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92_HB0016ham001 LRB9201018DJmbam02 1 AMENDMENT TO HOUSE BILL 16 2 AMENDMENT NO. . Amend House Bill 16 by replacing the 3 title with the following: 4 "AN ACT in relation to aging."; and 5 by replacing everything after the enacting clause with the 6 following: 7 "Section 1. Short title. This Act may be cited as the 8 Family Caregiver Act. 9 Section 5. Legislative findings. The General Assembly 10 recognizes the following: 11 (1) Family caregivers, serving without 12 compensation, have been the mainstay of the long-term 13 care system in this country. Care provided by these 14 informal caregivers is the most crucial factor in 15 avoiding or postponing institutionalization of the 16 State's residents. 17 (2) Among non-institutionalized persons needing 18 assistance with personal care needs, two-thirds depend 19 solely on family and friends for assistance. Another 25% 20 supplement family care with services from paid providers. 21 Only a little more than 5% rely exclusively on paid -2- LRB9201018DJmbam02 1 services. 2 (3) Family caregivers are frequently under 3 substantial physical, psychological, and financial 4 stress. Unrelieved by support services available to the 5 caregiver, this stress may lead to premature or 6 unnecessary institutionalization of the care recipient or 7 deterioration in the health condition and family 8 circumstances of the caregiver. 9 (4) Two out of 3 family caregivers, due to being 10 employed outside the home, experience additional stress. 11 Two-thirds of working caregivers report conflicts between 12 work and caregiving, requiring them to rearrange their 13 work schedules, work fewer than normal hours, or take an 14 unpaid leave of absence. For this population, caregiver 15 support services have the added benefit of allowing 16 family caregivers to remain active members of our State's 17 workforce. 18 Section 10. Legislative intent. It is the intent of the 19 General Assembly to establish a multi-faceted family 20 caregiver support program to assist unpaid family caregivers, 21 who are informal providers of in-home and community care to 22 frail individuals or children. 23 Services provided under this program shall do the 24 following: 25 (1) Provide information, relief, and support to 26 family and other unpaid caregivers of frail individuals. 27 (2) Encourage family members to provide care for 28 their family members who are frail individuals. 29 (3) Provide temporary substitute support services 30 or living arrangements to allow a period of relief or 31 rest for caregivers. 32 (4) Be provided in the least restrictive setting 33 available consistent with the individually assessed needs -3- LRB9201018DJmbam02 1 of the frail individual. 2 (5) Include services appropriate to the needs of 3 family members caring for the frail individual, including 4 a frail individual with dementia. 5 (6) Provide family caregivers with services that 6 enable them to make informed decisions about current and 7 future care plans, solve day-to-day caregiving problems, 8 learn essential care giving skills, and locate services 9 that may strengthen their capacity to provide care. 10 Section 15. Definitions. In this Act: 11 "Child" or "children" means an individual or individuals 12 18 years of age or under. 13 "Department" means the Department on Aging. 14 "Eligible participant" means a family caregiver or a 15 grandparent or older individual who is a relative caregiver. 16 "Family caregiver" means an adult family member, or 17 another individual, who is an informal provider of in-home 18 and community care to a frail individual. 19 "Family caregiver support services" includes, but is not 20 limited to, the following: 21 (1) Information to caregivers about available 22 services. 23 (2) Assistance to caregivers in gaining access to 24 the services. 25 (3) Individual counseling, organization of support 26 groups, and caregiver training for caregivers to assist 27 the caregivers in making decisions and solving problems 28 relating to their caregiving roles. 29 (4) Respite care provided to a frail individual 30 that will enable caregivers to be temporarily relieved 31 from their caregiving responsibilities. 