[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[H.R. 320 Introduced in House (IH)]

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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, 
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

                            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, 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 1,000,0000,000 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 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 ``free'' 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 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, 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 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.
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