I 

113TH CONGRESS 

1ST SESSION H. R. 3221 

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 

SEPTEMBER 30, 2013 

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 informal, unpaid caregivers who are gen25 erally 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 500,000 to 

14 1,500,000 people live with Parkinson’s and of those 

15 5 to 10 percent are diagnosed younger than 60 and 

16 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 1,400,000 TBIs occur annu24 ally, resulting in disabilities affecting up to 90,000 

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1 matic brain injury is also a serious issue that affects 

2 military 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 $450,000,000,000 

9 in ‘‘free’’ services annually. The current pool of po10 tential family caregivers is dwindling, from 11 po11 tential caregivers for each person needing care today 

12 to a projected 4 to 1 ratio by 2050. 

13 (6) Recent studies indicate that the total esti14 mated cost to employers for full-time employees with 

15 intensive caregiving responsibilities is 

16 $17,100,000,000. The total estimated cost to em17 ployers for all full-time, employed caregivers is 

18 $33,600,000,000 annually. 

19 (7) Currently more than half of care recipients 

20 (56 percent) are under age 75, and almost one-third 

21 (28 percent) are under age 50 reflecting the need to 

22 offer age-appropriate services. 

23 (8) Adult day programs can offer services, in24 cluding medical care, rehabilitation therapies, dig25 nified assistance with the activities of daily living, 


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1 nutrition therapy, health monitoring, social inter2 action, stimulating activities, and transportation to 

3 seniors, people with disabilities, and younger adults 

4 with chronic diseases. 

5 (9) Adult day programs geared toward people 

6 living with neurological diseases or conditions such 

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

8 diseases or conditions provide an important response 

9 to the needs of people living with these conditions 

10 and their caregivers. Adult day programs can help to 

11 ameliorate symptoms, reduce dependency, provide 

12 important socialization opportunities, and maintain 

13 quality of life. 

14 (10) Adult day programs have been shown to 

15 provide a range of documented benefits including 

16 improvements in functional status, social support, 

17 and reductions in fatigue, depression and pain. 

18 Adult day programs also reduce ongoing medical 

19 care and hospital costs and decrease admissions to 

20 nursing home facilities, which can be costly for many 

21 families, by allowing individuals to receive health 

22 and social services while continuing to live at home. 

23 (11) There are currently few adult day pro24 grams focused on younger adult populations in the 

25 United States. Although young people living with 


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1 neurological diseases or conditions may be able to 

2 access existing adult day programs, such programs 

3 are not typically intended for younger adults living 

4 with chronic diseases or conditions, and may not 

5 provide the appropriate services to meet the age-re6 lated or disability status of these individuals. 

7 SEC. 3. ESTABLISHMENT OF ADULT DAY PROGRAMS. 

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

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

10 the date of the enactment of this section, the Assist11 ant Secretary for Aging shall initiate a comprehen12 sive survey of current adult day programs that pro13 vide care and support to individuals including young 

14 adults living with neurological diseases or conditions 

15 such as multiple sclerosis, Parkinson’s disease, trau16 matic brain injury, or any similar disease or condi17 tion. 

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

19 survey under paragraph (1), the Assistant Secretary 

20 for Aging may utilize existing publicly available re21 search on adult day programs, and shall— 

22 (A) identify ongoing successful adult day 

23 programs, including by providing a brief de24 scription of how such programs were initially 

25 established and funded; 


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1 (B) identify which adult day programs are 

2 serving young adults living with neurological 

3 diseases or conditions; 

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

5 guide the establishment and replication of addi6 tional successful adult day programs, includ7 ing— 

8 (i) program guidelines; 

9 (ii) recommendations on the scope of 

10 services that should be provided to individ11 uals with neurological diseases or condi12 tions including young adults (which may 

13 include rehabilitation therapy, psychosocial 

14 support, social stimulation and interaction, 

15 and spiritual, educational, or other such 

16 services); and 

17 (iii) performance goals and indicators 

18 to measure and analyze the outcomes gen19 erated by the services provided and to 

20 evaluate the overall success of the pro21 gram; and 

22 (D) evaluate the extent to which the Ad23 ministration for Community Living supports 

24 adult day programs, either directly or indi25 rectly, through current Federal grant programs. 


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

2 initiating the survey under paragraph (1), the As3 sistant Secretary for Aging shall produce and make 

4 publicly available a summary report on the results of 

5 the survey. Such report shall include each of the ele6 ments described in paragraph (2). 

7 (b) ESTABLISHMENT OF GRANT PROGRAM.— 

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

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

10 the Assistant Secretary for Aging shall establish 

11 within the Administration for Community Living a 

12 competitive grant program for awarding grants an13 nually to eligible entities, based on the best practices 

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

15 programs serving younger people with neurological 

16 diseases or conditions. 

