A bill 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 syndrome or other prenatally and postnatally diagnosed conditions.

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.''.

                               Speaker of the House of Representatives.

                            Vice President of the United States and    
                                               President of the Senate.

Summary: Prenatally and Postnatally Diagnosed Conditions Awareness Act - (Sec. 3) Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through either the Director of the National Institutes of Health (NIH), the Director of the Centers for Disease Control and Prevention (CDC), or the Administrator of the Health Resources and Services Administration (HRSA), to authorize and oversee certain activities relating to Down syndrome or other prenatally or postnatally diagnosed conditions. Includes among such activities the awarding of grants, contracts or cooperative agreements to eligible entities to: (1) collect, synthesize, and disseminate current evidence-based information relating to such conditions; and (2) coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for such conditions. Includes within such supportive services: (1) the establishment of a resource telephone hotline; (2) the expansion of the National Dissemination Center for Children with Disabilities; (3) the expansion of national and local peer-support programs; (4) the establishment of a national registry, or network of local registries, of families willing to adopt newborns with such conditions; and (5) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for such conditions.

Requires the Secretary to place an emphasis on funding partnerships between health care professional groups and disability advocacy organizations in distributing funds.

Requires a grantee under this Act to make available to health care providers of parents who receive a prenatal or postnatal diagnosis: (1) 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; and (2) contact information regarding support services, including information hotlines, resource centers or clearinghouses, national and local peer support groups, and other educational and support programs. Requires information provided to be culturally and linguistically appropriate and to be approved by the Secretary.

Requires the Government Accountability Office (GAO) to report to Congress concerning the effectiveness of current health care and family support programs serving as resources for the families of children with disabilities.