I 

109TH CONGRESS 

1ST SESSION H. R. 3248 

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 12, 2005 

Mr. FERGUSON (for himself, Mr. LANGEVIN, Mr. TERRY, Mr. NORWOOD, Mrs. 

WILSON of New Mexico, and Mr. BROWN of Ohio) 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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Lifespan Respite Care 

5 Act of 2005’’. 

6 SEC. 2. LIFESPAN RESPITE CARE. 

7 The Public Health Service Act (42 U.S.C. 201 et 

8 seq.) is amended by adding at the end the following: 
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1 ‘‘TITLE XXIX—LIFESPAN 

2 RESPITE CARE 

3 ‘‘SEC. 2901. DEFINITIONS. 

4 ‘‘In this title: 

5 ‘‘(1) ADULT WITH A SPECIAL NEED.—The term 

6 ‘adult with a special need’ means a person 18 years 

7 of age or older who requires care or supervision to— 

8 ‘‘(A) meet the person’s basic needs; or 

9 ‘‘(B) prevent physical self-injury or injury 

10 to others. 

11 ‘‘(2) CHILD WITH A SPECIAL NEED.—The term 

12 ‘child with a special need’ means a person less than 

13 18 years of age who requires care or supervision be14 yond that required of children generally to— 

15 ‘‘(A) meet the child’s basic needs; or 

16 ‘‘(B) prevent physical self-injury or injury 

17 to others. 

18 ‘‘(3) ELIGIBLE RECIPIENT.—The term ‘eligible 

19 recipient’ means— 

20 ‘‘(A) a State agency; 

21 ‘‘(B) any other public entity that is capa22 ble of operating on a statewide basis; 

23 ‘‘(C) a private, nonprofit organization that 

24 is capable of operating on a statewide basis; 
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1 ‘‘(D) a political subdivision of a State that 

2 has a population of not less than 3,000,000 in3 dividuals; or 

4 ‘‘(E) any recognized State respite coordi5 nating agency that has— 

6 ‘‘(i) a demonstrated ability to work 

7 with other State and community-based 

8 agencies; 

9 ‘‘(ii) an understanding of respite care 

10 and family caregiver issues; and 

11 ‘‘(iii) the capacity to ensure meaning12 ful involvement of family members, family 

13 caregivers, and care recipients. 

14 ‘‘(4) FAMILY CAREGIVER.—The term ‘family 

15 caregiver’ means an unpaid family member, a foster 

16 parent, or another unpaid adult, who provides in17 home monitoring, management, supervision, or 

18 treatment of a child or adult with a special need. 

19 ‘‘(5) LIFESPAN RESPITE CARE.—The term ‘life20 span respite care’ means a coordinated system of ac21 cessible, community-based respite care services for 

22 family caregivers of children or adults with special 

23 needs. 

24 ‘‘(6) RESPITE CARE.—The term ‘respite care’ 

25 means planned or emergency care provided to a 
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1 child or adult with a special need in order to provide 

2 temporary relief to the family caregiver of that child 

3 or adult. 

4 ‘‘SEC. 2902. LIFESPAN RESPITE CARE GRANTS AND COOP5 ERATIVE AGREEMENTS. 

6 ‘‘(a) PURPOSES.—The purposes of this section are— 

7 ‘‘(1) to expand and enhance respite care serv8 ices to family caregivers; 

9 ‘‘(2) to improve the statewide dissemination and 

10 coordination of respite care; and 

11 ‘‘(3) to provide, supplement, or improve access 

12 and quality of respite care services to family care13 givers, thereby reducing family caregiver strain. 

14 ‘‘(b) AUTHORIZATION.—Subject to subsection (e), the 

15 Secretary is authorized to award grants or cooperative 

16 agreements to eligible recipients who submit an applica17 tion pursuant to subsection (d). 

