Down syndrome activists are pushing for a variety of legislative reform that would increase information, resources and funding for children with Down syndrome and their parents.
In early March, hundreds of Down syndrome activists congregated in Washington D.C. to lobby for federal funds. Below are a number of pending bills that would impact the Down syndrome community.
Kennedy-Brownback Bill: Information for Parents of Down Syndrome
The Kennedy-Brownback bill would provide a wide variety of pre-natal and post-natal information and resources to parents with children with Down syndrome. The bill is intended to compensate for the lack of information that medical professionals are often able to provide parents. It would allocate $25 million over five years to states entities and health care clinics.
The legislation has already been passed and was signed into law on October 14, 2008 by President Bush. However, it has yet to be funded, and Congress will decide how much money to give the program during appropriations hearings this fall.
ABLE Act of 2009: Increase SSI
The Achieving a Better Life Experience Act of 2009 (ABLE) would change I.R.S. code to provide tax-exempt accounts for people with disabilities to pay for education, housing, transportation, vocational support, medical care and life needs. The importance of this bill is that currently the maximum contribution to these accounts is $2,000 for those who receive Medicaid and SSI. If this legislation was passed, individuals with disabilities would have a contribution limit of $500,000. This bill is currently still before committee.
H.R. 1255, Lawsuit Reform
H.R. 1255 would give residents in intermediate care facilities, or their legal guardians, the option to receive notification of any lawsuit involving the facilities’ residents and opt out if they so desire. The bill is supported by the disability advocacy group Voices of the Retarded, (VOR) who believe that legal reform is needed to prevent facilities from being closed unnecessarily.
However, the National Down Syndrome Congress opposes the bill and argues that the legislation would limit the rights of and harm individuals with disabilities. The bill was introduced on March 3, 2009 by Rep. Barney Frank and has been referred to the house committee on judiciary.
Other Down Syndrome Issues Facing Congress
Disability advocates are also encouraging legislators to increase federal funding for Down syndrome research, which is allocated only a fraction of the funds that go toward research on cystic fibrosis or Fragile X syndrome. There are also proposals to find ways to better streamline individuals with disabilities into the workforce and to the reform the (IDEA) act to concentrate more money on special education.
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See Abortion Rate Affected by Down Syndrome Test? for information about Down Syndrome statistics and risks.
Want to learn more about other recent bills passed in the Senate for people with disabilities? Check out Prosthetic Parity Bill Introduced in the Senate.
