NEWS RELEASE
FOR IMMEDIATE RELEASE
May 5, 2014
Contact: Heather Sachs
Maryland Down syndrome Advocacy Coalition
Phone: (301) 580-8005
Email: heather@dsnmc.org
GOVERNOR O’MALLEY SIGNS LAW EXPANDING ACCESS TO DOWN SYNDROME
INFORMATION
Annapolis, MD – Governor Martin O’Malley signed into law Senate Bill 654 requiring
the Maryland Department of Health and Mental Hygiene (DHMH) to provide up-todate, evidence-based, written information about Down syndrome to health care
providers for parents who receive a prenatal or postnatal diagnosis of Down
syndrome. DHMH will also be required to provide contact information for national
and local Down syndrome organizations that provide education, support programs
and services. Under this law, all Maryland health care providers will be authorized
to provide this information to patients who receive a Down syndrome diagnosis.
This bill was introduced and championed by Senator Thomas “Mac” Middleton and
was co-sponsored by the entire Senate Finance Committee. It passed unanimously
in the Senate and the House of Delegates. Maryland now joins Massachusetts,
Kentucky, Missouri, Virginia and Delaware who have passed similar legislation.
Down syndrome advocates across the State joined together along with the Maryland
Catholic Conference in a grassroots effort to get this legislation passed. Parents of
children with Down syndrome from nearly every Maryland county shared
disturbing stories in oral and written testimony about receiving archaic and
offensive materials from their health care providers in recent years that used words
like “mongoloid” and “retarded” and encouraged institutionalization. Heather
Sachs, member of the Maryland Down syndrome Advocacy Coalition (MDAC) and
parent of a daughter with Down syndrome, helped to lead the effort and is elated
over the bill’s passage. Sachs says, “Parents deserve to be provided with written
information about Down syndrome that is accurate and up-to-date, and with contact
information for local support organizations that can help them on their journey.
Since DHMH will now be required to provide this information as a result of this bill,
health care providers will now have a reliable, centralized location where they can
go to download materials from the DHMH website or request written materials to
give to their patients. The Down syndrome community looks forward to
collaborating with DHMH and Maryland health care providers to get the best
information possible out to all Maryland families who receive a Down syndrome
diagnosis.”
MDAC Co-Chair Mike McLaughlin and his wife Jackie are also parents of a child with
Down syndrome and were fortunate to receive good information along with a
prenatal diagnosis. But as McLaughlin says, “It should not be luck that determines
whether people get good information; this law will ensure that it is available to all.”
The National Down Syndrome Society is thrilled that Maryland has passed this
important legislation. "Maryland joins several other states that have adopted laws
that promote the dissemination of accurate, up-to-date information about Down
syndrome to women and families that receive a prenatal or postnatal diagnosis of
Down syndrome. As the national advocate for the value, acceptance and inclusion of
people with Down syndrome, we envision a world in which all people with Down
syndrome have the opportunity to enhance their quality of life, realize their life
aspirations and become valued members of welcoming communities. It is our hope
that accurate information about Down syndrome always be given to all women and
families by their providers so that families can start building a promising future
together immediately."-Sara Hart Weir, Vice President of Advocacy & Affiliate
Relations, National Down Syndrome Society .
The Maryland Catholic Conference applauds the hard work by all of the advocates to
raise the standard of health care for parents and children in Maryland. “The
information and materials put forth by this community will give parents in
Maryland the information they need to make informed decisions and have accurate
and reliable resources at their fingertips.” –Andrea Garvey, Associate Director of the
Maryland Catholic Conference.
Some examples of the informational materials that the Maryland Down syndrome
Advocacy Coalition hopes DHMH will provide are The Joseph P. Kennedy, Jr.
Foundations Understanding a Down Syndrome Diagnosis, found at:
www.lettercase.org and the National Down Syndrome Society’s guide, A Promising
Future Together: A Guide for New and Expectant Parents, found at:
http://www.ndss.org/Global/NDSS%20NEW%20PARENTS%20GUIDE_web.pdf
The Maryland Down syndrome Advocacy Coalition serves over 2000 families across
Maryland and is comprised of representatives from all local Maryland Down
syndrome support groups, including 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 in Frederick County (FRIENDS), The Parents of
Children with Down Syndrome of Prince George’s County (PODS) and The Down
Syndrome Association of Southern Maryland.