencies to make real time decisions on the ground for support, given a significant amount of discretionary funds, and most of these agencies were missing in action. We need to know why that was?
Part of the reason is the lack of public oversight and public funds to agencies tasked with providing support on the front lines. I’ve recently wrote two blogs on this. I’ve been following this situation since 2016. Law makers are aware of the significant issues on the ground, and lack of support being provided by top heavy organizations with not enough applicable and relevant support being offered on the ground. I think what we’re going to find out in the weeks and months to come as the data becomes available is just how devastating inaction has been on people with disabilities and their families during the pandemic.
The one thing COVID did was exacerbate serious flaws in the system that had already existed. I would seriously hope that organizations tasked with supporting individuals with disabilities and their families take a very close and real time look as to where we all are coming out of this pandemic. I think the focus and priority should be assisting with one-to-one mental health supports, and transitioning out of the pandemic for many individuals and families. This is going to be a critical time for families and individuals with disabilities and there’s a lot of anger because of the desperation many went through due to ignorance, inaction, and intolerance from high levels of government, and those in the board rooms of many support organizations.
While there’s a lot of anger, a lot of blame to be spread around, and a lot of dark days ahead as we learn just how bad the system has failed, we as a community have an opportunity to shine through the darkness. The disabled shouldn’t be treated as a file number, a line in the accounting books, or a charitable donation. We are human beings. Let’s figure out creative ways to shine through and help make positive change. Nothing about us, without us! Your voice matters!