Adult Day Center Enhancement Act

I 117TH CONGRESS 1ST SESSION H. R. 253 To expand and enhance existing adult day programs for younger people with neurological diseases or conditions (such as multiple sclerosis, Par- kinson’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 11, 2021 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, trau- matic brain injury, or other similar diseases or condi- tions) 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 Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘Adult Day Center En- 4 hancement Act’’. 5 VerDate Sep 11 2014 01:00 Feb 05, 2021 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H253.IH H253 kjohnson on DSK79L0C42PROD with BILLS 2 •HR 253 IH SEC. 2. FINDINGS. 1 The Congress finds the following: 2 (1) One in 6 people in the United States lives 3 with a neurological disease or condition that can 4 often result in disability, and which may require the 5 individual to seek assistance in carrying out the ac- 6 tivities of daily living. Neurological diseases or condi- 7 tions such as multiple sclerosis (MS), early-onset 8 Parkinson’s disease, and traumatic brain injury 9 (TBI) can also typically affect younger adults in the 10 middle of their lives. 11 (2) Multiple sclerosis is a chronic, often dis- 12 abling disease that attacks the central nervous sys- 13 tem with symptoms ranging from numbness in limbs 14 to paralysis and loss of vision. Most people with MS 15 are diagnosed between the ages of 20 and 50 years 16 of age. MS is a leading cause of disability in young 17 adults. Persons living with MS who experience more 18 severe forms of the disease are likely to require ei- 19 ther home care or nursing home placement, though 20 the vast majority would prefer to remain at home to 21 receive the care they need. Where home care is con- 22 cerned, approximately 80 percent of such care is 23 provided by unpaid caregivers who are generally 24 family members. 25 VerDate Sep 11 2014 01:00 Feb 05, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H253.IH H253 kjohnson on DSK79L0C42PROD with BILLS 3 •HR 253 IH (3) Parkinson’s disease is a chronic, progressive 1 neurological disease. The four primary symptoms of 2 Parkinson’s disease are tremor, or trembling in 3 hands, arms, legs, jaw, and face; rigidity, or stiffness 4 of the limbs and trunk; bradykinesia, or slowness of 5 movement; and postural instability, or impaired bal- 6 ance and coordination. Other symptoms may include 7 cognitive changes; difficulty in swallowing, chewing, 8 and speaking; urinary problems or constipation; skin 9 problems; and sleep disruptions. As these symptoms 10 become more pronounced, patients may have dif- 11 ficulty walking, talking, or completing other simple 12 tasks. It is estimated that nearly 1,000,000,000 13 Americans will be living with Parkinson’s by 2020 14 and of those 5 to 10 percent are diagnosed younger 15 than 50 and deemed ‘‘early-onset’’. 16 (4) Traumatic brain injury is a neurological 17 condition that typically results from a blow or jolt to 18 the head or a penetrating head injury and that can 19 impact one or more parts of the brain, thereby tem- 20 porarily or permanently disrupting normal brain 21 function. The Centers for Disease Control and Pre- 22 vention estimates that 153 Americans die from TBI 23 every day, and that TBIs contribute to approxi- 24 mately 30 percent of all injury deaths. Traumatic 25 VerDate Sep 11 2014 01:00 Feb 05, 2021 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H253.IH H253 kjohnson on DSK79L0C42PROD with BILLS 4 •HR 253 IH brain injury is also a serious issue that affects mili- 1 tary servicemembers. Estimates in prior military 2 conflicts indicate that TBI was present in 14–20 3 percent of surviving casualties. 4 (5) Family caregivers are a crucial source of 5 support and assistance for individuals suffering with 6 disabilities. Family caregivers, the majority of whom 7 are women, provide an estimated $470,000,000,000 8 in unpaid services annually. The supply of family 9 caregivers is unlikely to keep pace with future de- 10 mand. The caregiver support ratio of potential care- 11 givers aged 45 to 64 for each person aged 80 and 12 older, for instance, is 7 to 1 in 2010, 4 to 1 in 2030, 13 and 3 to 1 in 2050. 14 (6) The majority of family caregivers (or 54 15 percent) are caring for someone ages 18 to 74. 16 Forty-six percent of family caregivers are caring for 17 someone 75 or older. 18 (7) Adult day programs can offer services, in- 19 cluding medical care, rehabilitation therapies, dig- 20 nified assistance with the activities of daily living, 21 nutrition therapy, health monitoring, social inter- 22 action, stimulating activities, and transportation to 23 seniors, people with disabilities, and younger adults 24 with chronic diseases. 