Tuesday, April 29, 2008

from the National Down Syndrome Society Policy Center.

I took action, so should you!!!!



Two Bills Make Progress in Congress

Take Action!

We Need More Co-sponsors Now, Contact Your Senators and Representatives Today

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:
---------------------------------------------------------------------------------------------------------------------
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,

---------------------------------
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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