I 

109TH CONGRESS 

1ST SESSION H. R. 1262

To amend the Public Health Service Act to fund breakthroughs in Alzheimer’s 

disease research while providing more help to caregivers and increasing 

public education about prevention. 

IN THE HOUSE OF REPRESENTATIVES 

MARCH 10, 2005

Mr. SMITH of New Jersey (for himself, Mr. MARKEY, and Mr. BURGESS) introduced the following bill; which was referred to the Committee on Energy and Commerce, and in addition to the Committee on Education and 

the Workforce, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned 

A BILL

To amend the Public Health Service Act to fund breakthroughs in Alzheimer’s disease research while providing 

more help to caregivers and increasing public education 

about prevention.

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; TABLE OF CONTENTS. 

4 (a) SHORT TITLE.—This Act may be cited as the 

5 ‘‘Ronald Reagan Alzheimer’s Breakthrough Act of 2005’’. 
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1 (b) TABLE OF CONTENTS.—The table of contents of 

2 this Act is as follows:

Sec. 1. Short title; table of contents. 

Sec. 2. Findings. 

TITLE I—INCREASING THE FEDERAL COMMITMENT TO 

ALZHEIMER’S RESEARCH 

Sec. 101. Doubling NIH funding for Alzheimer’s disease research. 

Sec. 102. Priority to Alzheimer’s disease research. 

Sec. 103. Alzheimer’s disease prevention initiative. 

Sec. 104. Alzheimer’s disease clinical research. 

Sec. 105. Research on Alzheimer’s disease caregiving. 

Sec. 106. National summit on Alzheimer’s disease. 

TITLE II—PUBLIC EDUCATION ABOUT ALZHEIMER’S DISEASE 

Sec. 201. Public education campaign. 

TITLE III—ASSISTANCE FOR CAREGIVERS 

Sec. 301. Increased funding for National Family Caregiver Support Program. 

Sec. 302. Alzheimer’s disease demonstration grants. 

Sec. 303. Safe return program. 

Sec. 304. Lifespan respite care.

3 SEC. 2. FINDINGS. 

4 Congress makes the following findings: 

5 (1) Alzheimer’s disease is a disorder that de6 stroys cells in the brain. The disease is the leading 

7 cause of dementia, a condition that involves gradual 

8 memory loss, decline in the ability to perform rou9 tine tasks, disorientation, difficulty in learning, loss 

10 of language skills, impairment of judgment, and per11 sonality changes. As the disease progresses, people 

12 with Alzheimer’s disease become unable to care for 

13 themselves. The loss of brain cells eventually leads 

14 to the failure of other systems in the body. 
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1 (2) An estimated 4,500,000 Americans have 

2 Alzheimer’s disease and 1 in 10 people have a family 

3 member with the disease. By 2050, the number of 

4 individuals with the disease could range from 

5 13,200,000 to 16,000,000 unless science finds a way 

6 to prevent or cure the disease. 

7 (3) One in 10 people over the age of 65, and 

8 nearly half of those over the age of 85 have Alz9 heimer’s disease. Younger people also get the dis10 ease. 

11 (4) The Alzheimer’s disease process may begin 

12 in the brain as many as 20 years before the symp13 toms of Alzheimer’s disease appear. A person will 

14 live an average of 8 years and as many as 20 once 

15 the symptoms of Alzheimer’s disease appear. 

16 (5) The average lifetime cost of care for an in17 dividual with Alzheimer’s disease is $174,000. 

18 (6) In 2000, medicare alone spent 

19 $62,000,000,000 for the care of individuals with 

20 Alzheimer’s disease and this amount is projected to 

21 increase to $160,000,000,000 in 2010. 

22 (7) Forty-nine percent of medicare beneficiaries 

23 who have Alzheimer’s disease also receive medicaid. 

