Better News For New Parents: It's the Law
After three years of advocacy, the U.S. Senate and the U.S. House of Representatives passed S. 1810, the Prenatally and Postnatally Diagnosed Conditions Awareness Act. This legislation is designed to ensure that women receiving a positive diagnosis of Down syndrome during pregnancy and new parents receiving a diagnosis of Down syndrome shortly after birth, will receive up-to-date information about this condition. In addition to the medical information and information about expectations and treatments, parents will also receive referrals to support service including Web sites, parent support groups, adoption registries and other programs specific to Down syndrome.
This legislation was co-sponsored by U.S. Senators Edward Kennedy (D-MA) and Sam Brownback (R-KS) and the bill passed the Senate by unanimous consent on September 23rd, 2008. While co-sponsored by the senators, the idea for this legislation was originally proposed by both the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC) in response to what they feel was inaccurate and limited information being provided by health care providers. Given the dramatic changes in life expectancy, development, and accomplishments of people with Down syndrome, they felt that it was necessary for all healthcare providers to update their knowledge about what people with Down syndrome can do. By including a wide variety of resources, they hope that new parents will receive a much more balanced picture of what to expect from a child with Down syndrome.
Did you receive accurate information from your healthcare provider? What do you know now that you wish you had known then?
Comments
my daughter was prenatallydiagnosed with 21 nobody told us how mutch love and joy she has created in our lives. we went throw 22weeks of insanty do to ingores
Hi Jerry – Unfortunately, I think that your experience is an all too common one. Health professionals tend to be rather obsessed by the health implications (after all – that is there job) and often forget about the joys of parenting. I think that every parent should meet with health care professionals AND touch base withe parents in their situation. It would give them a much more balanced picture of what parenting a child with special needs will be like.