Share the Journey with Jeneva: Matthew Plantz on the Importance of Community Inclusion
Matthew Plantz at a local shopping mall. He wears a blue jacket and glasses, and sports a beard and mustache. Storefronts are behind him.
Our children with complex medical needs and disabilities will grow up to become adults with disabilities, so it’s important that we, as Little Lobbyists families, listen to disabled adults. Those of us who are parents may not have experienced life with a disability until our child did—who better to help us understand how to advise and guide our children than disabled adults?
Matthew Plantz is a lifelong advocate for individuals with intellectual and developmental disabilities at the local, state, and federal levesl. He is interim director of People on the Go, and facilitator for People Power, a local self-advocacy organization. He serves on the Howard County Autism Society Board of Directors, Community Advisory Committee/Kennedy Krieger and the Maryland Inclusive Housing committee. Matthew, a resident of Maryland, shared with me his story about the importance of inclusion.
Hi Matthew! Tell us about yourself.
I'm 40 years old. I like going to baseball games. I like being a self-advocate. I like reading books: mysteries, books about World War II, and the Bible. I also like going to church.
Tell me as much as you feel comfortable sharing about your medical needs and disabilities.
I've been legally blind since I was born 14 weeks premature. They tried to fix my eye. They couldn't do it, and they gave me too much oxygen. I've got ADHD, and in 2016 I developed diabetes type one, insulin dependent. I also have had mental health issues. I identify as part of the developmental disability community because I have an intellectual disability.
You’re on the board of directors of People on the Go, Maryland, an organization that is committed to ensuring that people with disabilities can live in the community of their choice. What are the biggest obstacles disabled people face to community inclusion?
I was the vice chair on the board of directors, and I recently got promoted to interim president, until we hold elections again.
We deal with a broken system not only here in Maryland, but all over the country. I mean, we've dealt with it for years. The underfunding of our staff. We can't get adequate staff. We can't retain adequate staff. If it's one thing Covid-19 has taught us, it brought to light what the disability community has known for years, that there's just not adequate staffing.
There’s also a lack of understanding. And I mean on federal, state, and local levels. If you haven't been in our shoes, haven't walked the walk we people with disabilities have had to walk. It gets me a little upset when people say they understand, because I'm thinking to myself, “No, you don't understand. There's no way you can if you haven't had to walk in our shoes.”
What other barriers have you faced?
People tend to go to other people, and I don't get looped in on the conversation. It's like people with disabilities are kept out of discussions about themselves. My doctor knows he has to come to me first, not to my staff. I don't like dealing with middle men. Everything gets filtered through me first. Now, if my dad and my mom are communicating about me, that's fine. At least my mom loops me in on everything. But barriers between Human Services and the medical community need to come down because they don't always work together to where they understand a whole person.
Matthew Plantz wears a black baseball cap and a blue t-shirt. The photo displays the words, “I got my vaccine! A shot in the arm for the disability community.”
The disability community depends on Home and Community-Based Services (HCBS) in order to live in their communities. But there are lots of obstacles to getting HCBS. What needs to change?
HCBS needs to expand over the nation. A couple years ago, I heard of a study, and I don't know if it's still accurate, but I'm one of the few people who was lucky enough to get community-based services and I do not, I really do not think that HCBS goes far enough.
The Biden Administration proposed all these great moves, but I don't think it ever went anywhere because I don't think lawmakers wanted to deal with it. The Biden Administration proposed that, I’ll give you an example, if my parents moved to Delaware, I could move with them. That the services would be interchangeable because waiting lists for services would be gone.
But my parents gave me an example: If they were to move to Delaware right now they could not take me with them. I would have to stay here in Maryland because if I went to Delaware, then I'd have to get reassessed and start from the ground up. I would have to reapply. If I were not disabled, moving wouldn't be a challenge. My parents don’t want me on a waiting list, so they’ve said they’re sticking right here.
In the next Congress, we all hope a bill that increases money for Home and Community-Based Services will pass. Can you explain to Congress why that's so important for our community?
I think it would bring us out of the Dark Ages here in the United States. It would expand the services and make them better nationally. I'm gonna give an example: Here in the state of Maryland, there was a survey done that said it would be easier to help people in the community than have them in institutions. I mean, the survey I'm quoting might be old, but I think it's cheaper to have me at my house than it would be in an institution.
Too often parents and caregivers speak for people with disabilities, rather than with them. How did you first learn the power of speaking for yourself?
Well, I started out at Maryland School for the Blind. The sidewalks there were so bad, it wasn't even a joke. I told the president at the time who got me a meeting with the board of directors and I requested more money for the sidewalks to get improved. So that's my first experience with advocacy. It made me want to get more involved.
How has advocacy given meaning to your life?
I believe I was put on earth for such a time as this. I was not expected to live, I was born so early. My doctors wouldn't even get my parents a birth certificate until they knew I would live. So, I mean, to go from being almost on death’s doorstep, literally, to being an advocate is really amazing for me.
If you could define advocacy in a single sentence, what would your definition be?
I would say it would give people with disabilities a voice and some freedom.
Jeneva Burroughs Stone is the blog manager for Little Lobbyists.