093_HB1196
LRB093 03979 DRJ 07470 b
1 AN ACT in relation to aging.
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 Family Caregiver Act.
6 Section 5. Legislative findings. The General Assembly
7 recognizes the following:
8 (1) Family caregivers, serving without
9 compensation, have been the mainstay of the long-term
10 care system in this country. Care provided by these
11 informal caregivers is the most crucial factor in
12 avoiding or postponing institutionalization of the
13 State's residents.
14 (2) Among non-institutionalized persons needing
15 assistance with personal care needs, two-thirds depend
16 solely on family and friends for assistance. Another 25%
17 supplement family care with services from paid providers.
18 Only a little more than 5% rely exclusively on paid
19 services.
20 (3) Family caregivers are frequently under
21 substantial physical, psychological, and financial
22 stress. Unrelieved by support services available to the
23 caregiver, this stress may lead to premature or
24 unnecessary institutionalization of the care recipient or
25 deterioration in the health condition and family
26 circumstances of the caregiver.
27 (4) Two out of 3 family caregivers, due to being
28 employed outside the home, experience additional stress.
29 Two-thirds of working caregivers report conflicts between
30 work and caregiving, requiring them to rearrange their
31 work schedules, work fewer than normal hours, or take an
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1 unpaid leave of absence. For this population, caregiver
2 support services have the added benefit of allowing
3 family caregivers to remain active members of our State's
4 workforce.
5 Section 10. Legislative intent. It is the intent of the
6 General Assembly to establish a multi-faceted family
7 caregiver support program to assist unpaid family caregivers,
8 who are informal providers of in-home and community care to
9 frail individuals or children.
10 Services provided under this program shall do the
11 following:
12 (1) Provide information, relief, and support to
13 family and other unpaid caregivers of frail individuals.
14 (2) Encourage family members to provide care for
15 their family members who are frail individuals.
16 (3) Provide temporary substitute support services
17 or living arrangements to allow a period of relief or
18 rest for caregivers.
19 (4) Be provided in the least restrictive setting
20 available consistent with the individually assessed needs
21 of the frail individual.
22 (5) Include services appropriate to the needs of
23 family members caring for the frail individual, including
24 a frail individual with dementia.
25 (6) Provide family caregivers with services that
26 enable them to make informed decisions about current and
27 future care plans, solve day-to-day caregiving problems,
28 learn essential care giving skills, and locate services
29 that may strengthen their capacity to provide care.
30 Section 15. Definitions. In this Act:
31 "Child" or "children" means an individual or individuals
32 18 years of age or under.
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1 "Department" means the Department on Aging.
2 "Eligible participant" means a family caregiver or a
3 grandparent or older individual who is a relative caregiver.
4 "Family caregiver" means an adult family member, or
5 another individual, who is an informal provider of in-home
6 and community care to a frail individual.
7 "Family caregiver support services" includes, but is not
8 limited to, the following:
9 (1) Information to caregivers about available
10 services.
11 (2) Assistance to caregivers in gaining access to
12 the services.
13 (3) Individual counseling, organization of support
14 groups, and caregiver training for caregivers to assist
15 the caregivers in making decisions and solving problems
16 relating to their caregiving roles.
17 (4) Respite care provided to a frail individual
18 that will enable caregivers to be temporarily relieved
19 from their caregiving responsibilities.
20 (5) Supplemental services, on a limited basis, to
21 complement the care provided by the caregivers.
22 (6) Other services as identified by the Department
23 and defined by rule.
24 "Frail individual" means an older individual who is
25 determined to be functionally impaired because the individual
26 (i) is unable to perform from at least 2 activities of daily
27 living without substantial human assistance, including verbal
28 reminding, physical cueing, or supervision or (ii) due to a
29 cognitive or other mental impairment, requires substantial
30 supervision because the individual behaves in a manner that
31 poses a serious health or safety hazard to the individual or
32 to another individual.
