[Congressional Bills 109th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1262 Introduced in House (IH)]






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.

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

SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

    (a) Short Title.--This Act may be cited as the ``Ronald Reagan 
Alzheimer's Breakthrough Act of 2005''.
    (b) Table of Contents.--The table of contents of 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.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) Alzheimer's disease is a disorder that destroys cells 
        in the brain. The disease is the leading cause of dementia, a 
        condition that involves gradual memory loss, decline in the 
        ability to perform routine tasks, disorientation, difficulty in 
        learning, loss of language skills, impairment of judgment, and 
        personality changes. As the disease progresses, people with 
        Alzheimer's disease become unable to care for themselves. The 
        loss of brain cells eventually leads to the failure of other 
        systems in the body.
            (2) An estimated 4,500,000 Americans have Alzheimer's 
        disease and 1 in 10 people have a family member with the 
        disease. By 2050, the number of individuals with the disease 
        could range from 13,200,000 to 16,000,000 unless science finds 
        a way to prevent or cure the disease.
            (3) One in 10 people over the age of 65, and nearly half of 
        those over the age of 85 have Alzheimer's disease. Younger 
        people also get the disease.
            (4) The Alzheimer's disease process may begin in the brain 
        as many as 20 years before the symptoms of Alzheimer's disease 
        appear. A person will live an average of 8 years and as many as 
        20 once the symptoms of Alzheimer's disease appear.
            (5) The average lifetime cost of care for an individual 
        with Alzheimer's disease is $174,000.
            (6) In 2000, medicare alone spent $62,000,000,000 for the 
        care of individuals with Alzheimer's disease and this amount is 
        projected to increase to $160,000,000,000 in 2010.
            (7) Forty-nine percent of medicare beneficiaries who have 
        Alzheimer's disease also receive medicaid. Of the total 
        population dually eligible for medicare and medicaid, 22 
        percent have Alzheimer's disease.
            (8) Seven in 10 people with Alzheimer's disease live at 
        home. While almost 75 percent of home care is provided by 
        family and friends, the average annual cost of paid care for 
        people with Alzheimer's disease at home is $12,500 per year. 
        Almost all families pay this cost out of pocket.
            (9) Nearly 60 percent of all nursing home residents have 
        Alzheimer's disease or a related disorder. The average annual 
        cost of Alzheimer's disease nursing home care is nearly 
        $64,000. Medicaid pays half of the total nursing home bill and 
        helps 2 out of 3 residents pay for their care. Medicaid 
        expenditures for nursing home care for people with Alzheimer's 
        disease are estimated to increase from $19,000,000,000 in 2000 
        to $24,000,000,000 in 2010.
            (10) In fiscal year 2004, the Federal Government will spend 
        an estimated $680,000,000 on Alzheimer's disease research. If 
        our Nation achieves its research goals (preventing the onset of 
        Alzheimer's disease in those at risk and treating and delaying 
        progression of the disease in those who have symptoms), the 
        projected number of cases of Alzheimer's disease can be reduced 
        by approximately 40 percent by the middle of the century. The 
        number of baby boomers with moderate to severe Alzheimer's 
        disease can be reduced by 60 percent.
            (11) A study commissioned by the United Hospital Fund 
        estimated that the annual value of this informal care system is 
        $257,000,000,000. Family caregiving comes at enormous physical, 
        emotional, and financial sacrifice, putting the whole system at 
        risk.
            (12) One in 8 Alzheimer's disease caregivers becomes ill or 
        injured as a direct result of caregiving. One in 3 uses 
        medication for problems related to caregiving. Older caregivers 
        are 3 times more likely to become clinically depressed than 
        others in their age group.
            (13) Elderly spouses strained by caregiving are 63 percent 
        more likely to die during a given 4-year period than other 
        spouses their age.
            (14) Almost 3 of 4 caregivers are women. One in 3 has 
        children or grandchildren under the age of 18 living at home. 
        Caregiving leaves them less time for other family members and 
        they are much more likely to report family conflicts because of 
        their caregiving role.
            (15) Most Alzheimer's disease caregivers work outside the 
        home before beginning their caregiving careers, but caregiving 
        forces them to miss work, cut back to part-time, take less 
        demanding jobs, choose early retirement, or give up work 
        altogether. As a result, in 2002, Alzheimer's disease cost 
        American business an estimated $36,500,000,000 in lost 
        productivity, as well as an additional $24,600,000,000 in 
        business contributions to the total cost of care.

   TITLE I--INCREASING THE FEDERAL COMMITMENT TO ALZHEIMER'S RESEARCH

SEC. 101. DOUBLING NIH FUNDING FOR ALZHEIMER'S DISEASE RESEARCH.

