[Congressional Record Volume 149, Number 58 (Thursday, April 10, 2003)]
[Senate]
[Pages S5254-S5256]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                   LIFESPAN RESPITE CARE ACT OF 2003

  Mr. McCONNELL. Mr. President, I ask unanimous consent that the Senate 
proceed to the immediate consideration of Calendar No. 69, S. 538.
  The PRESIDING OFFICER. The clerk will state the bill by title.
  The legislative clerk read as follows:

       A bill (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.

  There being no objection, the Senate proceeded to consider the bill.
  Mr. McCONNELL. Mr. President, I ask unanimous consent that the bill 
be read the third time and passed, the motion to reconsider be laid 
upon the table, and that any statements relating to the bill be printed 
in the Record.
  The bill (S. 538) was read the third time and passed, as follows:

                                 S. 538

       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,

[[Page S5255]]

     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

[[Page S5256]]

     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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