Madam Speaker, I rise today in strong support for S. 1810, the Prenatally and Postnatally Diagnosed Conditions Awareness Act. I believe this bill is a positive step forward in helping new and expecting parents of children with special needs get accurate information on the real potential of their children. This sort of information is critical at the time of diagnosis.
This legislation is very important to me because I am the proud mother of an amazing baby boy – Cole McMorris Rodgers. Two years ago, my life changed when I found out I was expecting my first child. It changed even more drastically when Cole was born a month early and was diagnosed with Down syndrome. Cole turned one year old at the end of April, and looking back on the last year, I can’t imagine my life without him.
Everywhere I go, I’ve met people who share their stories about a loved one who has special needs and they always share with me the positive impact that this person had in their life. It has helped me see a glimpse of the amazing impact my son is going to have on our lives and in this world.
Because of my personal experiences with my son Cole, I have made it my personal goal to increase awareness of the capabilities, value, and worth of people with disabilities. I am committed to helping families and individuals with disabilities have an opportunity to lead full, happy and productive lives.
Today, because of the advances in technology, we offer diagnosis for Down syndrome prenatally and soon we will be able to diagnose other genetic disorders and diseases prenatally. The question for every person in America is, “What are we going to do with this information and help parents when they receive the news of a diagnosis?”
The bill we are considering today will help parents who either receive the news that their child may be born with a disability, or their child has been diagnosed from birth up until twelve months of age, with current and reliable information about the many services and support networks available. This is a distressing and confusing time for parents of special children and it is so important for them to know that they are not alone, others have struggled with the same questions, and answers are available.
When new or expecting parents are told that their child will have a disability it is a very difficult and sometimes overwhelming experience. And yet, a study by Louis Harris and Associates found that medical professionals are more likely than any other group to underestimate the quality of life experienced by people with disabilities.
This situation is not due to a lack of will by the parent support groups and disability advocacy groups. These organizations have tried countless ways to reach out to parents who have received prenatal diagnoses of various conditions. Unfortunately, many geneticists and OB-GYNs believe that the parents of children with these conditions and the adults living with these conditions are biased.
Specifically, this bill provides for the establishment of a resource telephone hotline, a web site, and 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. S. 1810 also provides for the expansion and development of national and local parent support programs, so that they can more effectively reach out to new parents. In addition, this bill establishes a national registry of parents willing to adopt children with these disabilities. Finally, it establishes awareness and education programs for health care providers who give parents the results of these tests.
I applaud the work of Senators Brownback and Kennedy for their great work on this important bill. Their commitment to the disability community is commendable. I urge my collogues on both sides of the aisle to join me in support of passage of S. 1810, the Prenatally and Postnatally Diagnosed Conditions Awareness Act. I hope that this bill will provide these parents with the information and support they so desperately need during a critical time.