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Down syndrome advocates lobby on Capitol Hill

March 4th, 2009

DSAIA on Capitol Hill with Reps. Cathy McMorris Rogers and Ander Crenshaw, photo by Jeffrey Pomranka

By Patricia E. Bauer

When more than 300 Down syndrome advocates from 35 states gathered at the U.S. Capitol last week, their stated mission was to seek federal funds to help spread accurate information about prenatally diagnosed disabilities.

But for many the goal was much more personal: To put a human face on a condition they feel is misunderstood and even stigmatized by the general public.

Recent advances in medical technology, coupled with strong business incentives, have been driving a broad public perception that Down syndrome is largely preventable through prenatal diagnosis and selective termination.

These advocates, from 85 local groups and representing some 400,000 Americans with the condition, hoped to leave their elected representatives with a different impression. They want legislators to see their loved ones with Down syndrome as valuable, worthwhile people who are respected and cherished members of happy families.

“We want them to know that we are here, and we are striving to make sure that our kids are part of our community — not hidden away like in the past,” said Theresa Grant, a mom from Reno, Nevada, whose 11-year-old son Elliott has Down syndrome. “They are making strides and they are succeeding in school.”

Rep. Patrick Kennedy and Lydia Orso of the Down Syndrome Association of Greater St. Louis, photo by Jeffrey Pomranka “We can stand up for ourselves,” said Lydia Orso, a young woman with Down syndrome from St. Louis, at left with Rep. Patrick Kennedy (D-RI).  “We can be advocates and have a voice.”

Kennedy Brownback Bill

Representatives of Down Syndrome Affiliates in Action (DSAIA) called on Congress to allocate $25 million over five years to implement the Prenatally and Postnatally Diagnosed Conditions Awareness Act, known as the Kennedy Brownback Bill.

The bipartisan measure calls for providing accurate, up-to-date information and support for parents who receive a diagnosis of Down syndrome or other disabilities such as spina bifida or cystic fibrosis either prenatally or up to a year after the birth of their child. It passed passed both the House and Senate without dissent and was signed into law last fall.

The intent of the measure was to create a sensitive and coherent process for delivering factual information about a diagnosis of disability. Down syndrome advocates say medical professionals too often give prospective parents inaccurate and incomplete information or none at all, leaving parents anxious and fueling irrational bias against people who have the condition.

The measure provides for compiling data about the lives and development of people with Down syndrome and other conditions, as well as providing support to parents and assembling a list of families who wish to adopt children with disabilities.

Front row: Jessica Green, Mark Hublar, Lisa Tokarz Gutierrez; Back row: Joe Meares, Nina Fuller, Kathy Ratkiewicz, Sen. Sam Brownback

“It’s important to understand that this is not about pro-life or pro-choice” but rather about providing parents with needed data and support, said Indianapolis dad Joe Meares (back row, left), whose daughter has Down syndrome.

“The worst presenters of a diagnosis of Down syndrome unfortunately today are medical professionals because there are no mechanisms to train them, to teach them how to deliver that diagnosis and to present the options, all of the options.”

It is estimated that some 90 percent of American women who receive a prenatal diagnosis of Down syndrome go on to have an abortion.

Prenatal testing

The appearance on Capitol Hill last week of faces bearing the signs of Down syndrome was particularly timely, coming just days after a front-page story in the Washington Post heralded the expected arrival of a new generation of prenatal tests for the genetic condition.

A handful of biotech companies are competing to be the first to unveil a safer test that would spot fetuses with the condition earlier in pregnancy. Whichever company wins is expected to gain a strong advantage in the multi-billion dollar international market in prenatal testing.

News of the tests has sparked a renewed discussion about prenatal testing and selective termination for Down syndrome, a condition in which people generally have three copies of the 21st chromosome instead of the usual two. It is most commonly associated with mild to moderate intellectual impairment and a higher risk of some medical problems, including heart defects.

Amy Allison, executive director of Down Syndrome Guild of Greater Kansas City, with Rep. Cathy McMorris Rodgers (R-WA)Advances in medical care and improved access to education have dramatically improved the outlook for people with Down syndrome in recent years. For example, their average lifespan has increased from 25 years in 1983 to nearly 60 years today, and doctors say it is rising.

Following the passage of federal law guaranteeing access to education, people with Down syndrome are increasingly completing high school, working, volunteering, and seeking to lead productive and purposeful lives in their communities. Disability advocates say these gains have not been adequately documented, and have been largely overlooked by the public.

Tax-Free Accounts

DSAIA members also pushed for a bill to encourage individuals with disabilities and their families to save, tax-free, for disability-related expenses. Called the ABLE Accounts Act, the legislation is intended to help people with all kinds of disabilities become more financially independent. It would allow them to save money without jeopardizing government disability benefits.

