[Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[S. 538 Introduced in Senate (IS)]







108th CONGRESS
  1st Session
                                 S. 538

To amend the Public Health Service Act to establish a program to assist 
  family caregivers in accessing affordable and high-quality respite 
                     care, and for other purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             March 5, 2003

  Mrs. Clinton (for herself, Mr. Warner, Ms. Mikulski, Ms. Snowe, Mr. 
 Breaux, Mr. Jeffords, Mrs. Murray, Ms. Collins, Mr. Kennedy, and Mr. 
Smith) introduced the following bill; which was read twice and referred 
       to the Committee on Health, Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL


 
To amend the Public Health Service Act to establish a program to assist 
  family caregivers in accessing affordable and high-quality respite 
                     care, and for other purposes.

    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 ``Lifespan Respite Care Act of 2003''.

SEC. 2. LIFESPAN RESPITE CARE.

    The Public Health Service Act (42 U.S.C. 201 et seq.) is amended by 
adding at the end the following:

                  ``TITLE XXIX--LIFESPAN RESPITE CARE

``SEC. 2901. FINDINGS AND PURPOSES.

    ``(a) Findings.--Congress finds that--
            ``(1) an estimated 26,000,000 individuals in the United 
        States care each year for 1 or more adult family members or 
        friends who are chronically ill, disabled, or terminally ill;
            ``(2) an estimated 18,000,000 children in the United States 
        have chronic physical, developmental, behavioral, or emotional 
        conditions that demand caregiver monitoring, management, 
        supervision, or treatment beyond that required of children 
        generally;
            ``(3) nearly 4,000,000 individuals in the United States of 
        all ages who have mental retardation or another developmental 
        disability live with their families;
            ``(4) almost 25 percent of the Nation's elders experience 
        multiple chronic disabling conditions that make it necessary to 
        rely on others for help in meeting their daily needs;
            ``(5) every year, approximately 600,000 Americans die at 
        home and many of these individuals rely on extensive family 
        caregiving before their death;
            ``(6) of all individuals in the United States needing 
        assistance in daily living, 42 percent are under age 65;
            ``(7) there are insufficient resources to replace family 
        caregivers with paid workers;
            ``(8) if services provided by family caregivers had to be 
        replaced with paid services, it would cost approximately 
        $200,000,000,000 annually;
            ``(9) the family caregiver role is personally rewarding but 
        can result in substantial emotional, physical, and financial 
        hardship;
            ``(10) approximately 75 percent of family caregivers are 
        women;
            ``(11) family caregivers often do not know where to find 
        information about available respite care or how to access it;
            ``(12) available respite care programs are insufficient to 
        meet the need and are directed at primarily lower income 
        populations and family caregivers of the elderly, leaving large 
        numbers of family caregivers without adequate support; and
            ``(13) the limited number of available respite care 
        programs find it difficult to recruit appropriately trained 
        respite workers.
    ``(b) Purposes.--The purposes of this title are--
            ``(1) to encourage States to establish State and local 
        lifespan respite care programs;
            ``(2) to improve and coordinate the dissemination of 
        respite care information and resources to family caregivers;
            ``(3) to provide, supplement, or improve respite care 
        services to family caregivers;
            ``(4) to promote innovative, flexible, and comprehensive 
        approaches to--
                    ``(A) the delivery of respite care;
                    ``(B) respite care worker and volunteer recruitment 
                and training programs; and
                    ``(C) training programs for family caregivers to 
                assist such family caregivers in making informed 
                decisions about respite care services;
            ``(5) to support evaluative research to identify effective 
        respite care services that alleviate, reduce, or minimize any 
        negative consequences of caregiving; and
            ``(6) to promote the dissemination of results, findings, 
        and information from programs and research projects relating to 
        respite care delivery, family caregiver strain, respite care 
        worker and volunteer recruitment and training, and training 
        programs for family caregivers that assist such family 
        caregivers in making informed decisions about respite care 
        services.

``SEC. 2902. DEFINITIONS.