24 Of the total population dually eligible for medicare 

25 and medicaid, 22 percent have Alzheimer’s disease. 
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1 (8) Seven in 10 people with Alzheimer’s disease 

2 live at home. While almost 75 percent of home care 

3 is provided by family and friends, the average an4 nual cost of paid care for people with Alzheimer’s 

5 disease at home is $12,500 per year. Almost all fam6 ilies pay this cost out of pocket. 

7 (9) Nearly 60 percent of all nursing home resi8 dents have Alzheimer’s disease or a related disorder. 

9 The average annual cost of Alzheimer’s disease nurs10 ing home care is nearly $64,000. Medicaid pays half 

11 of the total nursing home bill and helps 2 out of 3 

12 residents pay for their care. Medicaid expenditures 

13 for nursing home care for people with Alzheimer’s 

14 disease are estimated to increase from 

15 $19,000,000,000 in 2000 to $24,000,000,000 in 

16 2010. 

17 (10) In fiscal year 2004, the Federal Govern18 ment will spend an estimated $680,000,000 on Alz19 heimer’s disease research. If our Nation achieves its 

20 research goals (preventing the onset of Alzheimer’s 

21 disease in those at risk and treating and delaying 

22 progression of the disease in those who have symp23 toms), the projected number of cases of Alzheimer’s 

24 disease can be reduced by approximately 40 percent 

25 by the middle of the century. The number of baby 
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1 boomers with moderate to severe Alzheimer’s disease 

2 can be reduced by 60 percent. 

3 (11) A study commissioned by the United Hos4 pital Fund estimated that the annual value of this 

5 informal care system is $257,000,000,000. Family 

6 caregiving comes at enormous physical, emotional, 

7 and financial sacrifice, putting the whole system at 

8 risk. 

9 (12) One in 8 Alzheimer’s disease caregivers be10 comes ill or injured as a direct result of caregiving. 

11 One in 3 uses medication for problems related to 

12 caregiving. Older caregivers are 3 times more likely 

13 to become clinically depressed than others in their 

14 age group. 

15 (13) Elderly spouses strained by caregiving are 

16 63 percent more likely to die during a given 4-year 

17 period than other spouses their age. 

18 (14) Almost 3 of 4 caregivers are women. One 

19 in 3 has children or grandchildren under the age of 

20 18 living at home. Caregiving leaves them less time 

21 for other family members and they are much more 

22 likely to report family conflicts because of their 

23 caregiving role. 

24 (15) Most Alzheimer’s disease caregivers work 

25 outside the home before beginning their caregiving 
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1 careers, but caregiving forces them to miss work, cut 

2 back to part-time, take less demanding jobs, choose 

3 early retirement, or give up work altogether. As a 

4 result, in 2002, Alzheimer’s disease cost American 

5 business an estimated $36,500,000,000 in lost pro6 ductivity, as well as an additional $24,600,000,000 

7 in business contributions to the total cost of care. 

8 TITLE I—INCREASING THE FED9 ERAL COMMITMENT TO ALZ10 HEIMER’S RESEARCH 

11 SEC. 101. DOUBLING NIH FUNDING FOR ALZHEIMER’S DIS12 EASE RESEARCH. 

13 (a) IN GENERAL.—For the purpose of conducting 

14 and supporting research on Alzheimer’s disease (including 

15 related activities under subpart 5 of part C of title IV of 

16 the Public Health Service Act (42 U.S.C. 285e et seq.) 

17 there is authorized to be appropriated $1,400,000,000 for 

18 fiscal year 2006, and such sums as may be necessary for 

19 each of fiscal years 2007 through 2010. 

20 (b) AGING PROCESS REGARDING WOMEN.—Section 

21 445H(b) of the Public Health Service Act (42 U.S.C. 

22 285e–10(b)) is amended by striking ‘‘2003’’ and inserting 

23 ‘‘2010’’. 

24 (c) CLINICAL RESEARCH AND TRAINING AWARDS.—

25 Section 445I(d) of the Public Health Service Act (42 
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1 U.S.C. 285e–10a(d)) is amended by striking ‘‘2005’’ and 

2 inserting ‘‘2010’’. 

