[Congressional Record (Bound Edition), Volume 154 (2008), Part 2]
[Senate]
[Pages 2720-2721]
[From the U.S. Government Publishing Office, www.gpo.gov]




     PRENATALLY AND POSTNATALLY DIAGNOSED CONDITIONS AWARENESS ACT

  Mr. BROWNBACK. Mr. President, I am excited and encouraged that the 
Committee on Health, Education, Labor, and Pension today voted 
unanimously to pass the Prenatally and Postnatally Diagnosed Conditions 
Awareness Act. This legislation will help parents receiving the news 
that their unborn child may be born with a disability by supplying them 
with current and reliable information about the many services and 
support networks available. This information will also be made 
available to parents whose children were diagnosed at birth or up until 
12 months of age.
  The American College of Obstetricians and Gynecologists now 
recommends that the screening procedure used to detect Downsyndrome be 
offered to all pregnant women, not just those over the age of 35, as 
was recommended in the past. According to the American Journal of 
Medical Genetics, 80-90 percent of patients who are told that the child 
they are carrying has Downsyndrome choose to

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have abortions. The percentage is similarly high for children with 
other prenatally diagnosable conditions. A recent study by Prenatal 
Diagnosis actually puts the figure at between 91 to 93 percent.
  I believe that one of the main reasons for these disturbingly high 
figures is that many people in society still believe the outdated 
stereotypes and misconceptions that continue to exist about people with 
disabilities. In a study done by Louis Harris and Associates, the vast 
majority of adults with even the most severe disabilities reported 
being ``very satisfied'' or ``somewhat satisfied'' with their lives. 
The same study shows that there is virtually no difference between the 
proportion of Americans with disabilities and those without who are 
married and who have children. Many people with even the most severe 
disabilities live independently, have jobs, get married, have children, 
and pay taxes.
  Parent support groups and disability advocacy groups have tried to 
reach out to parents who have received prenatal diagnoses of various 
conditions, but they often have difficulty getting practical 
information about raising a child with a disability and information 
about available services and resources to new and expecting parents. 
This bill will help to remediate this situation in five concrete ways.
  First, the bill establishes a toll-free resource telephone hotline 
parents can call after they have been given a prenatal or postnatal 
diagnosis for their child. The bill also calls for the expansion of the 
leading information clearinghouse on disability, so that it can more 
effectively provide parents with accurate, up-to-date information on 
their child's condition along with available resources and services. 
The bill also provides for the expansion and development of national 
and local parent support programs and disability advocacy groups, so 
that they can more effectively reach out to new parents. A national 
registry of parents willing to adopt children with these disabilities 
would also be established under this bill. Finally, this bill will help 
create awareness and education programs for health care providers who 
give parents the results of these tests.
  It is difficult, sometimes overwhelming, for new and expecting 
parents to receive the news that their new baby or their unborn child 
will have a disability. I hope that this bill will provide these 
parents with the information and support they so desperately need 
during this critical time. I hope this information will encourage 
parents that their child can live a meaningful and fulfilling life and 
that this bill will heighten society's awareness of the capabilities 
value and worth of people with disabilities.
  I would like to thank Senator Kennedy, Senator Enzi, and all other 
members of the HELP Committee who have worked so diligently with my 
office to get this important legislation past the HELP Committee. I am 
hopeful that this bill will soon receive consideration by the full 
Senate. The quicker my colleagues and I move to pass this bill, the 
more people we can help with these critical services and information.

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