    (a) In General.--For the purpose of conducting and supporting 
research on Alzheimer's disease (including related activities under 
subpart 5 of part C of title IV of the Public Health Service Act (42 
U.S.C. 285e et seq.) there is authorized to be appropriated 
$1,400,000,000 for fiscal year 2006, and such sums as may be necessary 
for each of fiscal years 2007 through 2010.
    (b) Aging Process Regarding Women.--Section 445H(b) of the Public 
Health Service Act (42 U.S.C. 285e-10(b)) is amended by striking 
``2003'' and inserting ``2010''.
    (c) Clinical Research and Training Awards.--Section 445I(d) of the 
Public Health Service Act (42 U.S.C. 285e-10a(d)) is amended by 
striking ``2005'' and inserting ``2010''.

SEC. 102. PRIORITY TO ALZHEIMER'S DISEASE RESEARCH.

    Section 443 of the Public Health Service Act (42 U.S.C. 285e) is 
amended--
            (1) by striking ``The general'' and inserting ``(a) In 
        General.--The general''; and
            (2) by adding at the end the following:
    ``(b) Priorities.--The Director of the Institute shall, in 
expending amounts appropriated under this subpart, give priority to 
conducting and supporting Alzheimer's disease research.''.

SEC. 103. ALZHEIMER'S DISEASE PREVENTION INITIATIVE.

    Section 444 of the Public Health Service Act (42 U.S.C. 285e-1) is 
amended--
            (1) in subsection (d), by inserting ``and training'' after 
        ``conduct research''; and
            (2) by adding at the end the following:
    ``(e) The Director of the National Institutes of Health shall, in 
collaboration with the Director of the Institute, the directors of 
other relevant institutes, and with volunteer organizations and other 
stakeholders, undertake an Alzheimer's Disease Prevention Initiative 
to--
            ``(1) accelerate the discovery of new risk and protective 
        factors for Alzheimer's disease;
            ``(2) rapidly identify candidate diagnostics, therapies, or 
        preventive interventions or agents for clinical investigation 
        and trials relating to Alzheimer's disease;
            ``(3) support or undertake such investigations and trials; 
        and
            ``(4) implement effective prevention and treatment 
        strategies, including strategies to improve patient care and 
        alleviate caregiver burdens relating to Alzheimer's disease.''.

SEC. 104. ALZHEIMER'S DISEASE CLINICAL RESEARCH.

    (a) Clinical Research.--Section 445F of the Public Health Service 
Act (42 U.S.C. 285e-8) is amended to read as follows:

``SEC. 445F. ALZHEIMER'S DISEASE CLINICAL RESEARCH.

    ``(a) In General.--The Director of the Institute, pursuant to 
subsections (d) and (e) of section 444, shall conduct and support 
cooperative clinical research regarding Alzheimer's disease. Such 
research shall include--
            ``(1) investigating therapies, interventions, and agents to 
        detect, treat, slow the progression of, or prevent Alzheimer's 
        disease;
            ``(2) enhancing the national infrastructure for the conduct 
        of clinical trials;
            ``(3) developing and testing novel approaches to the design 
        and analysis of such trials;
            ``(4) facilitating the enrollment of patients for such 
        trials, including patients from diverse populations;
            ``(5) developing improved diagnostics and means of patient 
        assessment for Alzheimer's disease; and
            ``(6) as determined appropriate by the Director of the 
        Institute, the Alzheimer's Disease Centers and Alzheimer's 
        Disease Research Centers established under section 445.
    ``(b) Early Diagnosis and Detection Research.--
            ``(1) In general.--The Director of the Institute, in 
        consultation with the directors of other relevant institutes 
        and centers of the National Institutes of Health, shall 
        conduct, or make grants for the conduct of, research related to 
        the early detection and diagnosis of Alzheimer's disease and of 
        mild cognitive impairment or other potential precursors to 
        Alzheimer's disease.
            ``(2) Evaluation.--The research described in paragraph (1) 
        may include the evaluation of diagnostic tests and imaging 
        techniques.
    ``(c) Vascular Disease.--The Director of the Institute, in 
consultation with the directors of other relevant institutes and 
centers of the National Institutes of Health, shall conduct, or make 
grants for the conduct of, research related to the relationship of 
vascular disease and Alzheimer's disease, including clinical trials to 
determine whether drugs developed to prevent cerebrovascular disease 
can prevent the onset or progression of Alzheimer's disease.
    ``(d) National Alzheimer's Coordinating Center.--The Director of 
the Institute may establish a National Alzheimer's Coordinating Center 
to facilitate collaborative research among the Alzheimer's Disease 
Centers and Alzheimer's Disease Research Centers established under 
section 445.''.
    (b) Alzheimer's Disease Centers.--Section 445(a)(1) of the Public 
Health Service Act (42 U.S.C. 285e-2(a)(1)) is amended by inserting ``, 
and outcome measures and disease management'' after ``treatment 
methods''.

