The measure, now passed, provides that families receiving a prenatal or postnatal diagnosis of Down syndrome or other conditions will be offered accurate and up-to-date information about the nature of the condition and also connected with support services. In addition, a registry of parents willing to adopt children with disabilities will be compiled and maintained.
Down syndrome is a genetic condition that knows no boundaries and appears within all nationalities, socio-economic classes, ethnic groups and races. Most people with Down syndrome have an extra chromosome present in all or some of their cells that alters the course of development for more than six thousand babies born each year in
Local Physician's Research Motivated Establishment of Kennedy-Brownback Bill
Further, the mothers reported that these shortcomings occurred at an emotional time when women are deciding whether or not to continue their pregnancies. Skotko's study remains the largest and most comprehensive study on prenatally diagnosed Down syndrome, to date, and is available at http://www.brianskotko.com. Skotko, who also sits on the Massachusetts Down Syndrome Congress (MDSC) Board of Directors, has a sister with Down syndrome and also co-authored the award-winning book, Common Threads: Celebrating Life with Down Syndrome (Band of Angels Press). After learning the news about the passing of the Kennedy-Brownback bill, which he has actively championed for several years, Skotko said, "Research has shown that physicians often provide an inaccurate, incomplete, and sometimes offensive picture about Down syndrome when first presenting the news to parents. This legislation sets out to change that, and I am pleased by the prospect that new and expectant parents will begin to receive up-to-date information about Down syndrome so that they can make more informed decisions."
Through its statewide 'Parents' First Call' program, the MDSC connects educated parents of children with Down syndrome with parents of babies newly diagnosed with Down syndrome while in utero or at birth. Parent volunteers make themselves and their experience available, while welcoming new parents into a community with similar experience. New parents receive a care package complete with updated information on Down syndrome, a photo calendar, complimentary one-year membership to the MDSC, connections to local support groups, and two books Babies With Down Syndrome and the award-winning book, Common Threads: Celebrating Life with Down Syndrome (Band of Angels Press).
"The passing of the bill is an historic moment for the Down syndrome community at large," said
To gain an accurate view of Down syndrome, the Massachusetts Down Syndrome Congress (MDSC) encourages interested media and community members to join us on
Established in 1983, the Massachusetts Down Syndrome Congress (MDSC) is a non-profit organization dedicated to education about and awareness of Down syndrome. MDSC was founded to provide information, resources and support for families, while advocating for the inclusion of individuals with Down syndrome into all aspects of the community. Additionally, the organization gathers and disseminates the most accurate and timely news relating to Down syndrome to educate the public, while actively and aggressively addressing social policy and legislatively-driven issues alongside state and local human service agencies. More information about MDSC can be found at http://www.mdsc.org, or by calling 1-800-664-MDSC.
SOURCE Massachusetts Down Syndrome Congress