[Congressional Record Volume 154, Number 153 (Thursday, September 25, 2008)]
[House]
[Pages H9918-H9920]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]


[[Page H9918]]
     PRENATALLY AND POSTNATALLY DIAGNOSED CONDITIONS AWARENESS ACT

  Mr. PALLONE. Madam Speaker, I move to suspend the rules and pass the 
Senate bill (S. 1810) to amend the Public Health Service Act to 
increase the provision of scientifically sound information and support 
services to patients receiving a positive test diagnosis for Down's 
syndrome or other prenatally and postnatally diagnosed conditions.
  The Clerk read the title of the Senate bill.
  The text of the Senate bill is as follows:

                                S. 1810

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Prenatally and Postnatally 
     Diagnosed Conditions Awareness Act''.

     SEC. 2. PURPOSES.

       It is the purpose of this Act to--
       (1) increase patient referrals to providers of key support 
     services for women who have received a positive diagnosis for 
     Down syndrome, or other prenatally or postnatally diagnosed 
     conditions, as well as to provide up-to-date information on 
     the range of outcomes for individuals living with the 
     diagnosed condition, including physical, developmental, 
     educational, and psychosocial outcomes;
       (2) strengthen existing networks of support through the 
     Centers for Disease Control and Prevention, the Health 
     Resources and Services Administration, and other patient and 
     provider outreach programs; and
       (3) ensure that patients receive up-to-date, evidence-based 
     information about the accuracy of the test.

     SEC. 3. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT.

       Part P of title III of the Public Health Service Act (42 
     U.S.C. 280g et seq.) is amended by adding at the end the 
     following:

     ``SEC. 399R. SUPPORT FOR PATIENTS RECEIVING A POSITIVE 
                   DIAGNOSIS OF DOWN SYNDROME OR OTHER PRENATALLY 
                   OR POSTNATALLY DIAGNOSED CONDITIONS.

       ``(a) Definitions.--In this section:
       ``(1) Down syndrome.--The term `Down syndrome' refers to a 
     chromosomal disorder caused by an error in cell division that 
     results in the presence of an extra whole or partial copy of 
     chromosome 21.
       ``(2) Health care provider.--The term `health care 
     provider' means any person or entity required by State or 
     Federal law or regulation to be licensed, registered, or 
     certified to provide health care services, and who is so 
     licensed, registered, or certified.
       ``(3) Postnatally diagnosed condition.--The term 
     `postnatally diagnosed condition' means any health condition 
     identified during the 12-month period beginning at birth.
       ``(4) Prenatally diagnosed condition.--The term `prenatally 
     diagnosed condition' means any fetal health condition 
     identified by prenatal genetic testing or prenatal screening 
     procedures.
       ``(5) Prenatal test.--The term `prenatal test' means 
     diagnostic or screening tests offered to pregnant women 
     seeking routine prenatal care that are administered on a 
     required or recommended basis by a health care provider based 
     on medical history, family background, ethnic background, 
     previous test results, or other risk factors.
       ``(b) Information and Support Services.--
       ``(1) In general.--The Secretary, acting through the 
     Director of the National Institutes of Health, the Director 
     of the Centers for Disease Control and Prevention, or the 
     Administrator of the Health Resources and Services 
     Administration, may authorize and oversee certain activities, 
     including the awarding of grants, contracts or cooperative 
     agreements to eligible entities, to--
       ``(A) collect, synthesize, and disseminate current 
     evidence-based information relating to Down syndrome or other 
     prenatally or postnatally diagnosed conditions; and
       ``(B) coordinate the provision of, and access to, new or 
     existing supportive services for patients receiving a 
     positive diagnosis for Down syndrome or other prenatally or 
     postnatally diagnosed conditions, including--
       ``(i) the establishment of a resource telephone hotline 
     accessible to patients receiving a positive test result or to 
     the parents of newly diagnosed infants with Down syndrome and 
     other diagnosed conditions;
       ``(ii) the expansion and further development of the 
     National Dissemination Center for Children with Disabilities, 
     so that such Center can more effectively conduct outreach to 
     new and expecting parents and provide them with up-to-date 
     information on the range of outcomes for individuals living 
     with the diagnosed condition, including physical, 
     developmental, educational, and psychosocial outcomes;
       ``(iii) the expansion and further development of national 
     and local peer-support programs, so that such programs can 
     more effectively serve women who receive a positive diagnosis 
     for Down syndrome or other prenatal conditions or parents of 
     infants with a postnatally diagnosed condition;
       ``(iv) the establishment of a national registry, or network 
     of local registries, of families willing to adopt newborns 
     with Down syndrome or other prenatally or postnatally 
     diagnosed conditions, and links to adoption agencies willing 
     to place babies with Down syndrome or other prenatally or 
     postnatally diagnosed conditions, with families willing to 
     adopt; and
       ``(v) the establishment of awareness and education programs 
     for health care providers who provide, interpret, or inform 
     parents of the results of prenatal tests for Down syndrome or 
     other prenatally or postnatally diagnosed conditions, to 
     patients, consistent with the purpose described in section 
     2(b)(1) of the Prenatally and Postnatally Diagnosed 
     Conditions Awareness Act.
       ``(2) Eligible entity.--In this subsection, the term 
     `eligible entity' means--
       ``(A) a State or a political subdivision of a State;
       ``(B) a consortium of 2 or more States or political 
     subdivisions of States;
       ``(C) a territory;
       ``(D) a health facility or program operated by or pursuant 
     to a contract with or grant from the Indian Health Service; 
     or
       ``(E) any other entity with appropriate expertise in 
     prenatally and postnatally diagnosed conditions (including 
     nationally recognized disability groups), as determined by 
     the Secretary.
       ``(3) Distribution.--In distributing funds under this 
     subsection, the Secretary shall place an emphasis on funding 
     partnerships between health care professional groups and 
     disability advocacy organizations.
       ``(c) Provision of Information to Providers.--
       ``(1) In general.--A grantee under this section shall make 
     available to health care providers of parents who receive a 
     prenatal or postnatal diagnosis the following:
       ``(A) Up-to-date, evidence-based, written information 
     concerning the range of outcomes for individuals living with 
     the diagnosed condition, including physical, developmental, 
     educational, and psychosocial outcomes.
       ``(B) Contact information regarding support services, 
     including information hotlines specific to Down syndrome or 
     other prenatally or postnatally diagnosed conditions, 
     resource centers or clearinghouses, national and local peer 
     support groups, and other education and support programs as 
     described in subsection (b)(2).
       ``(2) Informational requirements.--Information provided 
     under this subsection shall be--
       ``(A) culturally and linguistically appropriate as needed 
     by women receiving a positive prenatal diagnosis or the 
     family of infants receiving a postnatal diagnosis; and
       ``(B) approved by the Secretary.
       ``(d) Report.--Not later than 2 years after the date of 
     enactment of this section, the Government Accountability 
     Office shall submit a report to Congress concerning the 
     effectiveness of current healthcare and family support 
     programs serving as resources for the families of children 
     with disabilities.''.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from New 
Jersey (Mr. Pallone) and the gentleman from Georgia (Mr. Deal) each 
will control 20 minutes.
  The Chair recognizes the gentleman from New Jersey.


