,i #aacth ,,congress #ast ,session ,h4 ,r4 #cbba ,,in ,,the ,,house ,,of ,,representatives ,september #cj1 #bjac,ms4 ,lee of ,california introduced the following bill2 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 7such as multiple sclerosis1 ,parkinson's disease1 traumatic brain injury1 or other similar diseases or conditions7 to support and improve access to respite services for family caregivers who are taking care of such people1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,adult ,day ,center ,enhancement ,act4 #b4 ,findings ,the ,congress finds the following3 7#a7 ,one in #f people in the ,united ,states lives with a neurological disease or condition that can often result in disability1 and which may require the individual to seek assistance in carrying out the activities of daily living4 ,neurological diseases or conditions such as multiple sclerosis 7,,ms71 early-onset ,parkinson's disease1 and traumatic brain injury 7,,tbi7 can also typically affect younger adults in the middle of their lives4 7#b7 ,multiple sclerosis is a chronic1 often disabling disease that attacks the central nervous system with symptoms ranging from numbness in limbs to paralysis and loss of vision4 ,most people with ,,ms are diagnosed between the ages of #bj and #ej years of age4 ,,ms is a leading cause of disability in young adults4 ,persons living with ,,ms who experience more severe forms of the disease are likely to require either home care or nursing home placement1 though the vast majority would prefer to remain at home to receive the care they need4 ,where home care is concerned1 approximately #hj percent of such care is provided by informal1 unpaid caregivers who are generally family members4 7#c7 ,parkinson's disease is a chronic1 progressive neurological disease4 ,the four primary symptoms of ,parkinson's disease are tremor1 or trembling in hands1 arms1 legs1 jaw1 and face2 rigidity1 or stiffness of the limbs and trunk2 bradykinesia1 or slowness of movement2 and postural instability1 or impaired balance and coordination4 ,other symptoms may include cognitive changes2 difficulty in swallowing1 chewing1 and speaking2 urinary problems or constipation2 skin problems2 and sleep disruptions4 ,as these symptoms become more pronounced1 patients may have difficulty walking1 talking1 or completing other simple tasks4 ,it is estimated that nearly #ejj1jjj to #a1ejj1jjj people live with ,parkinson's and of those #e to #aj percent are diagnosed younger than #fj and deemed early-onset4 7#d7 ,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 brain1 thereby temporarily or permanently disrupting normal brain function4 ,the ,centers for ,disease ,control and ,prevention estimates that #a1djj1jjj ,t,b,is occur annually1 resulting in disabilities affecting up to #ij1jjj people among a broad range of age groups4 ,traumatic brain injury is also a serious issue that affects military servicemembers4 ,estimates in prior military conflicts indicate that ,,tbi was present in #ad-bj percent of surviving casualties4 7#e7 ,family caregivers are a crucial source of support and assistance for individuals suffering with disabilities4 ,family caregivers1 the majority of whom are women1 provide an estimated #dej1jjj1jjj1jjj in free services annually4 ,the current pool of potential family caregivers is dwindling1 from #aa potential caregivers for each person needing care today to a projected #d to #a ratio by #bjej4 7#f7 ,recent studies indicate that the total estimated cost to employers for full-time employees with intensive caregiving responsibilities is #ag1ajj1jjj1jjj4 ,the total estimated cost to employers for all full-time1 employed caregivers is #cc1fjj1jjj1jjj annually4 7#g7 ,currently more than half of care recipients 7#ef percent7 are under age #ge1 and almost one-third 7#bh percent7 are under age #ej reflecting the need to offer age-appropriate services4 7#h7 ,adult day programs can offer services1 including medical care1 rehabilitation therapies1 dignified assistance with the activities of daily living1 nutrition therapy1 health monitoring1 social interaction1 stimulating activities1 and transportation to seniors1 people with disabilities1 and younger adults with chronic diseases4 7#i7 ,adult day programs geared toward people living with neurological diseases or conditions such as ,,ms1 ,parkinson's disease1 ,,tbi1 or other similar diseases or conditions provide an important response to the needs of people living with these conditions and their caregivers4 ,adult day programs can help to ameliorate symptoms1 reduce dependency1 provide important socialization opportunities1 and maintain quality of life4 7#aj7 ,adult day programs have been shown to provide a range of documented benefits including improvements in functional status1 social support1 and reductions in fatigue1 depression and pain4 ,adult day programs also reduce ongoing medical care and hospital costs and decrease admissions to nursing home facilities1 which can be costly for many families1 by allowing individuals to receive health and social services while continuing to live at home4 7#aa7 ,there are currently few adult day programs focused on younger adult populations in the ,united ,states4 ,although young people living with neurological diseases or conditions may be able to access existing adult day programs1 such programs are not typically intended for younger adults living with chronic diseases or conditions1 and may not provide the appropriate services to meet the age-related or disability status of these individuals4 #c4 ,establishment of adult day programs 7a7 ,survey of existing adult day programs 7#a7 ,in general ,not later than #ij days after the date of the enactment of this section1 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 sclerosis1 ,parkinson's disease1 traumatic brain injury1 or any similar disease or condition4 7#b7 ,survey elements ,in carrying out the survey under paragraph 7#a71 the ,assistant ,secretary for ,aging may utilize existing publicly available research on adult day programs1 and shall-- 7,a7 identify ongoing successful adult day programs1 including by providing a brief description of how such programs were