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92_SB2246
LRB9216125DJmb
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 20. Powers and duties of the Department. The
24 Department shall administer this Act and shall adopt rules
25 and standards the Department deems necessary for that
26 purpose. At a minimum, those rules and standards shall
27 address the following:
28 (1) Standards and mechanisms designed to ensure the
29 quality of services provided with assistance made
30 available under this Act.
31 (2) Data collection and record maintenance.
32 The Department shall administer this Act in coordination
33 with Section 4.02 and related provisions of the Illinois Act
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1 on the Aging.
2 Section 25. Provision of services. The Department shall
3 contract with area agencies on aging and other appropriate
4 agencies to conduct family caregiver support services to the
5 extent of available State and federal funding. Services
6 provided under this Act must be provided according to the
7 requirements of federal law and rules.
8 Section 35. Health care practitioners and facilities not
9 impaired. Nothing in this Act shall impair the practice of
10 any licensed health care practitioner or licensed health care
11 facility.
12 Section 40. Entitlement not created; funding; waivers.
13 (a) Nothing in this Act creates or provides any
14 individual with an entitlement to services or benefits. It is
15 the General Assembly's intent that services under this Act
16 shall be made available only to the extent of the
17 availability and level of appropriations made by the General
18 Assembly.
19 (b) The Director may seek and obtain State and federal
20 funds that may be available to finance services under this
21 Act, and may also seek and obtain other non-State resources
22 for which the State may be eligible.
23 (c) The Department may seek appropriate waivers of
24 federal requirements from the U.S. Department of Health and
25 Human Services.
26 Section 90. The Respite Program Act is amended by
27 changing Sections 1.5, 2, 3, 4, 5, 6, 8, 11, and 12 as
28 follows:
29 (320 ILCS 10/1.5) (from Ch. 23, par. 6201.5)
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1 Sec. 1.5. Purpose. It is hereby found and determined by
2 the General Assembly that respite care provides relief and
3 support to the primary care-giver of a frail or abused or
4 functionally disabled or cognitively impaired older adult and
5 provides by providing a break for the caregiver from the
6 continuous responsibilities of care-giving. Without this
7 support, the primary care-giver's ability to continue in his
8 or her role would be jeopardized; thereby increasing the risk
9 of institutionalization of the frail or abused or
10 functionally disabled or cognitively impaired older adult.
11 By providing improving and expanding the in-home respite
12 care services currently available through intermittent
13 planned or emergency relief to the care-giver during the
14 regular week-day, evening, and weekend hours, both the
15 special physical and psychological needs of the primary
16 care-giver and the frail or abused or functionally disabled,
17 or cognitively impaired older adult, who is the recipient of
18 continuous care, shall be met reducing or preventing the need
19 for institutionalization.
20 Furthermore, the primary care-giver providing continuous
21 care is frequently under substantial financial stress.
22 Respite care and other supportive services sustain and
23 preserve the primary care-giver and family caregiving unit.
24 It is the intent of the General Assembly that this amendatory
25 Act of 1992 ensure that Illinois primary care-givers of frail
26 or abused or functionally disabled or cognitively impaired
27 older adults have access to affordable, appropriate in-home
28 respite care services.
29 (Source: P.A. 87-974.)
30 (320 ILCS 10/2) (from Ch. 23, par. 6202)
31 Sec. 2. Definitions. As used in this Act:
32 (1) "Respite care" means the provision of intermittent
33 and temporary substitute care or supervision of frail or
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1 abused or functionally disabled or cognitively impaired older
2 adults on behalf of and in the absence of the primary
3 care-giver, for the purpose of providing relief from the
4 stress or responsibilities concomitant with providing
5 constant care, so as to enable the care-giver to continue the
6 provision of care in the home. Respite care should be
7 available to sustain the primary care-giver throughout the
8 period of care-giving, which can vary from several months to
9 a number of years. Respite care can be provided in the home,
10 in a community based day care setting during the day,
11 overnight, in a substitute residential setting such as a
12 long-term care facility required to be licensed under the
13 Nursing Home Care Act or the Assisted Living and Shared
14 Housing Act, or for more extended periods of time on a
15 temporary basis.
16 (1.5) "In-home respite care" means care provided by an
17 appropriately trained paid worker providing short-term
18 intermittent care, supervision, or companionship to the frail
19 or disabled adult in the home while relieving the care-giver,
20 by permitting a short-term break from the care-giver's
21 care-giving role. This support may contribute to the delay,
22 reduction, and prevention of institutionalization by enabling
23 the care-giver to continue in his or her care-giving role.
24 In-home respite care should be flexible and available in a
25 manner that is responsive to the needs of the care-giver.
26 This may consist of evening respite care services that are
27 available from 6:00 p.m. to 8:00 a.m. Monday through Friday
28 and weekend respite care services from 6:00 p.m. Friday to
29 8:00 a.m. Monday.