                             General Leave

  Mr. PALLONE. Madam Speaker, I ask unanimous consent that all Members 
may have 5 legislative days in which to revise and extend their remarks 
and include extraneous material on the bill under consideration.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from New Jersey?
  There was no objection.
  Mr. PALLONE. Madam Speaker, I yield myself such time as I may 
consume.
  Madam Speaker, I rise in support of S. 1810, the Prenatally and 
Postnatally Diagnosed Condition Awareness Act, legislation introduced 
by Senator Brownback.
  Madam Speaker, this legislation would ensure that pregnant women or 
mothers of newborns with a prenatally or postnatally diagnosed 
condition have timely access to updated, scientific information about 
the life expectancy, intellectual and functional development and 
treatment options for their child.
  In addition, this legislation would provide families with referrals 
to support services; improve our Nation's epidemiological understanding 
of prenatally and postnatally diagnosed conditions; and support health 
care providers to provide the results of prenatal or postnatal tests to 
patients.
  I would like to once again thank all of my colleagues, especially Mr. 
Sensenbrenner, the sponsor of the House companion legislation, for all 
of their hard work. I urge my colleagues on both sides of the aisle to 
support its passage.
  I reserve the balance of my time.
  Mr. DEAL of Georgia. Madam Speaker, at this time I would like to 
yield such time she may consume to Representative McMorris Rodgers.

[[Page H9919]]

