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, 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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Adult Day Center En5 hancement Act’’. 


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1 SEC. 2. FINDINGS. 

2 The Congress finds the following: 

3 (1) One in 6 people in the United States lives 

4 with a neurological disease or condition that can 

5 often result in disability, and which may require the 

6 individual to seek assistance in carrying out the ac7 tivities of daily living. Neurological diseases or condi8 tions such as multiple sclerosis (MS), early-onset 

9 Parkinson’s disease, and traumatic brain injury 

10 (TBI) can also typically affect younger adults in the 

11 middle of their lives. 

12 (2) Multiple sclerosis is a chronic, often dis13 abling disease that attacks the central nervous sys14 tem with symptoms ranging from numbness in limbs 

15 to paralysis and loss of vision. Most people with MS 

16 are diagnosed between the ages of 20 and 50 years 

17 of age. MS is a leading cause of disability in young 

18 adults. Persons living with MS who experience more 

19 severe forms of the disease are likely to require ei20 ther home care or nursing home placement, though 

21 the vast majority would prefer to remain at home to 

22 receive the care they need. Where home care is con23 cerned, approximately 80 percent of such care is 

24 provided by unpaid caregivers who are generally 

25 family members. 


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1 (3) Parkinson’s disease is a chronic, progressive 

2 neurological disease. The four primary symptoms of 

3 Parkinson’s disease are tremor, or trembling in 

4 hands, arms, legs, jaw, and face; rigidity, or stiffness 

5 of the limbs and trunk; bradykinesia, or slowness of 

6 movement; and postural instability, or impaired bal7 ance and coordination. Other symptoms may include 

8 cognitive changes; difficulty in swallowing, chewing, 

9 and speaking; urinary problems or constipation; skin 

10 problems; and sleep disruptions. As these symptoms 

11 become more pronounced, patients may have dif12 ficulty walking, talking, or completing other simple 

13 tasks. It is estimated that nearly 1,000,0000,000 

14 Americans will be living with Parkinson’s by 2020 

15 and of those 5 to 10 percent are diagnosed younger 

16 than 50 and deemed ‘‘early-onset’’. 

17 (4) Traumatic brain injury is a neurological 

18 condition that typically results from a blow or jolt to 

19 the head or a penetrating head injury and that can 

20 impact one or more parts of the brain, thereby tem21 porarily or permanently disrupting normal brain 

22 function. The Centers for Disease Control and Pre23 vention estimates that 153 Americans die from TBI 

24 every day, and that TBIs contribute to approxi25 mately 30 percent of all injury deaths. Traumatic 


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1 brain injury is also a serious issue that affects mili2 tary servicemembers. Estimates in prior military 

3 conflicts indicate that TBI was present in 14–20 

4 percent of surviving casualties. 

5 (5) Family caregivers are a crucial source of 

6 support and assistance for individuals suffering with 

7 disabilities. Family caregivers, the majority of whom 

8 are women, provide an estimated $470,000,000,000 

9 in ‘‘free’’ services annually. The supply of family 

10 caregivers is unlikely to keep pace with future de11 mand. The caregiver support ratio of potential care12 givers aged 45 to 64 for each person aged 80 and 

13 older, for instance, is 7 to 1 in 2010, 4 to 1 in 2030, 

14 and 3 to 1 in 2050. 

15 (6) The majority of family caregivers (or 53 

16 percent) are caring for someone ages 18 to 74. 

17 Forty-seven percent of family caregivers are caring 

18 for someone 75 or older. 

19 (7) Adult day programs can offer services, in20 cluding medical care, rehabilitation therapies, dig21 nified assistance with the activities of daily living, 

22 nutrition therapy, health monitoring, social inter23 action, stimulating activities, and transportation to 

24 seniors, people with disabilities, and younger adults 

25 with chronic diseases. 


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1 (8) Adult day programs geared toward people 

2 living with neurological diseases or conditions such 

3 as MS, Parkinson’s disease, TBI, or other similar 

4 diseases or conditions provide an important response 

5 to the needs of people living with these conditions 

6 and their family caregivers. Adult day programs can 

7 help to ameliorate symptoms, reduce dependency, 

8 provide important socialization opportunities, and 

9 maintain quality of life. 

10 (9) Adult day programs have been shown to 

11 provide a range of documented benefits including 

12 improvements in functional status, social support, 

13 and reductions in fatigue, depression and pain. 