initially established and funded2 7,b7 identify which adult day programs are serving young adults living with neurological diseases or conditions2 7,c7 develop a set of best practices to help guide the establishment and replication of additional successful adult day programs1 including-- 7i7 program guidelines2 7ii7 recommendations on the scope of services that should be provided to individuals with neurological diseases or conditions including young adults 7which may include rehabilitation therapy1 psychosocial support1 social stimulation and interaction1 and spiritual1 educational1 or other such services72 and 7iii7 performance goals and indicators to measure and analyze the outcomes generated by the services provided and to evaluate the overall success of the program2 and 7,d7 evaluate the extent to which the ,administration for ,community ,living supports adult day programs1 either directly or indirectly1 through current ,federal grant programs4 7#c7 ,report ,not later than #ahj days after initiating the survey under paragraph 7#a71 the ,assistant ,secretary for ,aging shall produce and make publicly available a summary report on the results of the survey4 ,such report shall include each of the elements described in paragraph 7#b74 7b7 ,establishment of grant program 7#a7 ,in general ,not later than #ij days after producing the report required by subsection 7a77#c71 the ,assistant ,secretary for ,aging shall establish within the ,administration for ,community ,living a competitive grant program for awarding grants annually to eligible entities1 based on the best practices developed under subsection 7a71 to fund adult day programs serving younger people with neurological diseases or conditions4 7#b7 ,eligible entities ,in order to be eligible for a grant under this subsection1 an entity shall demonstrate the following3 7,a7 ,understanding of the special needs of younger people living with neurological diseases or conditions such as multiple sclerosis1 ,parkinson's disease1 traumatic brain injury1 or other similar diseases or conditions1 including their functional abilities and the potential complications across all types of cases and stages of such diseases or conditions4 7,b7 ,understanding of the issues experienced by family caregivers who assist a family member with neurological diseases or conditions such as multiple sclerosis1 ,parkinson's disease1 traumatic brain injury1 or other similar diseases or conditions4 7,c7 ,a capacity to provide the services recommended by the best practices developed under subsection 7a74 7#c7 ,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 #dj percent of the operating budget of the entity in the fiscal year for which funds for the grant are authorized to be expended4 ,for purposes of this subsection1 the fair market value of annual in-kind contributions of equipment or services shall be considered as part of the operating budget of the entity4 7#d7 ,selection of grant recipients ,not later than #ij days after establishing the grant program under this subsection1 the ,assistant ,secretary for ,aging shall award the first annual series of grants under the program4 ,in awarding grants under this subsection1 the ,assistant ,secretary should ensure1 to the extent practicable1 a diverse geographic representation among grant recipients and that1 subject to the availability of appropriations-- 7,a7 a minimum of #e entities are selected as grant recipients for the first fiscal year for which such grants are awarded2 7,b7 a minimum of #aj entities are selected as grant recipients for the second such fiscal year2 7,c7 a minimum of #ab entities are selected as grant recipients for the third such fiscal year2 and 7,d7 a minimum of #ae entities are selected as grant recipients for the fourth such fiscal year4 7#e7 ,report ,no later than #a year after the initial award of grants under this subsection1 and annually thereafter1 the ,assistant ,secretary for ,aging shall produce and make publicly available a brief summary report on the grant program under this section4 ,each such report shall include the following3 7,a7 ,a description of the adult day programs receiving funding under this section1 including the amount of ,federal funding awarded and the expected outcomes of each program4 7,b7 ,a description of performance goals and indicators to monitor the progress of grant recipients in-- 7i7 responding to the needs of younger individuals living with neurological diseases or conditions such as multiple sclerosis1 ,parkinson's disease1 traumatic brain injury1 or other similar diseases or conditions2 and 7ii7 assisting the family caregivers of such individuals4 7,c7 ,any plans for improving oversight and management of the grant program4 7c7 ,definitions ,in this ,act3 7#a7 ,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 sclerosis1 ,parkinson's disease1 traumatic brain injury1 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-- 7,a7 maintain or improve their functional abilities1 or otherwise help them adjust to their changing functional abilities2 7,b7 prevent the onset of complications associated with severe forms of the disease or condition2 7,c7 promote alternatives to placement in nursing homes2 7,d7 reduce the strain on family caregivers taking care of a family member living with such diseases or conditions2 7,e7 focus on supporting the emotional1 social1 and intellectual needs of a younger adult population2 or 7,f7 address the needs of veterans living with such diseases or conditions4 7#b7 ,the term family caregiver means a family member or foster parent who provides unpaid assistance 7which may include in-home monitoring1 management1 supervision1 care and treatment1 or other similar assistance7 to another adult family member with a special need4 7d7 ,authorization of appropriations ,to carry out this section1 in addition to amounts otherwise made available for such purpose1 there are authorized to be appropriated1 and to remain available until expended1 the following3 7#a7 #a1jjj1jjj for fiscal year #bjad4 7#b7 #c1jjj1jjj for fiscal year #bjae4 7#c7 #f1jjj1jjj for fiscal year #bjaf4 7#d7 #h1jjj1jjj for fiscal year #bjag4 7#e7 #aj1jjj1jjj for fiscal year #bjah4