I
107TH CONGRESS
2D SESSION
H. R. 5241
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
JULY 26, 2002
Mr. LANGEVIN (for himself, Mr. GREENWOOD, Mr. BRADY of Pennsylvania,
Mr. PASCRELL, Mrs. MORELLA, Mr. MCHUGH, Mr. FROST, Mr. KILDEE,
Mr. WAXMAN, Mr. CUMMINGS, Mr. OWENS, Mr. STARK, Mr. ENGEL, Mr.
MCNULTY, Mr. BALDACCI, Mr. BAIRD, Ms. WOOLSEY, Mr. MCDERMOTT,
Mr. SERRANO, Mr. HALL of Ohio, Mr. MARKEY, Ms. MCCOLLUM, Mr.
FOLEY, Mr. MENENDEZ, Ms. BROWN of Florida, Mr. LAMPSON, Mr.
MATSUI, Mr. OBERSTAR, Mr. GEORGE MILLER of California, Mr. DAVIS
of Illinois, Mrs. CHRISTENSEN, Mrs. NAPOLITANO, Mr. ACKERMAN, Mr.
FORD, Mr. FATTAH, Mr. LANTOS, Mr. FARR of California, Mrs. JONES
of Ohio, Ms. EDDIE BERNICE JOHNSON of Texas, and Mr. GREEN of
Texas) 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 pro-
gram 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 Representa-
tives 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 rel-
ative because their parents are unable or unwilling
to care for them;
‘‘(4) an estimated 165,000 children with dis-
abilities 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 fami-
lies;
‘‘(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 meet-
ing their daily needs;
‘‘(7) every year, approximately 600,000 Ameri-
cans 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 re-
warding but can result in substantial emotional,
physical, and financial hardship;
‘‘(12) approximately 75 percent of family care-
givers 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 insuf-
ficient to meet the need and are primarily directed
at lower income populations and family caregivers of
the elderly, leaving large numbers of family care-
givers without adequate support; and
‘‘(15) there are a limited number of available
respite care programs, and these programs have dif-
ficulty recruiting appropriately trained respite work-
ers.
‘‘(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 dissemina-
tion 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 com-
prehensive approaches to—
‘‘(A) the delivery of respite care;
‘‘(B) respite care worker and volunteer re-
cruitment and training programs; and
‘‘(C) training programs for family care-
givers to assist such family caregivers in mak-
ing informed decisions about respite care serv-
ices;
‘‘(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 re-
search projects relating to respite care delivery, fam-
ily caregiver strain, respite care worker and volun-
teer recruitment and training, and training pro-
grams for family caregivers that assist such family
caregivers in making informed decisions about res-
pite care services.
‘‘SEC. 2802. DEFINITIONS.
‘‘In this title:
‘‘(1) 
CONDITION.—The 
term 
‘condition’
includes—
‘‘(A) Alzheimer’s disease and other neuro-
logical 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 ne-
glect;
‘‘(I) situations in which a child’s parent is
unavailable due to the parent’s death, incapaci-
tation, 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 capa-
ble 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 in-
dividuals; or
‘‘(E) any recognized State respite coordi-
nating 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 meaning-
ful 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 ‘life-
span respite care’ means a coordinated system of ac-
cessible, community-based respite care services for
family caregivers of individuals regardless of the in-
dividual’s age, race, ethnicity, or special need.
‘‘(5) RESPITE CARE.—The term ‘respite care’
means planned or emergency care provided to an in-
dividual 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 in-
dividual 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. 2803. LIFESPAN RESPITE CARE GRANTS AND COOP-
ERATIVE AGREEMENTS.
‘‘(a) PURPOSES.—The purposes of this section are—
‘‘(1) to expand and enhance respite care serv-
ices 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 care-
givers, 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 Mater-
nal and Child Health Bureau of the Health Resources and
Services Administration, and in cooperation with the Na-
tional Family Caregiver Support Program in the Adminis-
tration on Aging, the Administration for Children and
Families, the Administration on Developmental Disabil-
ities, and the Substance Abuse and Mental Health Serv-
ices 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 de-
siring to receive a grant or cooperative agreement
under this section shall submit an application to the
Secretary at such time, in such manner, and con-
taining such information as the Secretary shall re-
quire.
‘‘(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 in-
volvement of family members, family care-
givers, and care recipients; and
‘‘(iii) collaboration with other State
and community-based public, nonprofit, or
private agencies;
‘‘(B) with respect to the population of fam-
ily 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 res-
pite care needs of the population;
‘‘(iii) existing respite care services for
the population, including numbers of fam-
ily 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 dis-
semination 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 mak-
ing informed decisions about respite care
services, will be provided using grant or co-
operative agreement funds;
‘‘(vi) a plan for collaboration and co-
ordination of the proposed respite care ac-
tivities with other related services or pro-
grams offered by public or private, non-
profit entities, including area agencies on
aging;
‘‘(vii) how the population, including
family caregivers, care recipients, and rel-
evant public or private agencies, will par-
ticipate in the planning and implementa-
tion 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 care-
givers of individuals of all ages with special
needs;
‘‘(x) the criteria used to identify fam-
ily caregivers eligible for respite care serv-
ices;
‘‘(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 pro-
posed respite care activities and the proce-
dures to be used for evaluating those re-
sults; 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 appli-
cations submitted under this section.
‘‘(2) MEETINGS.—The panel shall meet as often
as may be necessary to facilitate the expeditious re-
view 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 Sec-
retary 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 co-
operative agreements under this subsection, the Sec-
retary 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 eligi-
ble 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 res-
pite 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 AGREE-
MENTS.—
‘‘(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. 2804. NATIONAL LIFESPAN RESPITE RESOURCE CEN-
TER.
‘‘(a) ESTABLISHMENT.—The Secretary shall award a
grant or cooperative agreement to a public or private non-
profit 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 pro-
grams; and
‘‘(3) provide information, referral, and edu-
cational programs to the public on lifespan respite
care.
‘‘SEC. 2805. AUTHORIZATION OF APPROPRIATIONS.
‘‘There are authorized to be appropriated to carry out
this title such sums as may be necessary.’’.
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