Bringing the Voices of Young People to the DDPC State Plan
On December 9th, 2020, the Young Leaders and Advocates Network held a statewide focus group with the NYS Developmental Disabilities Planning Council (DDPC). This focus group was held to bring the voices of young people with disabilities into the development of their 2022-2026 State Plan.
The NYS DDPC State Plan outlines the direction of their work for the next five years. While the NYS DDPC does not provide direct services, they do pilot new programs across the state. Input from young people and other advocates in the past have led to projects being funded such as leadership forums, a juvenile justice community of practice, advocacy institutes, and more! Learn more about the DDPC and the projects they fund by visiting ddpc.ny.gov.
Through the focus group, key areas were identified by young people with disabilities. Here is what they had to say:
“If colleges invested in initiatives directed towards students with disabilities, they would get more students with disabilities coming to their schools and thriving. Not just dropping out because they can’t get accommodations or they feel isolated.”
“How many of you have two thousand dollars for a random evaluation that your Dean of Students tells you that you have to get? Maybe if I begged and took out a loan I could get that in a hurry. Its not exactly easy to get a full neuro-psych evaluation if they decide your documents aren’t “fresh” enough. That’s assuming they even let you in the door.“
“When I went off to college, I didn’t know that those things I had in high school were accommodations or that there was a way to ask for them in college. How can I go through the proper channels and ensure my rights are protected if I don’t even know they exist?”
“Fear of losing benefits affects people with disabilities being encouraged to work”
“A lot of us don’t know how to do interviews or create resumes. Simple things that maybe others know how to do. We should have help in those areas, so we are prepared.”
“[After graduating college] You have all of this debt hanging over your head and the frustration of not doing what you spent four years of blood, sweat, and tears getting a degree because someone isn’t willing to give you a shot, in-part because there’s a disability that’s in the way.”
“There’s a difference between sharing something that’s in too much plain language where you feel like you’re losing out on being truly informed. Sometimes I get materials that have basically been redacted of information to sway me in one way or another. Just completely simplified the point of, “Yeah, you gave me a packet of information but it doesn’t tell me anything at all.” That is more of a disservice than anything.”
“As someone with dyslexia and a language barrier, I would be highlighting it on the computer and looking it up so I would be able to understand. Having things online and the ability to do that, especially if you have a learning disability, it’s very helpful.”
“The importance of language cannot be understated. Yes, person first language is a great practice but a lot of people don’t know about it, don’t know how to use it, or they just flat out refuse to use it. Does it then become a best practice to say “How would you like to be identified?” In the deaf community, they’re very identity-first oriented because there’s Deaf pride, as there should be Deaf pride. In their culture that’s how they like to be identified. ”
“Access to healthcare is a reason I opted not to push myself when it came to losing my last position and had to accept that, for now, I was “too disabled to work”. That’s crushing. I worked for six years before and have to give up for a while.“
“When you get a job and you are no longer receiving those benefits, I am incredibly worried about being able to afford the insurance I need to stay alive.”
“We need some sort of training on figuring out what you truly need. Often times, in the world of disability, there’s this mentality that we have to be the superhero and do everything because we’re constantly having to prove to people that we are worthy, we are viable, we are able to contribute to society, we are essential. For example, I should have started using consumer-directed personal assistance home care services years ago instead of just last year. I had to work through my own crap in terms of realizing that I simply can’t do it all.”
“Housing is such a critically important part to anyone’s physical and mental health. There NEEDS to be more affordable housing options in general.”
“I was looking for an apartment and get SSI but I’m also in a wheelchair so I was looking for an apartment downtown near the bus line and near my school. All these apartments are over what my SSI gives me. Some of the public subsidized housing was only for people over 65 years old and they have such long waitlists. I didn’t even know where to go to find housing that’s affordable to me, that I can get on time, and that fits my needs.”
“I’m not at risk of being put in an institution so I couldn’t get help [through available programs]. So I would just live at home which isn’t an institution. But I want to live on my own. I want to live in my own apartment. The supports that are there aren’t wide enough.”
“[If there was one project or program that could be created in the next five years] Have a well-established mentoring program where adults in similar circumstances meet with a young person to help them figure their stuff out, walk them through the beginnings of standing up for themselves, interpret the things that people say about them in meetings, and be an effective voice for their own needs.”
“We see peer support widening in other systems, like in mental health and recovery, but for young people with disabilities unless you also have that experience you are not able to access peer support or get connected to peers who have similar life experience. Finding a way to bridge that gap is something that’s definitely needed.”
“Career-focused mentoring for people with disabilities could support them through the transition age and beyond”
“I think parents, caregivers, and allies can support youth or other parents by realizing that we, as people with disabilities, want the same things as a person without a disability.”
“The only people that parents/caregivers typically hear from is other parents. We get ignored. What we need is parents/caregivers being exposed directly to professionals with intellectual and developmental disabilities, autistic professionals, people who can sit the parent down and say “back in the day, I was your child. Here’s what worked for me, here’s what might work for you, and here’s, more importantly, what you should never do.”
“We want our parents, caregivers, and natural supports to be around for as long as possible and to be healthy enough to be independent too. Sometimes they don’t always have those skills themselves. They deserve the opportunity to have that.“
“If I wanted to be successful in radio, I’d have to move to some small-town USA where there’s no public transportation and frankly I was unwilling to give up the independence.”
“If people don’t have access to education or access to have help with their education – even with driving – then that’s where they tend to fail to get their license or don’t learn how to take the bus. There’s a lack of communication and I don’t really learn that skill.”
“I would like to see more public transit systems. I found it difficult to drive and get my license. I currently don’t have my license and I live in Albany half the year because I’m in college. When I’m in Albany, I’m pretty independent I can do everything myself. But when I’m home, I have to have my parents drive me everywhere. I definitely feel more freedom when I’m in Albany and not here.”
Survey Now Available!
Interested in providing input? The DDPC has created a survey to continue collecting input from young people with disabilities.
The survey takes approximately 5-10 minutes to complete. Any input you share will be kept anonymous. Responses will be accepted until February 1, 2021.