The accounts would be similar to college savings accounts, IRA’s, and other instruments that let people to put aside funds tax-free for education, medical needs, and retirement. Presently, people with disabilities may not use such accounts because to do so would jeopardize their federal disability benefits. Under federal rules, they lose eligibility for benefits if their assets exceed $2,000.

Some of the advocates with Down syndrome at DSAIA, photo by Jeffrey Pomranka“I am a productive member of society. I work, volunteer, vote and pay taxes,” said Jessica Green, a young woman with Down syndrome from Indianapolis (fourth from left). “I would like to see Congress support a bill that would help me have a full and meaningful life.”

“We see this as a first step to breaking the cycle of poverty that’s basically been forced on people with disabilities,” said Steve Beck of Fairfax, Virginia, whose nine-year-old daughter Natalie has Down syndrome.

“They want to be able to earn money and save it like everybody else. They have the ability, but restrictions that are placed on them have been preventing them from doing so,” he said.

Lydia Orso and Jessica Green were among about twenty people with Down syndrome who were part of the DSAIA group. They spent a busy day scurrying around Capitol Hill shaking hands, swapping business cards, and meeting with such legislators as Rep. Cathy McMorris Rodgers (R-WA), Sen. Sam Brownback (R-KS), and Rep. Patrick Kennedy (D-RI).
Rep. Cathy McMorris Rogers with advocates Heather Hancock and Craig Blackburn, photo by Sheila Hebein

McMorris Rodgers, herself the mother of a little boy with Down syndrome, had tears in her eyes as she addressed the group at a packed breakfast meeting in the Rayburn Office Building. (At left, with advocates Heather Hancock and Craig Blackburn)

“I’m so thankful to you who have walked this path before me for the tremendous gains that have been made, and the tremendous progress that has been made. And I believe that my son has more opportunities than ever because of many of you in this room who have been plowing this road before me,” she said. “But we still have a lot more to do. That’s why I’m so thrilled that all of you are here.

“It’s important that you are here, and important that you make your voices heard,” she said.

Medical research and health care

The bipartisan Congressional Down Syndrome Caucus, co-chaired by McMorris Rodgers, invited the advocates to present expert testimony on the needs facing Americans with Down syndrome and other disabilities. Among the presentations were stark assessments of the need for improvements in medical research, health care, employment and education.

While advances in medical technology have dramatically improved outcomes for people with Down syndrome, the full benefit of these gains has not been realized because promising medical research on Down syndrome is going unfunded, said Dr. Brian G. Skotko, chair of the clinical advisory board of the National Down Syndrome Society.

Data from the National Institutes of Health shows NIH allocated only $40 for each person with Down syndrome in 2008, far less than its allocation for other medical conditions. By contrast, $3,000 in research money is being allocated for each person with cystic fibrosis, and about $1,500 toward each person with Fragile X syndrome, Skotko said. Both conditions are far less common than Down syndrome, but have better organized lobbying efforts.

Skotko called for an increase in federal funding and collaboration on research into Down syndrome, as well as the creation of a national registry of people with Down syndrome to provide a ready data source for researchers.

He also urged the creation of more specialized clinics to serve the 400,000 Americans with Down syndrome. There are approximately 40 clinics across the country.


Terry Allen, Mark Hublar, Patrick Kennedy, photo by Sheila Hebein

Dr. William E. Kiernan, director of the Institute for Community Inclusion at the University of Massachusetts Boston, reported that people with disabilities are disproportionately likely to be unemployed, isolated, and living in poverty.

Calculated as the number of persons working as part of the total number of persons of working age, he said, only about 36 percent of people with disabilities are working, compared with 70 percent of people without disabilities. For people with intellectual disabilities, the number is even smaller: only about one in four people with intellectual disabilities are working.

Kiernan called on legislators to explore simplifying and streamlining the “convoluted” federal policies that discourage people with disabilities from working, and build expectations that people with disabilities are employable, want to work and deserve to be employed.

“It is unconscionable to think that we would leave three out of four persons with intellectual disabilities standing on the sidelines of the labor force, not allowing them to fulfill their opportunity, their promise, to have what you and I have,” he said.


Ricki Sabia, associate director of the National Down Syndrome Society Policy Center, called for a reevaluation of rules that allow local school districts to divert federal special education funds for other purposes.

The Individuals with Disabilities Education Act (IDEA) allows local districts to divert up to 50 percent of any federal funding they receive that exceeds the amount received in the previous year. Thus, Sabia said, whenever the federal government provides a local district with extra special education money, half of it can be used for purposes other than special education.


Readers, this is where you come in! If you participated in the DSAIA event in Washington, please let me know what I’ve missed. How were those meetings with the legislators? How were you received? Will you be coming back?

