(a) In general
The Secretary shall award grants to eligible entities to enhance, improve or expand the ability of State and local public health agencies to provide screening, counseling or health care services to newborns and children having or at risk for heritable disorders.
(b) Use of funds Amounts provided under a grant awarded under subsection (a) of this section shall be used to
(1) establish, expand, or improve systems or programs to provide screening, counseling, testing or specialty services for newborns and children at risk for heritable disorders;
(2) establish, expand, or improve programs or services to reduce mortality or morbidity from heritable disorders;
(3) establish, expand, or improve systems or programs to provide information and counseling on available therapies for newborns and children with heritable disorders;
(4) improve the access of medically underserved populations to screening, counseling, testing and specialty services for newborns and children having or at risk for heritable disorders; or
(5) conduct such other activities as may be necessary to enable newborns and children having or at risk for heritable disorders to receive screening, counseling, testing or specialty services, regardless of income, race, color, religion, sex, national origin, age, or disability.
(c) Eligible entities To be eligible to receive a grant under subsection (a) of this section an entity shall
(1) be a State or political subdivision of a State, or a consortium of two or more States or political subdivisions of States; and
(2) prepare and submit to the Secretary an application that includes
(A) a plan to use amounts awarded under the grant to meet specific health status goals and objectives relative to heritable disorders, including attention to needs of medically underserved populations;
(B) a plan for the collection of outcome data or other methods of evaluating the degree to which amounts awarded under this grant will be used to achieve the goals and objectives identified under subparagraph (A);
(C) a plan for monitoring and ensuring the quality of services provided under the grant;
(D) an assurance that amounts awarded under the grant will be used only to implement the approved plan for the State;
(E) an assurance that the provision of services under the plan is coordinated with services provided under programs implemented in the State under title V, XVIII, XIX, XX, or XXI of the Social Security Act [
42 U.S.C.
701 et seq.,
1395 et seq.,
1396 et seq.
1397 et seq.,
1397aa et seq.] (subject to Federal regulations applicable to such programs) so that the coverage of services under such titles is not substantially diminished by the use of granted funds; and
(F) such other information determined by the Secretary to be necessary.
(d) Limitation An eligible entity may not use amounts received under this section to
(1) provide cash payments to or on behalf of affected individuals;
(2) provide inpatient services;
(3) purchase land or make capital improvements to property; or
(4) provide for proprietary research or training.
(e) Voluntary participation
The participation by any individual in any program or portion thereof established or operated with funds received under this section shall be wholly voluntary and shall not be a prerequisite to eligibility for or receipt of any other service or assistance from, or to participation in, another Federal or State program.
(f) Supplement not supplant
Funds appropriated under this section shall be used to supplement and not supplant other Federal, State, and local public funds provided for activities of the type described in this section.
(g) Publication
(1) In general
An application submitted under subsection (c)(2) of this section shall be made public by the State in such a manner as to facilitate comment from any person, including through hearings and other methods used to facilitate comments from the public.
(2) Comments
Comments received by the State after the publication described in paragraph (1) shall be addressed in the application submitted under subsection (c)(2) of this section.
(h) Technical assistance
The Secretary shall provide to entities receiving grants under subsection (a) of this section such technical assistance as may be necessary to ensure the quality of programs conducted under this section.
(i) Authorization of appropriations
There are authorized to be appropriated to carry out this section such sums as may be necessary for each of the fiscal years 2001 through 2005.