18 ‘‘(c) FEDERAL LIFESPAN APPROACH.—In carrying 

19 out this section, the Secretary shall work in cooperation 

20 with the National Family Caregiver Support Program Of21 ficer of the Administration on Aging and other respite care 

22 program officers within the Department to ensure coordi23 nation of respite care services for family caregivers of chil24 dren and adults with special needs. 

25 ‘‘(d) APPLICATION.— 
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1 ‘‘(1) SUBMISSION.—Each eligible recipient de2 siring to receive a grant or cooperative agreement 

3 under this section shall submit an application to the 

4 Secretary at such time, in such manner, and con5 taining such information as the Secretary shall re6 quire. 

7 ‘‘(2) CONTENTS.—Each application submitted 

8 under this section shall include— 

9 ‘‘(A) a description of the applicant’s— 

10 ‘‘(i) understanding of respite care and 

11 family caregiver issues; 

12 ‘‘(ii) capacity to ensure meaningful in13 volvement of family members, family care14 givers, and care recipients; and 

15 ‘‘(iii) collaboration with other State 

16 and community-based public, nonprofit, or 

17 private agencies; 

18 ‘‘(B) with respect to the population of fam19 ily caregivers to whom respite care information 

20 or services will be provided or for whom respite 

21 care workers and volunteers will be recruited 

22 and trained, a description of— 

23 ‘‘(i) the population of family care24 givers; 
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1 ‘‘(ii) the extent and nature of the res2 pite care needs of that population; 

3 ‘‘(iii) existing respite care services for 

4 that population, including numbers of fam5 ily caregivers being served and extent of 

6 unmet need; 

7 ‘‘(iv) existing methods or systems to 

8 coordinate respite care information and 

9 services to the population at the State and 

10 local level and extent of unmet need; 

11 ‘‘(v) how respite care information dis12 semination and coordination, respite care 

13 services, respite care worker and volunteer 

14 recruitment and training programs, or 

15 training programs for family caregivers 

16 that assist such family caregivers in mak17 ing informed decisions about respite care 

18 services will be provided using grant or co19 operative agreement funds; 

20 ‘‘(vi) a plan for collaboration and co21 ordination of the proposed respite care ac22 tivities with other related services or pro23 grams offered by public or private, non24 profit entities, including area agencies on 

25 aging; 
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1 ‘‘(vii) how the population, including 

2 family caregivers, care recipients, and rel3 evant public or private agencies, will par4 ticipate in the planning and implementa5 tion of the proposed respite care activities; 

6 ‘‘(viii) how the proposed respite care 

7 activities will make use, to the maximum 

8 extent feasible, of other Federal, State, 

9 and local funds, programs, contributions, 

10 other forms of reimbursements, personnel, 

11 and facilities; 

12 ‘‘(ix) respite care services available to 

13 family caregivers in the applicant’s State 

14 or locality, including unmet needs and how 

15 the applicant’s plan for use of funds will 

16 improve the coordination and distribution 

17 of respite care services for family care18 givers of children and adults with special 

19 needs; 

20 ‘‘(x) the criteria used to identify fam21 ily caregivers eligible for respite care serv22 ices; 

23 ‘‘(xi) how the quality and safety of 

24 any respite care services provided will be 

25 monitored, including methods to ensure 
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1 that respite care workers and volunteers 

2 are appropriately screened and possess the 

3 necessary skills to care for the needs of the 

4 care recipient in the absence of the family 

5 caregiver; and 

6 ‘‘(xii) the results expected from pro7 posed respite care activities and the proce8 dures to be used for evaluating those re9 sults; and 

10 ‘‘(C) assurances that, where appropriate, 

11 the applicant shall have a system for maintain12 ing the confidentiality of care recipient and 

13 family caregiver records. 

14 ‘‘(e) PRIORITY.—When awarding grants or coopera15 tive agreements under this section, the Secretary shall give 

16 priority to— 

17 ‘‘(1) applicants that show the greatest likeli18 hood of implementing or enhancing lifespan respite 

19 care statewide; and 

20 ‘‘(2) applicants from States that are not other21 wise receiving a grant under this title. 