14 Adult day programs also reduce ongoing medical 

15 care and hospital costs and decrease admissions to 

16 nursing home facilities, which can be costly for many 

17 families, by allowing individuals to receive health 

18 and social services while continuing to live at home. 

19 (10) There are currently few adult day pro20 grams focused on younger adult populations in the 

21 United States. Although young people living with 

22 neurological diseases or conditions may be able to 

23 access existing adult day programs, such programs 

24 are not typically intended for younger adults living 

25 with chronic diseases or conditions, and may not 


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1 provide the appropriate services to meet the age-re2 lated or disability status of these individuals. 

3 SEC. 3. ESTABLISHMENT OF ADULT DAY PROGRAMS. 

4 (a) SURVEY OF EXISTING ADULT DAY PROGRAMS.— 

5 (1) IN GENERAL.—Not later than 90 days after 

6 the date of the enactment of this section, the Assist7 ant Secretary for Aging shall initiate a comprehen8 sive survey of current adult day programs that pro9 vide care and support to individuals including young 

10 adults living with neurological diseases or conditions 

11 such as multiple sclerosis, Parkinson’s disease, trau12 matic brain injury, or any similar disease or condi13 tion. 

14 (2) SURVEY ELEMENTS.—In carrying out the 

15 survey under paragraph (1), the Assistant Secretary 

16 for Aging may utilize existing publicly available re17 search on adult day programs, and shall— 

18 (A) identify ongoing successful adult day 

19 programs, including by providing a brief de20 scription of how such programs were initially 

21 established and funded; 

22 (B) identify which adult day programs are 

23 serving young adults living with neurological 

24 diseases or conditions; 


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1 (C) develop a set of best practices to help 

2 guide the establishment and replication of addi3 tional successful adult day programs, includ4 ing— 

5 (i) program guidelines; 

6 (ii) recommendations on the scope of 

7 services that should be provided to individ8 uals with neurological diseases or condi9 tions including young adults (which may 

10 include rehabilitation therapy, psychosocial 

11 support, social stimulation and interaction, 

12 and spiritual, educational, or other such 

13 services); and 

14 (iii) performance goals and indicators 

15 to measure and analyze the outcomes gen16 erated by the services provided and to 

17 evaluate the overall success of the pro18 gram; and 

19 (D) evaluate the extent to which the Ad20 ministration for Community Living supports 

21 adult day programs, either directly or indi22 rectly, through current Federal grant programs. 

23 (3) REPORT.—Not later than 180 days after 

24 initiating the survey under paragraph (1), the As25 sistant Secretary for Aging shall produce and make 


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1 publicly available a summary report on the results of 

2 the survey. Such report shall include each of the ele3 ments described in paragraph (2). 

4 (b) ESTABLISHMENT OF GRANT PROGRAM.— 

5 (1) IN GENERAL.—Not later than 90 days after 

6 producing the report required by subsection (a)(3), 

7 the Assistant Secretary for Aging shall establish 

8 within the Administration for Community Living a 

9 competitive grant program for awarding grants an10 nually to eligible entities, based on the best practices 

11 developed under subsection (a), to fund adult day 

12 programs serving younger people with neurological 

13 diseases or conditions. 

14 (2) ELIGIBLE ENTITIES.—In order to be eligi15 ble for a grant under this subsection, an entity shall 

16 demonstrate the following: 

17 (A) Understanding of the special needs of 

18 younger people living with neurological diseases 

19 or conditions such as multiple sclerosis, Parkin20 son’s disease, traumatic brain injury, or other 

21 similar diseases or conditions, including their 

22 functional abilities and the potential complica23 tions across all types of cases and stages of 

24 such diseases or conditions. 


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1 (B) Understanding of the issues experi2 enced by family caregivers who assist a family 

3 member with neurological diseases or conditions 

4 such as multiple sclerosis, Parkinson’s disease, 

5 traumatic brain injury, or other similar diseases 

6 or conditions. 

7 (C) A capacity to provide the services rec8 ommended by the best practices developed 

9 under subsection (a). 

10 (3) ADDITIONAL SELECTION REQUIREMENT.— 

11 The Assistant Secretary for Aging shall not award 

12 a grant to an entity under this subsection if the 

13 amount of the award would constitute more than 40 

14 percent of the operating budget of the entity in the 

15 fiscal year for which funds for the grant are author16 ized to be expended. For purposes of this subsection, 

17 the fair market value of annual in-kind contributions 

18 of equipment or services shall be considered as part 

19 of the operating budget of the entity. 

