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[Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[H.R. 4595 Introduced in House (IH)]

108th CONGRESS
  2d Session
                                H. R. 4595

    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

                             June 16, 2004

  Mr. Markey (for himself, Mr. Smith of New Jersey, Mr. Menendez, Ms. 
Jackson-Lee of Texas, Mr. Green of Texas, Mr. Kildee, Mr. Manzullo, Ms. 
McCarthy of Missouri, Mr. Meehan, Mr. Neal of Massachusetts, Mr. Kind, 
    Mr. Kennedy of Rhode Island, and Mr. McDermott) introduced the 
   following bill; which was referred to the Committee on Energy and 
   Commerce, and in addition to the Committees on Education and the 
     Workforce and Ways and Means, 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 2004''.
    (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. 305. Credit for taxpayers with long-term care needs.
Sec. 306. Treatment of premiums on qualified long-term care insurance 
                            contracts.
Sec. 307. Additional consumer protections for long-term care insurance.

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 13,000,000 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 $170,000.
            (6) In 2000, medicare alone spent $31,900,000,000 for the 
        care of individuals with Alzheimer's disease and this amount is 
        projected to increase to $49,300,000,000 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) Half 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 nearly 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 $18,200,000,000 in 2000 
        to $33,000,000,000 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 more than one-third 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 2005, and such sums as may be necessary 
for each of fiscal years 2006 through 2009.
    (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 ``2009''.
    (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 ``2009''.

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 2005 through 2009.

          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 2005, and such sums as may be necessary for each of 
fiscal years 2006 through 2009.''.

                  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 2005''.
    (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 2005''.

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 2005, and such sums as may be necessary for each of 
        the fiscal years 2006 through 2009''.

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 
2005.''.

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 2005; and
            ``(2) such sums as are necessary for fiscal years 2006 
        through 2009.

``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 2005 through 2009.''.

SEC. 305. CREDIT FOR TAXPAYERS WITH LONG-TERM CARE NEEDS.

    (a) In General.--Subpart A of part IV of subchapter A of chapter 1 
of the Internal Revenue Code of 1986 (relating to nonrefundable 
personal credits) is amended by inserting after section 25B the 
following new section:

``SEC. 25C. CREDIT FOR TAXPAYERS WITH LONG-TERM CARE NEEDS.

