The American with Disabilities Act (ADA) turned 32 years old last Tuesday. And, I turn 24 years old on this Tuesday. My entire life has been post-ADA. The ADA addressed some of the concerns like employment discrimination, access to buildings and more. There’s a long way to go though.
In Minnesota, I’m finding it all a perplexing complex system. The words “person-centered” are used a lot but feel meaningless to me. It feels like the systems, paternalistic rules, and “we’ve always done it this way” attitudes are holding me back from being truly independent. Person-centered only goes so far, if the funding and supports aren’t there to help make it a reality. I need to get this figured out so I can live my life.
So, here’s where I’m at with two of the main pieces that need to be in place so that I can live my own life.
Affordable, accessible apartment – almost???
- As you know, I found a wheelchair accessible apartment in Section 42 income-restricted apartment complex. It was a very long search to even find something remotely wheelchair accessible with a roll-in shower that was large enough to accommodate my needs.
- Still have that math problem I wrote about last spring. A housing voucher, supposed to be available to me through the Housing Stabilization Services, is still an ongoing back and forth between the Arc of MN, the St. Paul Housing Authority, HUD, and multiple reasonable accommodation letters from my doctor. I have been paying full rent since moving in last February. A housing voucher where I’d be able to pay a more affordable percentage of my income is a critical part of my independence. Without a housing voucher, I may have a difficult time remaining in the one wheelchair accessible apartment that I found in my very long search.
- What do I like about living in my own place? I’m close to the movies, live music venues, and grocery stores. I like going and buying my own food. I like living in an apartment building with lots of kids, families, young and old people. It was fun finding my own furniture and decorate my own space how I want it.
- What don’t I like? The worry, stress, and uncertainty around the housing voucher and finding enough staff to help me out.
- The union-negotiated salary for direct support staff just went up to $15.25/hour in July. Since I use Consumer-Directed Community Supports and am the employer for my support staff, I’m able to pay a little more than that, but still not enough to compete for staff in a very tight labor market with incredibly low unemployment rates.
- With that said, I still am not fully staffed so my parents are still helping out a lot. I’m heading home on most weekends. The staffing crisis is real. I have back-up support with my family, but for those who don’t, I can’t even imagine.
- A friend of mine has been struggling to find direct support staff. This friend has been living independently for most of his life and he is at risk of losing his independence and having to move to more restricted living. He does NOT want this. This is beyond scary and hard to imagine.
- Minnesota does not seem to be doing much to try to increase wages to a level where we can actually find caregivers or even helping find caregivers for those of us struggling to find help. Instead, all of us clients are left finding caregiver staff on our own. It’s all very frustrating and maddening and feels as if our politicians and agencies who could be trying to fix this, aren’t paying any attention.
A fun trip coming up
I wanted to end on a positive note and say I’m going east to DC, Baltimore, and Philadelphia this fall for just a regular, fun, explore the world vacation. Let’s just hope I don’t have any weird medical problems on the trip, before the trip or after. This has been known to happen in the past. I’ll give more details when I get closer. If I have any friends or followers from the area, let me know what stuff I absolutely need to see and do in the comments below!