Down Syndrome Community Continues to Make Progress

On July 18, I had the privilege of delivering the keynote address at the National Down Syndrome Congress’ National Convention where about 3,000 members of the Down syndrome community gathered to learn and share from each other.  I was also humbled to receive their President's Award.  Then, three days later, I had the opportunity to address the American Association of People with Disabilities, where Rep. Patrick Kennedy and I were honored with their “Justice for All” Award. 

In my two speeches, I talked about the Congressional Down Syndrome Caucus and our recent efforts to increase funding for Down syndrome research, improve education for children with Down syndrome, and enhance opportunities for independent living.   Some of those efforts include:

• H.R. 4247, “The Keeping All Students Safe in Schools Act.” 

This bill – which I introduced with Rep. George Miller, Chairman of the House Education and Labor Committee – confronted the unimaginable situation in many of America’s schools –documented by the General Accounting Office – in which thousands of children with disabilities were traumatized – and some cases, even killed – because of harmful techniques known as “seclusion and restraint.”

Our bill would – for the first time – provide schools with guidance to prevent abusive “seclusion and restraint.”  These protections are similar to those which already exist for children in America’s hospitals.  And while it’s unclear whether the Senate will take up the bill this year, please be assured that I will keep fighting until its enacted.

• Reauthorizing 2 critical educations bills: “No Child Left Behind” and “IDEA” (The “Individuals with Disabilities Education Act”).

Since IDEA was enacted in 2004, it has opened many doors for children with disabilities – but going forward, IDEA needs the promised full federal funding.  And while “No Child Left Behind” has helped keep schools accountable, more can be done to ensure that special ed students are developing their skills to their fullest potential.  As of now, students with Down syndrome and other disabilities are often educated in separate classrooms and are generally excluded from the “National Assessment on Educational Progress.”  This needs to be fixed, and I will work hard in Congress to get it done.

• H.R. 1205, “The Achieving a Better Life Experience Act (ABLE Act).”

We need to help our children maintain or improve their health, independence, and quality of life – but we must do it without jeopardizing their access to benefits. That’s the purpose behind the ABLE Act: To allow parents to save for their children’s future and give kids with disabilities an added layer of security.

The ABLE Act creates a savings instrument for disabled Americans and their families—similar to an IRA— which provides them with the same flexibility, portability, tax advantages and low costs that are available to all other Americans. 

I’m a proud co-sponsor of the ABLE Act.   Right now, it has 185 co-sponsors, including members of both parties. By working together, I’m confident we can get it passed through the House this year!

• H.R. 3656, “The Trisomy 21 Translational Research Parity Act.”

Right now, the federal government’s leading research arm – the National Institutes of Health – spends only $17 million per year on Down syndrome research. That pales in comparison to what NIH spends on most other diseases. 

To generate interest and action, I’ve organized several meetings between the Down Syndrome Caucus and the National Institutes of Health to discuss the discrepancy in funding.  We’re also working with the NIH to meet the goals of a 10-year research plan initiated by Congress.  However, research funding is only half the battle; we also have to address the quality of research. Specifically, we need more basic research – not just clinical research – for Down syndrome. 

The Trisomy 21 bill – which I introduced with Rep. Kennedy and Rep. Pete Sessions – would bridge the gap in Down Syndrome research between medical research and cutting-edge clinical trials.  It would recognize at least 6 Centers of Excellence dedicated specifically to translational research.  And it would create the much-needed bio-bank and registry for the Down syndrome translational research program.  Through these initiatives, we can develop new therapies for children and adults with Down syndrome.

• The Prenatally and Postnatally Diagnosed Conditions Awareness Act

This bill – which I was proud to co-sponsor and became law 2 years ago – will help new and expecting parents of children with special needs get accurate information on the real potential of their children. 

This sort of information is critical at the time of diagnosis.  It is so important for parents to know that others have struggled with their questions, and that answers are available.  And that’s why I’ve been working with the House Appropriations Committee to ensure adequate funding for this program.

Because of the joy my son Cole has brought to me, I am committed to helping people with Down Syndrome – and their families –  lead full, happy and productive lives.

***UPDATE, JULY 26, 2010, ADA ANNIVERSARY***

Like many Americans, today I am celebrating the 20^th Anniversary of the Americans with Disabilities Act (ADA).  The ADA was a landmark bill – one of the most important civil rights achievements in U.S. history – because it gave more than 50 million Americans the opportunity to live the American Dream. 

One of those Americans is my son, Cole, who happened to be born with Down Syndrome.

When Cole was born 3 years ago, the disability community welcomed me and my family with open arms.  With their friendship and support, I’ve found a new focus and passion for being a Member a Congress: To make sure that Cole – and all disabled Americans – have the best opportunities for education, employment, and independent living.

Today, I spoke on the House floor to recognize the ADA anniversary (click here to watch it).  I also spoke at a press conference with some of the leaders of the original ADA law (including Sen. Tom Harkin, Majority Leader Steny Hoyer, former Majority Whip Tony Coehlo, Rep. James Sensenbrenner, and Anthony Imparato, President and CEO of the American Association of People with Disabilities [AAPD]).  At the press conference, we reaffirmed our commitment to fulfilling the promise of the ADA – not just expanding opportunities for people with disabilities, but also empowering them to lead independent, successful lives. 

Last Wednesday, I had the privilege of receiving the AAPD’s “Justice for All Award.”  In my acceptance speech, I said that, “We’ve come a long way in 20 years, but we still have a long way to go.  Let’s use the ADA anniversary as inspiration for creating a ‘more perfect union’ for people with disabilities and all Americans.” 

I look forward to continuing to work with the disability community – a community I’m proud to be a part of – on the issues that are important to us.