Planning Meetings, Support, and Advocacy: The Reality of Being Heard

Hey all, 

I had a planning meeting today with my Support Coordinator (SC) and some people in my personal life. It went well, aside from a moment when they asked about how much toilet paper I had since they were doing a Costco run. I'm considering getting my own membership, but I’m grateful for the support they offer. Many people with disabilities don’t have the benefit of informal supports—those who back you up, help you destress, and give you the option to either collaborate or have alone time. Paid support is important, but we must remember that it's a job for them at the end of the day. They're paid to be kind and to care.

I feel incredibly blessed to have supportive people in my life. It's a big deal—having a child with a disability, who inevitably becomes an adult with a disability. While some may have low support needs, it’s rare for someone to simply grow out of their disability. It can happen, but it’s not common. Having a disabled child, alongside other siblings, can sometimes lead to family dysfunction.

At today’s meeting, a comment came up about someone becoming friends with the CEO of a service provider. This person has worked hard to build a good quality service, but she’s encountering issues she didn’t foresee. Low-support-needs clients often don’t speak up. This reminded me of an incident that led to a previous post I wrote about good and bad support. A support worker, related to management, baited me into sharing my honest thoughts about her. It didn’t go well. She couldn’t separate the fact that she got the job due to her family connection, which isn’t necessarily a bad thing—but, in my view, she’s not suited for support work. I was left on my own while she was on duty, as her style of support matched my ex-housemate's needs. When I finally lost my temper, I was made to feel like the problem because yelling was out of character for me. 

This kind of situation happens all the time—people are scared to speak up because they believe they’ll be penalized. But we need to speak up. You might be the only one to spot an issue that others have missed.

Recently, I had a medical episode where I got dizzy and called for help. The staff member claimed she didn’t hear me and suggested I get a whistle. My SC and others in my personal life advised me against it, reminding me that staff are supposed to conduct visual checks. It’s unsettling that this person admitted to avoiding coming down to check on me. While I value my space, I also need low-level support, and this requires reminding my housing team that I’m still here. 

I’m requesting that this staff member be removed from my roster because this is a safety issue. This isn’t just a personal problem—it’s a recurring issue across many providers. The simple solution? Well-trained staff who can communicate effectively and believe clients when they report a problem. 

Providers often seem more interested in protecting their agencies than addressing real issues. But if they provide well-trained, ethical staff, they won’t have to worry about protecting their image. In my housing situation, a manager was recently let go, not for what she did, but for what she didn’t do—neglecting critical issues like lease agreements, care plans, and staff rostering. Meanwhile, smaller things like bills were being obsessively monitored. There was no consistency in the quality of support from staff, and it’s troubling that no one raised alarms when clients stopped speaking up.

So how do we fix this? Simple. Believe clients when they speak up. New clients are often the first to notice issues. Providers claim there’s no easy answer, but there is: establish clear lines of communication, offer alternative points of contact, and allow clients to submit concerns in writing without fear of retaliation.

I’m now advocating for clients to document everything—it protects you. Providers may try to ignore issues, but documented evidence can make all the difference.