    ``(a) Allowance of Credit.--
            ``(1) In general.--There shall be allowed as a credit 
        against the tax imposed by this chapter for the taxable year an 
        amount equal to the applicable credit amount multiplied by the 
        number of applicable individuals with respect to whom the 
        taxpayer is an eligible caregiver for the taxable year.
            ``(2) Applicable credit amount.--For purposes of paragraph 
        (1), the applicable credit amount shall be determined in 
        accordance with the following table:
    ``(b) Limitation Based on Adjusted Gross Income.--
            ``(1) In general.--The amount of the credit allowable under 
        subsection (a) shall be reduced (but not below zero) by $100 
        for each $1,000 (or fraction thereof) by which the taxpayer's 
        modified adjusted gross income exceeds the threshold amount. 
        For purposes of the preceding sentence, the term `modified 
        adjusted gross income' means adjusted gross income increased by 
        any amount excluded from gross income under section 911, 931, 
        or 933.
            ``(2) Threshold amount.--For purposes of paragraph (1), the 
        term `threshold amount' means--
                    ``(A) $150,000 in the case of a joint return, and
                    ``(B) $75,000 in any other case.
            ``(3) Indexing.--In the case of any taxable year beginning 
        in a calendar year after 2004, each dollar amount contained in 
        paragraph (2) shall be increased by an amount equal to the 
        product of--
                    ``(A) such dollar amount, and
                    ``(B) the medical care cost adjustment determined 
                under section 213(d)(10)(B)(ii) for the calendar year 
                in which the taxable year begins, determined by 
                substituting `2003' for `1996' in subclause (II) 
                thereof.
        If any increase determined under the preceding sentence is not 
        a multiple of $50, such increase shall be rounded to the next 
        lowest multiple of $50.
    ``(c) Definitions.--For purposes of this section--
            ``(1) Applicable individual.--
                    ``(A) In general.--The term `applicable individual' 
                means, with respect to any taxable year, any individual 
                who has been certified, before the due date for filing 
                the return of tax for the taxable year (without 
                extensions), by a physician (as defined in section 
                1861(r)(1) of the Social Security Act) as being an 
                individual with long-term care needs described in 
                subparagraph (B) for a period--
                            ``(i) which is at least 180 consecutive 
                        days, and
                            ``(ii) a portion of which occurs within the 
                        taxable year.
                Such term shall not include any individual otherwise 
                meeting the requirements of the preceding sentence 
                unless within the 39\1/2\ month period ending on such 
                due date (or such other period as the Secretary 
                prescribes) a physician (as so defined) has certified 
                that such individual meets such requirements.
                    ``(B) Individuals with long-term care needs.--An 
                individual is described in this subparagraph if the 
                individual meets any of the following requirements:
                            ``(i) The individual is at least 18 years 
                        of age and--
                                    ``(I) is unable to perform (without 
                                substantial assistance from another 
                                individual) at least 3 activities of 
                                daily living (as defined in section 
                                7702B(c)(2)(B)) due to a loss of 
                                functional capacity, or
                                    ``(II) requires substantial 
                                supervision to protect such individual 
                                from threats to health and safety due 
                                to severe cognitive impairment and is 
                                unable to perform at least 1 activity 
                                of daily living (as so defined) or to 
                                the extent provided in regulations 
                                prescribed by the Secretary (in 
                                consultation with the Secretary of 
                                Health and Human Services), is unable 
                                to engage in age appropriate 
                                activities.
                            ``(ii) The individual is at least 6 but not 
                        18 years of age and--
                                    ``(I) is unable to perform (without 
                                substantial assistance from another 
                                individual) at least 3 activities of 
                                daily living (as defined in section 
                                7702B(c)(2)(B)) due to a loss of 
                                functional capacity,
                                    ``(II) requires substantial 
                                supervision to protect such individual 
                                from threats to health and safety due 
                                to severe cognitive impairment and is 
                                unable to perform at least 1 activity 
                                of daily living (as so defined) or to 
                                the extent provided in regulations 
                                prescribed by the Secretary (in 
                                consultation with the Secretary of 
                                Health and Human Services), is unable 
                                to engage in age appropriate 
                                activities,
                                    ``(III) has a level of disability 
                                similar to the level of disability 
                                described in subclause (I) (as 
                                determined under regulations 
                                promulgated by the Secretary), or
                                    ``(IV) has a complex medical 
                                condition (as defined by the Secretary) 
                                that requires medical management and 
                                coordination of care.
                            ``(iii) The individual is at least 2 but 
                        not 6 years of age and--
                                    ``(I) is unable due to a loss of 
                                functional capacity to perform (without 
                                substantial assistance from another 
                                individual) at least 2 of the following 
                                activities: eating, transferring, or 
                                mobility,
                                    ``(II) has a level of disability 
                                similar to the level of disability 
                                described in subclause (I) (as 
                                determined under regulations 
                                promulgated by the Secretary), or
                                    ``(III) has a complex medical 
