Children’s Initiative: Ensuring Every Child Lives up to His or Her Full Potential

May 26, 2009

On any given day, thousands of people visit our nation’s capital to promote an issue.  They are all dedicated to helping a cause and in many cases dedicated to improving lives across this country. 

One such group holds a special place in my heart.  Earlier this month, I had the pleasure of spending some time at the Down Syndrome Affiliates in Action conference.  I was touched to see more than 300 people from around the country make their way to Washington to promote public policies that can significantly enhance the quality of life for individuals with Down syndrome as well as many others. 

Every parent has hopes and dreams for their child; Down syndrome is not on the list. When our son, Cole, was born with Down syndrome, it is not what we expected, yet we have embraced him as the special gift from God that he is.  We are developing new dreams for our son and other children with Down syndrome. 

As a founder and co-chair of the Congressional Down Syndrome Caucus, I was honored to talk the National Down Syndrome Society and the National Down Syndrome Congress on our shared goals to ensure every child lives up to his or her full potential.

Our first priority is to fully fund the Prenatally and Postnatally Diagnosed Conditions Awareness Act.  The bill was signed into law last year and will provide current, reliable information about the services and support networks available for parents who either receive the news that their child may be born or their young child has been diagnosed with a genetic disorder or abnormality.

I understand first-hand how difficult this is for parents.  The news that your child may have a disability is shocking.  The fear of the unknown can be overwhelming and we need to ensure that parents are not only told about the risks, but are also given information about the potential, resources and support that exists.

I believe the law, known as the Kennedy-Brownback bill, is an important step forward.

Next, access to a top-notch education should be available to all citizens in this country, including those with Down syndrome and other special needs.  As a member of the House Education and Labor Committee, I believe this year’s reauthorization of No Child Left Behind is a real opportunity to improve special education in our country. 

Another priority is the passage of the Achieving Better Life Experience (ABLE) accounts, a bill introduced by Senator Bob Casey and Representative Ander Crenshaw, to encourage individuals with disabilities and their families to save, tax-free, for disability related expenses.  Similar to college savings accounts or IRAs that let people put aside funds for education, medical needs, and retirement, ABLE accounts would allow people with disabilities to become more financially independent and to save money while reducing their dependency on public benefits.

When we launched the Congressional Down Syndrome Caucus last May, the National Institutes of Health presented its 10 year research plan for Down syndrome.  It’s especially encouraging to see the coordination and emphasis on cross disciplinary institutes.  For example, National Heart, Lung and Blood Institute will support studies of the genes that contribute to sleep apnea and heart malformations common with Down syndrome and National Institute of Aging as Alzheimer’s will study the 21st chromosome, duplicate in people with Down syndrome, and now where the Alzheimer’s gene has been isolated.  This research has the potential to help those with Down syndrome as well as many others with associated impacts related to the 21st chromosome. 

Now, we need to fund the plan.  NIH funding has decreased from $23 million in 2003 to $17 million in 2008.  With nearly 400,000 people with Down syndrome in America, this means only $40 is committed in research for each person with Down syndrome compared to $3,000 for each person with Cystic Fibrosis or $1,433 for each person with ALS.  We are encouraging NIH to use some of the $10 billion it received as part of the American Investment and Recovery Act on funding the Down syndrome research plan. 

These are some of the first steps we need to take to help individuals with disabilities have an opportunity to lead full, happy and productive lives.  Because of my personal experiences, I have made this my personal goal. 

Seeing so many people come to Washington, D.C. with such energy and strength for the Down Syndrome Affiliates in Action conference made me optimistic about the future for Cole, and for the thousands of others with Down syndrome and others with disabilities.

–By Congresswoman Cathy McMorris Rodgers

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