20 (4) SELECTION OF GRANT RECIPIENTS.—Not 

21 later than 90 days after establishing the grant pro22 gram under this subsection, the Assistant Secretary 

23 for Aging shall award the first annual series of 

24 grants under the program. In awarding grants under 

25 this subsection, the Assistant Secretary should enVerDate Sep 11 2014 23:12 Jan 18, 2019 Jkt 089200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H320.IH H320

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1 sure, to the extent practicable, a diverse geographic 

2 representation among grant recipients and that, sub3 ject to the availability of appropriations— 

4 (A) a minimum of 5 entities are selected as 

5 grant recipients for the first fiscal year for 

6 which such grants are awarded; 

7 (B) a minimum of 10 entities are selected 

8 as grant recipients for the second such fiscal 

9 year; 

10 (C) a minimum of 12 entities are selected 

11 as grant recipients for the third such fiscal 

12 year; and 

13 (D) a minimum of 15 entities are selected 

14 as grant recipients for the fourth such fiscal 

15 year. 

16 (5) REPORT.—No later than 1 year after the 

17 initial award of grants under this subsection, and 

18 annually thereafter, the Assistant Secretary for 

19 Aging shall produce and make publicly available a 

20 brief summary report on the grant program under 

21 this section. Each such report shall include the fol22 lowing: 

23 (A) A description of the adult day pro24 grams receiving funding under this section, inVerDate Sep 11 2014 23:12 Jan 18, 2019 Jkt 089200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H320.IH H320

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1 cluding the amount of Federal funding awarded 

2 and the expected outcomes of each program. 

3 (B) A description of performance goals and 

4 indicators to monitor the progress of grant re5 cipients in— 

6 (i) responding to the needs of younger 

7 individuals living with neurological diseases 

8 or conditions such as multiple sclerosis, 

9 Parkinson’s disease, traumatic brain in10 jury, or other similar diseases or condi11 tions; and 

12 (ii) assisting the family caregivers of 

13 such individuals. 

14 (C) Any plans for improving oversight and 

15 management of the grant program. 

16 (c) DEFINITIONS.—In this Act: 

17 (1) The term ‘‘adult day program’’ means a 

18 program that provides comprehensive and effective 

19 care and support services to individuals living with 

20 neurological diseases or conditions such as multiple 

21 sclerosis, Parkinson’s disease, traumatic brain in22 jury, or other similar diseases or conditions that 

23 may result in a functional or degenerative disability 

24 and to their family caregivers and that may assist 

25 participants in ways that— 


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1 (A) maintain or improve their functional 

2 abilities, or otherwise help them adjust to their 

3 changing functional abilities; 

4 (B) prevent the onset of complications as5 sociated with severe forms of the disease or con6 dition; 

7 (C) promote alternatives to placement in 

8 nursing homes; 

9 (D) reduce the strain on family caregivers 

10 taking care of a family member living with such 

11 diseases or conditions; 

12 (E) focus on supporting the emotional, so13 cial, and intellectual needs of a younger adult 

14 population; or 

15 (F) address the needs of veterans living 

16 with such diseases or conditions. 

17 (2) The term ‘‘family caregiver’’ means a family 

18 member or foster parent who provides unpaid assist19 ance (which may include in-home monitoring, man20 agement, supervision, care and treatment, or other 

21 similar assistance) to another adult family member 

22 with a special need. 

23 (d) AUTHORIZATION OF APPROPRIATIONS.—To carry 

24 out this section, in addition to amounts otherwise made 

25 available for such purpose, there are authorized to be apVerDate Sep 11 2014 23:12 Jan 18, 2019 Jkt 089200 PO 00000 Frm 00012 Fmt 6652 Sfmt 6201 E:\BILLS\H320.IH H320

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1 propriated, and to remain available until expended, the fol2 lowing: 

3 (1) $1,000,000 for fiscal year 2019. 

4 (2) $3,000,000 for fiscal year 2020. 

5 (3) $6,000,000 for fiscal year 2021. 

6 (4) $8,000,000 for fiscal year 2022. 

7 (5) $10,000,000 for fiscal year 2023. 

Æ 


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