Why SIL Housing Needs a Communication Overhaul

 I find the power dynamics in SIL (Supported Independent Living) houses challenging. I recognize that I have a lot of privileges, and I understand that there are things one must accept, but I was told these adjustments were short-term. To me, short-term means a couple of weeks to a month.

I wonder if people realize the effect this has on me or if I am simply complaining. This past weekend, I requested that people not come into the house, but a newer support worker who was working next door arrived. This worker didn’t know where things were and seemed to not understand that it’s my home. When I push back, it’s because I am reaching my limits.

This support worker and another client have behaviors of concern. I can understand someone coming over briefly to ask where things are, but I felt it was an excuse to come over rather than look for things themselves. This is one thing I find particularly frustrating: when I ask for things to be done and the response is to put earphones in because there is no long-term solution. I know they are constantly managing crises, but I think communication is lacking. I have given up trying to communicate beyond day-to-day matters with my housing agency. I know many people would love to be in my position, but I have noticed that in some agencies, "higher functioning" clients are often left to their own devices for various reasons, all of which are concerning:

1. The client is perceived to be a complainer.
2. Support staff don’t see the need for help, and if the client gets another agency involved, it’s seen as a privacy issue, but it’s actually an unapproved restrictive practice.
3. Support workers don’t have time.
4. Support staff don’t know how to support the client (they should ask them).
5. The support worker has favorites and works with them more.
6. The housing is set up in a way that they forget the client is home or can’t get downstairs.

It’s not a topic I like discussing as it affects a clear minority, but when I do speak up, I have to go through my support coordinator, who is on the verge of burnout, or my parents. This shows a lack of respect for my thoughts and an inclination to believe support workers over clients.

It’s my home, and although I have downstairs space, it feels like Grand Central Station when support staff haven’t shown up, and those who do the right thing feel like they are being pitted against each other.

I might just be tired, but it’s frustrating to be constantly labeled as a complainer when listening to us could reveal simple solutions to prevent long-term issues like support workers and client drift.

It’s important to realize the difference between complaining and having a valid reason. If you listen, you can solve so many issues at once. Higher functioning clients across agencies talk to one another, so it’s useless to try to control the flow of information—it’s going to happen.

I recognize that I am privileged and that I might feel like I am complaining, but who is going to talk about these issues if I don't? I am grateful for the support I receive and appreciate the people on the ground who work hard every day. The problem lies with management and their lack of communication, not with the support workers themselves.

Another issue is the lack of trust in support workers and the need to constantly monitor them. I know there are problematic workers and agencies, but if you can’t trust a support worker to do the right thing, why are you hiring them? You can’t teach common sense, yet it’s essential for support work and community nursing. Support isn’t for everyone, and we need to work together to find solutions. One solution is to work with families, not against them, and some agencies do this better than others.

We need complex solutions for a complex world and a return to person-centered care.