                                condition (as defined by the Secretary) 
                                that requires medical management and 
                                coordination of care.
                            ``(iv) The individual is under 2 years of 
                        age and--
                                    ``(I) requires specific durable 
                                medical equipment by reason of a severe 
                                health condition or requires a skilled 
                                practitioner trained to address the 
                                individual's condition to be available 
                                if the individual's parents or 
                                guardians are absent,
                                    ``(II) has a level of disability 
                                similar to the level of disability 
                                described in subclause (I) (as 
                                determined under regulations 
                                promulgated by the Secretary), or
                                    ``(III) has a complex medical 
                                condition (as defined by the Secretary) 
                                that requires medical management and 
                                coordination of care.
                            ``(v) The individual has 5 or more chronic 
                        conditions (as defined in subparagraph (C)) and 
                        is unable to perform (without substantial 
                        assistance from another individual) at least 1 
                        activity of daily living (as so defined) due to 
                        a loss of functional capacity.
                    ``(C) Chronic condition.--For purposes of this 
                paragraph, the term `chronic condition' means a 
                condition that lasts for at least 6 consecutive months 
                and requires ongoing medical care.
            ``(2) Eligible caregiver.--
                    ``(A) In general.--A taxpayer shall be treated as 
                an eligible caregiver for any taxable year with respect 
                to the following individuals:
                            ``(i) The taxpayer.
                            ``(ii) The taxpayer's spouse.
                            ``(iii) An individual with respect to whom 
                        the taxpayer is allowed a deduction under 
                        section 151(c) for the taxable year.
                            ``(iv) An individual who would be described 
                        in clause (iii) for the taxable year if section 
                        151(c)(1)(A) were applied by substituting for 
                        the exemption amount an amount equal to the sum 
                        of the exemption amount, the standard deduction 
                        under section 63(c)(2)(C), and any additional 
                        standard deduction under section 63(c)(3) which 
                        would be applicable to the individual if clause 
                        (iii) applied.
                            ``(v) An individual who would be described 
                        in clause (iii) for the taxable year if--
                                    ``(I) the requirements of clause 
                                (iv) are met with respect to the 
                                individual, and
                                    ``(II) the requirements of 
                                subparagraph (B) are met with respect 
                                to the individual in lieu of the 
                                support test of section 152(a).
                    ``(B) Residency test.--The requirements of this 
                subparagraph are met if an individual has as his 
                principal place of abode the home of the taxpayer and--
                            ``(i) in the case of an individual who is 
                        an ancestor or descendant of the taxpayer or 
                        the taxpayer's spouse, is a member of the 
                        taxpayer's household for over half the taxable 
                        year, or
                            ``(ii) in the case of any other individual, 
                        is a member of the taxpayer's household for the 
                        entire taxable year.
                    ``(C) Special rules where more than 1 eligible 
                caregiver.--
                            ``(i) In general.--If more than 1 
                        individual is an eligible caregiver with 
                        respect to the same applicable individual for 
                        taxable years ending with or within the same 
                        calendar year, a taxpayer shall be treated as 
                        the eligible caregiver if each such individual 
                        (other than the taxpayer) files a written 
                        declaration (in such form and manner as the 
                        Secretary may prescribe) that such individual 
                        will not claim such applicable individual for 
                        the credit under this section.
                            ``(ii) No agreement.--If each individual 
                        required under clause (i) to file a written 
                        declaration under clause (i) does not do so, 
                        the individual with the highest modified 
                        adjusted gross income (as defined in section 
                        32(c)(5)) shall be treated as the eligible 
                        caregiver.
                            ``(iii) Married individuals filing 
                        separately.--In the case of married individuals 
                        filing separately, the determination under this 
                        subparagraph as to whether the husband or wife 
                        is the eligible caregiver shall be made under 
                        the rules of clause (ii) (whether or not one of 
                        them has filed a written declaration under 
                        clause (i)).
    ``(d) Identification Requirement.--No credit shall be allowed under 
this section to a taxpayer with respect to any applicable individual 
unless the taxpayer includes the name and taxpayer identification 
number of such individual, and the identification number of the 
physician certifying such individual, on the return of tax for the 
taxable year.
    ``(e) Taxable Year Must Be Full Taxable Year.--Except in the case 
of a taxable year closed by reason of the death of the taxpayer, no 
credit shall be allowable under this section in the case of a taxable 
year covering a period of less than 12 months.''.
    (b) Conforming Amendments.--
            (1) Section 6213(g)(2) of the Internal Revenue Code of 1986 
        is amended by striking ``and'' at the end of subparagraph (L), 
        by striking the period at the end of subparagraph (M) and 
        inserting ``, and'', and by inserting after subparagraph (M) 
        the following new subparagraph:
                    ``(N) an omission of a correct TIN or physician 
                identification required under section 25C(d) (relating 
                to credit for taxpayers with long-term care needs) to 
                be included on a return.''.
            (2) The table of sections for subpart A of part IV of 
        subchapter A of chapter 1 of such Code is amended by inserting 
        after the item relating to section 25B the following new item:

``25C. Credit for taxpayers with long-term care needs.''.
    (c) Effective Date.--The amendments made by this section shall 
apply to taxable years beginning after December 31, 2003.

SEC. 306. TREATMENT OF PREMIUMS ON QUALIFIED LONG-TERM CARE INSURANCE 
              CONTRACTS.

    (a) In General.--Part VII of subchapter B of chapter 1 of the 
Internal Revenue Code of 1986 (relating to additional itemized 
deductions) is amended by redesignating section 224 as section 225 and 
by inserting after section 223 the following new section:

``SEC. 224. PREMIUMS ON QUALIFIED LONG-TERM CARE INSURANCE CONTRACTS.

    ``(a) In General.--In the case of an individual, there shall be 
allowed as a deduction an amount equal to the applicable percentage of 
the amount of eligible long-term care premiums (as defined in section 
213(d)(10)) paid during the taxable year for coverage for the taxpayer 
and the taxpayer's spouse and dependents under a qualified long-term 
care insurance contract (as defined in section 7702B(b)).
    ``(b) Applicable Percentage.--For purposes of subsection (a)--
            ``(1) In general.--Except as otherwise provided in this 
        subsection, the applicable percentage shall be determined in 
        accordance with the following table based on the number of 
        years of continuous coverage (as of the close of the taxable 
        year) of the individual under any qualified long-term care 
        insurance contracts (as defined in section 7702B(b)):
            ``(2) Special rules for individuals who have attained age 
        55.--In the case of an individual who has attained age 55 as of 
        the close of the taxable year, the following table shall be 
        substituted for the table in paragraph (1):
            ``(3) Only coverage after 2003 taken into account.--Only 
        coverage for periods after December 31, 2003, shall be taken 
        into account under this subsection.
            ``(4) Continuous coverage.--An individual shall not fail to 
        be treated as having continuous coverage if the aggregate 
        breaks in coverage during any 1-year period are less than 60 
        days.
    ``(c) Coordination With Other Deductions.--Any amount paid by a 
taxpayer for any qualified long-term care insurance contract to which 
subsection (a) applies shall not be taken into account in computing the 
amount allowable to the taxpayer as a deduction under section 162(l) or 
213(a).''.
    (b) Conforming Amendments.--
            (1) Section 62(a) of the Internal Revenue Code of 1986 is 
        amended by inserting after paragraph (19) the following new 
        paragraph:
            ``(20) Premiums on qualified long-term care insurance 
        contracts.--The deduction allowed by section 224.''.
            (2) The table of sections for part VII of subchapter B of 
        chapter 1 of such Code is amended by striking the last item and 
        inserting the following new items:

``224. Premiums on qualified long-term care insurance contracts.
``225. Cross reference.''.
    (c) Effective Date.--The amendments made by this section shall 
apply to taxable years beginning after December 31, 2003.

SEC. 307. ADDITIONAL CONSUMER PROTECTIONS FOR LONG-TERM CARE INSURANCE.

