Frontline Initiative: DSPs Respond to COVID-19

Being a direct support professional (DPS) is a commitment. DSPs help me be visible in my community rather than invisible and waiting for things to happen. I’m in control of what happens with my life and if I can help others through my experience, I will.

Debbie has been my most consistent DSP, and my jack-of-all-trades. We’ve actually known each other for 20 years. We met in self-advocacy circles, and she later became my DSP. It was an easy transition. She just needed to get used to me as a person who needed different kinds of help. Without her, I wouldn’t be here today. She helps me do the advocacy that I do for everyone. Advocacy is a team effort.

Unfortunately, the system doesn’t always work, and my number of DSPs has fluctuated during COVID-19. I’m supposed to receive DSP services twice a day, but I haven’t received that in two years. I even have to sleep in my wheelchair because I don’t have enough support. My DSPs make less money than those who work for people using New York’s self-determination program. [Self-direction is a way of providing services that gives people with developmental disabilities increased choice and control over their lives. With self-directed services, individuals have the authority to hire, manage, and dismiss workers, and they have a flexible budget to buy the supports and services they need to live in the community.] There are two different funding streams for DSPs, and we all live in silos. Got to love those silos! If I could give my two cents, which I’m always known to do, I think regulations need to change to make it easier to hire people. All we want is the support to live the lives we want. The DSPs make things happen; the system doesn’t. Without their help, we don’t live the lives we want and it’s easy to become isolated.

COVID-19 has been an awful time for me. I like to be on the go, but I was isolated at home. I got Zoom fatigue rather early and it seemed like I was spending all of my time on my computer. Unfortunately, my wife and I got COVID-19 at the same time. We spent a lovely ten-day quarantine together and I’m sure it wasn’t easy to be isolated with me for so much time. We had never spent ten days just looking at each other and thinking, “Okay, now what?” She’s a special education teacher, so she missed her classroom, and I missed being on the go. But we made it through together.

To those DSPs who have not been vaccinated yet, I understand the hesitancy. There’s a lot of misinformation out there. I think the reason we all should be vaccinated is because it makes our communities better and stronger. It enriches the community when people with disabilities are present instead of being invisible at home. Without the help of DSPs, that doesn’t happen.

We need to work together because we’re all in the same boat. We all need to row the boat in the same direction. If we go in circles, we won’t get anything but dizzy. The sooner DSPs get vaccinated, the better off we all will be.

I want my DSPs to be vaccinated. I rely on them for a lot of the stuff I need to do. If they’re not healthy, I won’t get the support I need, and we won’t be healthy together. And we need to work together because we’re all in the same boat. We all need to row the boat in the same direction. If we go in circles, we won’t get anything but dizzy. The sooner DSPs get vaccinated, the better off we all will be.