3 SEC. 102. PRIORITY TO ALZHEIMER’S DISEASE RESEARCH. 

4 Section 443 of the Public Health Service Act (42 

5 U.S.C. 285e) is amended—

6 (1) by striking ‘‘The general’’ and inserting 

7 ‘‘(a) In General.—The general’’; and 

8 (2) by adding at the end the following: 

9 ‘‘(b) PRIORITIES.—The Director of the Institute 

10 shall, in expending amounts appropriated under this sub11 part, give priority to conducting and supporting Alz12 heimer’s disease research.’’. 

13 SEC. 103. ALZHEIMER’S DISEASE PREVENTION INITIATIVE. 

14 Section 444 of the Public Health Service Act (42 

15 U.S.C. 285e–1) is amended—

16 (1) in subsection (d), by inserting ‘‘and train17 ing’’ after ‘‘conduct research’’; and 

18 (2) by adding at the end the following: 

19 ‘‘(e) The Director of the National Institutes of 

20 Health shall, in collaboration with the Director of the In21 stitute, the directors of other relevant institutes, and with 

22 volunteer organizations and other stakeholders, undertake 

23 an Alzheimer’s Disease Prevention Initiative to—

24 ‘‘(1) accelerate the discovery of new risk and 

25 protective factors for Alzheimer’s disease; 
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1 ‘‘(2) rapidly identify candidate diagnostics, 

2 therapies, or preventive interventions or agents for 

3 clinical investigation and trials relating to Alz4 heimer’s disease; 

5 ‘‘(3) support or undertake such investigations 

6 and trials; and 

7 ‘‘(4) implement effective prevention and treat8 ment strategies, including strategies to improve pa9 tient care and alleviate caregiver burdens relating to 

10 Alzheimer’s disease.’’. 

11 SEC. 104. ALZHEIMER’S DISEASE CLINICAL RESEARCH. 

12 (a) CLINICAL RESEARCH.—Section 445F of the Pub13 lic Health Service Act (42 U.S.C. 285e–8) is amended to 

14 read as follows: 

15 ‘‘SEC. 445F. ALZHEIMER’S DISEASE CLINICAL RESEARCH. 

16 ‘‘(a) IN GENERAL.—The Director of the Institute, 

17 pursuant to subsections (d) and (e) of section 444, shall 

18 conduct and support cooperative clinical research regard19 ing Alzheimer’s disease. Such research shall include—

20 ‘‘(1) investigating therapies, interventions, and 

21 agents to detect, treat, slow the progression of, or 

22 prevent Alzheimer’s disease; 

23 ‘‘(2) enhancing the national infrastructure for 

24 the conduct of clinical trials; 
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1 ‘‘(3) developing and testing novel approaches to 

2 the design and analysis of such trials; 

3 ‘‘(4) facilitating the enrollment of patients for 

4 such trials, including patients from diverse popu5 lations; 

6 ‘‘(5) developing improved diagnostics and 

7 means of patient assessment for Alzheimer’s disease; 

8 and 

9 ‘‘(6) as determined appropriate by the Director 

10 of the Institute, the Alzheimer’s Disease Centers 

11 and Alzheimer’s Disease Research Centers estab12 lished under section 445. 

13 ‘‘(b) EARLY DIAGNOSIS AND DETECTION RE14 SEARCH.—

15 ‘‘(1) IN GENERAL.—The Director of the Insti16 tute, in consultation with the directors of other rel17 evant institutes and centers of the National Insti18 tutes of Health, shall conduct, or make grants for 

19 the conduct of, research related to the early detec20 tion and diagnosis of Alzheimer’s disease and of 

21 mild cognitive impairment or other potential precur22 sors to Alzheimer’s disease. 

