[Congressional Record Volume 148, Number 58 (Thursday, May 9, 2002)]
[Senate]
[Pages S4151-S4153]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mrs. CLINTON (for herself, Ms. Snowe, Ms. Mikulski, and Mr. 
        Breaux):
  S. 2489. 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; to the Committee on 
Health, Education, Labor, and Pensions.
  Mrs. CLINTON. Mr. President, I ask unanimous consent that the text of 
the bill be printed in the Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                S. 2489

       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 
     2002''.

     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 XXVIII--LIFESPAN RESPITE CARE

     ``SEC. 2801. 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) approximately 6,000,000 children in the United States 
     live with a grandparent or other relative because their 
     parents are unable or unwilling to care for them;
       ``(4) an estimated 165,000 children with disabilities in 
     the United States live with a foster care parent;
       ``(5) nearly 4,000,000 individuals in the United States of 
     all ages who have mental retardation or another developmental 
     disability live with their families;
       ``(6) 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;
       ``(7) every year, approximately 600,000 Americans die at 
     home and many of these individuals rely on extensive family 
     caregiving before their death;
       ``(8) of all individuals in the United States needing 
     assistance in daily living, 42 percent are under age 65;
       ``(9) there are insufficient resources to replace family 
     caregivers with paid workers;
       ``(10) if services provided by family caregivers had to be 
     replaced with paid services, it would cost approximately 
     $200,000,000,000 annually;
       ``(11) the family caregiver role is personally rewarding 
     but can result in substantial emotional, physical, and 
     financial hardship;
       ``(12) approximately 75 percent of family caregivers are 
     women;
       ``(13) family caregivers often do not know where to find 
     information about available respite care or how to access it;
       ``(14) 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
       ``(15) 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.

[[Page S4152]]

     ``SEC. 2802. DEFINITIONS.

       ``In this title:
       ``(1) Associate administrator.--The term `Associate 
     Administrator' means the Associate Administrator of the 
     Maternal and Child Health Bureau of the Health Resources and 
     Services Administration.
       ``(2) Condition.--The term `condition' includes--
       ``(A) Alzheimer's disease and related disorders;
       ``(B) developmental disabilities;
       ``(C) mental retardation;
       ``(D) physical disabilities;
       ``(E) chronic illness, including cancer;
       ``(F) behavioral, mental, and emotional conditions;
       ``(G) cognitive impairments;
       ``(H) situations in which there exists a high risk of abuse 
     or neglect or of being placed in the foster care system due 
     to abuse and neglect;
       ``(I) situations in which a child's parent is unavailable 
     due to the parent's death, incapacitation, or incarceration; 
     or
       ``(J) any other conditions as the Associate Administrator 
     may establish by regulation.
       ``(3) 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.
       ``(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) Lifespan respite care.--The term `lifespan respite 
     care' means a coordinated system of accessible, community-
     based respite care services for family caregivers of 
     individuals regardless of the individual's age, race, 
     ethnicity, or special need.
       ``(6) Respite care.--The term `respite care' means planned 
     or emergency care provided to an individual with a special 
     need--
       ``(A) in order to provide temporary relief to the family 
     caregiver of that individual; or
       ``(B) when the family caregiver of that individual is 
     unable to provide care.
       ``(7) Special need.--The term `special need' means the 
     particular needs of an individual of any age who requires 
     care or supervision because of a condition in order to meet 
     the individual's basic needs or to prevent harm to the 
     individual.

     ``SEC. 2803. 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 
     Associate Administrator 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 Associate Administrator 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, 
     and the Substance Abuse and Mental Health Services 
     Administration, to ensure coordination of respite care 
     services for family caregivers of individuals of all ages 
     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 Associate Administrator at 
     such time, in such manner, and containing such information as 
     the Associate Administrator 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;
       ``(ii) the extent and nature of the respite care needs of 
     the population;
       ``(iii) existing respite care services for the 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 individuals of all ages 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 Associate 
     Administrator 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 Associate Administrator 
     concerning whether the application should be approved.
       ``(f) Awarding of Grants or Cooperative Agreements.--
       ``(1) In general.--The Associate Administrator 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 Associate Administrator 
     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;
       ``(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 Associate Administrator shall award 
     grants or cooperative agreements under this section for terms 
     that do not exceed 5 years.
       ``(2) Renewal.--The Associate Administrator 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--

[[Page S4153]]

       ``(1) $90,500,000 for fiscal year 2003;
       ``(2) $118,000,000 for fiscal year 2004;
       ``(3) $145,500,000 for fiscal year 2005;
       ``(4) $173,000,000 for fiscal year 2006; and
       ``(5) $200,000,000 for fiscal year 2007.

     ``SEC. 2804. NATIONAL LIFESPAN RESPITE RESOURCE CENTER.

       ``(a) Establishment.--From funds appropriated under 
     subsection (c), the Associate Administrator 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 2003 through 2007.''.
                                 ______