I 
116TH CONGRESS 
1ST SESSION 
H. R. 320 
To expand and enhance existing adult day programs for younger people 
with neurological diseases or conditions (such as multiple sclerosis, Par-
kinson’s disease, traumatic brain injury, or other similar diseases or 
conditions) to support and improve access to respite services for family 
caregivers who are taking care of such people, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
JANUARY 8, 2019 
Ms. LEE of California introduced the following bill; which was referred to the 
Committee on Energy and Commerce 
A BILL 
To expand and enhance existing adult day programs for 
younger people with neurological diseases or conditions 
(such as multiple sclerosis, Parkinson’s disease, trau-
matic brain injury, or other similar diseases or condi-
tions) to support and improve access to respite services 
for family caregivers who are taking care of such people, 
and for other purposes. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Adult Day Center En-
hancement Act’’. 
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SEC. 2. FINDINGS. 
The Congress finds the following: 
(1) One in 6 people in the United States lives 
with a neurological disease or condition that can 
often result in disability, and which may require the 
individual to seek assistance in carrying out the ac-
tivities of daily living. Neurological diseases or condi-
tions such as multiple sclerosis (MS), early-onset 
Parkinson’s disease, and traumatic brain injury 
(TBI) can also typically affect younger adults in the 
middle of their lives. 
(2) Multiple sclerosis is a chronic, often dis-
abling disease that attacks the central nervous sys-
tem with symptoms ranging from numbness in limbs 
to paralysis and loss of vision. Most people with MS 
are diagnosed between the ages of 20 and 50 years 
of age. MS is a leading cause of disability in young 
adults. Persons living with MS who experience more 
severe forms of the disease are likely to require ei-
ther home care or nursing home placement, though 
the vast majority would prefer to remain at home to 
receive the care they need. Where home care is con-
cerned, approximately 80 percent of such care is 
provided by unpaid caregivers who are generally 
family members. 
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(3) Parkinson’s disease is a chronic, progressive 
neurological disease. The four primary symptoms of 
Parkinson’s disease are tremor, or trembling in 
hands, arms, legs, jaw, and face; rigidity, or stiffness 
of the limbs and trunk; bradykinesia, or slowness of 
movement; and postural instability, or impaired bal-
ance and coordination. Other symptoms may include 
cognitive changes; difficulty in swallowing, chewing, 
and speaking; urinary problems or constipation; skin 
problems; and sleep disruptions. As these symptoms 
become more pronounced, patients may have dif-
ficulty walking, talking, or completing other simple 
tasks. It is estimated that nearly 1,000,0000,000 
Americans will be living with Parkinson’s by 2020 
and of those 5 to 10 percent are diagnosed younger 
than 50 and deemed ‘‘early-onset’’. 
(4) Traumatic brain injury is a neurological 
condition that typically results from a blow or jolt to 
the head or a penetrating head injury and that can 
impact one or more parts of the brain, thereby tem-
porarily or permanently disrupting normal brain 
function. The Centers for Disease Control and Pre-
vention estimates that 153 Americans die from TBI 
every day, and that TBIs contribute to approxi-
mately 30 percent of all injury deaths. Traumatic 
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brain injury is also a serious issue that affects mili-
tary servicemembers. Estimates in prior military 
conflicts indicate that TBI was present in 14–20 
percent of surviving casualties. 
(5) Family caregivers are a crucial source of 
support and assistance for individuals suffering with 
disabilities. Family caregivers, the majority of whom 
are women, provide an estimated $470,000,000,000 
in ‘‘free’’ services annually. The supply of family 
caregivers is unlikely to keep pace with future de-
mand. The caregiver support ratio of potential care-
givers aged 45 to 64 for each person aged 80 and 
older, for instance, is 7 to 1 in 2010, 4 to 1 in 2030, 
and 3 to 1 in 2050. 
(6) The majority of family caregivers (or 53 
percent) are caring for someone ages 18 to 74. 
Forty-seven percent of family caregivers are caring 
for someone 75 or older. 