32 (5) Supplemental services, on a limited basis, to 33 complement the care provided by the caregivers. -4- LRB9201018DJmbam02 1 (6) Other services as identified by the Department 2 and defined by rule. 3 "Frail individual" means an older individual who is 4 determined to be functionally impaired because the individual 5 (i) is unable to perform from at least 2 activities of daily 6 living without substantial human assistance, including verbal 7 reminding, physical cueing, or supervision or (ii) due to a 8 cognitive or other mental impairment, requires substantial 9 supervision because the individual behaves in a manner that 10 poses a serious health or safety hazard to the individual or 11 to another individual. 12 "Grandparent or older individual who is a relative 13 caregiver" means a grandparent or step-grandparent of a 14 child, or a relative of a child by blood or marriage, who is 15 60 years of age or older and who: 16 (1) lives with the child; 17 (2) is the caregiver for the child because the 18 child's biological or adoptive parents are unable or 19 unwilling to serve as the primary caregiver for the 20 child; and 21 (3) has a legal relationship to the child, such as 22 legal custody or guardianship, or is raising the child 23 informally. 24 "Informal provider" means an individual who is not 25 compensated for the care he or she provides. 26 "Older individual" means an individual who is 60 years of 27 age or older. 28 "Respite care" means substitute supports or living 29 arrangements provided on an intermittent, occasional basis. 30 The term includes, but is not limited to, in-home respite 31 care, adult day care, child care, and institutional care. The 32 term also includes respite care as defined in Section 2 of 33 the Respite Program Act to the extent that such services are 34 allowable and participants are eligible under the National -5- LRB9201018DJmbam02 1 Family Caregiver Support Program. 2 Section 20. Powers and duties of the Department. The 3 Department shall administer this Act and shall adopt rules 4 and standards the Department deems necessary for that 5 purpose. At a minimum, those rules and standards shall 6 address the following: 7 (1) Standards and mechanisms designed to ensure the 8 quality of services provided with assistance made 9 available under this Act. 10 (2) Data collection and record maintenance. 11 The Department shall administer this Act in coordination 12 with Section 4.02 and related provisions of the Illinois Act 13 on the Aging. 14 Section 25. Provision of services. The Department shall 15 contract with area agencies on aging and other appropriate 16 agencies to conduct family caregiver support services to the 17 extent of available State and federal funding. Services 18 provided under this Act must be provided according to the 19 requirements of federal law and rules. 20 Section 35. Health care practitioners and facilities not 21 impaired. Nothing in this Act shall impair the practice of 22 any licensed health care practitioner or licensed health care 23 facility. 24 Section 40. Entitlement not created; funding; waivers. 25 (a) Nothing in this Act creates or provides any 26 individual with an entitlement to services or benefits. It is 27 the General Assembly's intent that services under this Act 28 shall be made available only to the extent of the 29 availability and level of appropriations made by the General 30 Assembly. -6- LRB9201018DJmbam02 1 (b) The Director may seek and obtain State and federal 2 funds that may be available to finance services under this 3 Act, and may also seek and obtain other non-State resources 4 for which the State may be eligible. 5 (c) The Department may seek appropriate waivers of 6 federal requirements from the U.S. Department of Health and 7 Human Services. 8 Section 90. The Respite Program Act is amended by 9 changing Sections 1.5, 2, 3, 4, 5, 6, 7, 8, 11, and 12 as 10 follows: 11 (320 ILCS 10/1.5) (from Ch. 23, par. 6201.5) 12 Sec. 1.5. Purpose. It is hereby found and determined by 13 the General Assembly that respite care provides relief and 14 support to the primary care-giver of a frailor abusedor 15functionallydisabledor cognitively impaired olderadult and 16 providesby providinga break for the caregiver from the 17 continuous responsibilities of care-giving. Without this 18 support, the primary care-giver's ability to continue in his 19 or her role would be jeopardized; thereby increasing the risk 20 of institutionalization of the frailor abusedor 21functionallydisabledor cognitively impaired olderadult. 