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. 

For Example, the NDSC is advocating for a law to prohibit restraint and seclusion in schools, and has been for years now, with great resistance from administrators, some teachers and even some parents.  It seems like thankless work but as long as children in schools are abused we cannot stop.  Even if laws are not passed in the short term, public awareness is raised, progress is made in positive behavior supports and hopefully fewer children are abused because of education and awareness and the work we are doing.

My son is in his 40’s.  He has autism.  My challenges are no less than 40 years ago – just different.  He has a full time job with the federal government, lives in his own apartment with supports and has friends and activities he enjoys.

However, my husband and I still have to be concerned about his quality of life, his safety, the supports he has and most of all what will happen when we are not here anymore.  I have 2 other children who do not live in the our area and while they care for their brother dearly, they have their families and lives – just as I want them to. 

So for me this journey is very personal and it is my passion to make sure my son and all people with disabilities are treated as valued members of society, that they have the supports they need to ensure a quality life throughout their lifespan.

However, my work is as strong as the organization I am representing.  And NDSC is its members.  Local Down syndrome groups need to set goals and priorities, need to work with other organizations in their states and localities with like-minded goals.  They need to form coalitions. For example, people need to know what is happening in their states as states convert from fee-for-services to managed care for Medicaid (long-term support services under the Medicaid-waiver program).  They need to focus on the kinds of transition services students are receiving in schools.  Are they really going to prepare students for a REAL job?  Are they getting a quality education or glorified baby-sitting?

Members need to develop relationships with their legislators, federal and state.  It’s not rocket science.  Invite you legislator to your buddy walk or chapter event.  Take them to see a person with a disability in an inclusive work setting.  Call them when important legislative issues come up.  Stay in touch, offer to send them information. Numbers count – legislators count numbers.  If they hear from 100 people about a particular issue, they will listen — 1,000 is even better.

We publish and NDSC Newsline regularly.  If you do not receive it, send an e-mail to info@ndsccenter.org and ask to be added to the list.  It is a great way to be informed and know when timely action is needed.  We send Action Alerts when our members need to act.  We also keep people informed about the status of legislation in Washington D.C. 

 I will fight every day for your child’s rights. But it is your child and your advocacy that can make a difference.  Together we can be a powerful team.  And one way you can be a team member is to be knowledgeable, be proactive and always think about the future.