[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H.R. 3706 Introduced in House (IH)]
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118th CONGRESS
1st Session
H. R. 3706
To expand and enhance existing adult day programs for younger people
with neurological diseases or conditions (such as multiple sclerosis,
Parkinson'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
May 25, 2023
Ms. Lee of California (for herself, Mr. Johnson of Georgia, Mr. Takano,
and Mr. Carson) 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, 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.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Adult Day Center Enhancement Act''.
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 activities of daily living.
Neurological diseases or conditions 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 disabling
disease that attacks the central nervous system 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 either 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 concerned, approximately 80 percent of such care is
provided by unpaid caregivers who are generally family members.
(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 balance 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 difficulty
walking, talking, or completing other simple tasks. It is
estimated that nearly 1,000,000,000 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 temporarily or permanently disrupting
normal brain function. The Centers for Disease Control and
Prevention estimates that 153 Americans die from TBI every day,
and that TBIs contribute to approximately 30 percent of all
injury deaths. Traumatic brain injury is also a serious issue
that affects military 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 unpaid services annually. The
supply of family caregivers is unlikely to keep pace with
future demand. The caregiver support ratio of potential
caregivers 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 54 percent) are
caring for someone ages 18 to 74. Forty-six percent of family
caregivers are caring for someone 75 or older.
(7) Adult day programs can offer services, including
medical care, rehabilitation therapies, dignified assistance
with the activities of daily living, nutrition therapy, health
monitoring, social interaction, stimulating activities, and
transportation to seniors, people with disabilities, and
younger adults with chronic diseases.
(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 programs 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 provide the appropriate
services to meet the age-related 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 Assistant Secretary for
Aging shall initiate a comprehensive survey of current adult
day programs that provide care and support to individuals
including young adults living with neurological diseases or
conditions such as multiple sclerosis, Parkinson's disease,
traumatic brain injury, or any similar disease or condition.
(2) Survey elements.--In carrying out the survey under
paragraph (1), the Assistant Secretary for Aging may utilize
existing publicly available research on adult day programs, and
shall--
(A) identify ongoing successful adult day programs,
including by providing a brief description 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;
(C) develop a set of best practices to help guide
the establishment and replication of additional
successful adult day programs, including--
(i) program guidelines;
(ii) recommendations on the scope of
services that should be provided to individuals
with neurological diseases or conditions
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 generated by
the services provided and to evaluate the
overall success of the program; and
(D) evaluate the extent to which the Administration
for Community Living supports adult day programs,
either directly or indirectly, through current Federal
grant programs.
(3) Report.--Not later than 180 days after initiating the
survey under paragraph (1), the Assistant Secretary for Aging
shall produce and make publicly available a summary report on
the results of the survey. Such report shall include each of
the elements 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 annually 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 eligible 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, Parkinson's disease,
traumatic brain injury, or other similar diseases or
conditions, including their functional abilities and
the potential complications across all types of cases
and stages of such diseases or conditions.
(B) Understanding of the issues experienced 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 recommended
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 authorized 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 program 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 ensure, to the
extent practicable, a diverse geographic representation among
grant recipients and that, subject 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 following:
(A) A description of the adult day programs
receiving funding under this section, including 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 recipients
in--
(i) responding to the needs of younger
individuals living with neurological diseases
or conditions such as multiple sclerosis,
Parkinson's disease, traumatic brain injury, or
other similar diseases or conditions; 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 injury, 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--
(A) maintain or improve their functional abilities,
or otherwise help them adjust to their changing
functional abilities;
(B) prevent the onset of complications associated
with severe forms of the disease or condition;
(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, social, 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 assistance (which may include
in-home monitoring, management, 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 appropriated, and to remain available until
expended, the following:
(1) $1,000,000 for fiscal year 2023.
(2) $3,000,000 for fiscal year 2024.
(3) $6,000,000 for fiscal year 2025.
(4) $8,000,000 for fiscal year 2026.
(5) $10,000,000 for fiscal year 2027.
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