II 

112TH CONGRESS 

1ST SESSION S. 495 

To expand and enhance existing adult day programs for individuals with 

neurological diseases or conditions, including multiple sclerosis, Parkinson’s disease, traumatic brain injury, and other similar diseases or conditions, to support and improve access to respite services for family caregivers who are taking care of such individuals, and for other purposes. 

IN THE SENATE OF THE UNITED STATES 

MARCH 7, 2011 

Mr. CASEY introduced the following bill; which was read twice and referred 

to the Committee on Health, Education, Labor, and Pensions 

A BILL 

To expand and enhance existing adult day programs for 

individuals with neurological diseases or conditions, including multiple sclerosis, Parkinson’s disease, traumatic 

brain injury, and other similar diseases or conditions, 

to support and improve access to respite services for 

family caregivers who are taking care of such individuals, 

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 Achieve5 ment Center Enhancement Act’’. 


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1 SEC. 2. FINDINGS. 

2 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) often affect younger adults in the middle of 

11 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 individuals with 

16 MS are diagnosed between the ages of 20 and 50. 

17 It is estimated that more than 400,000 individuals 

18 in the United States are living with MS. Individuals 

19 living with MS who experience more severe forms of 

20 the disease are likely to require either home care or 

21 nursing home placement, though the vast majority 

22 would prefer to remain at home to receive the care 

23 they need. Where home care is concerned, approxi24 mately 80 percent of such care is provided by infor25 mal, unpaid, caregivers who are generally family 

26 members. 


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

2 neurological disease. The 4 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. It is estimated that nearly 

8 1,000,000 individuals live with Parkinson’s disease 

9 and, of those individuals, 5 to 10 percent are diag10 nosed with the disease before age 60 and deemed 

11 ‘‘early-onset’’. 

12 (4) Traumatic brain injury is a neurological 

13 condition that typically results from a blow or jolt to 

14 the head or a penetrating head injury and that can 

15 impact one or more parts of the brain, thereby tem16 porarily or permanently disrupting normal brain 

17 function. The Centers for Disease Control and Pre18 vention estimates that 1,400,000 new cases of TBI 

19 occur annually, resulting in disabilities affecting up 

20 to 90,000 individuals among a broad range of age 

21 groups. Traumatic brain injury is a serious issue 

22 that affects military service members. Estimates in 

23 prior military conflicts, indicate that TBI was 

24 present in 14 to 20 percent of surviving casualties. 


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1 (5) Family caregivers are a crucial source of 

2 support and assistance for individuals suffering with 

3 disabilities. Family caregivers, the majority of whom 

4 are women, provide an estimated $306,000,000,000 

5 in unpaid services annually. The current pool of po6 tential family caregivers is dwindling, from 11 po7 tential caregivers for each individual needing care 

8 today to a projected ratio of 4 potential caregivers 

9 for each such individual by 2050. 

10 (6) Recent studies indicate that the total esti11 mated cost to employers for full-time employees with 

12 intensive caregiving responsibilities is 

13 $17,100,000,000 annually. The total estimated cost 

14 to employers for all full-time, employed caregivers is 

15 $33,600,000,000 annually. 

16 (7) Adult day programs can offer services, in17 cluding medical care, rehabilitation therapies, dig18 nified assistance with the activities of daily living, 

19 nutrition therapy, health monitoring, social inter20 action, stimulating activities, and transportation to 

21 seniors, individuals with disabilities, and younger 

22 adults with chronic diseases. 

23 (8) Adult day programs geared toward individ24 uals living with neurological diseases or conditions 

25 such as MS, Parkinson’s disease, TBI, or other 


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1 similar diseases or conditions, provide an important 

2 response to the needs of individuals living with these 

3 conditions and the caregivers of such individuals. 

4 Adult day programs can help to ameliorate symp5 toms, reduce dependency, provide important social6 ization opportunities, and maintain quality of life. 

7 (9) Adult day programs have been shown to 

8 provide a range of documented benefits, including 

9 improvements in functional status, social support, 

10 and reductions in fatigue, depression, and pain. 

11 Adult day programs also reduce ongoing medical 

12 care and hospital costs and decrease admissions to 

13 nursing home facilities, which can be costly for many 

14 families, by allowing individuals to receive health 

15 and social services while continuing to live at home. 

16 (10) There are currently few adult day pro17 grams focused on younger adult populations in the 

18 United States. As a result, the majority of individ19 uals living with neurological diseases are unable to 

20 access this important opportunity for maximizing 

21 their health and wellness. Although individuals living 

22 with neurological diseases or conditions may be able 

23 to access other existing adult day programs, such 

24 programs are not typically intended for younger 

25 adults living with chronic diseases or conditions, and 


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1 may not provide the appropriate services to meet the 

2 age-related 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 living with neu10 rological diseases or conditions, including multiple 

11 sclerosis, Parkinson’s disease, traumatic brain in12 jury, and any other similar disease or condition. 

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

14 survey under paragraph (1), the Assistant Secretary 

15 for Aging may utilize existing publicly available re16 search on adult day programs, and shall— 

17 (A) identify ongoing successful adult day 

18 programs, including by providing a brief de19 scription of how such programs were initially 

20 established and funded; 

21 (B) develop a set of best practices to help 

22 guide the establishment and replication of addi23 tional successful adult day programs, includ24 ing— 

25 (i) program guidelines; 


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1 (ii) recommendations on the scope of 

2 services that should be provided (which 

3 may include rehabilitation therapy, psycho4 social support, social stimulation and inter5 action, and spiritual, educational, or other 

6 such services); and 

7 (iii) performance goals and indicators 

8 to measure and analyze the outcomes gen9 erated by the services provided and to 

10 evaluate the overall success of the pro11 gram; and 

12 (C) evaluate the extent to which the Ad13 ministration on Aging supports adult day pro14 grams, either directly or indirectly, through cur15 rent Federal grant programs. 

