93RD GENERAL ASSEMBLY
State of Illinois
2003 and 2004
HB6706

 

Introduced 2/9/2004, by Rep. Sidney H. Mathias - Patricia Reid Lindner - James H. Meyer

 

SYNOPSIS AS INTRODUCED:
 
New Act
320 ILCS 10/1.5   from Ch. 23, par. 6201.5
320 ILCS 10/2   from Ch. 23, par. 6202
320 ILCS 10/3   from Ch. 23, par. 6203
320 ILCS 10/4   from Ch. 23, par. 6204
320 ILCS 10/5   from Ch. 23, par. 6205
320 ILCS 10/6   from Ch. 23, par. 6206
320 ILCS 10/8   from Ch. 23, par. 6208
320 ILCS 10/11   from Ch. 23, par. 6211
320 ILCS 10/12   from Ch. 23, par. 6212
320 ILCS 10/7 rep.
320 ILCS 10/9 rep.
320 ILCS 10/10 rep.

    Creates the Family Caregiver Act, to be administered by the Department on Aging, for the purpose of encouraging family members to provide care for their elderly family members. Requires the Department to contract with area agencies on aging and other appropriate agencies to provide family caregiver support services to the extent of available funding. Provides that the services include counseling, training, and respite care. Requires the Department to seek federal funding for a demonstration project. Also authorizes caregiver support services for grandparents who are primary caregivers for their grandchildren. Amends the Respite Program Act. Deletes references to abused adults and to functionally disabled or cognitively impaired adults (so that the Act applies to "frail or disabled" adults). Defines a "frail or disabled adult" as a person age 60 (instead of 55) or older and who either (i) suffers from Alzheimer's disease or a related disorder or (ii) is unable to attend to his or her daily needs without assistance or regular supervision. Deletes references to the Council on Aging. Makes other changes. Effective July 1, 2004.


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FISCAL NOTE ACT MAY APPLY

 

 

A BILL FOR

 

HB6706 LRB093 18060 DRJ 43747 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 compensation,
9     have been the mainstay of the long-term care system in this
10     country. Care provided by these informal caregivers is the
11     most crucial factor in avoiding or postponing
12     institutionalization of the State's residents.
13         (2) Among non-institutionalized persons needing
14     assistance with personal care needs, two-thirds depend
15     solely on family and friends for assistance. Another 25%
16     supplement family care with services from paid providers.
17     Only a little more than 5% rely exclusively on paid
18     services.
19         (3) Family caregivers are frequently under substantial
20     physical, psychological, and financial stress. Unrelieved
21     by support services available to the caregiver, this stress
22     may lead to premature or unnecessary institutionalization
23     of the care recipient or deterioration in the health
24     condition and family circumstances of the caregiver.
25         (4) Two out of 3 family caregivers, due to being
26     employed outside the home, experience additional stress.
27     Two-thirds of working caregivers report conflicts between
28     work and caregiving, requiring them to rearrange their work
29     schedules, work fewer than normal hours, or take an unpaid
30     leave of absence. For this population, caregiver support
31     services have the added benefit of allowing family
32     caregivers to remain active members of our State's

 

 

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1     workforce.
 
2     Section 10. Legislative intent. It is the intent of the
3 General Assembly to establish a multi-faceted family caregiver
4 support program to assist unpaid family caregivers and
5 grandparents or other older individuals who are relative
6 caregivers, who are informal providers of in-home and community
7 care to older individuals or children.
8     Services provided under this program shall do the
9 following:
10         (1) Provide information, relief, and support to family
11     and other unpaid caregivers of older individuals and
12     children.
13         (2) Encourage family members to provide care for their
14     family members who are older individuals and children.
15         (3) Provide temporary substitute support services or
16     living arrangements to allow a period of relief or rest for
17     caregivers.
18         (4) Be provided in the least restrictive setting
19     available consistent with the individually assessed needs
20     of older individuals and children.
21         (5) Include services appropriate to the needs of family
22     members caring for older individuals and children,
23     including older individuals with dementia.
24         (6) Provide family caregivers with services that
25     enable them to make informed decisions about current and
26     future care plans, solve day-to-day caregiving problems,
27     learn essential care giving skills, and locate services
28     that may strengthen their capacity to provide care.
 
