TO: NDSC Members and Affiliated Parent Groups
FROM: Susan Goodman, Director
Governmental Affairs
DATE: February 5, 2008

Kennedy- Brownback Update s.1810

Senate staff met on January 30, 2008 and are in the process of developing a revised version of the Pre-natally and Post-natally Diagnosed Conditions Awareness Act (S. 1810). The mark-up of the bill by the Senate Health Education Labor and Pensions (HELP) committee is scheduled for February 6th. NDSC and NDSS continue to work with Senate staff to move this bill forward. However, election year politics make the progress of this bill a challenge.

NDSC and NDSS Governmental Affairs staff will attend the mark-up and, as soon as a revised version becomes available, we will notify Newsline readers.

We Want Your Feedback

National policy and legislation often seem remote and unimportant in our daily lives as advocates for our children with Down syndrome. However, a change in a law or an action by an executive agency such as the Department of Education can affect the quality of our children’s education, opportunities available for independent living and employment, and all other aspects of living and working in the community.

We need your feedback! The NDSC Governmental Affairs Director will be sending out a survey to Newsline readers as well as parent group affiliates to determine the areas of interest on issues related to policy and legislative affairs. We need information about you, your current involvement in advocacy efforts and what information would be most useful to you in advocating for your son or daughter with Down syndrome. After gathering this initial feedback from parent groups, we will be following up with more detail on highest interest areas.

Please respond to this survey when you receive it and forward it to your listserv and encourage others to do the same.

Proposed Rule Allows More Flexibility in Hiring Support Workers

The Centers for Medicare & Medicaid Services (CMS), U.S. Department of Health and Human Services published a proposed rule in the Federal Register on January 18 that would allow more Medicaid beneficiaries to be in charge of their own “personal assistance services.” This proposed rule would not increase present levels of funding nor would it expand eligibility for services. Rather, it is intended to allow current Medicaid beneficiaries (and families) to hire, train, supervise and fire their support staff instead of being dependent on an agency to deliver those services.

Although individuals may choose this option, use of it is voluntary -- the state must also provide traditional agency-delivered services if the beneficiary decides that they want to discontinue the self-directed care option.  NDSC participates in the Consortium for Citizens with Disabilities Health Task Force and will be closely following developments in this area.

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