How Are Birth Rates Within Your Organization for 2013?

Fri, June 28, 2013 3:04 PM | Anonymous member (Administrator)

by: Mark W. Leach, J.D., M.A.

How many 2013 births has your group welcomed so far this year?  This question is prompted by some rather concerning news. A staffer of a local Down syndrome organization reported in a recent Informed Decision-Making Task Force (IDMTF) call that their organization had not seen numbers like 2013's in many years. 

The staffer shared that their organization typically welcomes on average two to three new births each month.  However, in 2013, they have had only two. The staffer also provided numbers on a month-by-month basis so as to compare numbers from the last few years. The lines in the graph below represent the number of referrals per month:


In case the graph is not clear, the number of referrals for 2013 has flat-lined.


While these figures are concerning for this local organization, they may not be reflective of the nationwide experience.  The National Down Syndrome Adoption Network (NDSAN) also shared information in this regard. Over the most recent years, the NDSAN has grown in both its public profile and number of calls, with 2012 being a record setting year. The first three weeks of May, the phone did not ring at NDSAN for a placement of a child with Down syndrome in the United States. According to Robin Steele, NDSAN's long-time director, NDSAN has noticed a slight decline.


Therefore, these two data points-a falling off of referrals to a local group, and a falling off of calls to the NDSAN nationally-have prompted the independent IDMTF to request input from Down syndrome organizations across the country. The IDMTF is requesting numbers related to birth referrals by July 15, 2013.  

Please respond to this post with the following numbers. In an effort to provide some standardization, these are the numbers we are looking for:

# of birth referrals

# of prenatal referrals that resulted in births

# of prenatal referrals that ended in terminations

# of prenatal referrals whose result is unknown





As an example, let’s take the Down Syndrome Association of Awesomeness (DSAA). Here’s how the DSAA could report its statistics for 2013 current as of May:

# of birth referrals

# of prenatal referrals that resulted in births

# of prenatal referrals that ended in terminations

# of prenatal referrals whose result is unkown





These numbers would reflect that in 2013, so far, DSAA has had 8 new births, 4 of which had contacted DSAA with a prenatal result. There were also two other prenatal referrals DSAA received: one DSAA knows ended in termination and the other one the DSAA never heard back from.

In order to place these numbers in context, we would appreciate you responding with your numbers for at least the last three years, if you have them. Again, using DSAA as an example, it did not collect the number of prenatal referrals prior to 2013, but it did track total number of new births. So, DSAA would also report:

2012: total births, 28

2011: 26

2010: 29

By receiving these numbers, we can then see that for the last three years, DSAA has averaged 27.7 births; for 2013, DSAA is on pace for reaching 19 births for 2013.

If you do not have all of the requested numbers, do not let that stop you from responding. Please respond with the statistics you have concerning births for your area.

You can e-mail your statistics to Mark Leach. Mark can be reached at We ask that you respond by Monday, July 15, 2013. This will be before the next IDMTF call where Mark will share the numbers and then provide a follow-up blog post with the results.

Mark finished his term on the DSAIA board this year. He blogs at

I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio


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