SEC. 105. RESEARCH ON ALZHEIMER'S DISEASE CAREGIVING.

    Section 445C of the Public Health Service Act (42 U.S.C. 285e-5) is 
amended--
            (1) by striking ``Sec. 445C. (a)'' and inserting the 
        following:

``SEC. 445C. RESEARCH ON ALZHEIMER'S DISEASE SERVICES AND CAREGIVING.

    ``(a) Services Research.--'';
            (2) by striking subsections (b), (c), and (e);
            (3) by inserting after subsection (a) the following:
    ``(b) Interventions Research.--The Director shall, in collaboration 
with the directors of the other relevant institutes and centers of the 
National Institutes of Health, conduct, or make grants for the conduct 
of, clinical, social, and behavioral research related to interventions 
designed to help caregivers of patients with Alzheimer's disease and 
related disorders and improve patient outcomes.''; and
            (4) in subsection (d) by striking ``(d) the Director'' and 
        inserting ``(c) Model Curricula and Techniques. --The 
        Director''.

SEC. 106. NATIONAL SUMMIT ON ALZHEIMER'S DISEASE.

    (a) In General.--Not later than 1 year after the date of enactment 
of this Act, the Secretary of Health and Human Services (referred to in 
this section as the ``Secretary'') shall convene a summit of 
researchers, representatives of academic institutions, Federal and 
State policymakers, public health professionals, and representatives of 
voluntary health agencies to provide a detailed overview of current 
research activities at the National Institutes of Health, as well as to 
discuss and solicit input related to potential areas of collaboration 
between the National Institutes of Health and other Federal health 
agencies, including the Centers for Disease Control and Prevention, the 
Administration on Aging, the Agency for Healthcare Research and 
Quality, and the Health Resources and Services Administration, related 
to research, prevention, and treatment of Alzheimer's disease.
    (b) Focus Areas.--The summit convened under subsection (a) shall 
focus on--
            (1) a broad range of Alzheimer's disease research 
        activities relating to biomedical research, prevention 
        research, and caregiving issues;
            (2) clinical research for the development and evaluation of 
        new treatments for the disease;
            (3) translational research on evidence-based and cost-
        effective best practices in the treatment and prevention of the 
        disease;
            (4) information and education programs for health care 
        professionals and the public relating to the disease;
            (5) priorities among the programs and activities of the 
        various Federal agencies regarding such diseases; and
            (6) challenges and opportunities for scientists, 
        clinicians, patients, and voluntary organizations relating to 
        the disease.
    (c) Report.--Not later than 180 days after the date on which the 
National Summit on Alzheimer's Disease is convened under subsection 
(a), the Director of National Institutes of Health shall prepare and 
submit to the appropriate committees of Congress a report that includes 
a summary of the proceedings of the summit and a description of 
Alzheimer's research, education, and other activities that are 
conducted or supported through the national research institutes.
    (d) Public Information.--The Secretary shall make readily available 
to the public information about the research, education, and other 
activities relating to Alzheimer's disease and other related dementias, 
conducted or supported by the National Institutes of Health.
    (e) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, such sums as may be necessary 
for each of fiscal years 2006 through 2010.

          TITLE II--PUBLIC EDUCATION ABOUT ALZHEIMER'S DISEASE

SEC. 201. PUBLIC EDUCATION CAMPAIGN.

    Part P of title III of the Public Health Service Act (42 U.S.C. 
280g et seq.) is amended by adding at the end the following:

``SEC. 399O. ALZHEIMER'S DISEASE PUBLIC EDUCATION CAMPAIGN.

    ``(a) In General.--The Secretary, acting through the Director of 
the Centers for Disease Control and Prevention, shall carry out a 
program to educate the public and public health community regarding--
            ``(1) diagnosis and early warning signs of Alzheimer's 
        disease; and
            ``(2) how healthy lifestyles could maintain cognitive 
        function and brain health.
    ``(b) Education of Health Professionals and Partnerships.--The 
program carried out under subsection (a) shall include activities to 
educate health professionals about the diagnosis, care, and management 
of Alzheimer's disease and dementia, and the development of 
partnerships between State health departments, area agencies on aging, 
and local organizations serving people with Alzheimer's disease.
    ``(c) Authorization of Appropriations.--For the purpose of carrying 
out this section, there are authorized to be appropriated $7,000,000 
for fiscal year 2006, and such sums as may be necessary for each of 
fiscal years 2007 through 2010.''.

