ANSWERS TO CONCERNS ABOUT THE DOWN SYNDROME INFORMATION BILL (SB-654)

It has come to the attention of the Maryland Down syndrome Advocacy Coalition (MDAC) that there are some concerns about the Down Syndrome Information Bill (SB-654) that is currently before the Maryland State Senate. The National Down Syndrome Society, MDAC, and thousands of Maryland families support this bill and would like to address the concerns noted below. Please contact [NAME AND EMAIL] with additional concerns.

Why is this bill condition-specific? Won’t it open the door for other disability groups to bring similar legislation?

  • This bill is limited to Down syndrome because: (1) Down syndrome is the most common genetic condition (1 in 691 births); (2) there ALREADY EXISTS a cadre of accurate, up-to-date information about Down syndrome that has been approved by the national Down syndrome groups and prepared with the assistance of medical groups such as The American Congress of Obstetricians and Gynecologists and The American College of Medical Genetics and Genomics, among others.
  • Other states such as Massachusetts (H.3825, 2011) have already passed the same Down syndrome-specific legislation.
  • If other disability groups prepare their own materials in the same organized fashion with the support of their national groups and the broader medical community, we hope that this bill will serve as a trailblazer to get the most accurate and up-do-date information to families receiving any type of diagnosis. Maryland families deserve to receive state-of-the-art information if it is developed in the same professional and collaborative manner. But this bill only addresses Down syndrome because these materials have already been widely accepted by the disability community and medical experts as the “gold standard” materials about this condition.

Doesn’t this information become outdated?

  • MDAC has been assured by the creators of the Down syndrome materials that we are seeking to distribute that it is updated regularly, on an almost yearly basis. For example, the Lettercase books ( were created in 2008, revised in 2009 with input from the Kennedy Foundation First Call committee, updated again in 2010 with input from the Down Syndrome Consensus Group (which includes medical organizations), and then updated again in Fall 2013. Other materials (Diagnosis to Delivery and Brighter Tomorrows) were updated in 2012 and are scheduled to be updated again in Spring 2014.
  • As this information is updated, it will be shared with the Department of Health for them to post on their website and share with health care providers. The Department of Health needs to lead the charge in making sure that Maryland families receive the best information possible.
  • The bill does not require the Department of Health to update these materials. The national organizations that update these materials will regularly share their updates. The Department of Health is a conduit to get this much-needed information out to health care providers to give to patients.

Why does distribution of this information have to be a requirement? Why not change the language of the bill from “shall distribute” to “may distribute”?

  • The wealth of oral and written testimony, with anecdotes from every county in Maryland and a wide array of hospitals and health care providers, clearly shows that this information is NOT being distributed to patients who receive a diagnosis of Down syndrome. We currently exist in a state of “may” and it is not working.
  • Under the current status quo of “may distribute”, patients are routinely receiving materials that use the words “mongoloid”, “retarded”, falsely state that people with Down syndrome will need to be institutionalized and will never learn to walk, talk, read or write, and they are receiving very little (or outdated) information about local support groups.

The Maryland Down syndrome Advocacy Coalition ** The Down Syndrome Network of Montgomery County ** The Down Syndrome Connection of Anne Arundel County**The Chesapeake Parent Down Syndrome Group**The Family Resource, Information & Education Network for Down Syndrome, Frederick County (FRIENDS)**Parents of Children with Down Syndrome (PODS) of Prince George’s County**Down Syndrome Association of Southern Maryland