I have mental health diagnoses and chronically damaged legs. Despite these challenges, I have my own apartment and a steady part-time job. In my experience, this is not the reality for everyone with these challenges. This unpleasant reality is not widely known. Therefore, without further ado, I will try to shed some light on the subject. Clarity can be helpful. Ideally, you will find my perspective helpful and enlightening.
As you, the reader, may or may not know, Minnesota offers many different mental health programs. I only have personal experience with residential use, so that will be my focus. The residential program I lived in for four years included mental health services, counselors, nutrition staff, nurses, and activity staff. In my experience, program staff struggle to communicate clearly with residents and resolve issues independently. Traditionally, there were 40 residents living in the program, and residents traditionally paid for everything using a county-funded waiver. Our building was broken into multiple times and the only expectation my fellow residents and I had was to participate in a welfare check every 24 hours. Other government funded services I have used have had similar problems.
The state funded waiver I have access to has in the past funded my access to housing and also given me access to other services. For a long time I used it to access Independent Living Skills (ILS) services. In my experience, the ILS staff I was assigned to also had trouble communicating clearly and solving problems independently. Another major problem was that the service had problems with staff turnover. A problem that unfortunately also plagued the housing program I lived in. Thanks to my refusal, I also had access to transportation services.
In my experience, some transportation services designed for people with disabilities are more reliable than others. All of them have had turnover problems. In addition, drivers for some of the services have chosen not to wear seat belts. With that said, in my experience, transportation services have not had as many challenges as residential or ILS services. Interestingly, all three types of services have one thing in common. They need more supervision.
I tried to advocate for more oversight of mental health programs. Advocacy organizations that can affect policy change believe that Minnesota’s current mental health system is working. Its sole focus is getting more funding to grow what already exists. Unfortunately, that means customers have to advocate for themselves. I say sad because in my personal experience many of my fellow clients are unable to do this due to their mental health challenges. I have personally witnessed vendors using this challenge in many cases. There’s a name for that. It’s called a customer-driven approach.
In a customer-driven philosophy, the customer can direct their services. On paper, this might sound like a good idea. If clients’ mental health challenges create significant barriers, they should reach out to their providers for guidance. In my experience, this loophole has allowed housing program and ILS program staff to remain employed despite significant challenges. In other words, they were legally allowed to run their programs as an experiment funded by taxes and donations, without checks and balances. Based on some quick research, these experiments remain active.
I mentioned checks and balances in the previous paragraph. Different people have different views on regulatory oversight. This variation is the solution. Throughout this story I have shared my experience as a customer of various services. Vendors have a different perspective, as do local citizens. In my experience, the problem is that customers need a voice.
If the board of directors of the programs funding the services lacks client representation, it depends on hearing from the people running the program. As I mentioned, the program staff has a lot of power because of the client-driven pass. People working in these programs could tell board members, taxpayers, or donors that things aren’t working. However, the rulers have no incentive to give up all their power. The good news is that there are state traffic laws that make supportive transportation safer. I understand that this is lacking in mental health programs and/or other waiver-funded services. Unfortunately, this will remain the case until regulatory oversight designed to create transparency and protect the vulnerable adults who use these services is put in place and enforced.