22 By providingimproving and expanding the in-homerespite 23 careservices currently availablethrough intermittent 24 planned or emergency relief to the care-giver during the 25 regular week-day, evening, and weekend hours, both the 26 special physical and psychological needs of the primary 27 care-giver and the frailor abusedorfunctionallydisabled,28or cognitively impaired olderadult, who is the recipient of 29 continuous care, shall be met reducing or preventing the need 30 for institutionalization. 31 Furthermore, the primary care-giver providing continuous 32 care is frequently under substantial financial stress. -7- LRB9201018DJmbam02 1 Respite care and other supportive services sustain and 2 preserve the primary care-giver and family caregiving unit. 3 It is the intent of the General Assembly that thisamendatory4 Actof 1992ensure that Illinois primary care-givers of frail 5or abusedorfunctionallydisabledor cognitively impaired6olderadults have access to affordable, appropriate in-home 7 respite care services. 8 (Source: P.A. 87-974.) 9 (320 ILCS 10/2) (from Ch. 23, par. 6202) 10 Sec. 2. Definitions. As used in this Act: 11 (1) "Respite care" means the provision of intermittent 12 and temporary substitute care or supervision of frailor13abusedorfunctionallydisabledor cognitively impaired older14 adults on behalf of and in the absence of the primary 15 care-giver, for the purpose of providing relief from the 16 stress or responsibilities concomitant with providing 17 constant care, so as to enable the care-giver to continue the 18 provision of care in the home. Respite care should be 19 available to sustain theprimarycare-giver throughout the 20 period of care-giving, which can vary from several months to 21 a number of years. Respite care can be provided in the home, 22 in acommunity basedday care setting during the day, 23 overnight, in a substitute residential setting such as a 24 long-term care facility required to be licensed under the 25 Nursing Home Care Act or the Assisted Living and Shared 26 Housing Act, or for more extended periods of time on a 27 temporary basis. 28 (1.5) "In-home respite care" means care provided by an 29 appropriately trained paid worker providing short-term 30 intermittent care, supervision, or companionship to the frail 31 or disabled adult in the home while relieving the care-giver, 32 by permitting a short-term break from the care-giver's 33 care-giving role. This support may contribute to the delay, -8- LRB9201018DJmbam02 1 reduction, and prevention of institutionalization by enabling 2 the care-giver to continue in his or her care-giving role. 3 In-home respite care should be flexible and available in a 4 manner that is responsive to the needs of the care-giver. 5 This may consist of evening respite care services that are 6 available from 6:00 p.m. to 8:00 a.m. Monday through Friday 7 and weekend respite care services from 6:00 p.m. Friday to 8 8:00 a.m. Monday. 9 (2) "Care-giver" shall mean the family member or other 10 natural person who normally provides the daily care or 11 supervision of a frail, abusedor disabledelderlyadult. 12 Such care-giver may, but need not, reside in the same 13 household as the frail or disabled adult. 14 (3) (Blank)."Provider" shall mean any entity enumerated15in paragraph (1) of this Section which is the supplier of16services providing respite.17 (4) (Blank)."Sponsor" shall mean the provider, public18agency or community group approved by the Director which19establishes a contractual relationship with the Department20for the purposes of providing services to persons under this21Act, and which is responsible for the recruitment of22providers, the coordination and arrangement of provider23services in a manner which meets client needs, the general24supervision of the local program, and the submission of such25information or reports as may be required by the Director.26 (5) (Blank)."Director" shall mean the Director on27Aging.28 (6) "Department" shall mean the Department on Aging. 29 (7) (Blank)."Abused" shall have the same meaning30ascribed to it in Section 103 of the Illinois Domestic31Violence Act of 1986.32 (8) "Frail or disabled adult" shall mean any person 33suffering from Alzheimer's disease andwho is 6055years of 34 age or older andor any adult 60 years of age or older,who -9- LRB9201018DJmbam02 1 either (i) suffers from Alzheimer's disease or a related 2 disorder or (ii) is unable to attend to his or her daily 3 needs without the assistance or regular supervision of a 4 care-giver due to mental or physical impairment and who is 5 otherwise eligible for services on the basis of his or her 6 level of impairment. 