II 

109TH CONGRESS 

1ST SESSION S. 1283 

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 SENATE OF THE UNITED STATES 

JUNE 21, 2005 

Mrs. CLINTON (for herself, Mr. WARNER, Ms. MIKULSKI, Mr. SMITH, Mr. 

KENNEDY, Ms. COLLINS, Mr. JEFFORDS, Mr. BOND, Mrs. MURRAY, Mr. 

COCHRAN, Mrs. BOXER, Ms. SNOWE, Mr. KERRY, Mr. TALENT, Mr. 

NELSON of Nebraska, Mr. COLEMAN, Mr. DURBIN, and Mr. HAGEL) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions 

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’’. 
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1 SEC. 2. LIFESPAN RESPITE CARE. 

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

3 seq.) is amended by adding at the end the following: 

4 ‘‘TITLE XXIX—LIFESPAN 

5 RESPITE CARE 

6 ‘‘SEC. 2901. FINDINGS AND PURPOSES. 

7 ‘‘(a) FINDINGS.—Congress finds that— 

8 ‘‘(1) an estimated 26,000,000 individuals in the 

9 United States care each year for 1 or more adult 

10 family members or friends who are chronically ill, 

11 disabled, or terminally ill; 

12 ‘‘(2) an estimated 18,000,000 children in the 

13 United States have chronic physical, developmental, 

14 behavioral, or emotional conditions that demand 

15 caregiver monitoring, management, supervision, or 

16 treatment beyond that required of children generally; 

17 ‘‘(3) nearly 4,000,000 individuals in the United 

18 States of all ages who have mental retardation or 

19 another developmental disability live with their fami20 lies; 

21 ‘‘(4) almost 25 percent of the Nation’s elders 

22 experience multiple chronic disabling conditions that 

23 make it necessary to rely on others for help in meet24 ing their daily needs; 
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1 ‘‘(5) every year, approximately 600,000 Ameri2 cans die at home and many of these individuals rely 

3 on extensive family caregiving before their death; 

4 ‘‘(6) of all individuals in the United States 

5 needing assistance in daily living, 42 percent are 

6 under age 65; 

7 ‘‘(7) there are insufficient resources to replace 

8 family caregivers with paid workers; 

9 ‘‘(8) if services provided by family caregivers 

10 had to be replaced with paid services, it would cost 

11 approximately $200,000,000,000 annually; 

12 ‘‘(9) the family caregiver role is personally re13 warding but can result in substantial emotional, 

14 physical, and financial hardship; 

15 ‘‘(10) approximately 75 percent of family care16 givers are women; 

17 ‘‘(11) family caregivers often do not know 

18 where to find information about available respite 

19 care or how to access it; 

20 ‘‘(12) available respite care programs are insuf21 ficient to meet the need and are directed at pri22 marily lower income populations and family care23 givers of the elderly, leaving large numbers of family 

24 caregivers without adequate support; and 
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1 ‘‘(13) the limited number of available respite 

2 care programs find it difficult to recruit appro3 priately trained respite workers. 

4 ‘‘(b) PURPOSES.—The purposes of this title are— 

5 ‘‘(1) to encourage States to establish State and 

6 local lifespan respite care programs; 

7 ‘‘(2) to improve and coordinate the dissemina8 tion of respite care information and resources to 

9 family caregivers; 

10 ‘‘(3) to provide, supplement, or improve respite 

11 care services to family caregivers; 

12 ‘‘(4) to promote innovative, flexible, and com13 prehensive approaches to— 

14 ‘‘(A) the delivery of respite care; 

15 ‘‘(B) respite care worker and volunteer re16 cruitment and training programs; and 

17 ‘‘(C) training programs for family care18 givers to assist such family caregivers in mak19 ing informed decisions about respite care serv20 ices; 

21 ‘‘(5) to support evaluative research to identify 

22 effective respite care services that alleviate, reduce, 

23 or minimize any negative consequences of caregiving; 

24 and 
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1 ‘‘(6) to promote the dissemination of results, 

2 findings, and information from programs and re3 search projects relating to respite care delivery, fam4 ily caregiver strain, respite care worker and volun5 teer recruitment and training, and training pro6 grams for family caregivers that assist such family 

7 caregivers in making informed decisions about res8 pite care services. 

9 ‘‘SEC. 2902. DEFINITIONS. 

