It is time to pull together and show our support for two very important pieces of legislation that are beginning to make their way through congress. The details are included below from the National Down Syndrome Society National Policy Center & the National Down Syndrome Congress along with a sample letter to send to our Senators and your Representative.
If you do not know your representative you may follow this link and enter your zip code:
http://www1.ndss.org/index.php?option=com_wrapper&Itemid=174
Together these bills cover the life span of individuals with Down syndrome, from that first diagnosis through financial security into adulthood. It doesnt get any more important than that. Your support is needed to make the voice of Down Syndrome Indiana heard in Washington. Together we will make a difference!
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Two bills in Congress could significantly improve the future of children and adults with Down syndrome in the United States. Please contact your Senators and Representatives to show your support for the following bills:
Prenatally Diagnosed Condition Awareness Act
Rep. James Sensenbrenner (R-WI), along with Reps. McMorris-Rodgers (R-WA) and Pete Sessions (R-TX) in the House, and Sens. Kennedy and Sam Brownback, introduced the Prenatally Diagnosed Condition Awareness Act of 2007 (HR 3112/S 1810). The bill increases the amount of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions.
In addition, the bill would fund grants, contracts and cooperative agreements to collect, synthesize, and disseminate current scientific information. Further, the bill would coordinate and provide access to supportive services for patients including:
A Telephone Hotline
An Information Clearinghouse
Peer-support Programs
Registries of families willing to adopt children affected by such conditions
Contact your Representatives and Senators today. Ask them to cosponsor HR 3112 and S 1810.
Financial Security Accounts for Individuals with Disabilities (FSAID)
Rep. Ander Crenshaw (R-FL) introduced the Financial Security Accounts for Individuals with Disabilities Act of 2007 (HR 2370) in the House and Sens. Bob Casey (D-PA) and Orrin Hatch (R-UT) introduced the companion bill, Financial Security Accounts for Individuals with Disabilities Act of 2008 (S 2743), in the Senate. Both of these bills would establish tax-exempt financial security accounts for individuals with intellectual disabilities and not jeopardize benefits. 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
The purpose of these accounts is to establish a savings instrument for individuals with disabilities and their families to provide them with the same flexibility, portability, and tax advantages that are available to all other Americans and their families. These accounts are not intended to meet the long-term support needs of individuals with intellectual disabilities. The legislation is built on the premise that persons with disabilities should be encouraged and supported in their efforts to save in order to create an independent and meaningful life just as other Americans strive to do.
Contact your Representatives and Senators today. Ask them to cosponsor HR 2370 and S 2743.
ACTION REQUESTED
We are asking that you contact your Senators and Representatives, via telephone or fax, to build support for the aforementioned bills related to the Down syndrome community. The following is a sample letter that you can send:
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Sample letter to your Senator or Representative
[Insert Date]
Dear Senator/Representative:
I am writing to you today to ask you to support two bills that will greatly aid the Down syndrome community and the families that take responsibility for raising and supporting them. The Prenatally Diagnosed Condition Awareness Act (HR 3112/S 1810), sponsored by Rep. Sensenbrenner and Sens. Kennedy and Brownback, helps modernize our public health infrastructure to ensure pregnant woman receiving a positive diagnosis for Down syndrome and other genetic conditions receive timely access to evidence based and up to date information and help facilitate better access to support services such as telephone hotlines, information clearinghouses, peer-support programs and registries of families willing to adopt children with such conditions.
I am also writing today in support for the Financial Security Accounts for Individuals with Disabilities Act (HR 2370/S 2743) sponsored by Rep. Crenshaw and Sens. Casey and Hatch. This bill would establish tax-exempt financial security accounts for individuals with disabilities to pay for education, medical care and dental care, transportation, moving, assistive technology, housing and transportation, after the age of 18, and employment coaching and training. These accounts allow for individuals with intellectual disabilities to save for their futures just like everyone else.
I have a [child/sibling/grandchild/friend] with Down syndrome and am hopeful that these bills will help us better serve the Down syndrome community. [Insert a few sentences about your family member or friend with Down syndrome.]
I appreciate your time and work on behalf of my [child/sibling/grandchild/friend]. I look forward to working with you in the future.
Sincerely,
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For more information, contact: Sara Hart Weir, National Down Syndrome Society (NDSS), at sweir@ndss.org, or (202) 312-7475; or Susan Goodman, National Down Syndrome Congress (NDSC), at SusanG1961@aol.com, or (301) 570-8892.
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