                  TITLE III--ASSISTANCE FOR CAREGIVERS

SEC. 301. INCREASED FUNDING FOR NATIONAL FAMILY CAREGIVER SUPPORT 
              PROGRAM.

    (a) In General.--Section 303(e)(1) of the Older Americans Act of 
1965 (42 U.S.C. 3023(e)(1)) is amended by striking ``$125,000,000 for 
fiscal year 2001'' and inserting ``$250,000,000 for fiscal year 2006''.
    (b) Native Americans.--Section 643(2) of the Older Americans Act of 
1965 (42 U.S.C. 3057n(2)) is amended by striking ``$5,000,000 for 
fiscal year 2001'' and inserting ``$10,000,000 for fiscal year 2006''.

SEC. 302. ALZHEIMER'S DISEASE DEMONSTRATION GRANTS.

    Section 398B(e) of the Public Health Service Act (42 U.S.C. 280c-
5(e)) is amended--
            (1) by striking ``and such'' and inserting ``such''; and
            (2) by inserting before the period ``, $25,000,000 for 
        fiscal year 2006, and such sums as may be necessary for each of 
        the fiscal years 2007 through 2010''.

SEC. 303. SAFE RETURN PROGRAM.

    Section 240001(d) of the Violent Crime Control and Law Enforcement 
Act of 1994 (42 U.S.C. 14181(d)) is amended to read as follows:
    ``(d) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, $1,000,000 for fiscal year 
2006.''.

SEC. 304. 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) nearly 4,000,000 individuals in the United States of 
        all ages who have mental retardation or another developmental 
        disability live with their families;
            ``(4) almost 25 percent of the Nation's elders experience 
        multiple chronic disabling conditions that make it necessary to 
        rely on others for help in meeting their daily needs;
            ``(5) every year, approximately 600,000 Americans die at 
        home and many of these individuals rely on extensive family 
        caregiving before their death;
            ``(6) of all individuals in the United States needing 
        assistance in daily living, 42 percent are under age 65;
            ``(7) there are insufficient resources to replace family 
        caregivers with paid workers;
            ``(8) if services provided by family caregivers had to be 
        replaced with paid services, it would cost approximately 
        $200,000,000,000 annually;
            ``(9) the family caregiver role is personally rewarding but 
        can result in substantial emotional, physical, and financial 
        hardship;
            ``(10) approximately 75 percent of family caregivers are 
        women;
            ``(11) family caregivers often do not know where to find 
        information about available respite care or how to access it;
            ``(12) available respite care programs are insufficient to 
        meet the need and are directed at primarily lower income 
        populations and family caregivers of the elderly, leaving large 
        numbers of family caregivers without adequate support; and
            ``(13) the limited number of available respite care 
        programs find it difficult to recruit appropriately trained 
        respite workers.
    ``(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 dissemination 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 comprehensive 
        approaches to--
                    ``(A) the delivery of respite care;
                    ``(B) respite care worker and volunteer recruitment 
                and training programs; and
                    ``(C) training programs for family caregivers to 
                assist such family caregivers in making informed 
                decisions about respite care services;
            ``(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 research projects relating to 
        respite care delivery, family caregiver strain, respite care 
        worker and volunteer recruitment and training, and training 
        programs for family caregivers that assist such family 
        caregivers in making informed decisions about respite care 
        services.

``SEC. 2902. DEFINITIONS.

    ``In this title:
            ``(1) Eligible recipient.--The term `eligible recipient' 
        means--
                    ``(A) a State agency;
                    ``(B) any other public entity that is capable 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 individuals; or
                    ``(E) any recognized State respite coordinating 
                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 meaningful 
                        involvement of family members, family 
                        caregivers, and care recipients.
            ``(2) Adult with a special need.--The term `adult with a 
        special need' means a person 18 years of age or older who 
        requires care or supervision to--
                    ``(A) meet the person's basic needs; or
                    ``(B) prevent physical self-injury or injury to 
                others.
            ``(3) Child with a special need.--The term `child with a 
        special need' means a person less than 18 years of age who 
        requires care or supervision beyond that required of children 
        generally to--
                    ``(A) meet the child's basic needs; or
                    ``(B) prevent physical self-injury or injury to 
                others.
            ``(4) 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.
            ``(5) Respite care.--The term `respite care' means planned 
        or emergency care provided to a child or adult with a special 
        need in order to provide temporary relief to the family 
        caregiver of that child or adult.
            ``(6) Lifespan respite care.--The term `lifespan respite 
        care' means a coordinated system of accessible, community-based 
        respite care services for family caregivers of children or 
        adults with special needs.