    ``In this title:
            ``(1) Eligible recipient.--The term `eligible recipient' 
        means--
                    ``(A) a State agency;
                    ``(B) any other public entity that is capable of 
                operating on a statewide basis;
                    ``(C) a private, nonprofit organization that is 
                capable of operating on a statewide basis;
                    ``(D) a political subdivision of a State that has a 
                population of not less than 3,000,000 individuals; or
                    ``(E) any recognized State respite coordinating 
                agency that has--
                            ``(i) a demonstrated ability to work with 
                        other State and community-based agencies;
                            ``(ii) an understanding of respite care and 
                        family caregiver issues; and
                            ``(iii) the capacity to ensure meaningful 
                        involvement of family members, family 
                        caregivers, and care recipients.
            ``(2) Adult with a special need.--The term `adult with a 
        special need' means a person 18 years of age or older who 
        requires care or supervision to--
                    ``(A) meet the person's basic needs; or
                    ``(B) prevent physical self-injury or injury to 
                others.
            ``(3) Child with a special need.--The term `child with a 
        special need' means a person less than 18 years of age who 
        requires care or supervision beyond that required of children 
        generally to--
                    ``(A) meet the child's basic needs; or
                    ``(B) prevent physical self-injury or injury to 
                others.
            ``(4) Family caregiver.--The term `family caregiver' means 
        an unpaid family member, a foster parent, or another unpaid 
        adult, who provides in-home monitoring, management, 
        supervision, or treatment of a child or adult with a special 
        need.
            ``(5) Respite care.--The term `respite care' means planned 
        or emergency care provided to a child or adult with a special 
        need in order to provide temporary relief to the family 
        caregiver of that child or adult.
            ``(6) Lifespan respite care.--The term `lifespan respite 
        care' means a coordinated system of accessible, community-based 
        respite care services for family caregivers of children or 
        adults with special needs.

``SEC. 2903. LIFESPAN RESPITE CARE GRANTS AND COOPERATIVE AGREEMENTS.

