I 
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. MAN-
ZULLO, Ms. MCCARTHY of Missouri, Mr. MEEHAN, Mr. NEAL of Massa-
chusetts, 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 consider-
ation of such provisions as fall within the jurisdiction of the committee 
concerned 
A BILL 
To amend the Public Health Service Act to fund break-
throughs 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 Representa-
tives 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 con-
tracts. 
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 de-
stroys 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 rou-
tine tasks, disorientation, difficulty in learning, loss 
of language skills, impairment of judgment, and per-
sonality 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 Alz-
heimer’s disease. Younger people also get the dis-
ease. 
(4) The Alzheimer’s disease process may begin 
in the brain as many as 20 years before the symp-
toms 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 in-
dividual 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 an-
nual cost of paid care for people with Alzheimer’s 
disease at home is $12,500 per year. Almost all fam-
ilies pay this cost out of pocket. 
(9) Half of all nursing home residents have Alz-
heimer’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 resi-
dents pay for their care. Medicaid expenditures for 
nursing home care for people with Alzheimer’s dis-
ease 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 Govern-
ment will spend an estimated $680,000,000 on Alz-
heimer’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 symp-
toms), 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 Hos-
pital 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 be-
comes 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 pro-
ductivity, as well as an additional $24,600,000,000 
in business contributions to the total cost of care. 
TITLE I—INCREASING THE FED-
ERAL COMMITMENT TO ALZ-
HEIMER’S RESEARCH 
SEC. 101. DOUBLING NIH FUNDING FOR ALZHEIMER’S DIS-
EASE 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 sub-
part, give priority to conducting and supporting Alz-
heimer’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 train-
ing’’ 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 In-
stitute, 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 Alz-
heimer’s disease; 
‘‘(3) support or undertake such investigations 
and trials; and 
‘‘(4) implement effective prevention and treat-
ment strategies, including strategies to improve pa-
tient care and alleviate caregiver burdens relating to 
Alzheimer’s disease.’’. 
SEC. 104. ALZHEIMER’S DISEASE CLINICAL RESEARCH. 
(a) CLINICAL RESEARCH.—Section 445F of the Pub-
lic 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 regard-
ing 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 popu-
lations; 
‘‘(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 estab-
lished under section 445. 
‘‘(b) EARLY
DIAGNOSIS
AND
DETECTION
RE-
SEARCH.— 
‘‘(1) IN GENERAL.—The Director of the Insti-
tute, in consultation with the directors of other rel-
evant institutes and centers of the National Insti-
tutes of Health, shall conduct, or make grants for 
the conduct of, research related to the early detec-
tion and diagnosis of Alzheimer’s disease and of
mild cognitive impairment or other potential precur-
sors to Alzheimer’s disease. 
‘‘(2) EVALUATION.—The research described in 
paragraph (1) may include the evaluation of diag-
nostic tests and imaging techniques. 
‘‘(c) VASCULAR DISEASE.—The Director of the Insti-
tute, 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 Alz-
heimer’s disease, including clinical trials to determine 
whether drugs developed to prevent cerebrovascular dis-
ease can prevent the onset or progression of Alzheimer’s 
disease. 
‘‘(d) NATIONAL ALZHEIMER’S COORDINATING CEN-
TER.—The Director of the Institute may establish a Na-
tional Alzheimer’s Coordinating Center to facilitate col-
laborative research among the Alzheimer’s Disease Cen-
ters 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 SERV-
ICES AND CAREGIVING. 
