By: Mark W. Leach, J.D., M.A. (Bioethics)
At the end of June, the Informed Decision-Making Task Force (IMDTF) asked groups to report their birth statistics for 2013. This request was prompted by one group reporting a 90% reduction in the number of birth referrals it had experienced. Here are what those numbers show:
Overall, of the groups reporting, birth referrals are down by ten percent.
Several points about this report:
Low number of groups reporting
While there are dozens of affiliates across the nation, less than 15 groups responded with their numbers. Aside from a couple on the east coast, the remaining groups were located mostly in the Midwest. These numbers, then, do not reflect a national picture.
Need for consistency in numbers being reported
Very few groups responded with the same set of numbers. This is primarily due to the way the request was made, so this is not meant as a criticism. For future efforts, two statistics will be asked for: the number of birth referrals received each year and, counted as a separate statistic, the number of referrals received for a prenatal test result/diagnosis. With the requests this way, a group should report, for example, receiving 10 referrals for new births and 4 referrals for prenatal diagnosisundefinedeven if 2 of those 4 were counted in the 10 new births and the other 2 prenatally diagnosed babies were not born yet, or born in a different calendar year. This is so there is consistency in the data sets to show simply how many births in a given calendar year and how many referrals were prenatal.
Rising prenatal diagnoses
Affiliates reported supporting more prenatal referrals than ever before. This stands to reason given the advances in prenatal testing, but seeing is believing: our community is quickly becoming one where the parents find out more often than ever prenatally.
When 10% reflects a 40% reduction
A third of the affiliates reported holding steady and being on pace for the same number of referrals as in previous years; the remaining two-thirds all reported a decrease. The number of fewer referrals ranged from one-sixth fewer than previous years to two groups having 40% fewer referrals. This means most groups reporting are seeing fewer new babies being born into their communities.
Despite the overall decrease in births nationwide of all babies, there should be more Down syndrome pregnancies than ever, as the average age of mothers giving birth continues to rise. But no group reported growth. This means that our community may have reached a plateau in the number of new members it will be welcoming on an annual basis and that may represent the high number since most groups are experiencing a reduction in referrals.
Conclusion: the most important statistic for your group’s future
For those groups reporting, again, their numbers are much appreciated. Being Board President of one of these groups, I know seeing the numbers made me understand the situation in my own community. For every affiliate, their future relies not only on identifying new families and reaching out to them, but also for new children to be born into their community. If you are not tracking your birth referrals, your group then lacks a basis for projecting how many members it will be serving in the future.
We recognize that these are birth referrals to local groups that are being tracked, not actual births. It may be the case that families simply are not contacting their local support group as often as they used to. But, knowing that the best information families receive about Down syndrome comes from their local parent support organization, affiliates should be motivated to make sure they are receiving referrals for every birth and prenatal diagnosis.
We hope to ask again for your numbers in January 2014 to find out what your organization experienced in 2013. We look forward to reaching out to you then and hope that you will respond. Doing so will provide a vision of what the future holds for our organizations.
(Mark Leach is contributing as a guest blogger and does not reflect any thoughts/ideas of Down Syndrome Affiliates in Action.)