22 ‘‘(f) USE OF GRANT OR COOPERATIVE AGREEMENT

23 FUNDS.— 

24 ‘‘(1) IN GENERAL.— 
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1 ‘‘(A) MANDATORY USES OF FUNDS.—Each 

2 eligible recipient that is awarded a grant or co3 operative agreement under this section shall use 

4 the funds, unless such a program is in exist5 ence— 

6 ‘‘(i) to develop lifespan respite care at 

7 the State and local levels; 

8 ‘‘(ii) to provide respite care services 

9 for family caregivers caring for children or 

10 adults; 

11 ‘‘(iii) to train and recruit respite care 

12 workers and volunteers; 

13 ‘‘(iv) to provide information to care14 givers about available respite and support 

15 services; and 

16 ‘‘(v) to assist caregivers in gaining ac17 cess to such services. 

18 ‘‘(B) DISCRETIONARY USES OF FUNDS.— 

19 Each eligible recipient that is awarded a grant 

20 or cooperative agreement under this section 

21 may use the funds for— 

22 ‘‘(i) training programs for family 

23 caregivers to assist such family caregivers 

24 in making informed decisions about respite 

25 care services; 
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1 ‘‘(ii) other services essential to the 

2 provision of respite care as the Secretary 

3 may specify; or 

4 ‘‘(iii) training and education for new 

5 caregivers. 

6 ‘‘(2) SUBCONTRACTS.—Each eligible recipient 

7 that is awarded a grant or cooperative agreement 

8 under this section may use the funds to subcontract 

9 with a public or nonprofit agency to carry out the 

10 activities described in paragraph (1). 

11 ‘‘(g) TERM OF GRANTS OR COOPERATIVE AGREE12 MENTS.— 

13 ‘‘(1) IN GENERAL.—The Secretary shall award 

14 grants or cooperative agreements under this section 

15 for terms that do not exceed 5 years. 

16 ‘‘(2) RENEWAL.—The Secretary may renew a 

17 grant or cooperative agreement under this section at 

18 the end of the term of the grant or cooperative 

19 agreement determined under paragraph (1). 

20 ‘‘(h) SUPPLEMENT, NOT SUPPLANT.—Funds made 

21 available under this section shall be used to supplement 

22 and not supplant other Federal, State, and local funds 

23 available for respite care services. 
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1 ‘‘SEC. 2903. NATIONAL LIFESPAN RESPITE RESOURCE CEN2 TER. 

3 ‘‘(a) ESTABLISHMENT.—The Secretary shall award a 

4 grant or cooperative agreement to a public or private non5 profit entity to establish a National Resource Center on 

6 Lifespan Respite Care (referred to in this section as the 

7 ‘center’). 

8 ‘‘(b) PURPOSES OF THE CENTER.—The center 

9 shall— 

10 ‘‘(1) maintain a national database on lifespan 

11 respite care; 

12 ‘‘(2) provide training and technical assistance 

13 to State, community, and nonprofit respite care pro14 grams; and 

15 ‘‘(3) provide information, referral, and edu16 cational programs to the public on lifespan respite 

17 care. 

18 ‘‘SEC. 2904. REPORT. 

19 ‘‘Not later than January 1, 2007, the Secretary shall 

20 report to the Congress on the activities undertaken under 

21 this title. Such report shall evaluate— 

22 ‘‘(1) the number of States that have lifespan 

23 respite care programs; 

24 ‘‘(2) the demographics of the caregivers receiv25 ing respite care services through grants or coopera26 tive agreements under this title; and 
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1 ‘‘(3) the effectiveness of entities receiving 

2 grants or cooperative agreements under this title. 

3 ‘‘SEC. 2905. AUTHORIZATION OF APPROPRIATIONS. 

4 ‘‘There are authorized to be appropriated to carry out 

5 this title— 

6 ‘‘(1) $90,500,000 for fiscal year 2006; and 

7 ‘‘(2) such sums as are necessary for fiscal years 

8 2007 through 2010.’’. 

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