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91_HB1940eng HB1940 Engrossed LRB9101476SMpc 1 AN ACT regarding respite care. 2 Be it enacted by the People of the State of Illinois, 3 represented in the General Assembly: 4 Section 1. Short title. This Act may be cited as the 5 Lifespan Respite Care Program Act. 6 Section 5. Legislative findings. The General Assembly 7 finds that: 8 (a) Supporting the efforts of families and caregivers to 9 care for individuals with special needs at home is efficient, 10 cost effective, and humane. Families receiving occasional 11 respite care relief are less likely to request admission of 12 an individual with special needs to nursing homes, foster 13 care, or other out-of-home care at public expense. 14 (b) Respite care reduces family and caregiver stress, 15 enhances family and caregiver coping ability, and strengthens 16 family ability to meet the challenging demands of caring for 17 individuals with special needs. 18 (c) Respite care reduces the risk of abuse and neglect 19 of children, senior citizens, and other vulnerable groups. 20 (d) Coordinated, noncategorical respite care services 21 must be available locally to provide reliable short-term 22 relief when it is needed by families and caregivers 23 regardless of where they live in Illinois. 24 Section 10. Definitions. As used in this Act: 25 "Caregiver" means an individual providing ongoing care 26 for an individual with special needs. 27 "Community lifespan respite care program" means a 28 noncategorical respite care program that: 29 (1) Is operated by community-based private 30 nonprofit, for-profit, or public agencies that provide HB1940 Engrossed -2- LRB9101476SMpc 1 respite care services; 2 (2) Receives funding through the Lifespan Respite 3 Care Program established under Section 15; 4 (3) Serves an area of one or more counties; 5 (4) Acts as a single local source of information 6 and referral; and 7 (5) Facilitates access to local respite care 8 services. 9 "Department" means the Department on Aging. 10 "Director" means the Director of Aging. 11 "Noncategorical care" means care without regard to the 12 status, including but not limited to age and type of special 13 need, of the individual receiving care. 14 "Provider" means an individual or agency selected by a 15 family or caregiver to provide respite care to an individual 16 with special needs. 17 "Respite care" means the provision of short-term relief 18 to primary caregivers from the demands of ongoing care for an 19 individual with special needs. 20 "Respite care services" includes: 21 (1) Recruiting and screening of paid and unpaid 22 respite care providers; 23 (2) Identifying local training resources and 24 organizing training opportunities for respite care 25 providers; 26 (3) Matching of families and caregivers with 27 providers and other types of respite care; 28 (4) Linking families and caregivers with payment 29 resources; 30 (5) Identifying, coordinating and developing 31 community resources for respite care; 32 (6) Quality assurance and evaluation; and 33 (7) Assisting families and caregivers to identify 34 respite care needs and resources. HB1940 Engrossed -3- LRB9101476SMpc 1 "Special needs" includes: 2 (1) Alzheimer's disease and related disorders; 3 (2) Developmental disabilities; 4 (3) Physical disabilities; 5 (4) Chronic illness; 6 (5) Mental and emotional conditions that require 7 supervision; 8 (6) Situations in which a high risk of abuse or 9 neglect exists; and 10 (7) Such other situations or conditions as the 11 Department may establish by rule. 12 Section 15. Lifespan Respite Care Program established; 13 duties. The Director shall establish the Lifespan Respite 14 Care Program to develop and encourage statewide coordination 15 of respite care and to work with community-based private 16 nonprofit, for-profit, or public agencies and interested 17 citizen groups in the establishment of community lifespan 18 respite care programs. The Lifespan Respite Care Program 19 shall: 20 (a) Provide policy and program development support, 21 including but not limited to data collection and outcome 22 measures; 23 (b) Identify and promote resolution of local and State 24 level policy concerns; 25 (c) Provide technical assistance to community lifespan 26 respite care programs; 27 (d) Develop and distribute respite care information; 28 (e) Promote the exchange of information and coordination 29 among State and local government, community lifespan respite 30 care programs, agencies serving individuals with special 31 needs, families, and respite care advocates to encourage 32 efficient provision of respite care and reduce duplication of 33 effort; HB1940 Engrossed -4- LRB9101476SMpc 1 (f) Ensure statewide access to community lifespan 2 respite care programs; and 3 (g) Monitor and evaluate implementation of community 4 lifespan respite care programs. 