25 VerDate Sep 11 2014 01:00 Feb 05, 2021 Jkt 019200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H253.IH H253 kjohnson on DSK79L0C42PROD with BILLS 5 •HR 253 IH (8) Adult day programs geared toward people 1 living with neurological diseases or conditions such 2 as MS, Parkinson’s disease, TBI, or other similar 3 diseases or conditions provide an important response 4 to the needs of people living with these conditions 5 and their family caregivers. Adult day programs can 6 help to ameliorate symptoms, reduce dependency, 7 provide important socialization opportunities, and 8 maintain quality of life. 9 (9) Adult day programs have been shown to 10 provide a range of documented benefits including 11 improvements in functional status, social support, 12 and reductions in fatigue, depression and pain. 13 Adult day programs also reduce ongoing medical 14 care and hospital costs and decrease admissions to 15 nursing home facilities, which can be costly for many 16 families, by allowing individuals to receive health 17 and social services while continuing to live at home. 18 (10) There are currently few adult day pro- 19 grams focused on younger adult populations in the 20 United States. Although young people living with 21 neurological diseases or conditions may be able to 22 access existing adult day programs, such programs 23 are not typically intended for younger adults living 24 with chronic diseases or conditions, and may not 25 VerDate Sep 11 2014 01:00 Feb 05, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H253.IH H253 kjohnson on DSK79L0C42PROD with BILLS 6 •HR 253 IH provide the appropriate services to meet the age-re- 1 lated or disability status of these individuals. 2 SEC. 3. ESTABLISHMENT OF ADULT DAY PROGRAMS. 3 (a) SURVEY OF EXISTING ADULT DAY PROGRAMS.— 4 (1) IN GENERAL.—Not later than 90 days after 5 the date of the enactment of this section, the Assist- 6 ant Secretary for Aging shall initiate a comprehen- 7 sive survey of current adult day programs that pro- 8 vide care and support to individuals including young 9 adults living with neurological diseases or conditions 10 such as multiple sclerosis, Parkinson’s disease, trau- 11 matic brain injury, or any similar disease or condi- 12 tion. 13 (2) SURVEY ELEMENTS.—In carrying out the 14 survey under paragraph (1), the Assistant Secretary 15 for Aging may utilize existing publicly available re- 16 search on adult day programs, and shall— 17 (A) identify ongoing successful adult day 18 programs, including by providing a brief de- 19 scription of how such programs were initially 20 established and funded; 21 (B) identify which adult day programs are 22 serving young adults living with neurological 23 diseases or conditions; 24 VerDate Sep 11 2014 01:00 Feb 05, 2021 Jkt 019200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H253.IH H253 kjohnson on DSK79L0C42PROD with BILLS 7 •HR 253 IH (C) develop a set of best practices to help 1 guide the establishment and replication of addi- 2 tional successful adult day programs, includ- 3 ing— 4 (i) program guidelines; 5 (ii) recommendations on the scope of 6 services that should be provided to individ- 7 uals with neurological diseases or condi- 8 tions including young adults (which may 9 include rehabilitation therapy, psychosocial 10 support, social stimulation and interaction, 11 and spiritual, educational, or other such 12 services); and 13 (iii) performance goals and indicators 14 to measure and analyze the outcomes gen- 15 erated by the services provided and to 16 evaluate the overall success of the pro- 17 gram; and 18 (D) evaluate the extent to which the Ad- 19 ministration for Community Living supports 20 adult day programs, either directly or indi- 21 rectly, through current Federal grant programs. 22 (3) REPORT.—Not later than 180 days after 23 initiating the survey under paragraph (1), the As- 24 sistant Secretary for Aging shall produce and make 25 VerDate Sep 11 2014 01:00 Feb 05, 2021 Jkt 019200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H253.IH H253 kjohnson on DSK79L0C42PROD with BILLS 8 •HR 253 IH publicly available a summary report on the results of 1 the survey. Such report shall include each of the ele- 2 ments described in paragraph (2). 3 (b) ESTABLISHMENT OF GRANT PROGRAM.— 4 (1) IN GENERAL.—Not later than 90 days after 5 producing the report required by subsection (a)(3), 6 the Assistant Secretary for Aging shall establish 7 within the Administration for Community Living a 8 competitive grant program for awarding grants an- 9 nually to eligible entities, based on the best practices 10 developed under subsection (a), to fund adult day 11 programs serving younger people with neurological 12 diseases or conditions. 