10 ‘‘In this title: 

11 ‘‘(1) ELIGIBLE RECIPIENT.—The term ‘eligible 

12 recipient’ means— 

13 ‘‘(A) a State agency; 

14 ‘‘(B) any other public entity that is capa15 ble of operating on a statewide basis; 

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

17 is capable of operating on a statewide basis; 

18 ‘‘(D) a political subdivision of a State that 

19 has a population of not less than 3,000,000 in20 dividuals; or 

21 ‘‘(E) any recognized State respite coordi22 nating agency that has— 

23 ‘‘(i) a demonstrated ability to work 

24 with other State and community-based 

25 agencies; 
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1 ‘‘(ii) an understanding of respite care 

2 and family caregiver issues; and 

3 ‘‘(iii) the capacity to ensure meaning4 ful involvement of family members, family 

5 caregivers, and care recipients. 

6 ‘‘(2) ADULT WITH A SPECIAL NEED.—The term 

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

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

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

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

11 to others. 

12 ‘‘(3) CHILD WITH A SPECIAL NEED.—The term 

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

14 18 years of age who requires care or supervision be15 yond that required of children generally to— 

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

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

18 to others. 

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

20 caregiver’ means an unpaid family member, a foster 

21 parent, or another unpaid adult, who provides in22 home monitoring, management, supervision, or 

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

24 ‘‘(5) 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 ‘‘(6) LIFESPAN RESPITE CARE.—The term ‘life5 span respite care’ means a coordinated system of ac6 cessible, community-based respite care services for 

7 family caregivers of children or adults with special 

8 needs. 

9 ‘‘SEC. 2903. LIFESPAN RESPITE CARE GRANTS AND COOP10 ERATIVE AGREEMENTS. 

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

12 ‘‘(1) to expand and enhance respite care serv13 ices to family caregivers; 

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

15 coordination of respite care; and 

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

17 and quality of respite care services to family care18 givers, thereby reducing family caregiver strain. 

19 ‘‘(b) AUTHORIZATION.—Subject to subsection (f), the 

20 Secretary is authorized to award grants or cooperative 

21 agreements to eligible recipients who submit an applica22 tion pursuant to subsection (d). 

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

24 out this section, the Secretary shall work in cooperation 

25 with the National Family Caregiver Support Program Of-
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1 ficer of the Administration on Aging, and respite care pro2 gram officers in the Administration for Children and Fam3 ilies, the Administration on Developmental Disabilities, 

4 the Maternal and Child Health Bureau of the Health Re5 sources and Services Administration, and the Substance 

6 Abuse and Mental Health Services Administration, to en7 sure coordination of respite care services for family care8 givers of children and adults with special needs. 

9 ‘‘(d) APPLICATION.— 

10 ‘‘(1) SUBMISSION.—Each eligible recipient de11 siring to receive a grant or cooperative agreement 

12 under this section shall submit an application to the 

13 Secretary at such time, in such manner, and con14 taining such information as the Secretary shall re15 quire. 

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

17 under this section shall include— 

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

19 ‘‘(i) understanding of respite care and 

20 family caregiver issues; 

21 ‘‘(ii) capacity to ensure meaningful in22 volvement of family members, family care23 givers, and care recipients; and 
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1 ‘‘(iii) collaboration with other State 

2 and community-based public, nonprofit, or 

3 private agencies; 

4 ‘‘(B) with respect to the population of fam5 ily caregivers to whom respite care information 

6 or services will be provided or for whom respite 

7 care workers and volunteers will be recruited 

8 and trained, a description of— 

9 ‘‘(i) the population of family care10 givers; 

11 ‘‘(ii) the extent and nature of the res12 pite care needs of that population; 

13 ‘‘(iii) existing respite care services for 

14 that population, including numbers of fam15 ily caregivers being served and extent of 

16 unmet need; 

17 ‘‘(iv) existing methods or systems to 

18 coordinate respite care information and 

19 services to the population at the State and 

20 local level and extent of unmet need; 

21 ‘‘(v) how respite care information dis22 semination and coordination, respite care 

23 services, respite care worker and volunteer 

24 recruitment and training programs, or 

25 training programs for family caregivers 
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1 that assist such family caregivers in mak2 ing informed decisions about respite care 

3 services will be provided using grant or co4 operative agreement funds; 

5 ‘‘(vi) a plan for collaboration and co6 ordination of the proposed respite care ac7 tivities with other related services or pro8 grams offered by public or private, non9 profit entities, including area agencies on 

10 aging; 

11 ‘‘(vii) how the population, including 

12 family caregivers, care recipients, and rel13 evant public or private agencies, will par14 ticipate in the planning and implementa15 tion of the proposed respite care activities; 

16 ‘‘(viii) how the proposed respite care 

17 activities will make use, to the maximum 

18 extent feasible, of other Federal, State, 

19 and local funds, programs, contributions, 

20 other forms of reimbursements, personnel, 

21 and facilities; 

22 ‘‘(ix) respite care services available to 

23 family caregivers in the applicant’s State 

24 or locality, including unmet needs and how 

25 the applicant’s plan for use of funds will 
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1 improve the coordination and distribution 