(7) Adult day programs can offer services, in-
cluding medical care, rehabilitation therapies, dig-
nified assistance with the activities of daily living, 
nutrition therapy, health monitoring, social inter-
action, stimulating activities, and transportation to 
seniors, people with disabilities, and younger adults 
with chronic diseases. 
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(8) Adult day programs geared toward people 
living with neurological diseases or conditions such 
as MS, Parkinson’s disease, TBI, or other similar 
diseases or conditions provide an important response 
to the needs of people living with these conditions 
and their family caregivers. Adult day programs can 
help to ameliorate symptoms, reduce dependency, 
provide important socialization opportunities, and 
maintain quality of life. 
(9) Adult day programs have been shown to 
provide a range of documented benefits including 
improvements in functional status, social support, 
and reductions in fatigue, depression and pain. 
Adult day programs also reduce ongoing medical 
care and hospital costs and decrease admissions to 
nursing home facilities, which can be costly for many 
families, by allowing individuals to receive health 
and social services while continuing to live at home. 
(10) There are currently few adult day pro-
grams focused on younger adult populations in the 
United States. Although young people living with 
neurological diseases or conditions may be able to 
access existing adult day programs, such programs 
are not typically intended for younger adults living 
with chronic diseases or conditions, and may not 
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provide the appropriate services to meet the age-re-
lated or disability status of these individuals. 
SEC. 3. ESTABLISHMENT OF ADULT DAY PROGRAMS. 
(a) SURVEY OF EXISTING ADULT DAY PROGRAMS.— 
(1) IN GENERAL.—Not later than 90 days after 
the date of the enactment of this section, the Assist-
ant Secretary for Aging shall initiate a comprehen-
sive survey of current adult day programs that pro-
vide care and support to individuals including young 
adults living with neurological diseases or conditions 
such as multiple sclerosis, Parkinson’s disease, trau-
matic brain injury, or any similar disease or condi-
tion. 
(2) SURVEY ELEMENTS.—In carrying out the 
survey under paragraph (1), the Assistant Secretary 
for Aging may utilize existing publicly available re-
search on adult day programs, and shall— 
(A) identify ongoing successful adult day 
programs, including by providing a brief de-
scription of how such programs were initially 
established and funded; 
(B) identify which adult day programs are 
serving young adults living with neurological 
diseases or conditions; 
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(C) develop a set of best practices to help 
guide the establishment and replication of addi-
tional successful adult day programs, includ-
ing— 
(i) program guidelines; 
(ii) recommendations on the scope of 
services that should be provided to individ-
uals with neurological diseases or condi-
tions including young adults (which may 
include rehabilitation therapy, psychosocial 
support, social stimulation and interaction, 
and spiritual, educational, or other such 
services); and 
(iii) performance goals and indicators 
to measure and analyze the outcomes gen-
erated by the services provided and to 
evaluate the overall success of the pro-
gram; and 
(D) evaluate the extent to which the Ad-
ministration for Community Living supports 
adult day programs, either directly or indi-
rectly, through current Federal grant programs. 
(3) REPORT.—Not later than 180 days after 
initiating the survey under paragraph (1), the As-
sistant Secretary for Aging shall produce and make 
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publicly available a summary report on the results of 
the survey. Such report shall include each of the ele-
ments described in paragraph (2). 
(b) ESTABLISHMENT OF GRANT PROGRAM.— 
(1) IN GENERAL.—Not later than 90 days after 
producing the report required by subsection (a)(3), 
the Assistant Secretary for Aging shall establish 
within the Administration for Community Living a 
competitive grant program for awarding grants an-
nually to eligible entities, based on the best practices 
developed under subsection (a), to fund adult day 
programs serving younger people with neurological 
diseases or conditions. 
(2) ELIGIBLE ENTITIES.—In order to be eligi-
ble for a grant under this subsection, an entity shall 
demonstrate the following: 
(A) Understanding of the special needs of 
younger people living with neurological diseases 
or conditions such as multiple sclerosis, Parkin-
son’s disease, traumatic brain injury, or other 
similar diseases or conditions, including their 
functional abilities and the potential complica-
tions across all types of cases and stages of 
such diseases or conditions. 