Please write and tell me. Just hit the comment button at the end of this post and start typing.

11 Responses to “Down syndrome advocates lobby on Capitol Hill”

  1. Eileen Says:

    Thank you for reporting on this, Pat. Is there someone I can contact to be notified of these events? Would it be the CDSC? (Rep. McMorris?) Thanks.

  2. Sabrina Baker Says:

    I attended the AIA day on the Hill representing the Friends group of Upper East TN. We had a meeting with Congressman Roe. He was very generous with his time and agreed to join the Congressional Down syndrome Caucus. Since he is a former OB/GYN he had a unique perspective.

    We had meetings with Corker and Alexander’s staff. They were polite and listened to us but of course could not make any commitments.

    I left knowing quite a bit more about the political process as well as feeling that we had made some sort of impact that day since there were so many of us. I would love to see this happen every year in Washington D.C. I believe it would make a great impact for individuals with Down syndrome.

  3. Christina Stummer Says:

    I am translating your story into Portuguese for Agencia Inclusive. My work would be easier if I had the text without the photos, though they look great. Could you please email it to me?
    Thank you and congratulations for your enthusiastic advocacy.

  4. Sandy Coleman Says:

    This was a historical day in the awareness and rights movement for Down Syndrome.

    I attended representing families of Martin and St Lucie Counties in Florida. It was a wonderful chance to meet and unite with leaders for all over the U.S. with a common goal.

    Thanks to ALL, especially Amy of Kansas City. This is what it’s all about. I know things are going to happen now and I am committed to do what I can. I am anxious to share all that I learned with families and to encourage them to meet and get to know our local Representatives.

  5. Terri Leyton Says:

    It was an amazing event. My group visited with four North Carolina delegates and we came away with a victory. Senator Richard Burr (R-NC) has signed on as a co-sponsor of the ABLE Act. That is a gratifying feeling! Thanks to all who advocated on behalf of people with Down syndrome.

  6. Jawanda Mast Says:

    I also wanted to comment on the opportunity to meet Rep. Roe from East TN. He is an ob-gyn and came to our Legislative Breakfast on Thurs.

    I was able to meet him and learn that he was friends with my own personal ob-gyn who lives in another part of the state. We were able to introduce him to his constituents who are responsible for one the DS support groups in his area. I believe he also agreed to join the Down Syndrome Caucus.

    I now live in Kansas City and it was very meaningful to me to get to meet several of the staffers in our political offices. The most fun, was getting to actually spend time with Senator Brownback who has done so much for the Down syndrome community.

    I will say it again! What a day!

  7. Jacqui Hawkins Says:

    I was unable to attend this year, but being a part of last year’s event, I know this is an extremely dedicated group to raise awareness about Down Syndrome and I enjoyed reading all about how awesome I knew it would be! Thanks! :)

  8. Amy Allison Says:

    Thank you for your fantastic coverage of the DS Affiliates in Action Advocacy Day on the Hill.

    One of our asks on the Hill was for members to join the Congressional Down Syndrome Caucus (CDSC). When we reconvened on Friday morning we asked AIA attendees to indicate if their member agreed to join and by show of hands it appears we may have 15-20 more members of the CDSC due to our strong efforts on the Hill.

    An estimated 175-200 meetings were held with legislators. This is a wonderful start to what should become an annual tradition of Down syndrome affiliate leaders going to Washington DC to advance legislative priorities which will improve the lives of people with Down syndrome.

    KUDOS to every organization who sent leaders to the Hill. Our voice can and will be heard if we continue to work together!

    (Editor’s note: And kudos to Amy for organizing the event! That’s Amy in the fourth photo down from the top, standing with Rep. Cathy McMorris Rodgers (R-WA), co-chair of the Congressional Down Syndrome Caucus.)

  9. Amy Van Bergen Says:

    I was there with another parent from our Orlando-area group and we partnered with our fellow Floridians — from the Panhandle, Jacksonville, Fun Coast and Gold Coast areas — to see all of our representatives and both Senators’ staff.

    We had a particularly warm welcome from Rep. Crenshaw (Jacksonville) who sponsored the tax-free accounts bill, referred to now as ABLE. His chief of staff even told us that after he dropped the bill, Rep. Crenshaw waited to receive the bill number … his Chief indicated that he had NEVER known any representative to do that in his 15+ years on the Hill. I believe he did so because he knew there were 300 of us waiting to share the news!

    We left AIA and our Day on the Hill feeling like together, we can accomplish ANYTHING!

  10. Nancy Iannone Says:

    I could not go — but thank you Pat for the very informative report!

  11. Jawanda Mast Says:

    What a day! Great strides for people with Down syndrome!

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

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