Requires the Secretary to establish a review panel to make recommendations on applicants. Permits the use of funds for respite care services and training programs. Limits grants to five years.
Directs the Secretary to provide for the establishment of a National Resource Center on Lifespan Respite Care to maintain a national database and provide training, technical assistance, and information.
[Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1083 Introduced in House (IH)]
108th CONGRESS
1st Session
H. R. 1083
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 HOUSE OF REPRESENTATIVES
March 5, 2003
Mr. Langevin (for himself, Mr. Abercrombie, Mr. Ackerman, Mr. Allen,
Mr. Brady of Pennsylvania, Ms. Corrine Brown of Florida, Mr. Brown of
Ohio, Mrs. Christensen, Ms. DeLauro, Mr. Doyle, Mr. Engel, Mr. Evans,
Mr. Foley, Mr. Ford, Mr. Frank of Massachusetts, Mr. Frost, Mr. Green
of Texas, Mr. Greenwood, Mr. Gutierrez, Mr. Hoeffel, Mrs. Johnson of
Connecticut, Mrs. Jones of Ohio, Mr. Kildee, Mr. Kennedy of Rhode
Island, Mr. Lantos, Mr. Matsui, Mr. McDermott, Mr. McHugh, Mr. McNulty,
Ms. Millender-McDonald, Mr. George Miller of California, Mr. Nadler,
Mrs. Napolitano, Ms. Norton, Mr. Oberstar, Mr. Owens, Mr. Pascrell, Mr.
Payne, Mr. Serrano, Mr. Simmons, Mr. Skelton, Mr. Stenholm, Mr. Towns,
Mr. Waxman, Ms. Woolsey, Ms. Berkley, Mr. Davis of Illinois, Ms. Ginny
Brown-Waite of Florida, Mr. Clyburn, Ms. Jackson-Lee of Texas, Mr.
Crowley, and Mr. Markey) introduced the following bill; which was
referred to the Committee on Energy and Commerce
_______________________________________________________________________
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) 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 deaths;
``(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 primarily directed at lower income
populations and family caregivers of the elderly, leaving large
numbers of family caregivers without adequate support; and
``(15) there are a limited number of available respite care
programs, and these programs have difficulty recruiting
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) Condition.--The term `condition' includes--
``(A) Alzheimer's disease and other neurological
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;
``(J) traumatic brain injury; and
``(K) such conditions as the Secretary may
designate by regulation.
``(2) 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.
``(3) 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.
``(4) 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.
``(5) 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.
``(6) Secretary.--The term `Secretary' means the Secretary
of Health and Human Services.
``(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. 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 may
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, acting through the Maternal and Child Health Bureau of the
Health Resources and Services Administration, and in cooperation with
the National Family Caregiver Support Program in the Administration on
Aging, the Administration for Children and Families, the Administration
on Developmental Disabilities, and the Substance Abuse and Mental
Health Services Administration, shall 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 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;
``(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 will 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 recommended
for approval 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.--The Secretary may not award a grant or
cooperative agreement to an eligible recipient under this
section unless the recipient agrees to use the funds for--
``(A) the development of lifespan respite care at
the State and local levels, taking into consideration
models and best practices in respite care delivery and
coordination;
``(B) respite care services to meet unmet needs and
provide worker, volunteer, and family training
programs; and
``(C) an evaluation of the effectiveness of such
development and services.
``(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.
``SEC. 2904. NATIONAL LIFESPAN RESPITE RESOURCE CENTER.
``(a) Establishment.--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) Duties.--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.
``SEC. 2905. AUTHORIZATION OF APPROPRIATIONS.
``There are authorized to be appropriated to carry out this title
such sums as may be necessary.''.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health.
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