33 "Grandparent or older individual who is a relative
34 caregiver" means a grandparent or step-grandparent of a
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1 child, or a relative of a child by blood or marriage, who is
2 60 years of age or older and who:
3 (1) lives with the child;
4 (2) is the caregiver for the child because the
5 child's biological or adoptive parents are unable or
6 unwilling to serve as the primary caregiver for the
7 child; and
8 (3) has a legal relationship to the child, such as
9 legal custody or guardianship, or is raising the child
10 informally.
11 "Informal provider" means an individual who is not
12 compensated for the care he or she provides.
13 "Older individual" means an individual who is 60 years of
14 age or older.
15 "Respite care" means substitute supports or living
16 arrangements provided on an intermittent, occasional basis.
17 The term includes, but is not limited to, in-home respite
18 care, adult day care, child care, and institutional care. The
19 term also includes respite care as defined in Section 2 of
20 the Respite Program Act to the extent that such services are
21 allowable and participants are eligible under the National
22 Family Caregiver Support Program.
23 Section 16. Family caregiver demonstration grant. The
24 Department shall seek federal funding for the establishment
25 and assessment of a Family Caregiver Training and Support
26 Demonstration Project using residential facilities licensed
27 under the Nursing Home Care Act. The Department is
28 authorized to fund 2 sites, one in a rural community and one
29 in a more urban area. The Department shall adopt rules
30 governing participation and oversight of the program. The
31 Department shall seek technical assistance from the
32 Department of Public Aid. The Department shall advise the
33 Governor and the General Assembly regarding the effectiveness
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1 of the program within 6 months after the conclusion of the
2 demonstration period.
3 Section 20. Powers and duties of the Department. The
4 Department shall administer this Act and shall adopt rules
5 and standards the Department deems necessary for that
6 purpose. At a minimum, those rules and standards shall
7 address the following:
8 (1) Standards and mechanisms designed to ensure the
9 quality of services provided with assistance made
10 available under this Act.
11 (2) Data collection and record maintenance.
12 The Department shall administer this Act in coordination
13 with Section 4.02 and related provisions of the Illinois Act
14 on the Aging.
15 Section 25. Provision of services. The Department shall
16 contract with area agencies on aging and other appropriate
17 agencies to conduct family caregiver support services to the
18 extent of available State and federal funding. Services
19 provided under this Act must be provided according to the
20 requirements of federal law and rules.
21 Section 35. Health care practitioners and facilities not
22 impaired. Nothing in this Act shall impair the practice of
23 any licensed health care practitioner or licensed health care
24 facility.
25 Section 40. Entitlement not created; funding; waivers.
26 (a) Nothing in this Act creates or provides any
27 individual with an entitlement to services or benefits. It is
28 the General Assembly's intent that services under this Act
29 shall be made available only to the extent of the
30 availability and level of appropriations made by the General
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1 Assembly.
2 (b) The Director may seek and obtain State and federal
3 funds that may be available to finance services under this
4 Act, and may also seek and obtain other non-State resources
5 for which the State may be eligible.
6 (c) The Department may seek appropriate waivers of
7 federal requirements from the U.S. Department of Health and
8 Human Services.
9 Section 90. The Respite Program Act is amended by
10 changing Sections 1.5, 2, 3, 4, 5, 6, 8, 11, and 12 as
11 follows:
12 (320 ILCS 10/1.5) (from Ch. 23, par. 6201.5)
13 Sec. 1.5. Purpose. It is hereby found and determined by
14 the General Assembly that respite care provides relief and
15 support to the primary care-giver of a frail or abused or
16 functionally disabled or cognitively impaired older adult and
17 provides by providing a break for the caregiver from the
18 continuous responsibilities of care-giving. Without this
19 support, the primary care-giver's ability to continue in his
20 or her role would be jeopardized; thereby increasing the risk
21 of institutionalization of the frail or abused or
22 functionally disabled or cognitively impaired older adult.
