Without any federal support, the Massachusetts Down Syndrome Congress has launched a nationwide first call program for new and expectant parents learning their child has Down syndrome. Read on about this excellent resources and why it launches over a decade after Congress authorized exactly this resource by a unanimous vote.
A public policy history lesson
The printed and on-line resources written about in the previous section were spawned in part by a bipartisan effort to improve how new and expectant parents experienced receiving a Down syndrome diagnosis.
In 2005, Dr. Brian Skotko published two significant studies. He surveyed for one study parents who had received a postnatal diagnosis of Down syndrome and surveyed parents who had received a prenatal diagnosis of Down syndrome for the other study. Despite the range of experiences covering decades, depending on the age of the child with Down syndrome when the parents answered, his findings found, unfortunately, for both groups, the experience was overwhelmingly negative.
While there were some parents who reported a positive experience, being told compassionately by their healthcare provider and being provided helpful support resources, they were the exception that proved the rule. Instead, as subsequent studies have sadly continued to report, the majority of parents are told in apologetic, negative terms and given very little, if any, information, much of which is outdated and negative. As I’ve recounted in Chapter One, my experience would have supported both the positive findings and the negative ones, depending on which healthcare provider was talking to us.
Prompted by Dr. Skotko’s studies, the staff of then-Senators Ted Kennedy (D-MA) and Sam Brownback (R-KS) began working on a piece of bipartisan legislation to improve the diagnosis experience. Madeleine Will, whose son happens to have Down syndrome, was then the policy director for the National Down Syndrome Society. Will along with David Hoppe, a fellow parent and long-time Capitol Hill staffer and lobbyist, helped craft the language and shepherd the bill through committees to arrive at a vote.
The bill was titled the “Prenatally and Postnatally Conditions Awareness Act,” but that mouthful was regularly replaced with the names of the two lead co-sponsors, i.e. the “Kennedy-Brownback Act.” As I both joked and made the point when presenting about the bill, while prenatal genetic testing is inexorably intertwined with the issue of abortion, if those two senators could agree on a piece of legislation, it certainly wasn’t about abortion. Senator Kennedy was as staunchly pro-choice as Senator Brownback was pro-life.
Rather, as was a tagline of mine in my early presentations to various organizations, improving the way prenatal testing and diagnoses were administered was neither pro-choice nor pro-life; it was pro-information. And, this was the goal of Kennedy-Brownback.
In its initial version, the act mandated that healthcare providers provide accurate, balanced, up-to-date information that would be generated through federal funding of such a brochure for a variety of conditions. Further, the act provided funding to assist support organizations in their missions of supporting these families. And, it funded a national toll-free 1-800 call-in line so families could reach out wherever they were and receive the support called for by Dr. Skotko’s studies and funded by the Act.
The bill being a political act, and happening in a divided government where it was the last year of President George W. Bush’s term and the Democrats controlled Congress, Kennedy-Brownback got watered down. Rather than a mandate requiring funding for resources that healthcare providers were required to provide with a pre- or post-natal Down syndrome diagnosis, it morphed through revision to simply authorizing the Secretary of Health & Human Services to allocate funding for developing the recognized needed resources in the bill.
With this watered-down version, and in the wake of the financial meltdown that led to the Great Recession of 2008, both Houses of Congress passed the Kennedy-Brownback Act unanimously by voice vote. President Bush signed it into law in October, fitting as that is National Down Syndrome Awareness Month.
And, then, very little happened.
Secretary Sebelius, former Governor of Sen. Brownback’s home state of Kansas, though decidedly on the opposite side of the political spectrum, initially authorized a two-year study funded with $400,000 to develop the written resources. I know of this because I was a member of the team assembled by the organization that received the federal grant, Genetic Alliance. We held a few conference calls, and, then, Genetic Alliance was told the grant would be cut in half both time-wise and funding-wise.
After a unanimous passage of a bipartisan piece of legislation, in the end, $200,000 was granted to a single organization that had its budget and timeline cut in half and nothing happened. No other funding has been provided.
We’ll do it ourselves
As covered in the section on the Lettercase booklet and Diagnosis to Delivery, Stephanie Meredith, Nancy Iannone, and their band of contributors and reviewers did not wait for the federal funding. Instead, they pressed on and created the resources now recommended by ACOG, ACMG, and NSGC to be given to new and expectant moms when learning their child has Down syndrome.
Similarly, Kennedy-Brownback also called for training programs for medical professionals. This has been fulfilled in the Brighter Tomorrows project led by Harold Kleinert.
Unlike the written resources and medical training, which were already in production during the passage of Kennedy-Brownback, there was no existing national toll free line. It is my recollection that at one point the National Down Syndrome Society did attempt to have such a line, but no longer. Similarly, the National Down Syndrome Congress (both organizations discussed in the following section) fields calls from across the nation and even internationally, but during business hours.
To demonstrate the need of some parents for making contact with a fellow parent, I am occasionally contacted by new and expectant parents who find me via my blog. Most often it is by expectant couples receiving a cell free DNA test result wondering what their true chances are of having a child with Down syndrome. I’m conscientious about advising them of my relative knowledge and professional limitations, in that I’m a lawyer with a bioethics Masters degree, but I am not a trained healthcare provider. Yet, still they call me, instead of their health care team.
Well, finally, there are trained individuals available on a nationwide basis to field the inquiries of new and expectant parents.
The Massachusetts Down Syndrome Congress has been the gold standard of local organization “First Call” programs. So named because they often are the “first call” a physician or a parent may call when they learn of a Down syndrome diagnosis. For years, this excellent program has been helmed by Sarah Cullen. I have had the pleasure of presenting on panels with Sarah for years, counseling and training other local Down syndrome organizations on how to set up and run a responsible First Call and medical outreach program.
Well, the MDSC has now committed the resources of time and staff to provide for that national call center recognized in 2008 in the Kennedy-Brownback Act. And, what is more, as part of MDSC’s First Call program, it has also established an on-line training center for other local organizations to train their staff and volunteers to counsel and advise parents in one of their more difficult times, processing an unexpected diagnosis.
The Kennedy-Brownback Act called for accurate written (and now online) resources; medical training; and a national call center. Each of these has been fulfilled by the dent of effort of committed scholars, advocates, and compassionate parents. Next, we’ll discuss one of the most compassionate resources called for by Kennedy-Brownback that also has been fulfilled and is surprising to many who learn of it for the first time.
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