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

17 initiating the survey under paragraph (1), the As18 sistant Secretary for Aging shall prepare and make 

19 publicly available a summary report on the results of 

20 the survey. Such report shall include each of the ele21 ments described in paragraph (2). 

22 (b) ESTABLISHMENT OF GRANT PROGRAM.— 

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

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

25 the Assistant Secretary for Aging shall establish 


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1 within the Administration on Aging a competitive 

2 grant program for awarding grants annually to eligi3 ble entities, based on the best practices developed 

4 under subsection (a), to fund adult day programs. 

5 (2) ELIGIBLE ENTITIES.—In order to be eligi6 ble for a grant under this subsection, an entity shall 

7 demonstrate the following: 

8 (A) Understanding of the special needs of 

9 individuals living with neurological diseases or 

10 conditions such as multiple sclerosis, Parkin11 son’s disease, traumatic brain injury, or other 

12 similar diseases or conditions, including the 

13 functional abilities of such individuals and the 

14 potential complications across all types of cases 

15 and stages of such diseases or conditions. 

16 (B) Understanding of the issues experi17 enced by family caregivers who assist a family 

18 member with a neurological disease or condition 

19 such as multiple sclerosis, Parkinson’s disease, 

20 traumatic brain injury, or other similar disease 

21 or condition. 

22 (C) A capacity to provide the services rec23 ommended by the best practices developed 

24 under subsection (a). 


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1 (3) ADDITIONAL SELECTION REQUIREMENT.— 

2 The Assistant Secretary for Aging shall not award 

3 a grant to an entity under this subsection if the 

4 amount of the award would constitute more than 40 

5 percent of the operating budget of the entity in the 

6 fiscal year for which funds for the grant are author7 ized to be expended. For purposes of this subsection, 

8 the fair market value of annual in-kind contributions 

9 of equipment or services shall be considered as part 

10 of the operating budget of the entity. 

11 (4) SELECTION OF GRANT RECIPIENTS.—Not 

12 later than 90 days after establishing the grant pro13 gram under this subsection, the Assistant Secretary 

14 for Aging shall award the first annual series of 

15 grants under the program. In awarding grants under 

16 this subsection, the Assistant Secretary shall ensure, 

17 to the extent practicable, a diverse geographic rep18 resentation among grant recipients and that, subject 

19 to the availability of appropriations— 

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

21 grant recipients for the first fiscal year for 

22 which such grants are awarded; 

23 (B) a minimum of 10 entities are selected 

24 as grant recipients for the second such fiscal 

25 year; 


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1 (C) a minimum of 12 entities are selected 

2 as grant recipients for the third such fiscal 

3 year; and 

4 (D) a minimum of 15 entities are selected 

5 as grant recipients for the fourth such fiscal 

6 year. 

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

8 initial award of grants under this subsection, and 

9 annually thereafter, the Assistant Secretary for 

10 Aging shall prepare and make publicly available a 

11 brief summary report on the grant program under 

12 this section. Each such report shall include the fol13 lowing: 

14 (A) A description of the adult day pro15 grams receiving funding under this section, in16 cluding the amount of Federal funding awarded 

17 and the expected outcomes of each program. 

18 (B) A description of performance goals and 

19 indicators to monitor the progress of grant re20 cipients in— 

21 (i) responding to the needs of individ22 uals living with neurological diseases or 

23 conditions such as multiple sclerosis, Par24 kinson’s disease, traumatic brain injury, 


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1 and other similar diseases or conditions; 

2 and 

3 (ii) assisting the family caregivers of 

4 such individuals. 

5 (C) Any plans for improving oversight and 

6 management of the grant program. 

7 (c) DEFINITIONS.—In this Act: 

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

9 program that provides comprehensive and effective 

10 care and support services to individuals living with 

11 neurological diseases or conditions such as multiple 

12 sclerosis, Parkinson’s disease, traumatic brain in13 jury, or other similar diseases or conditions that 

14 may result in a functional or degenerative disability 

15 and to the family caregivers of such individuals, and 

16 that may assist such individuals and family care17 givers in ways that— 

18 (A) maintain or improve the functional 

19 abilities of such individuals, or otherwise help 

20 such individuals adjust to changing functional 

21 abilities; 

22 (B) prevent the onset of complications as23 sociated with severe forms of the disease or con24 dition; 


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1 (C) promote alternatives to placement in 

2 nursing homes; 

3 (D) reduce the strain on family caregivers 

4 taking care of a family member living with such 

5 a disease or condition; 

6 (E) focus on supporting the emotional, so7 cial, and intellectual needs of a younger adult 

8 population; or 

9 (F) address the needs of veterans living 

10 with such a disease or condition. 

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

12 member or foster parent who provides unpaid assist13 ance (which may include in-home monitoring, man14 agement, supervision, care and treatment, or other 

15 similar assistance) to another adult family member 

16 with a special need. 

17 (d) AUTHORIZATION OF APPROPRIATIONS.—There 

18 are authorized to be appropriated, in addition to amounts 

19 otherwise made available for such purpose, such sums as 

20 may be necessary to carry out this section. 

Æ 


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