‘‘(a) SERVICES RESEARCH.—’’; 
(2) by striking subsections (b), (c), and (e); 
(3) by inserting after subsection (a) the fol-
lowing: 
‘‘(b) INTERVENTIONS
RESEARCH.—The Director 
shall, in collaboration with the directors of the other rel-
evant institutes and centers of the National Institutes of 
Health, conduct, or make grants for the conduct of, clin-
ical, social, and behavioral research related to interven-
tions designed to help caregivers of patients with Alz-
heimer’s disease and related disorders and improve patient 
outcomes.’’; and 
(4) in subsection (d) by striking ‘‘(d) the Direc-
tor’’ 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 ‘‘Sec-
retary’’) shall convene a summit of researchers, represent-
atives of academic institutions, Federal and State policy-
makers, 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 In-
stitutes of Health and other Federal health agencies, in-
cluding 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 re-
search activities relating to biomedical research, pre-
vention 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 dis-
eases; and 
(6) challenges and opportunities for scientists, 
clinicians, patients, and voluntary organizations re-
lating 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 ap-
propriate committees of Congress a report that includes 
a summary of the proceedings of the summit and a de-
scription of Alzheimer’s research, education, and other ac-
tivities that are conducted or supported through the na-
tional research institutes. 
(d) PUBLIC INFORMATION.—The Secretary shall 
make readily available to the public information about the 
research, education, and other activities relating to Alz-
heimer’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,
(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 fami-
lies; 
‘‘(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 meet-
ing their daily needs; 
‘‘(5) every year, approximately 600,000 Ameri-
cans 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 re-
warding but can result in substantial emotional, 
physical, and financial hardship;
‘‘(10) approximately 75 percent of family care-
givers 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 insuf-
ficient to meet the need and are directed at pri-
marily lower income populations and family care-
givers 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 appro-
priately 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 dissemina-
tion 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 com-
prehensive approaches to— 
‘‘(A) the delivery of respite care;
‘‘(B) respite care worker and volunteer re-
cruitment and training programs; and 
‘‘(C) training programs for family care-
givers to assist such family caregivers in mak-
ing informed decisions about respite care serv-
ices; 
‘‘(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 re-
search projects relating to respite care delivery, fam-
ily caregiver strain, respite care worker and volun-
teer recruitment and training, and training pro-
grams for family caregivers that assist such family 
caregivers in making informed decisions about res-
pite 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 capa-
ble 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 in-
dividuals; or 
‘‘(E) any recognized State respite coordi-
nating 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 meaning-
ful 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 be-
yond 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 ‘life-
span respite care’ means a coordinated system of ac-
cessible, community-based respite care services for 
family caregivers of children or adults with special 
needs. 
‘‘SEC. 2903. LIFESPAN RESPITE CARE GRANTS AND COOP-
ERATIVE AGREEMENTS. 
‘‘(a) PURPOSES.—The purposes of this section are— 
‘‘(1) to expand and enhance respite care serv-
ices 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 care-
givers, 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 applica-
tion 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 Of-
ficer of the Administration on Aging, and respite care pro-
gram officers in the Administration for Children and Fam-
ilies, the Administration on Developmental Disabilities, 
the Maternal and Child Health Bureau of the Health Re-
sources and Services Administration, and the Substance 
Abuse and Mental Health Services Administration, to en-
sure coordination of respite care services for family care-
givers of children and adults with special needs. 
‘‘(d) APPLICATION.— 
‘‘(1) SUBMISSION.—Each eligible recipient de-
siring to receive a grant or cooperative agreement 
under this section shall submit an application to the 
Secretary at such time, in such manner, and con-
taining such information as the Secretary shall re-
quire.