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(B) Understanding of the issues experi-
enced by family caregivers who assist a family 
member with neurological diseases or conditions 
such as multiple sclerosis, Parkinson’s disease, 
traumatic brain injury, or other similar diseases 
or conditions. 
(C) A capacity to provide the services rec-
ommended by the best practices developed 
under subsection (a). 
(3) ADDITIONAL SELECTION REQUIREMENT.— 
The Assistant Secretary for Aging shall not award 
a grant to an entity under this subsection if the 
amount of the award would constitute more than 40 
percent of the operating budget of the entity in the 
fiscal year for which funds for the grant are author-
ized to be expended. For purposes of this subsection, 
the fair market value of annual in-kind contributions 
of equipment or services shall be considered as part 
of the operating budget of the entity. 
(4) SELECTION OF GRANT RECIPIENTS.—Not 
later than 90 days after establishing the grant pro-
gram under this subsection, the Assistant Secretary 
for Aging shall award the first annual series of 
grants under the program. In awarding grants under 
this subsection, the Assistant Secretary should en-
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sure, to the extent practicable, a diverse geographic 
representation among grant recipients and that, sub-
ject to the availability of appropriations— 
(A) a minimum of 5 entities are selected as 
grant recipients for the first fiscal year for 
which such grants are awarded; 
(B) a minimum of 10 entities are selected 
as grant recipients for the second such fiscal 
year; 
(C) a minimum of 12 entities are selected 
as grant recipients for the third such fiscal 
year; and 
(D) a minimum of 15 entities are selected 
as grant recipients for the fourth such fiscal 
year. 
(5) REPORT.—No later than 1 year after the 
initial award of grants under this subsection, and 
annually thereafter, the Assistant Secretary for 
Aging shall produce and make publicly available a 
brief summary report on the grant program under 
this section. Each such report shall include the fol-
lowing: 
(A) A description of the adult day pro-
grams receiving funding under this section, in-
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cluding the amount of Federal funding awarded 
and the expected outcomes of each program. 
(B) A description of performance goals and 
indicators to monitor the progress of grant re-
cipients in— 
(i) responding to the needs of younger 
individuals living with neurological diseases 
or conditions such as multiple sclerosis, 
Parkinson’s disease, traumatic brain in-
jury, or other similar diseases or condi-
tions; and 
(ii) assisting the family caregivers of 
such individuals. 
(C) Any plans for improving oversight and 
management of the grant program. 
(c) DEFINITIONS.—In this Act: 
(1) The term ‘‘adult day program’’ means a 
program that provides comprehensive and effective 
care and support services to individuals living with 
neurological diseases or conditions such as multiple 
sclerosis, Parkinson’s disease, traumatic brain in-
jury, or other similar diseases or conditions that 
may result in a functional or degenerative disability 
and to their family caregivers and that may assist 
participants in ways that— 
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(A) maintain or improve their functional 
abilities, or otherwise help them adjust to their 
changing functional abilities; 
(B) prevent the onset of complications as-
sociated with severe forms of the disease or con-
dition; 
(C) promote alternatives to placement in 
nursing homes; 
(D) reduce the strain on family caregivers 
taking care of a family member living with such 
diseases or conditions; 
(E) focus on supporting the emotional, so-
cial, and intellectual needs of a younger adult 
population; or 
(F) address the needs of veterans living 
with such diseases or conditions. 
(2) The term ‘‘family caregiver’’ means a family 
member or foster parent who provides unpaid assist-
ance (which may include in-home monitoring, man-
agement, supervision, care and treatment, or other 
similar assistance) to another adult family member 
with a special need. 
(d) AUTHORIZATION OF APPROPRIATIONS.—To carry 
out this section, in addition to amounts otherwise made 
available for such purpose, there are authorized to be ap-
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propriated, and to remain available until expended, the fol-
lowing: 
(1) $1,000,000 for fiscal year 2019. 
(2) $3,000,000 for fiscal year 2020. 
(3) $6,000,000 for fiscal year 2021. 
(4) $8,000,000 for fiscal year 2022. 
(5) $10,000,000 for fiscal year 2023. 
Æ 
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