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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
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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
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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.
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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
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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.
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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 frail or abused or
15 functionally disabled or cognitively impaired older adult and
16 provides by providing a 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 frail or abused or
21 functionally disabled or cognitively impaired older adult.
22 By providing improving and expanding the in-home respite
23 care services currently available through 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 frail or abused or functionally disabled,
28 or cognitively impaired older adult, 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.
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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 this amendatory
4 Act of 1992 ensure that Illinois primary care-givers of frail
5 or abused or functionally disabled or cognitively impaired
6 older adults 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 frail or
13 abused or functionally disabled or cognitively impaired older
14 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 the primary care-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 a community based day 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,
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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, abused or disabled elderly adult.
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 enumerated
15 in paragraph (1) of this Section which is the supplier of
16 services providing respite.
17 (4) (Blank). "Sponsor" shall mean the provider, public
18 agency or community group approved by the Director which
19 establishes a contractual relationship with the Department
20 for the purposes of providing services to persons under this
21 Act, and which is responsible for the recruitment of
22 providers, the coordination and arrangement of provider
23 services in a manner which meets client needs, the general
24 supervision of the local program, and the submission of such
25 information or reports as may be required by the Director.
26 (5) (Blank). "Director" shall mean the Director on
27 Aging.
28 (6) "Department" shall mean the Department on Aging.
29 (7) (Blank). "Abused" shall have the same meaning
30 ascribed to it in Section 103 of the Illinois Domestic
31 Violence Act of 1986.
32 (8) "Frail or disabled adult" shall mean any person
33 suffering from Alzheimer's disease and who is 60 55 years of
34 age or older and or any adult 60 years of age or older, who
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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
11 primary care-giver. Emergency respite care may be provided
12 in the home on 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 the primary
18 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
21 primary care-giver from providing the care required by a
22 frail or abused or functionally disabled or cognitively
23 impaired adult 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 the primary care-giver thereby placing the
28 frail or abused or functionally disabled or cognitively
29 impaired older adult in danger.
30 (10) (Blank). "Primary care-giver" means the spouse,
31 relative, or friend, 18 years of age or older, who provides
32 the daily in-home care and supervision of a frail or abused
33 or functionally disabled or cognitively impaired older adult.
34 A primary care-giver may, but does not need to, reside in the
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1 same household as the frail or abused or functionally
2 disabled or cognitively impaired adult. A primary care-giver
3 requires intermittent relief from their caregiving duties to
4 continue 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 of establish respite
9 projects for the purposes of providing care and assistance to
10 persons in need and to deter the institutionalization of
11 frail or disabled or functionally disabled or cognitively
12 impaired adults.
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, for long-term in-home services being provided
18 under, of Section 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 60 55 years of age or older, or persons age
28 60 and older with an identified service need. Priority shall
29 be given in all cases to frail, abused or functionally
30 disabled or cognitively impaired adults.
31 (Source: P.A. 87-974.)
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1 (320 ILCS 10/6) (from Ch. 23, par. 6206)
2 Sec. 6. Responsibilities. The following requirements
3 shall apply for any projects authorized under Section 3 of
4 this Act:
5 (a) The Department Director shall administer this Act
6 and shall adopt rules and standards the Department deems
7 necessary for that purpose establish target areas needing
8 respite care services.
9 (b) The Department Director shall 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 Act publicize the existence of, and make available,
13 application forms for sponsors seeking to establish a respite
14 program.
15 (c) (Blank). The application forms shall require the
16 following information and any other information the Director
17 deems necessary.
18 (1) Identity and qualifications of a sponsor.
19 (2) Identity and qualifications of a provider and a
20 plan for the coordination of services.
21 (3) An assessment of the community need, support
22 and participation for respite services. The assessment
23 shall include documentation.
24 (4) Plans for the coordination and arrangement of
25 provider services in a manner that meets client needs.
26 (5) A fiscal plan, including specific provisions
27 for the utilization of existing reimbursement and funding
28 sources and the development of local financial support.
29 (6) Plans for publicizing the purpose of the
30 project and the services to be provided.
31 (7) Certification of licensure or certification of
32 any individual, agency or family providing a service
33 subject to licensure, or certification under State law.
34 (d) (Blank). The Director shall review and evaluate each
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1 application and present each application for review and
2 evaluation by the Council on Aging established under Section
3 7 of the Illinois Act on the Aging. The Council and the
4 Department shall approve a number of applications and, within
5 the amounts appropriated, award grants for the operation of
6 respite programs.
7 (e) (Blank). The application approved by the Director
8 and the Council on Aging shall be the service plan of the
9 provider. The Director shall ensure that each service plan
10 is coordinated with the designated area agency provided for
11 in Sections 3.07 and 3.08 of the Illinois Act on the Aging,
12 the local public health authority, and any other public or
13 private service provider to ensure that every effort will be
14 made to utilize existing funding sources and service
15 providers 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. Services Respite projects authorized
23 under this Act shall be funded only to the extent of
24 available appropriations for such purposes. The Director may
25 shall seek and obtain State and federal funds that may be
26 available to finance respite care grants awarded under
27 Section 6 of this Act, and may shall also seek and obtain
28 other non-state resources for which the State may be
29 eligible. Implementation of projects under this Act shall be
30 contingent upon the availability of federal financial
31 participation. To the extent necessary for implementation of
32 this Act, The Department may shall seek appropriate waivers
33 of federal requirements from the U.S. Department of Health
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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 frail or abused or
8 functionally disabled or cognitively impaired older adult in
9 order to allow the primary care-giver a break from his or her
10 continuous care-giving responsibilities.
11 (b) The Director may prescribe minimum training
12 guidelines standards for respite care workers to ensure that
13 the special needs of persons receiving services under this
14 Act and their primary caregivers 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
25 programs established under this Act. The report shall
26 include:
27 (a) a financial report for each program;
28 (b) a qualitative and quantitative profile of sponsors,
29 providers, care-givers and recipients participating in the
30 program;
31 (c) a comparative assessment of the costs and
32 effectiveness of each service or combination of services
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1 provided;
2 (d) an assessment of the nature and extent of the demand
3 for services; and
4 (e) an evaluation of the success of programs receiving
5 grants 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.".