‘‘(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 in-
volvement of family members, family care-
givers, and care recipients; and 
‘‘(iii) collaboration with other State 
and community-based public, nonprofit, or 
private agencies; 
‘‘(B) with respect to the population of fam-
ily 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 care-
givers; 
‘‘(ii) the extent and nature of the res-
pite care needs of that population; 
‘‘(iii) existing respite care services for 
that population, including numbers of fam-
ily 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 dis-
semination 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 mak-
ing informed decisions about respite care 
services will be provided using grant or co-
operative agreement funds; 
‘‘(vi) a plan for collaboration and co-
ordination of the proposed respite care ac-
tivities with other related services or pro-
grams offered by public or private, non-
profit entities, including area agencies on 
aging; 
‘‘(vii) how the population, including 
family caregivers, care recipients, and rel-
evant public or private agencies, will par-
ticipate in the planning and implementa-
tion 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 care-
givers of children and adults with special 
needs; 
‘‘(x) the criteria used to identify fam-
ily caregivers eligible for respite care serv-
ices; 
‘‘(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 pro-
posed respite care activities and the proce-
dures to be used for evaluating those re-
sults; and 
‘‘(C) assurances that, where appropriate, 
the applicant shall have a system for maintain-
ing 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 appli-
cations submitted under this section. 
‘‘(2) MEETINGS.—The panel shall meet as often 
as may be necessary to facilitate the expeditious re-
view 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 Sec-
retary 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 co-
operative agreements under this subsection, the Sec-
retary 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 co-
operative agreement under this section shall use 
the funds for, unless such a program is in exist-
ence— 
‘‘(i) the development of lifespan res-
pite 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 spe-
cial 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 eli-
gible 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 AGREE-
MENTS.— 
‘‘(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 sec-
tion— 
‘‘(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 CEN-
TER. 
‘‘(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 pro-
grams; and 
‘‘(3) provide information, referral, and edu-
cational 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 sub-
chapter 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 applica-
ble individuals with respect to whom the taxpayer is 
an eligible caregiver for the taxable year.
‘‘(2) APPLICABLE CREDIT AMOUNT.—For pur-
poses of paragraph (1), the applicable credit amount 
shall be determined in accordance with the following 
table: 
‘‘(b) LIMITATION BASED ON ADJUSTED GROSS IN-
COME.— 
‘‘(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 ‘modi-
fied adjusted gross income’ means adjusted gross in-
come 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 re-
turn, 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 de-
termined under section 213(d)(10)(B)(ii) for 
the calendar year in which the taxable year be-
gins, determined by substituting ‘2003’ for 
‘1996’ in subclause (II) thereof. 
If any increase determined under the preceding sen-
tence 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, be-
fore the due date for filing the return of tax for 
the taxable year (without extensions), by a phy-
sician (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 oth-
erwise meeting the requirements of the pre-
ceding sentence unless within the 391⁄2 month 
period ending on such due date (or such other 
period as the Secretary prescribes) a physician 
(as so defined) has certified that such indi-
vidual meets such requirements. 
‘‘(B) INDIVIDUALS WITH LONG-TERM CARE 
NEEDS.—An individual is described in this sub-
paragraph if the individual meets any of the fol-
lowing requirements: 
‘‘(i) The individual is at least 18 years 
of age and— 
‘‘(I) is unable to perform (with-
out substantial assistance from an-
other 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 super-
vision to protect such individual from 
threats to health and safety due to se-
vere cognitive impairment and is un-
able to perform at least 1 activity of 
daily living (as so defined) or to the 
extent provided in regulations pre-
scribed by the Secretary (in consulta-
tion 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 (with-
out substantial assistance from an-
other 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 super-
vision to protect such individual from 
threats to health and safety due to se-
vere cognitive impairment and is un-
able to perform at least 1 activity of 
daily living (as so defined) or to the 
extent provided in regulations pre-
scribed by the Secretary (in consulta-
tion 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 de-
scribed in subclause (I) (as deter-
mined under regulations promulgated 
by the Secretary), or 
‘‘(IV) has a complex medical con-
dition (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 (with-
out substantial assistance from an-
other individual) at least 2 of the fol-
lowing activities: eating, transferring, 
or mobility, 
‘‘(II) has a level of disability 
similar to the level of disability de-
scribed in subclause (I) (as deter-
mined under regulations promulgated 
by the Secretary), or 
‘‘(III) has a complex medical con-
dition (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 se-
vere health condition or requires a 
skilled practitioner trained to address 
the individual’s condition to be avail-
able if the individual’s parents or 
guardians are absent, 
‘‘(II) has a level of disability 
similar to the level of disability de-
scribed in subclause (I) (as deter-
mined under regulations promulgated 
by the Secretary), or 
‘‘(III) has a complex medical con-
dition (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 subpara-
graph (C)) and is unable to perform (with-
out substantial assistance from another in-
dividual) 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 con-
secutive 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 de-
scribed 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 sec-
tion 63(c)(2)(C), and any additional stand-
ard deduction under section 63(c)(3) which 
would be applicable to the individual if 
clause (iii) applied. 
