TO: NDSC Members and Affiliated Parent Groups 
FROM: Susan Goodman, Director Governmental Affairs, National Down Syndrome Congress
DATE: Dec 18, 2008

NDSC Meets with Obama-Biden Transition Team

On December 17, 2008 Susan Goodman, Director of NDSC Governmental Affairs and Tonia Ferguson, NDSC Board member met with the Obama-Biden transition team, along with the ARC/UCP, American Association for Persons with Intellectual Disabilities, and the National Down Syndrome Society. We met with Kareem Dale, Disability Coordinator in the Public Liaison and Intergovernmental Affairs Department, Sharon Lewis, Department of Education Agency Review Team and Henry Claypool, HHS Agency Review Advisor and Marcie Roth, Civil Rights Review Team.

The purpose of the meeting was to discuss the Presidential transition and broad disability policy issues. The issues we raised and discussed were lack of inclusive opportunities, quality instruction and accountability in education for students with disabilities and, in addition, lack of job and community living opportunities for adults with disabilities.

All groups were in agreement about the crisis in adult services that is resulting from the state of the economy as well as the issues about educational accountability. Mr. Dale stressed the desire of transition team to ensure that the transition is a “transparent” process.

The website devoted to transition issues can be found at http://www.change.gov. There are many opportunities to comment on issues on that forum.

Bring the Urgent Issues of the Wait List for Adult Services to the Attention of the Obama-Biden Transition Team


In 2006, there were over 280,000 individuals with disabilities on waiting lists for community living services also know as Medicaid Home and Community Based Services in 31 states. Other states do not keep official waiting lists so the true number of individuals with unmet needs is much higher and growing with the aging of the U.S. population. There is no entitlement to adult services as in education through the Individuals with Disabilities Education Act (IDEA) so many individuals with Down syndrome and other disabilities leave school with no job opportunities or supports to live in the community independently.

A group of parents have been conducting a national campaign to end the waiting list. They are asking people to vote for Medicaid waivers for individuals with disabilities as a top health care issue. You can read about this group at HYPERLINK "http://www.noewait.net" http://www.noewait.net.

It is very important to shed light on the critical problem to the new Administration. We encourage members to vote on this health care initiative and if you have a personal story about an individual you know who is on the waiting list, please follow the directions received given below by the noewait organization. 

 VOTE on the issue at the Obama Transition team site.


http://www.change.org/ideas/view/fully_fund_medicaid_waivers_for_the_developmentally_disabled

We need over 900 votes to get to the top of the Health Care list of ideas. 

Send a message to every listserv you are on and ask others to vote.  Then, if you have a web site or blog, create a widget to put on your site or blog to get others to vote.  Put it on you Myspace or Facebook page. 
go to:
http://change.gov/agenda/disabilities_agenda/

PLEASE HELP GET THIS ISSUE TO THE ATTENTION OF THE OBAMA TRANSITION TEAM.

If you have questions or comments about this Newsline, please contact Susan Goodman at susan@ndsccenter.org.