29     Section 15. Definitions. In this Act:
30     "Caregiver" or "family caregiver" means an adult family
31 member, or another individual, who is an informal provider of
32 in-home and community care to an older individual, or a
33 grandparent or older individual who is a relative caregiver.
34     "Child" or "children" means an individual or individuals 18

 

 

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1 years of age or under.
2     "Department" means the Department on Aging.
3     "Eligible participant" means a family caregiver or a
4 grandparent or older individual who is a relative caregiver.
5     "Family caregiver support services" includes, but is not
6 limited to, the following:
7         (1) Information to caregivers about available
8     services.
9         (2) Assistance to caregivers in gaining access to the
10     services.
11         (3) Individual counseling, organization of support
12     groups, and caregiver training for caregivers to assist the
13     caregivers in making decisions and solving problems
14     relating to their caregiving roles.
15         (4) Respite care to enable caregivers to be temporarily
16     relieved from their caregiving responsibilities.
17         (5) Supplemental services, on a limited basis, to
18     complement the care provided by the caregivers.
19         (6) Other services as identified by the Department and
20     defined by rule.
21     "Frail individual" means an older individual who is
22 determined to be functionally impaired because the individual
23 (i) is unable to perform from at least 2 activities of daily
24 living without substantial human assistance, including verbal
25 reminding, physical cueing, or supervision or (ii) due to a
26 cognitive or other mental impairment, requires substantial
27 supervision because the individual behaves in a manner that
28 poses a serious health or safety hazard to the individual or to
29 another individual.
30     "Grandparent or older individual who is a relative
31 caregiver" means a grandparent or step-grandparent of a child,
32 or a relative of a child by blood or marriage, who:
33         (1) lives with the child;
34         (2) is the primary caregiver for the child because the
35     child's biological or adoptive parents are unable or
36     unwilling to serve as the primary caregiver for the child;

 

 

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1     and
2         (3) has a legal relationship to the child, such as
3     legal custody or guardianship, or is raising the child
4     informally.
5     "Informal provider" means an individual who is not
6 compensated for the care he or she provides.
7     "Older individual" means an individual who is 60 years of
8 age or older, except for a grandparent or older individual who
9 is a relative caregiver.
10     "Respite care" means substitute supports or living
11 arrangements provided on an intermittent, occasional basis.
12 The term includes, but is not limited to, in-home respite care,
13 adult day care, child care, and institutional care. The term
14 also includes respite care as defined in Section 2 of the
15 Respite Program Act to the extent that such services are
16 allowable and participants are eligible under the National
17 Family Caregiver Support Program.
 
18     Section 16. Family caregiver demonstration grant. The
19 Department shall seek federal funding for the establishment and
20 assessment of a Family Caregiver Training and Support
21 Demonstration Project. The Department is authorized to fund 2
22 sites, one in a rural community and one in a more urban area.
23 The Department shall adopt rules governing participation and
24 oversight of the program. The Department shall seek technical
25 assistance from the Department of Public Aid and the Department
26 of Human Services. The Department shall advise the Governor and
27 the General Assembly regarding the effectiveness of the program
28 within 6 months after the conclusion of the demonstration
29 period.
 
30     Section 20. Powers and duties of the Department. The
31 Department shall administer this Act and shall adopt rules and
32 standards the Department deems necessary for that purpose. At a
33 minimum, those rules and standards shall address the following:
34         (1) Standards and mechanisms designed to ensure the

 

 

HB6706 - 5 - LRB093 18060 DRJ 43747 b

1     quality of services provided with assistance made
2     available under this Act.
3         (2) Data collection and record maintenance.
4     The Department shall administer this Act in coordination
5 with Section 4.02 and related provisions of the Illinois Act on
6 the Aging.
 
7     Section 25. Provision of services. The Department shall
8 contract with area agencies on aging and other appropriate
9 agencies to conduct family caregiver support services to the
10 extent of available State and federal funding. Services
11 provided under this Act must be provided according to the
12 requirements of federal law and rules, except for the provision
13 of services to grandparents or older individuals who are
14 relative caregivers when State funding is utilized to provide
15 those services.
 
16     Section 30. Eligibility for respite and supplemental
17 services. When a family caregiver is providing in-home and
18 community care to an older individual, the older individual
19 must be a frail individual as defined in this Act in order for
20 the family caregiver to be eligible to receive respite and
21 supplemental services.
 
22     Section 35. Health care practitioners and facilities not
23 impaired. Nothing in this Act shall impair the practice of any
24 licensed health care practitioner or licensed health care
25 facility.
 
26     Section 40. Entitlement not created; funding; waivers.
27     (a) Nothing in this Act creates or provides any individual
28 with an entitlement to services or benefits. It is the General
29 Assembly's intent that services under this Act shall be made
30 available only to the extent of the availability and level of
31 appropriations made by the General Assembly.
32     (b) The Director may seek and obtain State and federal

 

 

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1 funds that may be available to finance services under this Act,
2 and may also seek and obtain other non-State resources for
3 which the State may be eligible.
4     (c) The Department may seek appropriate waivers of federal
5 requirements from the U.S. Department of Health and Human
6 Services.
 