23 By providing improving and expanding the in-home respite
24 care services currently available through intermittent
25 planned or emergency relief to the care-giver during the
26 regular week-day, evening, and weekend hours, both the
27 special physical and psychological needs of the primary
28 care-giver and the frail or abused or functionally disabled,
29 or cognitively impaired older adult, who is the recipient of
30 continuous care, shall be met reducing or preventing the need
31 for institutionalization.
32 Furthermore, the primary care-giver providing continuous
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1 care is frequently under substantial financial stress.
2 Respite care and other supportive services sustain and
3 preserve the primary care-giver and family caregiving unit.
4 It is the intent of the General Assembly that this amendatory
5 Act of 1992 ensure that Illinois primary care-givers of frail
6 or abused or functionally disabled or cognitively impaired
7 older adults have access to affordable, appropriate in-home
8 respite care services.
9 (Source: P.A. 87-974.)
10 (320 ILCS 10/2) (from Ch. 23, par. 6202)
11 Sec. 2. Definitions. As used in this Act:
12 (1) "Respite care" means the provision of intermittent
13 and temporary substitute care or supervision of frail or
14 abused or functionally disabled or cognitively impaired older
15 adults on behalf of and in the absence of the primary
16 care-giver, for the purpose of providing relief from the
17 stress or responsibilities concomitant with providing
18 constant care, so as to enable the care-giver to continue the
19 provision of care in the home. Respite care should be
20 available to sustain the primary care-giver throughout the
21 period of care-giving, which can vary from several months to
22 a number of years. Respite care can be provided in the home,
23 in a community based day care setting during the day,
24 overnight, in a substitute residential setting such as a
25 long-term care facility required to be licensed under the
26 Nursing Home Care Act or the Assisted Living and Shared
27 Housing Act, or for more extended periods of time on a
28 temporary basis.
29 (1.5) "In-home respite care" means care provided by an
30 appropriately trained paid worker providing short-term
31 intermittent care, supervision, or companionship to the frail
32 or disabled adult in the home while relieving the care-giver,
33 by permitting a short-term break from the care-giver's
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1 care-giving role. This support may contribute to the delay,
2 reduction, and prevention of institutionalization by enabling
3 the care-giver to continue in his or her care-giving role.
4 In-home respite care should be flexible and available in a
5 manner that is responsive to the needs of the care-giver.
6 This may consist of evening respite care services that are
7 available from 6:00 p.m. to 8:00 a.m. Monday through Friday
8 and weekend respite care services from 6:00 p.m. Friday to
9 8:00 a.m. Monday.
10 (2) "Care-giver" shall mean the family member or other
11 natural person who normally provides the daily care or
12 supervision of a frail, abused or disabled elderly adult.
13 Such care-giver may, but need not, reside in the same
14 household as the frail or disabled adult.
15 (3) (Blank). "Provider" shall mean any entity enumerated
16 in paragraph (1) of this Section which is the supplier of
17 services providing respite.
18 (4) (Blank). "Sponsor" shall mean the provider, public
19 agency or community group approved by the Director which
20 establishes a contractual relationship with the Department
21 for the purposes of providing services to persons under this
22 Act, and which is responsible for the recruitment of
23 providers, the coordination and arrangement of provider
24 services in a manner which meets client needs, the general
25 supervision of the local program, and the submission of such
26 information or reports as may be required by the Director.
27 (5) (Blank). "Director" shall mean the Director of
28 Aging.
29 (6) "Department" shall mean the Department on Aging.
30 (7) (Blank). "Abused" shall have the same meaning
31 ascribed to it in Section 103 of the Illinois Domestic
32 Violence Act of 1986.
33 (8) "Frail or disabled adult" shall mean any person
34 suffering from Alzheimer's disease who is 60 55 years of age
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1 or older and or any adult 60 years of age or older, who
2 either (i) suffers from Alzheimer's disease or a related
3 disorder or (ii) is unable to attend to his or her daily
4 needs without the assistance or regular supervision of a
5 care-giver due to mental or physical impairment and who is
6 otherwise eligible for services on the basis of his or her
7 level of impairment.