``SEC. 2903. LIFESPAN RESPITE CARE GRANTS AND COOPERATIVE AGREEMENTS.

    ``(a) Purposes.--The purposes of this section are--
            ``(1) to expand and enhance respite care services 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 caregivers, thereby reducing 
        family caregiver strain.
    ``(b) Authorization.--Subject to subsection (f), the Secretary is 
authorized to 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 shall work in cooperation with the National Family Caregiver 
Support Program Officer of the Administration on Aging, and respite 
care program officers in the Administration for Children and Families, 
the Administration on Developmental Disabilities, the Maternal and 
Child Health Bureau of the Health Resources and Services 
Administration, and the Substance Abuse and Mental Health Services 
Administration, to ensure coordination of respite care services for 
family caregivers of children and adults with special needs.
    ``(d) Application.--
            ``(1) Submission.--Each eligible recipient desiring to 
        receive a grant or cooperative agreement under this section 
        shall submit an application to the Secretary at such time, in 
        such manner, and containing such information as the Secretary 
        shall require.
            ``(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 
                        involvement of family members, family 
                        caregivers, and care recipients; and
                            ``(iii) collaboration with other State and 
                        community-based public, nonprofit, or private 
                        agencies;
                    ``(B) with respect to the population of family 
                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 of family caregivers;
                            ``(ii) the extent and nature of the respite 
                        care needs of that population;
                            ``(iii) existing respite care services for 
                        that population, including numbers of family 
                        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 
                        dissemination 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 making informed decisions 
                        about respite care services will be provided 
                        using grant or cooperative agreement funds;
                            ``(vi) a plan for collaboration and 
                        coordination of the proposed respite care 
                        activities with other related services or 
                        programs offered by public or private, 
                        nonprofit entities, including area agencies on 
                        aging;
                            ``(vii) how the population, including 
                        family caregivers, care recipients, and 
                        relevant public or private agencies, will 
                        participate in the planning and implementation 
                        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 caregivers of children 
                        and adults with special needs;
                            ``(x) the criteria used to identify family 
                        caregivers eligible for respite care services;
                            ``(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 proposed 
                        respite care activities and the procedures to 
                        be used for evaluating those results; and
                    ``(C) assurances that, where appropriate, the 
                applicant shall 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 applications submitted under this 
        section.
            ``(2) Meetings.--The panel shall meet as often as may be 
        necessary to facilitate the expeditious review 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 Secretary 
                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 approved by 
        the panel under subsection (e)(3).
            ``(2) Priority.--When awarding grants or cooperative 
        agreements under this subsection, the Secretary 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.--
                    ``(A) Mandatory uses of funds.--Each eligible 
                recipient that is awarded a grant or cooperative 
                agreement under this section shall use the funds for, 
                unless such a program is in existence--
                            ``(i) the development of lifespan respite 
                        care at the State and local levels; and
                            ``(ii) an evaluation of the effectiveness 
                        of such care.
                    ``(B) Discretionary uses of funds.--Each eligible 
                recipient that is awarded a grant or cooperative 
                agreement under this section may use the funds for--
                            ``(i) respite care services for family 
                        caregivers of children and adults with special 
                        needs;
                            ``(ii) respite care worker and volunteer 
                        training programs; or
                            ``(iii) training programs for family 
                        caregivers to assist such family caregivers in 
                        making informed decisions about respite care 
                        services.
                    ``(C) Evaluation.--If an eligible recipient uses 
                funds awarded under this section for an activity 
                described in subparagraph (B), the eligible recipient 
                shall use funds for an evaluation of the effectiveness 
                of the activity.
            ``(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 Agreements.--
            ``(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.
    ``(j) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section--
            ``(1) $90,500,000 for fiscal year 2006; and
            ``(2) such sums as are necessary for fiscal years 2007 
        through 2010.

``SEC. 2904. NATIONAL LIFESPAN RESPITE RESOURCE CENTER.

    ``(a) Establishment.--From funds appropriated under subsection (c), 
the Secretary shall award a grant or cooperative agreement to a public 
or private nonprofit entity to establish a National Resource Center on 
Lifespan Respite Care (referred to in this section as the `center').
    ``(b) Purposes of the Center.--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 programs; and
            ``(3) provide information, referral, and educational 
        programs to the public on lifespan respite care.
    ``(c) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section $500,000 for each of fiscal 
years 2006 through 2010.''.
                                 <all>