7     Section 90. The Respite Program Act is amended by changing
8 Sections 1.5, 2, 3, 4, 5, 6, 8, 11, and 12 as follows:
 
9     (320 ILCS 10/1.5)  (from Ch. 23, par. 6201.5)
10     Sec. 1.5. Purpose. It is hereby found and determined by
11 the General Assembly that respite care provides relief and
12 support to the primary care-giver of a frail or abused or
13 functionally disabled or cognitively impaired older adult and
14 provides by providing a break for the caregiver from the
15 continuous responsibilities of care-giving. Without this
16 support, the primary care-giver's ability to continue in his or
17 her role would be jeopardized; thereby increasing the risk of
18 institutionalization of the frail or abused or functionally
19 disabled or cognitively impaired older adult.
20     By providing improving and expanding the in-home respite
21 care services currently available through intermittent planned
22 or emergency relief to the care-giver during the regular
23 week-day, evening, and weekend hours, both the special physical
24 and psychological needs of the primary care-giver and the frail
25 or abused or functionally disabled, or cognitively impaired
26 older adult, who is the recipient of continuous care, shall be
27 met reducing or preventing the need for institutionalization.
28     Furthermore, the primary care-giver providing continuous
29 care is frequently under substantial financial stress. Respite
30 care and other supportive services sustain and preserve the
31 primary care-giver and family caregiving unit. It is the intent
32 of the General Assembly that this amendatory Act of 1992 ensure
33 that Illinois primary care-givers of frail or abused or
34 functionally disabled or cognitively impaired older adults

 

 

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1 have access to affordable, appropriate in-home respite care
2 services.
3 (Source: P.A. 87-974.)
 
4     (320 ILCS 10/2)  (from Ch. 23, par. 6202)
5     Sec. 2. Definitions. As used in this Act:
6     (1) "Respite care" means the provision of intermittent and
7 temporary substitute care or supervision of frail or abused or
8 functionally disabled or cognitively impaired older adults on
9 behalf of and in the absence of the primary care-giver, for the
10 purpose of providing relief from the stress or responsibilities
11 concomitant with providing constant care, so as to enable the
12 care-giver to continue the provision of care in the home.
13 Respite care should be available to sustain the primary
14 care-giver throughout the period of care-giving, which can vary
15 from several months to a number of years. Respite care can be
16 provided in the home, in a community based day care setting
17 during the day, overnight, in a substitute residential setting
18 such as a long-term care facility required to be licensed under
19 the Nursing Home Care Act or the Assisted Living and Shared
20 Housing Act, or for more extended periods of time on a
21 temporary basis.
22     (1.5) "In-home respite care" means care provided by an
23 appropriately trained paid worker providing short-term
24 intermittent care, supervision, or companionship to the frail
25 or disabled adult in the home while relieving the care-giver,
26 by permitting a short-term break from the care-giver's
27 care-giving role. This support may contribute to the delay,
28 reduction, and prevention of institutionalization by enabling
29 the care-giver to continue in his or her care-giving role.
30 In-home respite care should be flexible and available in a
31 manner that is responsive to the needs of the care-giver. This
32 may consist of evening respite care services that are available
33 from 6:00 p.m. to 8:00 a.m. Monday through Friday and weekend
34 respite care services from 6:00 p.m. Friday to 8:00 a.m.
35 Monday.

 

 

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1     (2) "Care-giver" shall mean the family member or other
2 natural person who normally provides the daily care or
3 supervision of a frail, abused or disabled elderly adult. Such
4 care-giver may, but need not, reside in the same household as
5 the frail or disabled adult.
6     (3) (Blank). "Provider" shall mean any entity enumerated in
7 paragraph (1) of this Section which is the supplier of services
8 providing respite.
9     (4) (Blank). "Sponsor" shall mean the provider, public
10 agency or community group approved by the Director which
11 establishes a contractual relationship with the Department for
12 the purposes of providing services to persons under this Act,
13 and which is responsible for the recruitment of providers, the
14 coordination and arrangement of provider services in a manner
15 which meets client needs, the general supervision of the local
16 program, and the submission of such information or reports as
17 may be required by the Director.
18     (5) (Blank). "Director" shall mean the Director of Aging.
19     (6) "Department" shall mean the Department on Aging.
20     (7) (Blank). "Abused" shall have the same meaning ascribed
21 to it in Section 103 of the Illinois Domestic Violence Act of
22 1986.
23     (8) "Frail or disabled adult" shall mean any person
24 suffering from Alzheimer's disease who is 60 55 years of age or
25 older and or any adult 60 years of age or older, who either (i)
26 suffers from Alzheimer's disease or a related disorder or (ii)
27 is unable to attend to his or her daily needs without the
28 assistance or regular supervision of a care-giver due to mental
29 or physical impairment and who is otherwise eligible for
30 services on the basis of his or her level of impairment.
31     (9) "Emergency respite care" means the immediate placement
32 of a trained, in-home respite care worker in the home during an
33 emergency or unplanned event, or during a temporary placement
34 outside the home, to substitute for the primary care-giver.
35 Emergency respite care may be provided in the home on one or
36 more occasions unless an extension is deemed necessary by the