17 (2) ELIGIBLE ENTITIES.—In order to be eligi18 ble for a grant under this subsection, an entity shall 

19 demonstrate the following: 

20 (A) Understanding of the special needs of 

21 younger people living with neurological diseases 

22 or conditions such as multiple sclerosis, Parkin23 son’s disease, traumatic brain injury, or other 

24 similar diseases or conditions, including their 

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1 tions across all types of cases and stages of 

2 such diseases or conditions. 

3 (B) Understanding of the issues experi4 enced by family caregivers who assist a family 

5 member with neurological diseases or conditions 

6 such as multiple sclerosis, Parkinson’s disease, 

7 traumatic brain injury, or other similar diseases 

8 or conditions. 

9 (C) A capacity to provide the services rec10 ommended by the best practices developed 

11 under subsection (a). 

12 (3) ADDITIONAL SELECTION REQUIREMENT.— 

13 The Assistant Secretary for Aging shall not award 

14 a grant to an entity under this subsection if the 

15 amount of the award would constitute more than 40 

16 percent of the operating budget of the entity in the 

17 fiscal year for which funds for the grant are author18 ized to be expended. For purposes of this subsection, 

19 the fair market value of annual in-kind contributions 

20 of equipment or services shall be considered as part 

21 of the operating budget of the entity. 

22 (4) SELECTION OF GRANT RECIPIENTS.—Not 

23 later than 90 days after establishing the grant pro24 gram under this subsection, the Assistant Secretary 

25 for Aging shall award the first annual series of 


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1 grants under the program. In awarding grants under 

2 this subsection, the Assistant Secretary should en3 sure, to the extent practicable, a diverse geographic 

4 representation among grant recipients and that, sub5 ject to the availability of appropriations— 

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

7 grant recipients for the first fiscal year for 

8 which such grants are awarded; 

9 (B) a minimum of 10 entities are selected 

10 as grant recipients for the second such fiscal 

11 year; 

12 (C) a minimum of 12 entities are selected 

13 as grant recipients for the third such fiscal 

14 year; and 

15 (D) a minimum of 15 entities are selected 

16 as grant recipients for the fourth such fiscal 

17 year. 

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

19 initial award of grants under this subsection, and 

20 annually thereafter, the Assistant Secretary for 

21 Aging shall produce and make publicly available a 

22 brief summary report on the grant program under 

23 this section. Each such report shall include the fol24 lowing: 


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1 (A) A description of the adult day pro2 grams receiving funding under this section, in3 cluding the amount of Federal funding awarded 

4 and the expected outcomes of each program. 

5 (B) A description of performance goals and 

6 indicators to monitor the progress of grant re7 cipients in— 

8 (i) responding to the needs of younger 

9 individuals living with neurological diseases 

10 or conditions such as multiple sclerosis, 

11 Parkinson’s disease, traumatic brain in12 jury, or other similar diseases or condi13 tions; and 

14 (ii) assisting the family caregivers of 

15 such individuals. 

16 (C) Any plans for improving oversight and 

17 management of the grant program. 

18 (c) DEFINITIONS.—In this Act: 

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

20 program that provides comprehensive and effective 

21 care and support services to individuals living with 

22 neurological diseases or conditions such as multiple 

23 sclerosis, Parkinson’s disease, traumatic brain in24 jury, or other similar diseases or conditions that 

25 may result in a functional or degenerative disability 


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1 and to their family caregivers and that may assist 

2 participants in ways that— 

3 (A) maintain or improve their functional 

4 abilities, or otherwise help them adjust to their 

5 changing functional abilities; 

6 (B) prevent the onset of complications as7 sociated with severe forms of the disease or con8 dition; 

9 (C) promote alternatives to placement in 

10 nursing homes; 

11 (D) reduce the strain on family caregivers 

12 taking care of a family member living with such 

13 diseases or conditions; 

14 (E) focus on supporting the emotional, so15 cial, and intellectual needs of a younger adult 

16 population; or 

17 (F) address the needs of veterans living 

18 with such diseases or conditions. 

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

20 member or foster parent who provides unpaid assist21 ance (which may include in-home monitoring, man22 agement, supervision, care and treatment, or other 

23 similar assistance) to another adult family member 

24 with a special need. 


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1 (d) AUTHORIZATION OF APPROPRIATIONS.—To carry 

2 out this section, in addition to amounts otherwise made 

3 available for such purpose, there are authorized to be ap4 propriated, and to remain available until expended, the fol5 lowing: 

6 (1) $1,000,000 for fiscal year 2014. 

7 (2) $3,000,000 for fiscal year 2015. 

8 (3) $6,000,000 for fiscal year 2016. 

9 (4) $8,000,000 for fiscal year 2017. 

10 (5) $10,000,000 for fiscal year 2018. 

Æ 


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