I 
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 Massachu-
setts, Mr. FROST, Mr. GREEN of Texas, Mr. GREENWOOD, Mr. GUTIER-
REZ, 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. STEN-
HOLM, 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) intro-
duced 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 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 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;
‘‘(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. 2903. 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. 2904. 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. 2905. AUTHORIZATION OF APPROPRIATIONS. 
‘‘There are authorized to be appropriated to carry out 
this title such sums as may be necessary.’’.
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