March 6, 2015

by: Guest Contributor

Developmental Disability Advocacy

This week’s blog was written by Amy Hook, a client of UCP of Greater Cleveland who also works in UCP’s Adult Services Department. In light of March being Developmental Disability Awareness Month, we asked Amy to share about her involvement with different advocacy groups.

I am involved with many agencies. My primary agency is The Arc of Greater Cleveland, another group is LEAP (Linking Employment Abilities and Potential) which I’m involved the transportation coalition. I am involved in both groups for self advocacy on issues that affect people with disabilities, affect me, or individuals with lower income. I’m trying to get on the Developmental Disabilities Council which is statewide. Individuals need to get appointed by the Governor. I’m also going to try again for the Cuyahoga county council subcommittee on disability and the Regional Transit Authority council.

If it affects me I try to get involved. With The Arc I’m on the board of directors, president of People First and a graduate of Partners In Policymaking. I also sometimes help identify people that might be interested in these programs and I have been a speaker or help with Partners in Policymaking.

I’m also involved in a group of doctors, agencies and advocates that are sharing information and conducting research to make the health care system better for people with developmental disabilities called the DDPBRN (Developmental Disabilities Practice Based Research Network).

It was a gradual progression to be involved in so many groups. I started out with The Arc because I needed an advocate to get some things in place. I also wanted more friends. It ended up to be an advocacy group instead of a social club. So I made it work as a social group even though it was advocacy, I have found many friends! It was really all by accident!

If you know what is going on in the world really it is the community that you live in and you know what you need then you can advocate for yourself or get someone else to advocate with you because you don’t know the run around you may get into. It is the same no matter what the issue is – you have to know what you’re talking about whether .it is about you or the community or a bill going through congress. It takes a long time no matter what! You can change anything from an ISP (Individual Service Plan) or wheelchair update to getting a car that is wheelchair accessible to changing the bus routes to putting a bill through congress. You need to know how to advocate for yourself because when your parents are gone there is no one else to ask. You need to know where to go if you have a problem. Through Partners in Policymaking and People First I’ve seen the most change. Here are a few things that we changed.

R word dismissal
ABLE act
Eton Place getting sidewalks
Bus routes changed not all but some
Accessibility pending still a bill
Bullying

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