8 (9) "Emergency respite care" means the immediate
9 placement of a trained, in-home respite care worker in the
10 home during an emergency or unplanned event, or during a
11 temporary placement outside the home, to substitute for the
12 primary care-giver. Emergency respite care may be provided
13 in the home on one or more occasions unless an extension is
14 deemed necessary by the case coordination unit. When there
15 is an urgent need for emergency respite care, procedures to
16 accommodate this need must be determined. An emergency is:
17 (a) An unplanned event that results in the
18 immediate and unavoidable absence of the primary
19 care-giver from the home in an excess of 4 hours at a
20 time when no other qualified care-giver is available.
21 (b) An unplanned situation that prevents the
22 primary care-giver from providing the care required by a
23 frail or abused or functionally disabled or cognitively
24 impaired adult living at home.
25 (c) An unplanned event that threatens the health
26 and safety of the frail or disabled adult.
27 (d) An unplanned event that threatens the health
28 and safety of the primary care-giver thereby placing the
29 frail or abused or functionally disabled or cognitively
30 impaired older adult in danger.
31 (10) (Blank). "Primary care-giver" means the spouse,
32 relative, or friend, 18 years of age or older, who provides
33 the daily in-home care and supervision of a frail or abused
34 or functionally disabled or cognitively impaired older adult.
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1 A primary care-giver may, but does not need to, reside in the
2 same household as the frail or abused or functionally
3 disabled or cognitively impaired adult. A primary care-giver
4 requires intermittent relief from his or her caregiving
5 duties to continue to function as the primary care-giver.
6 (Source: P.A. 91-357, eff. 7-29-99; 92-16, eff. 6-28-01.)
7 (320 ILCS 10/3) (from Ch. 23, par. 6203)
8 Sec. 3. Respite Program. The Director is hereby
9 authorized to administer a program of establish respite
10 projects for the purposes of providing care and assistance to
11 persons in need and to deter the institutionalization of
12 frail or disabled or functionally disabled or cognitively
13 impaired adults.
14 (Source: P.A. 87-974.)
15 (320 ILCS 10/4) (from Ch. 23, par. 6204)
16 Sec. 4. No Limit to Care. Nothing contained in this Act
17 shall be construed so as to limit, modify or otherwise affect
18 the provisions, for long-term in-home services being provided
19 under, of Section 4.02 of the Illinois Act on the Aging.
20 (Source: P.A. 87-974.)
21 (320 ILCS 10/5) (from Ch. 23, par. 6205)
22 Sec. 5. Eligibility. The Department may establish
23 eligibility standards for respite services taking into
24 consideration the unique economic and social needs of the
25 population for whom they are to be provided. The population
26 identified for the purposes of this Act includes persons
27 suffering from Alzheimer's disease or a related disorder and
28 persons who are 60 55 years of age or older, or persons age
29 60 and older with an identified service need. Priority shall
30 be given in all cases to frail, abused or functionally
31 disabled or cognitively impaired adults.
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1 (Source: P.A. 87-974.)
2 (320 ILCS 10/6) (from Ch. 23, par. 6206)
3 Sec. 6. Responsibilities. The following requirements
4 shall apply for any projects authorized under Section 3 of
5 this Act:
6 (a) The Department Director shall administer this Act
7 and shall adopt rules and standards the Department deems
8 necessary for that purpose establish target areas needing
9 respite care services.
10 (b) The Department Director shall make grants to or
11 contract with Area Agencies on Aging and other appropriate
12 community-based organizations to provide respite care under
13 this Act publicize the existence of, and make available,
14 application forms for sponsors seeking to establish a respite
15 program.
16 (c) (Blank). The application forms shall require the
17 following information and any other information the Director
18 deems necessary.
19 (1) Identity and qualifications of a sponsor.
20 (2) Identity and qualifications of a provider and a
21 plan for the coordination of services.
22 (3) An assessment of the community need, support
23 and participation for respite services. The assessment
24 shall include documentation.
25 (4) Plans for the coordination and arrangement of
26 provider services in a manner that meets client needs.