23 ‘‘(2) EVALUATION.—The research described in 

24 paragraph (1) may include the evaluation of diag25 nostic tests and imaging techniques. 
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1 ‘‘(c) VASCULAR DISEASE.—The Director of the Insti2 tute, in consultation with the directors of other relevant 

3 institutes and centers of the National Institutes of Health, 

4 shall conduct, or make grants for the conduct of, research 

5 related to the relationship of vascular disease and Alz6 heimer’s disease, including clinical trials to determine 

7 whether drugs developed to prevent cerebrovascular dis8 ease can prevent the onset or progression of Alzheimer’s 

9 disease. 

10 ‘‘(d) NATIONAL ALZHEIMER’S COORDINATING CEN11 TER.—The Director of the Institute may establish a Na12 tional Alzheimer’s Coordinating Center to facilitate col13 laborative research among the Alzheimer’s Disease Cen14 ters and Alzheimer’s Disease Research Centers established 

15 under section 445.’’. 

16 (b) ALZHEIMER’S DISEASE CENTERS.—Section 

17 445(a)(1) of the Public Health Service Act (42 U.S.C. 

18 285e–2(a)(1)) is amended by inserting ‘‘, and outcome 

19 measures and disease management’’ after ‘‘treatment 

20 methods’’. 

21 SEC. 105. RESEARCH ON ALZHEIMER’S DISEASE 

22 CAREGIVING. 

23 Section 445C of the Public Health Service Act (42 

24 U.S.C. 285e–5) is amended—
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1 (1) by striking ‘‘Sec. 445C. (a)’’ and inserting 

2 the following: 

3 ‘‘SEC. 445C. RESEARCH ON ALZHEIMER’S DISEASE SERV4 ICES AND CAREGIVING. 

5 ‘‘(a) SERVICES RESEARCH.—’’; 

6 (2) by striking subsections (b), (c), and (e); 

7 (3) by inserting after subsection (a) the fol8 lowing: 

9 ‘‘(b) INTERVENTIONS RESEARCH.—The Director 

10 shall, in collaboration with the directors of the other rel11 evant institutes and centers of the National Institutes of 

12 Health, conduct, or make grants for the conduct of, clin13 ical, social, and behavioral research related to interven14 tions designed to help caregivers of patients with Alz15 heimer’s disease and related disorders and improve patient 

16 outcomes.’’; and 

17 (4) in subsection (d) by striking ‘‘(d) the Direc18 tor’’ and inserting ‘‘(c) Model Curricula and Tech19 niques. —The Director’’. 

20 SEC. 106. NATIONAL SUMMIT ON ALZHEIMER’S DISEASE. 

21 (a) IN GENERAL.—Not later than 1 year after the 

22 date of enactment of this Act, the Secretary of Health and 

23 Human Services (referred to in this section as the ‘‘Sec24 retary’’) shall convene a summit of researchers, represent25 atives of academic institutions, Federal and State policy-
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1 makers, public health professionals, and representatives of 

2 voluntary health agencies to provide a detailed overview 

3 of current research activities at the National Institutes of 

4 Health, as well as to discuss and solicit input related to 

5 potential areas of collaboration between the National In6 stitutes of Health and other Federal health agencies, in7 cluding the Centers for Disease Control and Prevention, 

8 the Administration on Aging, the Agency for Healthcare 

9 Research and Quality, and the Health Resources and 

10 Services Administration, related to research, prevention, 

11 and treatment of Alzheimer’s disease. 

12 (b) FOCUS AREAS.—The summit convened under 

13 subsection (a) shall focus on—

14 (1) a broad range of Alzheimer’s disease re15 search activities relating to biomedical research, pre16 vention research, and caregiving issues; 

17 (2) clinical research for the development and 

18 evaluation of new treatments for the disease; 

19 (3) translational research on evidence-based and 

20 cost-effective best practices in the treatment and 

21 prevention of the disease; 

22 (4) information and education programs for 

23 health care professionals and the public relating to 

24 the disease; 
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1 (5) priorities among the programs and activities 

2 of the various Federal agencies regarding such dis3 eases; and 

4 (6) challenges and opportunities for scientists, 

5 clinicians, patients, and voluntary organizations re6 lating to the disease. 

