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TO: NDSC Members and Affiliated Parent Groups
FROM: Susan Goodman, Director Governmental Affairs
DATE: August 21, 2008
In this issue:
Community based services bills considered
Higher education bill passed
Congress in recess
NDSC American Express Members Project
New Bill for Community Based Services
Senators John Kerry (D-MA) and Charles Grassley (R-IA) introduced the Empowered at Home Act of 2008 (S. 3327) which would give states more flexibility in determining eligibility (up to 300% from the current 100% above poverty level) and would allow states to offer an individual more services than are currently allowed by the Deficit Reduction Act of 2005 which amended Medicaid.
Another similar bill currently before Congress is called The Community Choice Act, (S. 799; H.R. 1621). This bill would also amend Medicaid to enable families and individuals with disabilities to choose how they receive long term supports, shifting the focus from institutional care to community programs.
Most funding for community-based services for adults with disabilities comes from Medicaid. These bills are designed to give individuals and their families more control over how their funding may be spent, what services an individual will receive, and who will deliver the services -- put the decision-making authority in the hands of those in whom it belongs. This is a shift in the way services have traditionally been delivered -- changing the system from one of “care” for an individual with a disability to one of individual empowerment and control over resources. It is a continuing advocacy struggle and strong, persistent efforts are needed to have real systems change.
Many advocates feel that the question of how Medicaid funding is handled is the most important disability issue of the future.
We remain committed to continue our work towards eventual passage of these important bills. It is not unusual to work on passage of bills for several sessions of Congress. In the area of Medicaid progress has been slow but progress has been made in legislative efforts.
Higher Education Act Passed
Congress has approved a bill to reauthorize the Higher Education Act. This act, which sets federal higher education policy for at least the next five years, will expand eligibility for grants and work study jobs to students with intellectual disabilities; authorize new model programs; and, infuse the principles of Universal Design for Learning (UDL) into the higher education law.
Summary of provisions for students with intellectual disabilities
Allows students with intellectual disabilities, who are attending programs designed for them in higher education, to be eligible for the first time for Pell Grants, Supplemental Educational Opportunity Grants and the Federal Work-Study Program.
Authorizes the development and expansion of high-quality, inclusive model comprehensive transition and post-secondary programs.
Authorizes the establishment of a coordinating center for the new model programs. This center will provide technical assistance, evaluation, and development of recommendations for model accreditation standards as well as outreach and dissemination to postsecondary programs, families and prospective students.
Ensure equal college opportunities for students with disabilities
Establishes a national center to provide support services and best practices for colleges, students with disabilities, and their families.
Helps colleges recruit, retain, and graduate students with disabilities and improves education materials and facilities.
Universal Design for Learning (UDL)
The Higher Education Opportunity Act contains numerous provisions regarding the preparation of educators in early childhood, elementary, secondary and postsecondary education settings to use the principles of UDL in their instructional practices. UDL provides flexibility in the ways information is presented, in the ways students respond or demonstrate knowledge and skills, and in the ways students are engaged. It also reduces barriers in instruction, provides appropriate accommodations, supports, and challenges, and maintains high achievement expectations for all students.
The recent UDL efforts were led by a task force headed by Ricki Sabia, Associate Director of the National Down Syndrome Society Policy Center, and 24 general education and disability organizations, including the National Down Syndrome Congress. For more information on the Task Force and Universal Design for Learning see www.udl4allstudents.com and www.cast.org.
The National Down Syndrome Congress applauds the leadership and hard work of our partners at the NDSS Policy Center on this initiative. In addition, we recognize and appreciate the leadership and bipartisan spirit of the following members of Congress who were instrumental in the passage of this bill: Representative Pete Sessions (R-TX), who is also the father of a son with Down syndrome; Senate Health Education Labor and Pensions Committee Chairman Kennedy (D-MA); Ranking Member Enzi (R-WY); House Education and Labor Committee Chairman Miller (D-CA); Ranking Member McKeon (R-CA); and, Senator Mikulski (D-MD). For more information on the Higher Education Act, contact Madeleine Will at mwill@ndss.org.
Congress Takes Summer Break
Congress began their summer recess earlier this month and will reconvene on September 8th. When they return, a top priority item will be resolving the budget for FY ’09 which begins on October 1st. If a budget is not passed, a Continuing Resolution (CR) will be needed to fund government programs for the new fiscal year. It appears unlikely that a budget will be passed this year.
This will mean that most programs will be funded at their FY ‘2008 level. The CR will be in effect until the Congress and the new President will try to resolve the budget issues in the next session of Congress beginning in January. It is not unusual for the government to operate under a CR. However, this has major negative implications for already struggling social programs because the cost of inflation is not factored into a CR.
Specific legislation of interest to our membership, such as the Prenatal and Postnatal Diagnosis Conditions Awareness Act (known as the Kennedy- Brownback bill) and the Financial Savings Accounts for Individuals with Disabilities Act (FSAID) will probably not be passed this year.
As with the legislation mentioned in the above, it will be extremely difficult to pass new legislation during an election year. Our strong advocacy efforts in this will continue.
To read the text of these bills, go to http://thomas.loc.gov and key in the bill number.
The American Express Members Project is back! Cast your VOTE today for the National Down Syndrome Congress' "More Alike than Different" campaign!
Nothing we can do as an organization and a community will touch the number of lives, or have more impact on those lives, than working to improve public perception and awareness.
If you took part in this project last year, you’ll see a few differences. One is that you don’t have to be an American Express cardholder to vote—there is a “guest” option this year.
VOTE Today and help make a difference! And pass this on to your friends and family!
http://www.membersproject.com/project/view/SJT6WB
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”!
If you have questions or comments about this Newsline, please contact Susang1961@aol.com.
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