7 (9) "Emergency respite care" means the immediate 8 placement of a trained, in-home respite care worker in the 9 home during an emergency or unplanned event, or during a 10 temporary placement outside the home, to substitute for the 11primarycare-giver. Emergency respite care may be provided 12in the homeon one or more occasions unless an extension is 13 deemed necessary by the case coordination unit. When there 14 is an urgent need for emergency respite care, procedures to 15 accommodate this need must be determined. An emergency is: 16 (a) An unplanned event that results in the 17 immediate and unavoidable absence of theprimary18 care-giver from the home in an excess of 4 hours at a 19 time when no other qualified care-giver is available. 20 (b) An unplanned situation that prevents the 21primarycare-giver from providing the care required by a 22 frail orabused or functionallydisabledor cognitively23impairedadult living at home. 24 (c) An unplanned event that threatens the health 25 and safety of the frail or disabled adult. 26 (d) An unplanned event that threatens the health 27 and safety of theprimarycare-giver thereby placing the 28 frail orabused or functionallydisabledor cognitively29impaired olderadult in danger. 30 (10) (Blank)."Primary care-giver" means the spouse,31relative, or friend, 18 years of age or older, who provides32the daily in-home care and supervision of a frail or abused33or functionally disabled or cognitively impaired older adult.34A primary care-giver may, but does not need to, reside in the-10- LRB9201018DJmbam02 1same household as the frail or abused or functionally2disabled or cognitively impaired adult. A primary care-giver3requires intermittent relief from their caregiving duties to4continue to function as the primary care-giver.5 (Source: P.A. 91-357, eff. 7-29-99; revised 2-23-00.) 6 (320 ILCS 10/3) (from Ch. 23, par. 6203) 7 Sec. 3. Respite Program. The Director is hereby 8 authorized to administer a program ofestablish respite9projects for the purposes of providing care andassistance to 10 persons in need and to deter the institutionalization of 11 frail or disabledor functionally disabled or cognitively12impairedadults. 13 (Source: P.A. 87-974.) 14 (320 ILCS 10/4) (from Ch. 23, par. 6204) 15 Sec. 4. No Limit to Care. Nothing contained in this Act 16 shall be construed so as to limit, modify or otherwise affect 17 the provisions,forlong-termin-home services being provided 18 under, ofSection 4.02 of the Illinois Act on the Aging. 19 (Source: P.A. 87-974.) 20 (320 ILCS 10/5) (from Ch. 23, par. 6205) 21 Sec. 5. Eligibility. The Department may establish 22 eligibility standards for respite services taking into 23 consideration the unique economic and social needs of the 24 population for whom they are to be provided. The population 25 identified for the purposes of this Act includes persons 26 suffering from Alzheimer's disease or a related disorder and 27 persons who are 6055years of age or older, or persons age2860 and olderwith an identified service need. Priority shall 29 be given in all cases to frail, abusedorfunctionally30 disabledor cognitively impairedadults. 31 (Source: P.A. 87-974.) -11- LRB9201018DJmbam02 1 (320 ILCS 10/6) (from Ch. 23, par. 6206) 2 Sec. 6. Responsibilities.The following requirements3shall apply for any projects authorized under Section 3 of4this Act:5 (a) The DepartmentDirectorshall administer this Act 6 and shall adopt rules and standards the Department deems 7 necessary for that purposeestablish target areas needing8respite care services. 9 (b) The DepartmentDirectorshall make grants to or 10 contract with Area Agencies on Aging and other appropriate 11 community-based organizations to provide respite care under 12 this Actpublicize the existence of, and make available,13application forms for sponsors seeking to establish a respite14program. 