7 (c) REPORT.—Not later than 180 days after the date 

8 on which the National Summit on Alzheimer’s Disease is 

9 convened under subsection (a), the Director of National 

10 Institutes of Health shall prepare and submit to the ap11 propriate committees of Congress a report that includes 

12 a summary of the proceedings of the summit and a de13 scription of Alzheimer’s research, education, and other ac14 tivities that are conducted or supported through the na15 tional research institutes. 

16 (d) PUBLIC INFORMATION.—The Secretary shall 

17 make readily available to the public information about the 

18 research, education, and other activities relating to Alz19 heimer’s disease and other related dementias, conducted 

20 or supported by the National Institutes of Health. 

21 (e) AUTHORIZATION OF APPROPRIATIONS.—There 

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

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

24 2006 through 2010. 
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1 TITLE II—PUBLIC EDUCATION 

2 ABOUT ALZHEIMER’S DISEASE 

3 SEC. 201. PUBLIC EDUCATION CAMPAIGN. 

4 Part P of title III of the Public Health Service Act 

5 (42 U.S.C. 280g et seq.) is amended by adding at the end 

6 the following: 

7 ‘‘SEC. 399O. ALZHEIMER’S DISEASE PUBLIC EDUCATION 

8 CAMPAIGN. 

9 ‘‘(a) IN GENERAL.—The Secretary, acting through 

10 the Director of the Centers for Disease Control and Pre11 vention, shall carry out a program to educate the public 

12 and public health community regarding—

13 ‘‘(1) diagnosis and early warning signs of Alz14 heimer’s disease; and 

15 ‘‘(2) how healthy lifestyles could maintain cog16 nitive function and brain health. 

17 ‘‘(b) EDUCATION OF HEALTH PROFESSIONALS AND

18 PARTNERSHIPS.—The program carried out under sub19 section (a) shall include activities to educate health profes20 sionals about the diagnosis, care, and management of Alz21 heimer’s disease and dementia, and the development of 

22 partnerships between State health departments, area 

23 agencies on aging, and local organizations serving people 

24 with Alzheimer’s disease. 
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1 ‘‘(c) AUTHORIZATION OF APPROPRIATIONS.—For the 

2 purpose of carrying out this section, there are authorized 

3 to be appropriated $7,000,000 for fiscal year 2006, and 

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

5 2007 through 2010.’’. 

6 TITLE III—ASSISTANCE FOR 

7 CAREGIVERS 

8 SEC. 301. INCREASED FUNDING FOR NATIONAL FAMILY 

9 CAREGIVER SUPPORT PROGRAM. 

10 (a) IN GENERAL.—Section 303(e)(1) of the Older 

11 Americans Act of 1965 (42 U.S.C. 3023(e)(1)) is amend12 ed by striking ‘‘$125,000,000 for fiscal year 2001’’ and 

13 inserting ‘‘$250,000,000 for fiscal year 2006’’. 

14 (b) NATIVE AMERICANS.—Section 643(2) of the 

15 Older Americans Act of 1965 (42 U.S.C. 3057n(2)) is 

16 amended by striking ‘‘$5,000,000 for fiscal year 2001’’ 

17 and inserting ‘‘$10,000,000 for fiscal year 2006’’. 

18 SEC. 302. ALZHEIMER’S DISEASE DEMONSTRATION 

19 GRANTS. 

20 Section 398B(e) of the Public Health Service Act (42 

21 U.S.C. 280c–5(e)) is amended—

22 (1) by striking ‘‘and such’’ and inserting 

23 ‘‘such’’; and 

24 (2) by inserting before the period ‘‘, 

25 $25,000,000 for fiscal year 2006, and such sums as 
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1 may be necessary for each of the fiscal years 2007 

2 through 2010’’. 

3 SEC. 303. SAFE RETURN PROGRAM. 

4 Section 240001(d) of the Violent Crime Control and 

5 Law Enforcement Act of 1994 (42 U.S.C. 14181(d)) is 

6 amended to read as follows: 

7 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 

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

9 $1,000,000 for fiscal year 2006.’’. 

