Helping Lead the Way
November 2, 2009
Several weeks ago, I received a phone call from Madeleine Will, vice president of Public Policy & director of the National Policy Center at National Down Syndrome Society requesting Central Ohio Down Syndrome Society’s help in securing the support of Ohio U.S. Senator Sherrod Brown for the Trisomy 21 Translational Research Parity Act that was just introduced into Congress.
Within days of receiving the request from NDSS, CODSS held direct discussions with Senator Brown’s office, and was able to secure not only Senator Brown’s support but his agreement to co-sponsor this very important bill. This is a tremendous first step for all individuals and families living with Down syndrome, but there is more work to be done.
That’s why NDSS has asked CODSS (the only Ds organization in Ohio) to sit on a small 5-person executive committee that will help guide strategy on enacting the Trisomy 21 Translational Research Parity Act. NDSS has also asked CODSS to lead the effort in Ohio to secure the support of the entire congressional delegation.
This is the real work, folks. This is the type of result and achievement that you demand of us as your organization.
We should all take pride in the fact that CODSS was directly responsible for Senator Brown co-sponsoring this bill, and huge kudos need to go to CODSS legislative lobbyist, Dean Fadel, who made this possible.
Very, very exciting times ahead.
National Down Syndrome Congress Point-of-View paper on health care reform and its impact on individuals and families living with Down
syndrome.
Lost in all the rancor over health care reform, is the fact that there is federal legislation pending in Congress that would support, assist, and recognize individuals with Down syndrome and other disabilities. Though near-term resolution to any of these bills is unlikely unless done through the framework of health care reform, here is a run down of current federal legislation that you should, at the very least, familiarize yourself with as they relate to DS individuals and families.
S.1810, Prenatally and Postnatally Diagnosed Conditions Awareness Act
Although signed into law by President Bush in October 2008, the law is worth bearing out here because it still lacks awareness among many in the larger DS community. More commonly known as the Kennedy-Brownback Bill (after the bill’s sponsors, Senators Ted Kennedy and Sam Brownback), this law strengthens the informed consent process around prenatal testing, and provides information and support services to parents receiving a positive diagnosis for Down syndrome or other genetic disorders. The law also creates a national clearinghouse of information for parents of children with disabilities, increases funding for peer-support groups, creates a national registry of families wishing to adopt children with disabilities, and develops education programs to help train health care providers in providing more balanced information and outcomes regarding the prenatal or post-natal diagnosis (read more here).S.493, The Achieving a Better Life Experience (ABLE) Act of 2009
Achieving a Better Life Experience Act of 2009 or the ABLE Act of 2009 – Amends the Internal Revenue Code to establish tax-exempt ABLE accounts for individuals with a disability to pay certain expenses, including expenses for education, housing, transportation, employment support, medical care, and certain life necessities. The bill also allows individual taxpayers a tax deduction, up to $2,000 per year, for contributions to an ABLE account (read more here).S.3297: Advancing America’s Priorities Act
In part, the bill provides for support services to women suffering from postpartum depression and who receive a positive diagnosis of Down syndrome or other prenatally or postnatally diagnosed conditions (read more here).S.CON.RES.22
A concurrent resolution expressing the sense of the Congress that the Citizens’ Stamp Advisory Committee should recommend to the Postmaster General that a commemorative postage stamp be issued to promote public awareness of Down syndrome (read more here).NDSC POV on Health Care Reform
Not a bill, but here is the National Down Syndrome Congress’ Point-of-View paper on health care reform and its impact on individuals and families living with Down syndrome (read more here).
The Accidental Advocate 