30 (2) "Care-giver" shall mean the family member or other
31 natural person who normally provides the daily care or
32 supervision of a frail, abused or disabled elderly adult.
33 Such care-giver may, but need not, reside in the same
34 household as the frail or disabled adult.
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1 (3) (Blank). "Provider" shall mean any entity enumerated
2 in paragraph (1) of this Section which is the supplier of
3 services providing respite.
4 (4) (Blank). "Sponsor" shall mean the provider, public
5 agency or community group approved by the Director which
6 establishes a contractual relationship with the Department
7 for the purposes of providing services to persons under this
8 Act, and which is responsible for the recruitment of
9 providers, the coordination and arrangement of provider
10 services in a manner which meets client needs, the general
11 supervision of the local program, and the submission of such
12 information or reports as may be required by the Director.
13 (5) (Blank). "Director" shall mean the Director of
14 Aging.
15 (6) "Department" shall mean the Department on Aging.
16 (7) (Blank). "Abused" shall have the same meaning
17 ascribed to it in Section 103 of the Illinois Domestic
18 Violence Act of 1986.
19 (8) "Frail or disabled adult" shall mean any person
20 suffering from Alzheimer's disease who is 60 55 years of age
21 or older and or any adult 60 years of age or older, who
22 either (i) suffers from Alzheimer's disease or a related
23 disorder or (ii) is unable to attend to his or her daily
24 needs without the assistance or regular supervision of a
25 care-giver due to mental or physical impairment and who is
26 otherwise eligible for services on the basis of his or her
27 level of impairment.
28 (9) "Emergency respite care" means the immediate
29 placement of a trained, in-home respite care worker in the
30 home during an emergency or unplanned event, or during a
31 temporary placement outside the home, to substitute for the
32 primary care-giver. Emergency respite care may be provided
33 in the home on one or more occasions unless an extension is
34 deemed necessary by the case coordination unit. When there
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1 is an urgent need for emergency respite care, procedures to
2 accommodate this need must be determined. An emergency is:
3 (a) An unplanned event that results in the
4 immediate and unavoidable absence of the primary
5 care-giver from the home in an excess of 4 hours at a
6 time when no other qualified care-giver is available.
7 (b) An unplanned situation that prevents the
8 primary care-giver from providing the care required by a
9 frail or abused or functionally disabled or cognitively
10 impaired adult living at home.
11 (c) An unplanned event that threatens the health
12 and safety of the frail or disabled adult.
13 (d) An unplanned event that threatens the health
14 and safety of the primary care-giver thereby placing the
15 frail or abused or functionally disabled or cognitively
16 impaired older adult in danger.
17 (10) (Blank). "Primary care-giver" means the spouse,
18 relative, or friend, 18 years of age or older, who provides
19 the daily in-home care and supervision of a frail or abused
20 or functionally disabled or cognitively impaired older adult.
21 A primary care-giver may, but does not need to, reside in the
22 same household as the frail or abused or functionally
23 disabled or cognitively impaired adult. A primary care-giver
24 requires intermittent relief from his or her caregiving
25 duties to continue to function as the primary care-giver.
26 (Source: P.A. 91-357, eff. 7-29-99; 92-16, eff. 6-28-01.)
27 (320 ILCS 10/3) (from Ch. 23, par. 6203)
28 Sec. 3. Respite Program. The Director is hereby
29 authorized to administer a program of establish respite
30 projects for the purposes of providing care and assistance to
31 persons in need and to deter the institutionalization of
32 frail or disabled or functionally disabled or cognitively
33 impaired adults.
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1 (Source: P.A. 87-974.)
2 (320 ILCS 10/4) (from Ch. 23, par. 6204)
3 Sec. 4. No Limit to Care. Nothing contained in this Act
4 shall be construed so as to limit, modify or otherwise affect
5 the provisions, for long-term in-home services being provided
6 under, of Section 4.02 of the Illinois Act on the Aging.
7 (Source: P.A. 87-974.)
8 (320 ILCS 10/5) (from Ch. 23, par. 6205)
9 Sec. 5. Eligibility. The Department may establish
10 eligibility standards for respite services taking into
11 consideration the unique economic and social needs of the
12 population for whom they are to be provided. The population
13 identified for the purposes of this Act includes persons
14 suffering from Alzheimer's disease or a related disorder and
15 persons who are 60 55 years of age or older, or persons age
16 60 and older with an identified service need. Priority shall
17 be given in all cases to frail, abused or functionally
18 disabled or cognitively impaired adults.
19 (Source: P.A. 87-974.)