13 (2) ELIGIBLE ENTITIES.—In order to be eligi- 14 ble for a grant under this subsection, an entity shall 15 demonstrate the following: 16 (A) Understanding of the special needs of 17 younger people living with neurological diseases 18 or conditions such as multiple sclerosis, Parkin- 19 son’s disease, traumatic brain injury, or other 20 similar diseases or conditions, including their 21 functional abilities and the potential complica- 22 tions across all types of cases and stages of 23 such diseases or conditions. 24 VerDate Sep 11 2014 01:00 Feb 05, 2021 Jkt 019200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H253.IH H253 kjohnson on DSK79L0C42PROD with BILLS 9 •HR 253 IH (B) Understanding of the issues experi- 1 enced by family caregivers who assist a family 2 member with neurological diseases or conditions 3 such as multiple sclerosis, Parkinson’s disease, 4 traumatic brain injury, or other similar diseases 5 or conditions. 6 (C) A capacity to provide the services rec- 7 ommended by the best practices developed 8 under subsection (a). 9 (3) ADDITIONAL SELECTION REQUIREMENT.— 10 The Assistant Secretary for Aging shall not award 11 a grant to an entity under this subsection if the 12 amount of the award would constitute more than 40 13 percent of the operating budget of the entity in the 14 fiscal year for which funds for the grant are author- 15 ized to be expended. For purposes of this subsection, 16 the fair market value of annual in-kind contributions 17 of equipment or services shall be considered as part 18 of the operating budget of the entity. 19 (4) SELECTION OF GRANT RECIPIENTS.—Not 20 later than 90 days after establishing the grant pro- 21 gram under this subsection, the Assistant Secretary 22 for Aging shall award the first annual series of 23 grants under the program. In awarding grants under 24 this subsection, the Assistant Secretary should en- 25 VerDate Sep 11 2014 01:00 Feb 05, 2021 Jkt 019200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H253.IH H253 kjohnson on DSK79L0C42PROD with BILLS 10 •HR 253 IH sure, to the extent practicable, a diverse geographic 1 representation among grant recipients and that, sub- 2 ject to the availability of appropriations— 3 (A) a minimum of 5 entities are selected as 4 grant recipients for the first fiscal year for 5 which such grants are awarded; 6 (B) a minimum of 10 entities are selected 7 as grant recipients for the second such fiscal 8 year; 9 (C) a minimum of 12 entities are selected 10 as grant recipients for the third such fiscal 11 year; and 12 (D) a minimum of 15 entities are selected 13 as grant recipients for the fourth such fiscal 14 year. 15 (5) REPORT.—No later than 1 year after the 16 initial award of grants under this subsection, and 17 annually thereafter, the Assistant Secretary for 18 Aging shall produce and make publicly available a 19 brief summary report on the grant program under 20 this section. Each such report shall include the fol- 21 lowing: 22 (A) A description of the adult day pro- 23 grams receiving funding under this section, in- 24 VerDate Sep 11 2014 01:00 Feb 05, 2021 Jkt 019200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H253.IH H253 kjohnson on DSK79L0C42PROD with BILLS 11 •HR 253 IH cluding the amount of Federal funding awarded 1 and the expected outcomes of each program. 2 (B) A description of performance goals and 3 indicators to monitor the progress of grant re- 4 cipients in— 5 (i) responding to the needs of younger 6 individuals living with neurological diseases 7 or conditions such as multiple sclerosis, 8 Parkinson’s disease, traumatic brain in- 9 jury, or other similar diseases or condi- 10 tions; and 11 (ii) assisting the family caregivers of 12 such individuals. 13 (C) Any plans for improving oversight and 14 management of the grant program. 15 (c) DEFINITIONS.—In this Act: 16 (1) The term ‘‘adult day program’’ means a 17 program that provides comprehensive and effective 18 care and support services to individuals living with 19 neurological diseases or conditions such as multiple 20 sclerosis, Parkinson’s disease, traumatic brain in- 21 jury, or other similar diseases or conditions that 22 may result in a functional or degenerative disability 23 and to their family caregivers and that may assist 24 participants in ways that— 25 VerDate Sep 11 2014 01:00 Feb 05, 2021 Jkt 019200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\H253.IH H253 kjohnson on DSK79L0C42PROD with BILLS 12 •HR 253 IH (A) maintain or improve their functional 1 abilities, or otherwise help them adjust to their 2 changing functional abil [Text truncated for display. 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