5 Section 20. Community programs; criteria; administrator 6 of program; advisory council. 7 (a) The Department through the Lifespan Respite Care 8 Program shall coordinate the establishment of community 9 lifespan respite care programs. The program shall accept 10 proposals to operate community lifespan respite care 11 programs, submitted in the form and manner required by the 12 program, from community-based private nonprofit, for-profit, 13 or public agencies that provide respite care services. 14 According to criteria established by the Department, the 15 Lifespan Respite Care Program shall designate and fund 16 agencies described in this Act to operate the community 17 respite care programs. 18 (b) The Director shall create the position of 19 administrator of the Lifespan Respite Care Program to carry 20 out the duties of the program. 21 (c) The Director shall appoint a committee to act as an 22 advisory council to the Lifespan Respite Care Program. The 23 committee shall be composed of respite care providers, 24 respite care program managers, respite care consumers, family 25 members, and other interested individuals. 26 (d) By no later than July 1, 2000, the Department shall 27 establish at least 12 community respite care programs in 28 Illinois. By no later than July 1, 2004, the Department 29 shall ensure that individuals in all Illinois counties have 30 access to respite care through community respite care 31 programs. 32 Section 25. Community program duties; advisory HB1940 Engrossed -5- LRB9101476SMpc 1 committee. Each community lifespan respite care program 2 established pursuant to Section 15 shall: 3 (a) Involve key local individuals and agencies in the 4 community lifespan respite care program planning process. 5 (b) Create an advisory committee composed of 15 members 6 to advise the community lifespan respite care program on how 7 the program may best serve the needs of families and 8 caregivers of individuals with special needs. At least 8 9 members of the advisory committee shall be family members and 10 caregivers of individuals with special needs. Other members 11 shall include respite care providers, representatives of 12 local service agencies, and other community representatives. 13 Committee membership shall represent senior citizens, 14 individuals with special needs, and families at risk of abuse 15 or neglect. 16 Section 30. Description of respite care services. 17 Respite care services made available through the Lifespan 18 Respite Care Program shall: 19 (a) Include a flexible array of respite care options 20 responsive to family and caregiver needs and available before 21 families and caregivers are in a crisis situation; 22 (b) Be sensitive to the unique needs, strengths, and 23 multicultural values of an individual, family, or caregiver; 24 (c) Offer the most efficient access to an array of 25 coordinated respite care services that are built on existing 26 community supports and services; 27 (d) Be driven by community strengths, needs, and 28 resources; and 29 (e) Use a variety of funds and resources, including but 30 not limited to: 31 (1) Family or caregiver funds; 32 (2) Private and volunteer resources; 33 (3) Public funds; and HB1940 Engrossed -6- LRB9101476SMpc 1 (4) Exchange of care among families or caregivers. 2 Section 35. Rulemaking. The Department shall adopt all 3 rules necessary for the operation and administration of the 4 Lifespan Respite Care Program, including but not limited to: 5 (a) Establishing criteria, procedures, and time lines 6 for designation of the community-based private nonprofit, 7 for-profit, or public agencies that will receive funding to 8 provide respite services under community lifespan respite 9 care programs; and 10 (b) Requiring that community lifespan respite care 11 programs publicize the telephone number and address where 12 families and caregivers may contact the program. 13 Section 40. Use of funds appropriated to program. The 14 Lifespan Respite Care Program may use the funds appropriated 15 to the program for the following purposes: 16 (a) The purposes established in Sections 15 and 20; 17 (b) Costs related to developing provider recruitment and 18 training, information and referral, outreach, and other 19 components of the provision of local respite care; 20 (c) One time only start-up costs related to the 21 establishment of the community lifespan respite care program; 22 and 23 (d) Minimum administrative costs for maintaining ongoing 24 program operation.