By: Stephanie Holland
This year the annual NDSC convention was held in sunny Phoenix, Arizona. The 100+ degree weather made things outside of the conference venue a bit sticky, but inside everything was “cool.” If I had to sum up my own experience this year I would use these three words: collaboration, friendship, and hope.
The Road is proud to share a guest post by Susan Goodman Esq., National Down Syndrome Congress, Director, Governmental Affairs. This is the first of our series on the National Down Syndrome Organizations. Follow up with the NDSC here.
Advocacy for the long haul
This is my first written communication since the wonderful NDSC conference. What can I say? After a lifetime of advocacy (and conferences) I’m still wowed about what an amazing conference this is. I was also wowed by one particular family that I will tell you about and illustrates what we have and have not done, what my goals are and what we can all accomplish together.
A husband and wife who live in New Jersey approached me after my workshop on federal policy and what it means for your child. They had a 16 year old son and this was their first conference. They said they knew virtually nothing about services beyond education. They were amazed at my presentation and, it seemed to me, what they did not know. We talked for a while and I told them to e-mail me and I would find out as much as I could about services in their area.
My goal is to keep this family and all families informed on important federal policy and legislation that affects their child’s entire future and to give families the information they need to advocate for themselves. To enable them to form relationships with groups that are advocating for services that will make a difference in what kind of education and training our children have, where they live, who they live with, what kind of job they have, what there recreational opportunities will be – anything that will allow them to have the same opportunities as non-disabled individuals.
But I would also say -- Advocacy is a long haul. It’s a lifetime commitment. It isn’t one “quick fix law” that can change everything. It is input we have on laws that are being written, implementation of those laws, changing attitudes about and acceptance of all people as individuals. It is, as I say in my presentation, a lifelong journey. Unfortunately, in the present political climate we have to fight to keep what services we have. We are faced with constant threats of cuts to Medicaid (which pays for long-term support services), our children’s life line as adults, Supplemental Security Income (SSI), special education services, housing, transportation and the list goes on.
Life on "the road" of caregiving for adults who have Down syndrome.
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