15 (c) (Blank).The application forms shall require the16following information and any other information the Director17deems necessary.18(1) Identity and qualifications of a sponsor.19(2) Identity and qualifications of a provider and a20plan for the coordination of services.21(3) An assessment of the community need, support22and participation for respite services. The assessment23shall include documentation.24(4) Plans for the coordination and arrangement of25provider services in a manner that meets client needs.26(5) A fiscal plan, including specific provisions27for the utilization of existing reimbursement and funding28sources and the development of local financial support.29(6) Plans for publicizing the purpose of the30project and the services to be provided.31(7) Certification of licensure or certification of32any individual, agency or family providing a service33subject to licensure, or certification under State law.34 (d) (Blank).The Director shall review and evaluate each-12- LRB9201018DJmbam02 1application and present each application for review and2evaluation by the Council on Aging established under Section37 of the Illinois Act on the Aging. The Council and the4Department shall approve a number of applications and, within5the amounts appropriated, award grants for the operation of6respite programs.7 (e) (Blank).The application approved by the Director8and the Council on Aging shall be the service plan of the9provider. The Director shall ensure that each service plan10is coordinated with the designated area agency provided for11in Sections 3.07 and 3.08 of the Illinois Act on the Aging,12the local public health authority, and any other public or13private service provider to ensure that every effort will be14made to utilize existing funding sources and service15providers and to avoid unnecessary duplication of services.16 (f) Nothing in this Act shall be construed to limit, 17 modify, or otherwise affect the provision of long-term 18 in-home services under Section 4.02 of the Illinois Act on 19 the Aging. 20 (Source: P.A. 87-974.) 21 (320 ILCS 10/8) (from Ch. 23, par. 6208) 22 Sec. 8. Funding. ServicesRespite projectsauthorized 23 under this Act shall be funded only to the extent of 24 available appropriations for such purposes. The Director may 25shallseek and obtain State and federal funds that may be 26 available to finance respite caregrants awardedunder 27Section 6 ofthis Act, and mayshallalso seek and obtain 28 other non-state resources for which the State may be 29 eligible.Implementation of projects under this Act shall be30contingent upon the availability of federal financial31participation. To the extent necessary for implementation of32this Act,The Department mayshallseek appropriate waivers 33 of federal requirements from the U.S. Department of Health -13- LRB9201018DJmbam02 1 and Human Services. 2 (Source: P.A. 87-974.) 3 (320 ILCS 10/11) (from Ch. 23, par. 6211) 4 Sec. 11. Respite Care Worker Training. 5 (a) A respite care worker shall be an appropriately 6 trained individual whose duty it is to provide in-home 7 supervision and assistance to a frailor abusedor 8functionallydisabledor cognitively impaired olderadult in 9 order to allow theprimarycare-giver a break from his or her 10 continuous care-giving responsibilities. 11 (b) The Director may prescribe minimum training 12 guidelinesstandardsfor respite care workers to ensure that 13 the special needs of persons receiving services under this 14 Act and theirprimarycaregivers will be met. The Director 15 may designate Alzheimer's disease associations and community 16 agencies to conduct such training. Nothing in this Act 17 should be construed to exempt any individual providing a 18 service subject to licensure or certification under State law 19 from these requirements. 20 (Source: P.A. 87-974.) 21 (320 ILCS 10/12) (from Ch. 23, par. 6212) 22 Sec. 12. Annual Report. The Director shall submit a 23 report each year to the Governor and the General Assembly 24 detailing the progress of the respite care services provided 25programs establishedunder this Act.The report shall26include:27(a) a financial report for each program;28(b) a qualitative and quantitative profile of sponsors,29providers, care-givers and recipients participating in the30program;31(c) a comparative assessment of the costs and32effectiveness of each service or combination of services-14- LRB9201018DJmbam02 1provided;2(d) an assessment of the nature and extent of the demand3for services; and4(e) an evaluation of the success of programs receiving5grants for services.6 (Source: P.A. 87-974.) 7 (320 ILCS 10/7 rep.) 8 (320 ILCS 10/9 rep.) 9 (320 ILCS 10/10 rep.) 10 Section 91. The Respite Program Act is amended by 11 repealing Sections 7, 9, and 10. 12 Section 99. Effective date. This Act takes effect upon 13 becoming law.".