2 of respite care services for family care3 givers of children and adults with special 

4 needs; 

5 ‘‘(x) the criteria used to identify fam6 ily caregivers eligible for respite care serv7 ices; 

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

9 any respite care services provided will be 

10 monitored, including methods to ensure 

11 that respite care workers and volunteers 

12 are appropriately screened and possess the 

13 necessary skills to care for the needs of the 

14 care recipient in the absence of the family 

15 caregiver; and 

16 ‘‘(xii) the results expected from pro17 posed respite care activities and the proce18 dures to be used for evaluating those re19 sults; and 

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

21 the applicant shall have a system for maintain22 ing the confidentiality of care recipient and 

23 family caregiver records. 

24 ‘‘(e) REVIEW OF APPLICATIONS.— 
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1 ‘‘(1) ESTABLISHMENT OF REVIEW PANEL.— 

2 The Secretary shall establish a panel to review appli3 cations submitted under this section. 

4 ‘‘(2) MEETINGS.—The panel shall meet as often 

5 as may be necessary to facilitate the expeditious re6 view of applications. 

7 ‘‘(3) FUNCTION OF PANEL.—The panel shall— 

8 ‘‘(A) review and evaluate each application 

9 submitted under this section; and 

10 ‘‘(B) make recommendations to the Sec11 retary concerning whether the application 

12 should be approved. 

13 ‘‘(f) AWARDING OF GRANTS OR COOPERATIVE

14 AGREEMENTS.— 

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

16 grants or cooperative agreements from among the 

17 applications approved by the panel under subsection 

18 (e)(3). 

19 ‘‘(2) PRIORITY.—When awarding grants or co20 operative agreements under this subsection, the Sec21 retary shall give priority to applicants that show the 

22 greatest likelihood of implementing or enhancing 

23 lifespan respite care statewide. 

24 ‘‘(g) USE OF GRANT OR COOPERATIVE AGREEMENT

25 FUNDS.— 
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1 ‘‘(1) IN GENERAL.— 

2 ‘‘(A) MANDATORY USES OF FUNDS.—Each 

3 eligible recipient that is awarded a grant or co4 operative agreement under this section shall use 

5 the funds for, unless such a program is in exist6 ence— 

7 ‘‘(i) the development of lifespan res8 pite care at the State and local levels; and 

9 ‘‘(ii) an evaluation of the effectiveness 

10 of such care. 

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

12 Each eligible recipient that is awarded a grant 

13 or cooperative agreement under this section 

14 may use the funds for— 

15 ‘‘(i) respite care services for family 

16 caregivers of children and adults with spe17 cial needs; 

18 ‘‘(ii) respite care worker and volunteer 

19 training programs; or 

20 ‘‘(iii) training programs for family 

21 caregivers to assist such family caregivers 

22 in making informed decisions about respite 

23 care services. 

24 ‘‘(C) EVALUATION.—If an eligible recipient 

25 uses funds awarded under this section for an 
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1 activity described in subparagraph (B), the eli2 gible recipient shall use funds for an evaluation 

3 of the effectiveness of the activity. 

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

5 that is awarded a grant or cooperative agreement 

6 under this section may use the funds to subcontract 

7 with a public or nonprofit agency to carry out the 

8 activities described in paragraph (1). 

9 ‘‘(h) TERM OF GRANTS OR COOPERATIVE AGREE10 MENTS.— 

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

12 grants or cooperative agreements under this section 

13 for terms that do not exceed 5 years. 

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

15 grant or cooperative agreement under this section at 

16 the end of the term of the grant or cooperative 

17 agreement determined under paragraph (1). 

18 ‘‘(i) SUPPLEMENT, NOT SUPPLANT.—Funds made 

19 available under this section shall be used to supplement 

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

21 available for respite care services. 

22 ‘‘(j) AUTHORIZATION OF APPROPRIATIONS.—There 

23 are authorized to be appropriated to carry out this section, 

24 such sums as may be necessary for each of fiscal years 

25 2006 through 2010. 
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1 ‘‘SEC. 2904. NATIONAL LIFESPAN RESPITE RESOURCE CEN2 TER. 

3 ‘‘(a) ESTABLISHMENT.—From funds appropriated 

4 under subsection (c), the Secretary shall award a grant 

5 or cooperative agreement to a public or private nonprofit 

6 entity to establish a National Resource Center on Lifespan 

7 Respite Care (referred to in this section as the ‘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 ‘‘(c) AUTHORIZATION OF APPROPRIATIONS.—There 

19 are authorized to be appropriated to carry out this section, 

20 such sums as may be necessary for each of fiscal years 

21 2006 through 2010.’’. 

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