‘‘(v) An individual who would be de-
scribed in clause (iii) for the taxable year 
if—
‘‘(I) the requirements of clause 
(iv) are met with respect to the indi-
vidual, and 
‘‘(II) the requirements of sub-
paragraph (B) are met with respect to 
the individual in lieu of the support 
test of section 152(a). 
‘‘(B) RESIDENCY
TEST.—The require-
ments of this subparagraph are met if an indi-
vidual 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 tax-
payer or the taxpayer’s spouse, is a mem-
ber of the taxpayer’s household for over 
half the taxable year, or 
‘‘(ii) in the case of any other indi-
vidual, 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 in-
dividual is an eligible caregiver with re-
spect 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 pre-
scribe) that such individual will not claim 
such applicable individual for the credit 
under this section. 
‘‘(ii) NO AGREEMENT.—If each indi-
vidual 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 indi-
viduals 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 re-
spect to any applicable individual unless the taxpayer in-
cludes the name and taxpayer identification number of 
such individual, and the identification number of the phy-
sician 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 rea-
son of the death of the taxpayer, no credit shall be allow-
able under this section in the case of a taxable year cov-
ering 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 fol-
lowing new subparagraph: 
‘‘(N) an omission of a correct TIN or phy-
sician identification required under section 
25C(d) (relating to credit for taxpayers with 
long-term care needs) to be included on a re-
turn.’’. 
(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 sec-
tion 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 chap-
ter 1 of the Internal Revenue Code of 1986 (relating to 
additional itemized deductions) is amended by redesig-
nating section 224 as section 225 and by inserting after 
section 223 the following new section: 
‘‘SEC. 224. PREMIUMS ON QUALIFIED LONG-TERM CARE IN-
SURANCE 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 quali-
fied long-term care insurance contract (as defined in sec-
tion 7702B(b)). 
‘‘(b) APPLICABLE PERCENTAGE.—For purposes of 
subsection (a)—
‘‘(1) IN GENERAL.—Except as otherwise pro-
vided 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 insur-
ance contracts (as defined in section 7702B(b)): 
‘‘(2) SPECIAL
RULES
FOR
INDIVIDUALS
WHO 
HAVE ATTAINED AGE 55.—In the case of an indi-
vidual 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 Decem-
ber 31, 2003, shall be taken into account under this 
subsection. 
‘‘(4) CONTINUOUS
COVERAGE.—An individual 
shall not fail to be treated as having continuous cov-
erage 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) ap-
plies 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 al-
lowed by section 224.’’. 
(2) The table of sections for part VII of sub-
chapter 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 con-
tract if such contract meets— 
‘‘(i) MODEL
REGULATION.—The fol-
lowing requirements of the model regula-
tion: 
‘‘(I) Section 6A (relating to guar-
anteed renewal or noncancellability), 
and the requirements of section 6B of 
the model Act relating to such section 
6A. 
‘‘(II) Section 6B (relating to pro-
hibitions on limitations and exclu-
sions). 
‘‘(III) Section 6C (relating to ex-
tension of benefits). 
‘‘(IV) Section 6D (relating to 
continuation or conversion of cov-
erage). 
‘‘(V) Section 6E (relating to dis-
continuance and replacement of poli-
cies). 
‘‘(VI) Section 7 (relating to unin-
tentional lapse).