10 SEC. 304. LIFESPAN RESPITE CARE. 

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

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

13 ‘‘TITLE XXIX—LIFESPAN 

14 RESPITE CARE 

15 ‘‘SEC. 2901. FINDINGS AND PURPOSES. 

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

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

18 United States care each year for 1 or more adult 

19 family members or friends who are chronically ill, 

20 disabled, or terminally ill; 

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

22 United States have chronic physical, developmental, 

23 behavioral, or emotional conditions that demand 

24 caregiver monitoring, management, supervision, or 

25 treatment beyond that required of children generally; 
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1 ‘‘(3) nearly 4,000,000 individuals in the United 

2 States of all ages who have mental retardation or 

3 another developmental disability live with their fami4 lies; 

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

6 experience multiple chronic disabling conditions that 

7 make it necessary to rely on others for help in meet8 ing their daily needs; 

9 ‘‘(5) every year, approximately 600,000 Ameri10 cans die at home and many of these individuals rely 

11 on extensive family caregiving before their death; 

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

13 needing assistance in daily living, 42 percent are 

14 under age 65; 

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

16 family caregivers with paid workers; 

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

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

19 approximately $200,000,000,000 annually; 

20 ‘‘(9) the family caregiver role is personally re21 warding but can result in substantial emotional, 

22 physical, and financial hardship; 

23 ‘‘(10) approximately 75 percent of family care24 givers are women; 
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1 ‘‘(11) family caregivers often do not know 

2 where to find information about available respite 

3 care or how to access it; 

4 ‘‘(12) available respite care programs are insuf5 ficient to meet the need and are directed at pri6 marily lower income populations and family care7 givers of the elderly, leaving large numbers of family 

8 caregivers without adequate support; and 

9 ‘‘(13) the limited number of available respite 

10 care programs find it difficult to recruit appro11 priately trained respite workers. 

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

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

14 local lifespan respite care programs; 

15 ‘‘(2) to improve and coordinate the dissemina16 tion of respite care information and resources to 

17 family caregivers; 

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

19 care services to family caregivers; 

20 ‘‘(4) to promote innovative, flexible, and com21 prehensive approaches to—

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

23 ‘‘(B) respite care worker and volunteer re24 cruitment and training programs; and 
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1 ‘‘(C) training programs for family care2 givers to assist such family caregivers in mak3 ing informed decisions about respite care serv4 ices; 

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

6 effective respite care services that alleviate, reduce, 

7 or minimize any negative consequences of caregiving; 

8 and 

9 ‘‘(6) to promote the dissemination of results, 

10 findings, and information from programs and re11 search projects relating to respite care delivery, fam12 ily caregiver strain, respite care worker and volun13 teer recruitment and training, and training pro14 grams for family caregivers that assist such family 

15 caregivers in making informed decisions about res16 pite care services. 

17 ‘‘SEC. 2902. DEFINITIONS. 

18 ‘‘In this title: 

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

20 recipient’ means—

21 ‘‘(A) a State agency; 

22 ‘‘(B) any other public entity that is capa23 ble of operating on a statewide basis; 

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

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

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

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

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

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

19 to others. 

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

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

22 18 years of age who requires care or supervision be23 yond that required of children generally to—

24 ‘‘(A) meet the child’s basic needs; or 
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1 ‘‘(B) prevent physical self-injury or injury 

2 to others. 

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

4 caregiver’ means an unpaid family member, a foster 

5 parent, or another unpaid adult, who provides in6 home monitoring, management, supervision, or 

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

8 ‘‘(5) RESPITE CARE.—The term ‘respite care’ 

9 means planned or emergency care provided to a 

10 child or adult with a special need in order to provide 

11 temporary relief to the family caregiver of that child 

12 or adult. 

13 ‘‘(6) LIFESPAN RESPITE CARE.—The term ‘life14 span respite care’ means a coordinated system of ac15 cessible, community-based respite care services for 

16 family caregivers of children or adults with special 

17 needs. 

