1.This Act may be cited as the
Adult Day Achievement Center
Enhancement Act
.
2.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) often 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 individuals with MS are diagnosed between the ages of 20 and 50. It is
estimated that more than 400,000 individuals in the United States are living
with MS. Individuals 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 informal, unpaid, caregivers who are generally family
members.
(3)Parkinson’s
disease is a chronic, progressive neurological disease. The 4 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. It
is estimated that nearly 1,000,000 individuals live with Parkinson’s disease
and, of those individuals, 5 to 10 percent are diagnosed with the disease
before age 60 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
1,400,000 new cases of TBI occur annually, resulting in disabilities affecting
up to 90,000 individuals among a broad range of age groups. Traumatic brain
injury is a serious issue that affects military service members. Estimates in
prior military conflicts, indicate that TBI was present in 14 to 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 $306,000,000,000 in unpaid services annually. The current pool of
potential family caregivers is dwindling, from 11 potential caregivers for each
individual needing care today to a projected ratio of 4 potential caregivers
for each such individual by 2050.
(6)Recent studies
indicate that the total estimated cost to employers for full-time employees
with intensive caregiving responsibilities is $17,100,000,000 annually. The
total estimated cost to employers for all full-time, employed caregivers is
$33,600,000,000 annually.
(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, individuals with disabilities, and younger adults with chronic
diseases.
(8)Adult day programs
geared toward individuals 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 individuals living with these
conditions and the caregivers of such individuals. 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. As a result, the majority of individuals living with
neurological diseases are unable to access this important opportunity for
maximizing their health and wellness. Although individuals living with
neurological diseases or conditions may be able to access other 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.
3.Establishment of
adult day programs
(a)Survey of
existing adult day programs
(1)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 living with neurological diseases
or conditions, including multiple sclerosis, Parkinson’s disease, traumatic
brain injury, and any other similar disease or condition.
(2)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)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 (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
(C)evaluate the
extent to which the Administration on Aging supports adult day programs, either
directly or indirectly, through current Federal grant programs.
(3)Not
later than 180 days after initiating the survey under paragraph (1), the
Assistant Secretary for Aging shall prepare 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)Not later than 90 days after producing the report
required by subsection (a)(3), the Assistant Secretary for Aging shall
establish within the Administration on Aging 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.
(2)In order to be eligible for a grant under this
subsection, an entity shall demonstrate the following:
(A)Understanding of the special needs of
individuals living with neurological diseases or conditions such as multiple
sclerosis, Parkinson’s disease, traumatic brain injury, or other similar
diseases or conditions, including the functional abilities of such individuals
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 a neurological disease or
condition such as multiple sclerosis, Parkinson’s disease, traumatic brain
injury, or other similar disease or condition.
(C)A capacity to
provide the services recommended by the best practices developed under
subsection (a).
(3)Additional
selection requirementThe 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 recipientsNot 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 shall 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)No
later than 1 year after the initial award of grants under this subsection, and
annually thereafter, the Assistant Secretary for Aging shall prepare 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 individuals
living with neurological diseases or conditions such as multiple sclerosis,
Parkinson’s disease, traumatic brain injury, and 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)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 the family caregivers of such individuals, and that may
assist such individuals and family caregivers in ways that—
(A)maintain or
improve the functional abilities of such individuals, or otherwise help such
individuals adjust to 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 a disease or condition;
(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 a disease or condition.
(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
appropriationsThere are
authorized to be appropriated, in addition to amounts otherwise made available
for such purpose, such sums as may be necessary to carry out this
section.