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.”
“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.
“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.
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.
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.
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.
“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).
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.
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.