18 ‘‘SEC. 2903. LIFESPAN RESPITE CARE GRANTS AND COOP19 ERATIVE AGREEMENTS. 

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

21 ‘‘(1) to expand and enhance respite care serv22 ices to family caregivers; 

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

24 coordination of respite care; and 
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1 ‘‘(3) to provide, supplement, or improve access 

2 and quality of respite care services to family care3 givers, thereby reducing family caregiver strain. 

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

5 Secretary is authorized to award grants or cooperative 

6 agreements to eligible recipients who submit an applica7 tion pursuant to subsection (d). 

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

9 out this section, the Secretary shall work in cooperation 

10 with the National Family Caregiver Support Program Of11 ficer of the Administration on Aging, and respite care pro12 gram officers in the Administration for Children and Fam13 ilies, the Administration on Developmental Disabilities, 

14 the Maternal and Child Health Bureau of the Health Re15 sources and Services Administration, and the Substance 

16 Abuse and Mental Health Services Administration, to en17 sure coordination of respite care services for family care18 givers of children and adults with special needs. 

19 ‘‘(d) APPLICATION.—

20 ‘‘(1) SUBMISSION.—Each eligible recipient de21 siring to receive a grant or cooperative agreement 

22 under this section shall submit an application to the 

23 Secretary at such time, in such manner, and con24 taining such information as the Secretary shall re25 quire. 
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1 ‘‘(2) CONTENTS.—Each application submitted 

2 under this section shall include—

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

4 ‘‘(i) understanding of respite care and 

5 family caregiver issues; 

6 ‘‘(ii) capacity to ensure meaningful in7 volvement of family members, family care8 givers, and care recipients; and 

9 ‘‘(iii) collaboration with other State 

10 and community-based public, nonprofit, or 

11 private agencies; 

12 ‘‘(B) with respect to the population of fam13 ily caregivers to whom respite care information 

14 or services will be provided or for whom respite 

15 care workers and volunteers will be recruited 

16 and trained, a description of—

17 ‘‘(i) the population of family care18 givers; 

19 ‘‘(ii) the extent and nature of the res20 pite care needs of that population; 

21 ‘‘(iii) existing respite care services for 

22 that population, including numbers of fam23 ily caregivers being served and extent of 

24 unmet need; 
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1 ‘‘(iv) existing methods or systems to 

2 coordinate respite care information and 

3 services to the population at the State and 

4 local level and extent of unmet need; 

5 ‘‘(v) how respite care information dis6 semination and coordination, respite care 

7 services, respite care worker and volunteer 

8 recruitment and training programs, or 

9 training programs for family caregivers 

10 that assist such family caregivers in mak11 ing informed decisions about respite care 

12 services will be provided using grant or co13 operative agreement funds; 

14 ‘‘(vi) a plan for collaboration and co15 ordination of the proposed respite care ac16 tivities with other related services or pro17 grams offered by public or private, non18 profit entities, including area agencies on 

19 aging; 

20 ‘‘(vii) how the population, including 

21 family caregivers, care recipients, and rel22 evant public or private agencies, will par23 ticipate in the planning and implementa24 tion of the proposed respite care activities; 
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1 ‘‘(viii) how the proposed respite care 

2 activities will make use, to the maximum 

3 extent feasible, of other Federal, State, 

4 and local funds, programs, contributions, 

5 other forms of reimbursements, personnel, 

6 and facilities; 

7 ‘‘(ix) respite care services available to 

8 family caregivers in the applicant’s State 

9 or locality, including unmet needs and how 

10 the applicant’s plan for use of funds will 

11 improve the coordination and distribution 

12 of respite care services for family care13 givers of children and adults with special 

14 needs; 

15 ‘‘(x) the criteria used to identify fam16 ily caregivers eligible for respite care serv17 ices; 

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

19 any respite care services provided will be 

20 monitored, including methods to ensure 

21 that respite care workers and volunteers 

22 are appropriately screened and possess the 

23 necessary skills to care for the needs of the 

24 care recipient in the absence of the family 

25 caregiver; and 
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1 ‘‘(xii) the results expected from pro2 posed respite care activities and the proce3 dures to be used for evaluating those re4 sults; and 

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

6 the applicant shall have a system for maintain7 ing the confidentiality of care recipient and 

8 family caregiver records. 

