The callous way the system breaks trust with families
By Louise Kinross
I wanted to write about a process of dehumanization that happens when you’re a parent of a disabled child.
It occurs more now that my son is an adult, but it’s part of the childhood journey as well.
It involves a callousness and disregard in how systems, often government, let families down.
Here’s an example. On Dec. 4, I picked up a voicemail and was told that my son was eligible for a case manager and this person needed to do a phone assessment with me.
I called back and agreed to do the assessment, which took about 45 minutes. We had previously done an almost four-hour, in person assessment with Developmental Services Ontario, but the person at this agency had no access to that information, so I had to start at ground zero.
I asked when we would hear from the case worker and was told this person had no idea. Apparently, a family does not deserve a timeline, or any accountability, on when a service will be provided.
On January 25, we still hadn’t heard anything, so I texted the agency person (thankfully I had her phone number). No reply. On February 8, I texted her again. No response until February 12, when she wrote: “Once a case manager is assigned, they will reach out to you.”
It has now been three months since she called. I’m wondering why this person was paid to do an assessment with me if there was no case manager available to work with my son?
It reminds me of the extensive, exhausting assessment we did with Developmental Services Ontario, in the sense that at the end of that hours-long process, the worker told me that there was no funding at that time for Passport, and she didn’t know when there would be.
We do now receive Passport funding and are incredibly grateful for it. However, we recently lost out on several years of an increase to our funding, because of the careless, unprofessional way in which we were notified of it, and lack of any follow up.
On July 1, 2022, my son’s funding was increased, but we were notified by just one e-mail to my husband, who works at The Globe and Mail, and receives hundreds of e-mails a day. My husband missed the e-mail. We received no hard copy by snail mail or other verbal communication to confirm the increase.
We use My Direct Plan to submit Passport invoices. This platform DOES NOT update funding increases automatically.
As a result, we had no idea we had an increase, and there was NO SAFEGUARD in the system to alert us.
Therefore, in 2022 we had an extra $3,000 of funding that we were unaware of; in 2023 an extra $4,000 we were unaware of; and in 2024, an extra $4,000 we were unaware of.
At no time during those three years did Passport communicate with us to confirm we had received their one e-mail about a funding increase. At no time did the system automatically update the funding amount in My Direct Plan.
In June of 2025, I contacted Passport to ask if we could get an increase in our funding. At this point I was told we had received an increase in 2022. I was stunned.
Had I not contacted Passport, we would not know to this day in 2026, that we had received an increase. We would still be operating within the old funding amount.
I asked if we could receive the funding retroactively and was told no. I was told we use My Direct Plan at our own risk, knowing it isn’t linked to the program so it can be updated. I was told we could submit old invoices. Of course, no family spends money that it doesn't have, so that they would have excess old invoices lying around.
I wrote to the government minister, our MPP and the agency that distributes Passport a week ago. I asked why they would operate a system with no internal safeguards to make sure recipients are aware of, and able to access, funding increases?
The system should be responsible for ensuring communication of increases has been received by the family, and for automatically updating it in My Direct Plan. The responsibility for updating the funding amount in My Direct Plan should not rest with a harried parent.
As expected, I have not heard back from anyone. This is probably one of the most effective ways of disempowering and silencing families. To not honour them with a response to a legitimate complaint.
Every time this happens, and it happens frequently, the parent feels a sense of outrage that so little respect is afforded her disabled child and family. And that leads to a sense of inadequacy and despair. Which makes it that much harder to keep on with all the demands of parenting your child and working to ensure they have a good life.
I am writing this as a record for all families who experience these repeated disappointments and insults, but who don’t have an avenue to share them. I see you.
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