    (a) Additional Protections Applicable to Long-Term Care 
Insurance.--Subparagraphs (A) and (B) of section 7702B(g)(2) of the 
Internal Revenue Code of 1986 (relating to requirements of model 
regulation and Act) are amended to read as follows:
                    ``(A) In general.--The requirements of this 
                paragraph are met with respect to any contract if such 
                contract meets--
                            ``(i) Model regulation.--The following 
                        requirements of the model regulation:
                                    ``(I) Section 6A (relating to 
                                guaranteed renewal or 
                                noncancellability), and the 
                                requirements of section 6B of the model 
                                Act relating to such section 6A.
                                    ``(II) Section 6B (relating to 
                                prohibitions on limitations and 
                                exclusions).
                                    ``(III) Section 6C (relating to 
                                extension of benefits).
                                    ``(IV) Section 6D (relating to 
                                continuation or conversion of 
                                coverage).
                                    ``(V) Section 6E (relating to 
                                discontinuance and replacement of 
                                policies).
                                    ``(VI) Section 7 (relating to 
                                unintentional lapse).
                                    ``(VII) Section 8 (relating to 
                                disclosure), other than section 8F 
                                thereof.
                                    ``(VIII) Section 11 (relating to 
                                prohibitions against post-claims 
                                underwriting).
                                    ``(IX) Section 12 (relating to 
                                minimum standards).
                                    ``(X) Section 13 (relating to 
                                requirement to offer inflation 
                                protection), except that any 
                                requirement for a signature on a 
                                rejection of inflation protection shall 
                                permit the signature to be on an 
                                application or on a separate form.
                                    ``(XI) Section 25 (relating to 
                                prohibition against preexisting 
                                conditions and probationary periods in 
                                replacement policies or certificates).
                                    ``(XII) The provisions of section 
                                26 relating to contingent nonforfeiture 
                                benefits, if the policyholder declines 
                                the offer of a nonforfeiture provision 
                                described in paragraph (4).
                            ``(ii) Model act.--The following 
                        requirements of the model Act:
                                    ``(I) Section 6C (relating to 
                                preexisting conditions).
                                    ``(II) Section 6D (relating to 
                                prior hospitalization).
                                    ``(III) The provisions of section 8 
                                relating to contingent nonforfeiture 
                                benefits, if the policyholder declines 
                                the offer of a nonforfeiture provision 
                                described in paragraph (4).
                    ``(B) Definitions.--For purposes of this 
                paragraph--
                            ``(i) Model provisions.--The terms `model 
                        regulation' and `model Act' mean the long-term 
                        care insurance model regulation, and the long-
                        term care insurance model Act, respectively, 
                        promulgated by the National Association of 
                        Insurance Commissioners (as adopted as of 
                        September 2000).
                            ``(ii) Coordination.--Any provision of the 
                        model regulation or model Act listed under 
                        clause (i) or (ii) of subparagraph (A) shall be 
                        treated as including any other provision of 
                        such regulation or Act necessary to implement 
                        the provision.
                            ``(iii) Determination.--For purposes of 
                        this section and section 4980C, the 
                        determination of whether any requirement of a 
                        model regulation or the model Act has been met 
                        shall be made by the Secretary.''.
    (b) Excise Tax.--Paragraph (1) of section 4980C(c) of the Internal 
Revenue Code of 1986 (relating to requirements of model provisions) is 
amended to read as follows:
            ``(1) Requirements of model provisions.--
                    ``(A) Model regulation.--The following requirements 
                of the model regulation must be met:
                            ``(i) Section 9 (relating to required 
                        disclosure of rating practices to consumer).
                            ``(ii) Section 14 (relating to application 
                        forms and replacement coverage).
                            ``(iii) Section 15 (relating to reporting 
                        requirements), except that the issuer shall 
                        also report at least annually the number of 
                        claims denied during the reporting period for 
                        each class of business (expressed as a 
                        percentage of claims denied), other than claims 
                        denied for failure to meet the waiting period 
                        or because of any applicable preexisting 
                        condition.
                            ``(iv) Section 22 (relating to filing 
                        requirements for marketing).
                            ``(v) Section 23 (relating to standards for 
                        marketing), including inaccurate completion of 
                        medical histories, other than paragraphs (1), 
                        (6), and (9) of section 23C, except that--
                                    ``(I) in addition to such 
                                requirements, no person shall, in 
                                selling or offering to sell a qualified 
                                long-term care insurance contract, 
                                misrepresent a material fact; and
                                    ``(II) no such requirements shall 
                                include a requirement to inquire or 
                                identify whether a prospective 
                                applicant or enrollee for long-term 
                                care insurance has accident and 
                                sickness insurance.
                            ``(vi) Section 24 (relating to 
                        suitability).
                            ``(vii) Section 29 (relating to standard 
                        format outline of coverage).
                            ``(viii) Section 30 (relating to 
                        requirement to deliver shopper's guide).
                The requirements referred to in clause (vi) shall not 
                include those portions of the personal worksheet 
                described in Appendix B relating to consumer protection 
                requirements not imposed by section 4980C or 7702B.
                    ``(B) Model act.--The following requirements of the 
                model Act must be met:
                            ``(i) Section 6F (relating to right to 
                        return), except that such section shall also 
                        apply to denials of applications and any refund 
                        shall be made within 30 days of the return or 
                        denial.
                            ``(ii) Section 6G (relating to outline of 
                        coverage).
                            ``(iii) Section 6H (relating to 
                        requirements for certificates under group 
                        plans).
                            ``(iv) Section 6I (relating to policy 
                        summary).
                            ``(v) Section 6J (relating to monthly 
                        reports on accelerated death benefits).
                            ``(vi) Section 7 (relating to 
                        incontestability period).
                    ``(C) Definitions.--For purposes of this paragraph, 
                the terms `model regulation' and `model Act' have the 
                meanings given such terms by section 7702B(g)(2)(B).''.
    (c) Effective Date.--The amendments made by this section shall 
apply to policies issued more than 1 year after the date of the 
enactment of this Act.
                                 <all>
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