9 ‘‘(e) REVIEW OF APPLICATIONS.—

10 ‘‘(1) ESTABLISHMENT OF REVIEW PANEL.—

11 The Secretary shall establish a panel to review appli12 cations submitted under this section. 

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

14 as may be necessary to facilitate the expeditious re15 view of applications. 

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

17 ‘‘(A) review and evaluate each application 

18 submitted under this section; and 

19 ‘‘(B) make recommendations to the Sec20 retary concerning whether the application 

21 should be approved. 

22 ‘‘(f) AWARDING OF GRANTS OR COOPERATIVE

23 AGREEMENTS.—

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

25 grants or cooperative agreements from among the 
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1 applications approved by the panel under subsection 

2 (e)(3). 

3 ‘‘(2) PRIORITY.—When awarding grants or co4 operative agreements under this subsection, the Sec5 retary shall give priority to applicants that show the 

6 greatest likelihood of implementing or enhancing 

7 lifespan respite care statewide. 

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

9 FUNDS.—

10 ‘‘(1) IN GENERAL.—

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

12 eligible recipient that is awarded a grant or co13 operative agreement under this section shall use 

14 the funds for, unless such a program is in exist15 ence—

16 ‘‘(i) the development of lifespan res17 pite care at the State and local levels; and 

18 ‘‘(ii) an evaluation of the effectiveness 

19 of such care. 

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

21 Each eligible recipient that is awarded a grant 

22 or cooperative agreement under this section 

23 may use the funds for—
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1 ‘‘(i) respite care services for family 

2 caregivers of children and adults with spe3 cial needs; 

4 ‘‘(ii) respite care worker and volunteer 

5 training programs; or 

6 ‘‘(iii) training programs for family 

7 caregivers to assist such family caregivers 

8 in making informed decisions about respite 

9 care services. 

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

11 uses funds awarded under this section for an 

12 activity described in subparagraph (B), the eli13 gible recipient shall use funds for an evaluation 

14 of the effectiveness of the activity. 

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

16 that is awarded a grant or cooperative agreement 

17 under this section may use the funds to subcontract 

18 with a public or nonprofit agency to carry out the 

19 activities described in paragraph (1). 

20 ‘‘(h) TERM OF GRANTS OR COOPERATIVE AGREE21 MENTS.—

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

23 grants or cooperative agreements under this section 

24 for terms that do not exceed 5 years. 
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1 ‘‘(2) RENEWAL.—The Secretary may renew a 

2 grant or cooperative agreement under this section at 

3 the end of the term of the grant or cooperative 

4 agreement determined under paragraph (1). 

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

6 available under this section shall be used to supplement 

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

8 available for respite care services. 

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

10 are authorized to be appropriated to carry out this sec11 tion—

12 ‘‘(1) $90,500,000 for fiscal year 2006; and 

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

14 2007 through 2010. 

15 ‘‘SEC. 2904. NATIONAL LIFESPAN RESPITE RESOURCE CEN16 TER. 

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

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

19 or cooperative agreement to a public or private nonprofit 

20 entity to establish a National Resource Center on Lifespan 

21 Respite Care (referred to in this section as the ‘center’). 

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

23 shall—

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

25 respite care; 
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1 ‘‘(2) provide training and technical assistance 

2 to State, community, and nonprofit respite care pro3 grams; and 

4 ‘‘(3) provide information, referral, and edu5 cational programs to the public on lifespan respite 

6 care. 

7 ‘‘(c) AUTHORIZATION OF APPROPRIATIONS.—There 

8 are authorized to be appropriated to carry out this section 

9 $500,000 for each of fiscal years 2006 through 2010.’’.

Æ