TO: NDSC Members and Affiliated Parent Groups
FROM: Susan Goodman, Director
Governmental Affairs
DATE: June 2, 2008

Senator Edward Kennedy
NDSC offers its thoughts and prayers to Senator Edward Kennedy (D.MA) as he faces treatment for a malignant brain tumor. Senator Kennedy is truly a champion for individuals with disabilities. Currently, Senator Kennedy is chair of the Senate Health Education and Labor (HELP) committee and the second longest serving member of the Senate.

Advocacy Continues on Savings Account Legislation
NDSC, NDSS and representatives of the Northern Virginia Down Syndrome Association have been working in close collaboration with the ARC/UCP, Easter Seals and Autism Speaks and Fragile X Syndrome coalition, among others, in continued efforts to move the Financial Security Accounts for Individuals with Disabilities Act of 2007 (HR 2370) in the House of Representatives and the companion bill, in the Senate. Funds in the accounts will pay for important expenses such as:
• Education
• Medical care and dental care
• Transportation
• Moving
• Assistive technology
• Housing and Transportation, after the age of 18
• Employment coaching and training
As reported in an NDSC-NDSS Action Alert, both of these bills would establish tax-exempt financial security accounts for individuals with intellectual disabilities and not jeopardize an individual’s eligibility for much needed long term benefit programs such as Social Security and Medicaid.
We will keep members apprised on activity and when timely advocacy efforts are needed.
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Genetic Information Nondiscrimination Act of 2008 (GINA)
On May 21, President George W. Bush signed into law the Genetic Information Nondiscrimination Act (GINA). The Genetic Information Nondiscrimination Act prohibits insurers from:

“requesting or requiring” genetic testing of an individual or his family; and, using genetic information to determine eligibility or establish premiums.
It also prohibits employers, employment agencies and labor organizations, from:
requesting or requiring” genetic testing of an individual or his family; and,
using genetic information to make hiring or promotional decisions, or when determining eligibility for training programs.

The health insurance provisions of the law will take effect in 12 months and the employment protections will take effect in 18 months.
To see the version that passed both Houses, go to:
http://thomas.loc.gov/cgi-bin/query/D?c110:4:./temp/~c110svNJbi

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If you have questions or comments, please contact Susang1961@aol.com.