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:

Education

  • Support students in building self-advocacy skills while in high school to further support transition to post-secondary education and other areas of life.
  • Create more certificate programs and other opportunities besides a full degree for individuals with disabilities to pursue a career of their choice.
  • Students largely do not feel supported by the disability offices in their schools. There needs to be an investment in initiatives directed towards students with disabilities to provide support with accommodations, campus life, and creating a community of support.
  • Young people with disabilities need more education and support on accommodations, how to request them, and what their rights are.
  • Ensure that accommodations being provided to students are not just carried over from high school and are revisited based on what is needed in this new environment.

“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?”

Employment

  • Provide more training and support for young people with disabilities on creating resumes, participating in interviews, and finding a job/career.
  • Increase education and access to benefits while maintaining or pursuing employment.
  • Increase access to skilled trades for people with disabilities.
  • Fund and support more efforts to promote equity and disability for employment, including education for employers on hiring people with disabilities.

“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.”

Engagement & Service Improvement

  • Increase knowledge and recognition on the importance of language, including the use of person-first versus identity-first language.
  • Ensure materials that are provided in plain language are still informative.
  • Provide information in way that young people can interact with the information and be supported in applying that information in life.
  • Meet people where they are at. Information and resources must be provided in places that young people access or seek out information.
  • As we eventually move away from some of the COVID-19 restrictions, ensure that supports and platforms are not just abandoned.

“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. ”

Health Care & Service Access

  • Access to affordable health care is a significant factor for young people with disabilities maintaining employment and their independence. There needs to be more support addressing barriers and expanding access to affordable health care.
  • Provide training and support for young people to figure out what their needs are and what services would best support them.

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

  • There is a need for increased housing programs in the community, including emergency housing to support young people in crisis.
  • Young people need support and education to secure housing and live independently.
  • Affordable, accessible housing options are difficult to find. More efforts should be made to expand availability and increase the knowledge of these opportunities for people with disabilities and the services that support them.

“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.”

MEntoring & Peer Support

  • Create mentoring programs for young people with disabilities to help them be an effective voice for their needs.
  • Expand the availability of peer support for young people with disabilities.
  • Establish career-focused mentoring programs.
  • Support innovative programs working to create these opportunities that are led for and by young people with disabilities.

“[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”

Parents, Caregivers, and Allies

  • Support recognition that young people with disabilities want the same things as a person without a disability.
  • Create opportunities for parents, caregivers, and allies to work directly with professionals with disabilities.
  • Provide opportunities to enhance communication between young people and their parents, caregivers, and other supportive adults.
  • Create supports for all family members to address their needs.
  • Work with parents and caregivers to address cultural barriers.

“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.

Transportation

  • Access to public transportation is a large factor in young people being able to maintain independence and when making decisions regarding housing and employment. There needs to be increased reliable public transit systems, including paratransit services.
  • Provide skills training and support for young people to utilize public transportation or learn how to drive.
  • Address the impact of lack of available public transportation on the employment and independence of people with disabilities.
  • Increase funding for projects to improve access to paratransit services.

“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.