Obama/Biden transion & the NDSC, movement to end wait li

[Ben'sMom]

TO: NDSC Members and Affiliated Parent Groups

FROM: Susan Goodman, Director Governmental Affairs

DATE: December 19, 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 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.

1. VOTE on the issue at the Obama Transition team site.

[url]http://www.change.org/ideas/view/fully_fund_medicaid_waivers_for_the_developmentally_disabled
[/url]
We need over 900 votes to get to the top of the Health Care list of ideas.

2. 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 your Myspace or Facebook page.
3. go to:
[url]http://change.gov/agenda/disabilities_agenda/[/url]


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

In addition, please notify susan@ndsccenter.org when you have voted on this crucial issue.

Help Spread the News!

The NDSC’s Governmental Affairs Newsline is an excellent resource and one we encourage you to share with your parent group affiliate, or personal, listserv.

(If you no longer wish to receive these email updates, please go to our website, and click on “Contact Us”.)

Support Our Advocacy Work!

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How to Join the NDSC

Founded in 1972, the NDSC is the oldest national organization for persons with Down syndrome, their parents, siblings and the professionals who work with them. The Congress is known for its advocacy, its encouragement of self-advocate empowerment and leadership, as well as its many services, including Down Syndrome News, the Governmental Affairs Newsline, hosting the nation’s largest DS convention (July 31 to August 2, 2009 in Sacramento, CA) and its toll-free information and resource hotline.

Annual dues are just $25, and may be paid online at www.ndsccenter.org; over the phone at 800/232-6372; or by mail at 1370 Center Drive, Suite 102; Atlanta, GA 30338.

Please join us as we continue “Making a difference, one family at a time”!

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If you have questions or comments about this Newsline, please contact [url]susan@ndsccenter.org[/url].
_________________
Cynthia Anderson
Mom to Ben, 8 and Katherine, 4