27 (5) A fiscal plan, including specific provisions
28 for the utilization of existing reimbursement and funding
29 sources and the development of local financial support.
30 (6) Plans for publicizing the purpose of the
31 project and the services to be provided.
32 (7) Certification of licensure or certification of
33 any individual, agency or family providing a service
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1 subject to licensure, or certification under State law.
2 (d) (Blank). The Director shall review and evaluate each
3 application and present each application for review and
4 evaluation by the Council on Aging established under Section
5 7 of the Illinois Act on the Aging. The Council and the
6 Department shall approve a number of applications and, within
7 the amounts appropriated, award grants for the operation of
8 respite programs.
9 (e) (Blank). The application approved by the Director
10 and the Council on Aging shall be the service plan of the
11 provider. The Director shall ensure that each service plan
12 is coordinated with the designated area agency provided for
13 in Sections 3.07 and 3.08 of the Illinois Act on the Aging,
14 the local public health authority, and any other public or
15 private service provider to ensure that every effort will be
16 made to utilize existing funding sources and service
17 providers and to avoid unnecessary duplication of services.
18 (f) Nothing in this Act shall be construed to limit,
19 modify, or otherwise affect the provision of long-term
20 in-home services under Section 4.02 of the Illinois Act on
21 the Aging.
22 (Source: P.A. 87-974.)
23 (320 ILCS 10/8) (from Ch. 23, par. 6208)
24 Sec. 8. Funding. Services Respite projects authorized
25 under this Act shall be funded only to the extent of
26 available appropriations for such purposes. The Director may
27 shall seek and obtain State and federal funds that may be
28 available to finance respite care grants awarded under
29 Section 6 of this Act, and may shall also seek and obtain
30 other non-state resources for which the State may be
31 eligible. Implementation of projects under this Act shall be
32 contingent upon the availability of federal financial
33 participation. To the extent necessary for implementation of
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1 this Act, The Department may shall seek appropriate waivers
2 of federal requirements from the U.S. Department of Health
3 and Human Services.
4 (Source: P.A. 87-974.)
5 (320 ILCS 10/11) (from Ch. 23, par. 6211)
6 Sec. 11. Respite Care Worker Training.
7 (a) A respite care worker shall be an appropriately
8 trained individual whose duty it is to provide in-home
9 supervision and assistance to a frail or abused or
10 functionally disabled or cognitively impaired older adult in
11 order to allow the primary care-giver a break from his or her
12 continuous care-giving responsibilities.
13 (b) The Director may prescribe minimum training
14 guidelines standards for respite care workers to ensure that
15 the special needs of persons receiving services under this
16 Act and their primary caregivers will be met. The Director
17 may designate Alzheimer's disease associations and community
18 agencies to conduct such training. Nothing in this Act
19 should be construed to exempt any individual providing a
20 service subject to licensure or certification under State law
21 from these requirements.
22 (Source: P.A. 87-974.)
23 (320 ILCS 10/12) (from Ch. 23, par. 6212)
24 Sec. 12. Annual Report. The Director shall submit a
25 report each year to the Governor and the General Assembly
26 detailing the progress of the respite care services provided
27 programs established under this Act. The report shall
28 include:
29 (a) a financial report for each program;
30 (b) a qualitative and quantitative profile of sponsors,
31 providers, care-givers and recipients participating in the
32 program;
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1 (c) a comparative assessment of the costs and
2 effectiveness of each 10rvice or combination of services
3 provided;
4 (d) an assessment of the nature and extent of the demand
5 for services; and
6 (e) an evaluation of the success of programs receiving
7 grants for services.
8 (Source: P.A. 87-974.)
9 (320 ILCS 10/7 rep.)
10 (320 ILCS 10/9 rep.)
11 (320 ILCS 10/10 rep.)
12 Section 91. The Respite Program Act is amended by
13 repealing Sections 7, 9, and 10.
14 Section 99. Effective date. This Act takes effect upon
15 becoming law.