Turning point? – Observations From Below

Ever since it started, one of the primary goals of the disability rights movement has been to have individuals with disabilities live as independently as possible with the appropriate support. That means the aid of assistive technology or someone coming into the home to help with basic daily living needs. Or both.

In my other role with Solutions for Independence, we have been working with two of our consumers so they can experience that dream for themselves. Unfortunately, it is tough to expand that dream to everybody due to the length of the waiting list. The official term for that list about the multitude of programs we rely on for assistance is the Registry of Unmet Needs.

Good news and bad news.

I’ll start with the bad news first. These waiting lists have been around since even before I started my advocacy work. For example, when I first got on the Innovations program, which enables me to attain help in my house, I had to wait several years before that came to fruition. Even though I was lucky enough to have support from my family during my mom’s fight to get me those services (including assistive technology), I had to wait several years. Thankfully, that was so long ago for me that I don’t remember my life without having my services coming into my house to help with what I needed.

Many other people aren’t so lucky. The average wait time is about ten years. And if you were to get on the list today, there would be about 15,000 people ahead of you (that’s just North Carolina alone).

The good news is that there’s finally an effort to start addressing some of these challenges on multiple fronts. NC is working on developing an Olmstead Plan. Olmstead is like the Brown vs. Board of Education but applied to the disability community. It means people like me should get the services in the community that we need. As opposed to being in a large institution, like a group home/hospital/intermediate care facility.

I am honored to be part of the Olmstead Stakeholder Advisory Group for NC. For several months, we have been meeting to provide input to the state as they develop their official plan. So far, it seems that most of the people seem enthused and engaged constructively in the process. However, it’s going to be up to our elective representatives to determine what happens. Ultimately, it comes down as it always does: to funding.

I will be watching our representatives see where they decide to put their priorities. In the past, many other disability advocates and I have seen an institutional bias. That means that more money is given to those group homes and facilities rather than to programs that support hiring people to assist individuals in living in the community of their choice.

That leaves another big challenge. To live in the community, there’s needs to be affordable housing. Just like the larger community, there is a lack of affordable options for people with disabilities. I’m just now getting into that realm that I’m working for Solutions for Independence, but I do not have all the solutions. We do have the ability to refer people to a housing program called the Target Unit Program. But yet again, there’s a 3-5 year waiting list, depending on where you are trying to live and the options available. And that’s another 8,000-person list.

We are at an inflection point. Suppose the state chooses to embrace the Olmstead planning process fully and puts the money behind it. We can begin solving both issues at the same time, as they are both tied to Olmstead. If our legislators do not take the opportunity to follow our advice, our entire system is in deep trouble.

We will have to see which direction we go.

That’s how I roll.