  Mrs. McMORRIS RODGERS. Madam Speaker, I rise in strong support of 
Senate bill 1810, the Prenatally and Postnatally Diagnosed Conditions 
Awareness Act. I believe that 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, and it 
changed even more dramatically when Cole was born a month early and he 
was diagnosed with Down syndrome. Cole turned a year old in April; and 
looking back on the last year, I can't imagine life without him.
  Everywhere I go, I have met people who share their stories of being 
touched by a loved one with special needs. They always share with me 
the positive impacts that this person has had in their life. It has 
helped me see just a glimpse of the amazing impact that my son is going 
to have on our lives as well as this world.
  The bill we are considering today will help parents who either 
receive news that their child may be born with a genetic disorder or 
some other abnormality, or a child that has been diagnosed from birth 
up until 12 months of age, with current and reliable information about 
the many services and support networks available.
  When new and expecting parents are told that their child will have 
some kind of genetic disorder, it is a very difficult and sometimes an 
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 parent support groups 
or disability advocacy groups. These organizations have tried countless 
ways to reach out to parents who have received a prenatal diagnosis. 
Unfortunately, many geneticists and OB-GYNs believe that parents of 
children with these conditions and 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 disabilities so that it can more 
effectively provide parents with accurate and up-to-date information on 
their child's condition, along with the available resources and 
services.
  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, and I urge colleagues on both sides of the 
aisle to join me in support of S. 1810.
  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 1 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 is 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 12 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 colleagues 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.
  Mr. PALLONE. Madam Speaker, I yield 2 minutes to the gentleman from 
Ohio (Mr. Ryan).
  Mr. RYAN of Ohio. I thank the gentleman for the opportunity.
  I am proud to have joined as the lead Democratic cosponsor with the 
gentleman from Wisconsin (Mr. Sensenbrenner) on the House version of 
this legislation. I would like to thank Mr. Sensenbrenner, Senator 
Brownback, and Senator Kennedy for their leadership in moving this 
bill.
  Last year, Congresswoman DeLauro and I introduced legislation called 
Reducing the Need for Abortions and Supporting Parents Act which 
contains a provision similar to what is in this bill before us now.
  What this bill does is make a commitment to new and expectant mothers 
whose child receives a diagnosis for Down syndrome or other prenatally 
or postnatally diagnosed conditions. Society will be there, and it 
tells them that society will be there to support you. We will bring 
every resource to bear to ensure that you are able to raise a beautiful 
baby.
  Never should a pregnant woman feel that her options are limited by a 
lack of public support for the types of social services that could help 
her, her family, and her baby.

                              {time}  1645

  The sad reality, Madam Speaker, is that over 90 percent of 
pregnancies with a diagnosis of Down Syndrome are aborted. This should 
not and need not be the case. We have not done enough to help these 
women and their families. We must do more to get them the support they 
need, the support they deserve, and this bill is a crucial step in that 
direction.
  Lastly, I would like to thank Speaker Pelosi, Minority Leader Boehner 
and my friends on the other side of the aisle for working together to 
get this common ground legislation passed.
  Mr. DEAL of Georgia. Madam Speaker, I am pleased to yield to one of 
the leaders on this subject matter here in the House, the gentleman 
from Wisconsin (Mr. Sensenbrenner).
  Mr. SENSENBRENNER. Madam Speaker, I'm pleased that the House is 
considering Senate 1810, the Prenatally and Postnatally Diagnosed 
Conditions Awareness Act. This bill would ensure

[[Page H9920]]

that families who receive a diagnosis of Down Syndrome or any other 
condition, prenatally or up to a year after birth, receive information, 
referrals and support in a number of ways.
  I first introduced the House companion bill in 2005. Research has 
indicated that when parents are confronted with a complex prenatal test 
result indicating their child may be born with a level of disability, 
they're not receiving comprehensive information regarding the accuracy 
of the test, nor are they receiving up-to-date information regarding 
life expectancy, developmental potential or quality of life of 
individuals with these disabilities.
  Mothers of children born with Down Syndrome have reported that 
doctors did not tell them about the potential of people with Down 
Syndrome, nor did they feel like they received contact information for 
parent support groups. This is unfortunate, particularly in light of 
mothers reporting that the shortcomings were happening at an emotional 
time.
  This Act will require health care providers who deliver a positive 
test diagnosis to also deliver referrals to key support services in the 
community, as well as up-to-date science-based information about the 
life expectancy, developmental potential and treatment options for 
individuals with prenatally diagnosable conditions. The accuracy and 
integrity of this information is of the utmost importance.
  Patients would be provided with support through the Centers for 
Disease Control patient and provider outreach programs. A hot line and 
Web site for newly diagnosed patients would be established, and peer 
support groups and network would be formed to provide personal support.
  My wife, Cheryl, has a sister living with Down Syndrome. I have 
witnessed firsthand what a wonderful and capable woman my sister-in-law 
has become. Tara Rae Warren completed her high school education, is 
financially independent, and lectures to students of special education 
on the challenges of the disability. Cheryl's family has always been 
there for her, and we have worked through the challenges by having a 
positive support structure.
  My hope is that all families with diagnosed children can gain access 
to positive current information and the network of supportive families. 
Informed decision-making is better for everyone involved.
  I urge my colleagues to join me in support of this important bill.
  Mr. PALLONE. Madam Speaker, I have no further speakers, and I yield 
back the balance of my time and ask that everyone support this 
legislation.
  Mr. DEAL of Georgia. Madam Speaker, I urge my colleagues to join us 
in taking this very first important step of dealing with the care and 
the quality of care for individuals who suffer from Down Syndrome and 
for their families. I urge the adoption of this legislation.
  I yield back the balance of my time.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from New Jersey (Mr. Pallone) that the House suspend the 
rules and pass the Senate bill, S. 1810.
  The question was taken; and (two-thirds being in the affirmative) the 
rules were suspended and the Senate bill was passed.
  A motion to reconsider was laid on the table.

                          ____________________