20 (320 ILCS 10/6) (from Ch. 23, par. 6206)
21 Sec. 6. Responsibilities. The following requirements
22 shall apply for any projects authorized under Section 3 of
23 this Act:
24 (a) The Department Director shall administer this Act
25 and shall adopt rules and standards the Department deems
26 necessary for that purpose establish target areas needing
27 respite care services.
28 (b) The Department Director shall make grants to or
29 contract with Area Agencies on Aging and other appropriate
30 community-based organizations to provide respite care under
31 this Act publicize the existence of, and make available,
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1 application forms for sponsors seeking to establish a respite
2 program.
3 (c) (Blank). The application forms shall require the
4 following information and any other information the Director
5 deems necessary.
6 (1) Identity and qualifications of a sponsor.
7 (2) Identity and qualifications of a provider and a
8 plan for the coordination of services.
9 (3) An assessment of the community need, support
10 and participation for respite services. The assessment
11 shall include documentation.
12 (4) Plans for the coordination and arrangement of
13 provider services in a manner that meets client needs.
14 (5) A fiscal plan, including specific provisions
15 for the utilization of existing reimbursement and funding
16 sources and the development of local financial support.
17 (6) Plans for publicizing the purpose of the
18 project and the services to be provided.
19 (7) Certification of licensure or certification of
20 any individual, agency or family providing a service
21 subject to licensure, or certification under State law.
22 (d) (Blank). The Director shall review and evaluate each
23 application and present each application for review and
24 evaluation by the Council on Aging established under Section
25 7 of the Illinois Act on the Aging. The Council and the
26 Department shall approve a number of applications and, within
27 the amounts appropriated, award grants for the operation of
28 respite programs.
29 (e) (Blank). The application approved by the Director
30 and the Council on Aging shall be the service plan of the
31 provider. The Director shall ensure that each service plan
32 is coordinated with the designated area agency provided for
33 in Sections 3.07 and 3.08 of the Illinois Act on the Aging,
34 the local public health authority, and any other public or
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1 private service provider to ensure that every effort will be
2 made to utilize existing funding sources and service
3 providers and to avoid unnecessary duplication of services.
4 (f) Nothing in this Act shall be construed to limit,
5 modify, or otherwise affect the provision of long-term
6 in-home services under Section 4.02 of the Illinois Act on
7 the Aging.
8 (Source: P.A. 87-974.)
9 (320 ILCS 10/8) (from Ch. 23, par. 6208)
10 Sec. 8. Funding. Services Respite projects authorized
11 under this Act shall be funded only to the extent of
12 available appropriations for such purposes. The Director may
13 shall seek and obtain State and federal funds that may be
14 available to finance respite care grants awarded under
15 Section 6 of this Act, and may shall also seek and obtain
16 other non-state resources for which the State may be
17 eligible. Implementation of projects under this Act shall be
18 contingent upon the availability of federal financial
19 participation. To the extent necessary for implementation of
20 this Act, The Department may shall seek appropriate waivers
21 of federal requirements from the U.S. Department of Health
22 and Human Services.
23 (Source: P.A. 87-974.)
24 (320 ILCS 10/11) (from Ch. 23, par. 6211)
25 Sec. 11. Respite Care Worker Training.
26 (a) A respite care worker shall be an appropriately
27 trained individual whose duty it is to provide in-home
28 supervision and assistance to a frail or abused or
29 functionally disabled or cognitively impaired older adult in
30 order to allow the primary care-giver a break from his or her
31 continuous care-giving responsibilities.
32 (b) The Director may prescribe minimum training
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1 guidelines standards for respite care workers to ensure that
2 the special needs of persons receiving services under this
3 Act and their primary caregivers will be met. The Director
4 may designate Alzheimer's disease associations and community
5 agencies to conduct such training. Nothing in this Act
6 should be construed to exempt any individual providing a
7 service subject to licensure or certification under State law
8 from these requirements.
9 (Source: P.A. 87-974.)
10 (320 ILCS 10/12) (from Ch. 23, par. 6212)
11 Sec. 12. Annual Report. The Director shall submit a
12 report each year to the Governor and the General Assembly
13 detailing the progress of the respite care services provided
14 programs established under this Act. The report shall
15 include:
16 (a) a financial report for each program;
17 (b) a qualitative and quantitative profile of sponsors,
18 providers, care-givers and recipients participating in the
19 program;
20 (c) a comparative assessment of the costs and
21 effectiveness of each service or combination of services
22 provided;
23 (d) an assessment of the nature and extent of the demand
24 for services; and
25 (e) an evaluation of the success of programs receiving
26 grants for services.
27 (Source: P.A. 87-974.)
28 (320 ILCS 10/7 rep.)
29 (320 ILCS 10/9 rep.)
30 (320 ILCS 10/10 rep.)
31 Section 91. The Respite Program Act is amended by
32 repealing Sections 7, 9, and 10.
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1 Section 99. Effective date. This Act takes effect upon
2 becoming law.