    ``(a) Purposes.--The purposes of this section are--
            ``(1) to expand and enhance respite care services to family 
        caregivers;
            ``(2) to improve the statewide dissemination and 
        coordination of respite care; and
            ``(3) to provide, supplement, or improve access and quality 
        of respite care services to family caregivers, thereby reducing 
        family caregiver strain.
    ``(b) Authorization.--Subject to subsection (f), the Secretary is 
authorized to award grants or cooperative agreements to eligible 
recipients who submit an application pursuant to subsection (d).
    ``(c) Federal Lifespan Approach.--In carrying out this section, the 
Secretary shall work in cooperation with the National Family Caregiver 
Support Program Officer of the Administration on Aging, and respite 
care program officers in the Administration for Children and Families, 
the Administration on Developmental Disabilities, the Maternal and 
Child Health Bureau of the Health Resources and Services 
Administration, and the Substance Abuse and Mental Health Services 
Administration, to ensure coordination of respite care services for 
family caregivers of children and adults with special needs.
    ``(d) Application.--
            ``(1) Submission.--Each eligible recipient desiring to 
        receive a grant or cooperative agreement under this section 
        shall submit an application to the Secretary at such time, in 
        such manner, and containing such information as the Secretary 
        shall require.
            ``(2) Contents.--Each application submitted under this 
        section shall include--
                    ``(A) a description of the applicant's--
                            ``(i) understanding of respite care and 
                        family caregiver issues;
                            ``(ii) capacity to ensure meaningful 
                        involvement of family members, family 
                        caregivers, and care recipients; and
                            ``(iii) collaboration with other State and 
                        community-based public, nonprofit, or private 
                        agencies;
                    ``(B) with respect to the population of family 
                caregivers to whom respite care information or services 
                will be provided or for whom respite care workers and 
                volunteers will be recruited and trained, a description 
                of--
                            ``(i) the population of family caregivers;
                            ``(ii) the extent and nature of the respite 
                        care needs of that population;
                            ``(iii) existing respite care services for 
                        that population, including numbers of family 
                        caregivers being served and extent of unmet 
                        need;
                            ``(iv) existing methods or systems to 
                        coordinate respite care information and 
                        services to the population at the State and 
                        local level and extent of unmet need;
                            ``(v) how respite care information 
                        dissemination and coordination, respite care 
                        services, respite care worker and volunteer 
                        recruitment and training programs, or training 
                        programs for family caregivers that assist such 
                        family caregivers in making informed decisions 
                        about respite care services will be provided 
                        using grant or cooperative agreement funds;
                            ``(vi) a plan for collaboration and 
                        coordination of the proposed respite care 
                        activities with other related services or 
                        programs offered by public or private, 
                        nonprofit entities, including area agencies on 
                        aging;
                            ``(vii) how the population, including 
                        family caregivers, care recipients, and 
                        relevant public or private agencies, will 
                        participate in the planning and implementation 
                        of the proposed respite care activities;
                            ``(viii) how the proposed respite care 
                        activities will make use, to the maximum extent 
                        feasible, of other Federal, State, and local 
                        funds, programs, contributions, other forms of 
                        reimbursements, personnel, and facilities;
                            ``(ix) respite care services available to 
                        family caregivers in the applicant's State or 
                        locality, including unmet needs and how the 
                        applicant's plan for use of funds will improve 
                        the coordination and distribution of respite 
                        care services for family caregivers of children 
                        and adults with special needs;
                            ``(x) the criteria used to identify family 
                        caregivers eligible for respite care services;
                            ``(xi) how the quality and safety of any 
                        respite care services provided will be 
                        monitored, including methods to ensure that 
                        respite care workers and volunteers are 
                        appropriately screened and possess the 
                        necessary skills to care for the needs of the 
                        care recipient in the absence of the family 
                        caregiver; and
                            ``(xii) the results expected from proposed 
                        respite care activities and the procedures to 
                        be used for evaluating those results; and
                    ``(C) assurances that, where appropriate, the 
                applicant shall have a system for maintaining the 
                confidentiality of care recipient and family caregiver 
                records.
    ``(e) Review of Applications.--
            ``(1) Establishment of review panel.--The Secretary shall 
        establish a panel to review applications submitted under this 
        section.
            ``(2) Meetings.--The panel shall meet as often as may be 
        necessary to facilitate the expeditious review of applications.
            ``(3) Function of panel.--The panel shall--
                    ``(A) review and evaluate each application 
                submitted under this section; and
                    ``(B) make recommendations to the Secretary 
                concerning whether the application should be approved.
    ``(f) Awarding of Grants or Cooperative Agreements.--
            ``(1) In general.--The Secretary shall award grants or 
        cooperative agreements from among the applications approved by 
        the panel under subsection (e)(3).
            ``(2) Priority.--When awarding grants or cooperative 
        agreements under this subsection, the Secretary shall give 
        priority to applicants that show the greatest likelihood of 
        implementing or enhancing lifespan respite care statewide.
    ``(g) Use of Grant or Cooperative Agreement Funds.--
            ``(1) In general.--
                    ``(A) Mandatory uses of funds.--Each eligible 
                recipient that is awarded a grant or cooperative 
                agreement under this section shall use the funds for, 
                unless such a program is in existence--
                            ``(i) the development of lifespan respite 
                        care at the State and local levels; and
                            ``(ii) an evaluation of the effectiveness 
                        of such care.
                    ``(B) Discretionary uses of funds.--Each eligible 
                recipient that is awarded a grant or cooperative 
                agreement under this section may use the funds for--
                            ``(i) respite care services for family 
                        caregivers of children and adults with special 
                        needs;
                            ``(ii) respite care worker and volunteer 
                        training programs; or
                            ``(iii) training programs for family 
                        caregivers to assist such family caregivers in 
                        making informed decisions about respite care 
                        services.
                    ``(C) Evaluation.--If an eligible recipient uses 
                funds awarded under this section for an activity 
                described in subparagraph (B), the eligible recipient 
                shall use funds for an evaluation of the effectiveness 
                of the activity.
            ``(2) Subcontracts.--Each eligible recipient that is 
        awarded a grant or cooperative agreement under this section may 
        use the funds to subcontract with a public or nonprofit agency 
        to carry out the activities described in paragraph (1).
    ``(h) Term of Grants or Cooperative Agreements.--
            ``(1) In general.--The Secretary shall award grants or 
        cooperative agreements under this section for terms that do not 
        exceed 5 years.
            ``(2) Renewal.--The Secretary may renew a grant or 
        cooperative agreement under this section at the end of the term 
        of the grant or cooperative agreement determined under 
        paragraph (1).
    ``(i) Supplement, Not Supplant.--Funds made available under this 
section shall be used to supplement and not supplant other Federal, 
State, and local funds available for respite care services.
    ``(j) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section--
            ``(1) $90,500,000 for fiscal year 2004; and
            ``(2) such sums as are necessary for fiscal years 2005 
        through 2008.

``SEC. 2904. NATIONAL LIFESPAN RESPITE RESOURCE CENTER.

    ``(a) Establishment.--From funds appropriated under subsection (c), 
the Secretary shall award a grant or cooperative agreement to a public 
or private nonprofit entity to establish a National Resource Center on 
Lifespan Respite Care (referred to in this section as the `center').
    ``(b) Purposes of the Center.--The center shall--
            ``(1) maintain a national database on lifespan respite 
        care;
            ``(2) provide training and technical assistance to State, 
        community, and nonprofit respite care programs; and
            ``(3) provide information, referral, and educational 
        programs to the public on lifespan respite care.
    ``(c) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section $500,000 for each of fiscal 
years 2004 through 2008.''.
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