Houston, We Have a Problem
I fully believe in disability rights and community inclusion for people with disabilities to the fullest extent possible. My mother ensured I was included along with my peers throughout my education. This is typically called mainstreaming. I’ve succeeded because I’ve been included in the community in many ways. I was in the National Junior Honor Society in middle school and then the National Honor Society in high school. I graduated from Guilford College with high honors, a 3.88 GPA, and many scholarships.
Since that time, I’ve served the disability community in North Carolina in many high leadership positions. I was a chairman of the Board of Disability Rights North Carolina. I’m currently Chairman of the North Carolina Council on Developmental Disabilities and the Co-Chair of the North Carolina Olmstead Plan Stake Holder Advisory Committee
Olmstead vs. L.C. and E.W. is often called the Brown vs. the Board of Education, but for people with disabilities. It’s a Supreme Court opinion written by Justice Ginsberg, which says that unnecessary institutionalization goes against the ADA and it’s a form of discrimination. The unfortunate thing is that this decision came down in 1999. Every state was supposed to put together a plan to address the issues. North Carolina has tried three times, and I’m the Co-Chair of the 3rd attempt. Maybe the third time’s the charm.
I have been able to do all these things because I’ve had community-based services for most of my life. And I’m here to tell you we have a big problem. Even if you have services, as I do, there are not enough people willing to help. For those who don’t know, people like me rely on Direct Support Professionals
According to ANCOR, the American Network of Community Resources, the direct support workforce is getting smaller and smaller. I am down to one direct support provider, and he routinely works what would be two shifts, from about eight in the morning when I go to work at Solutions for Independence to about eight o’clock at night. He works with me through both programs that I access. One is a Medicaid waiver program called Innovations in North Carolina, and the other is through the Department of Vocational Rehabilitation.
I am profoundly lucky to have both programs, enabling me to stay in the community of my choice. Many of my fellow citizens are not as fortunate. There are over 15,000 people on the waiting list for Innovations, and the list grows every year, even as the State slowly provides funding for more people to get services. That’s not nearly enough to make a dent in the huge waiting list. The average wait time is 9 ½ years. On paper, as I said earlier, I’m lucky. However, as the past month has shown me, I need more than one DSP. I’ve been trying to hire someone for months. No one has applied, and there’s no end in sight.
This puts a ton of pressure on my family and the one DSP I have. My grandparents do most of my care on the weekends and some during the week now. It’s getting harder and harder for them to help. Like anybody, they’re aging. My DSP also works as a runner, providing background support for concerts.
He can make more money as a runner working concerts than a DSP, and the job is often easier because they don’t need him constantly. I don’t blame him, but that leaves a gap in my support.
I often have to do less work on those days. One thing Dave does is help me communicate with my consumers. I work in disability rights, so my bosses have been highly flexible and supportive. But I’d rather be working.
My whole job is to keep people in the community that they choose. Ironically, I’m having huge trouble finding the support to do that myself. It’s sad, but the State funds institutions far better than community services. Just about every state in the Union funds institutions better than community services. In 2009, a study of the difference in price between institutions and community services revealed that it costs $188,000 compared to about $42,000 to provide similar services in people’s homes. Yet our country decides to institutionalize, and direct support providers earn more there for doing the same work. As a country, we must address the problem. It’s not just the disability community. It’s also the elderly population that struggles to find support to stay in their homes. I know because I go to those meetings for work, and many of them have the same fears and frustrations.
I will close with good news/bad news. The good news is many people know this is an issue. Earlier this year, the legislature passed a bill to raise the wages of DSPs. But from what I’m hearing, many people didn’t see a rise as the government intended. A lot of the raise was taken up by inflation. The Council on Developmental Disabilities has a current initiative to address this issue. My organization is becoming more involved on the local level.
The bad news is that all these projects will take time. It’s hard to know that when you’re in a crisis like I am.
That’s how I roll.