 

 

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1 case coordination unit. When there is an urgent need for
2 emergency respite care, procedures to accommodate this need
3 must be determined. An emergency is:
4         (a) An unplanned event that results in the immediate
5     and unavoidable absence of the primary care-giver from the
6     home in an excess of 4 hours at a time when no other
7     qualified care-giver is available.
8         (b) An unplanned situation that prevents the primary
9     care-giver from providing the care required by a frail or
10     abused or functionally disabled or cognitively impaired
11     adult living at home.
12         (c) An unplanned event that threatens the health and
13     safety of the frail or disabled adult.
14         (d) An unplanned event that threatens the health and
15     safety of the primary care-giver thereby placing the frail
16     or abused or functionally disabled or cognitively impaired
17     older adult in danger.
18     (10) (Blank). "Primary care-giver" means the spouse,
19 relative, or friend, 18 years of age or older, who provides the
20 daily in-home care and supervision of a frail or abused or
21 functionally disabled or cognitively impaired older adult. A
22 primary care-giver may, but does not need to, reside in the
23 same household as the frail or abused or functionally disabled
24 or cognitively impaired adult. A primary care-giver requires
25 intermittent relief from his or her caregiving duties to
26 continue to function as the primary care-giver.
27 (Source: P.A. 91-357, eff. 7-29-99; 92-16, eff. 6-28-01.)
 
28     (320 ILCS 10/3)  (from Ch. 23, par. 6203)
29     Sec. 3. Respite Program. The Director is hereby authorized
30 to administer a program of establish respite projects for the
31 purposes of providing care and assistance to persons in need
32 and to deter the institutionalization of frail or disabled or
33 functionally disabled or cognitively impaired adults.
34 (Source: P.A. 87-974.)
 

 

 

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1     (320 ILCS 10/4)  (from Ch. 23, par. 6204)
2     Sec. 4. No Limit to Care. Nothing contained in this Act
3 shall be construed so as to limit, modify or otherwise affect
4 the provisions, for long-term in-home services being provided
5 under , of Section 4.02 of the Illinois Act on the Aging.
6 (Source: P.A. 87-974.)
 
7     (320 ILCS 10/5)  (from Ch. 23, par. 6205)
8     Sec. 5. Eligibility. The Department may establish
9 eligibility standards for respite services taking into
10 consideration the unique economic and social needs of the
11 population for whom they are to be provided. The population
12 identified for the purposes of this Act includes persons
13 suffering from Alzheimer's disease or a related disorder and
14 persons who are 60 55 years of age or older, or persons age 60
15 and older with an identified service need. Priority shall be
16 given in all cases to frail, abused or functionally disabled or
17 cognitively impaired adults.
18 (Source: P.A. 87-974.)
 
19     (320 ILCS 10/6)  (from Ch. 23, par. 6206)
20     Sec. 6. Responsibilities. The following requirements
21 shall apply for any projects authorized under Section 3 of this
22 Act:
23     (a) The Department Director shall administer this Act and
24 shall adopt rules and standards the Department deems necessary
25 for that purpose establish target areas needing respite care
26 services.
27     (b) The Department Director shall make grants to or
28 contract with Area Agencies on Aging and other appropriate
29 community-based organizations to provide respite care under
30 this Act publicize the existence of, and make available,
31 application forms for sponsors seeking to establish a respite
32 program.
33     (c) (Blank). The application forms shall require the
34 following information and any other information the Director

 

 

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1 deems necessary.
2         (1) Identity and qualifications of a sponsor.
3         (2) Identity and qualifications of a provider and a
4     plan for the coordination of services.
5         (3) An assessment of the community need, support and
6     participation for respite services. The assessment shall
7     include documentation.
8         (4) Plans for the coordination and arrangement of
9     provider services in a manner that meets client needs.
10         (5) A fiscal plan, including specific provisions for
11     the utilization of existing reimbursement and funding
12     sources and the development of local financial support.
13         (6) Plans for publicizing the purpose of the project
14     and the services to be provided.
15         (7) Certification of licensure or certification of any
16     individual, agency or family providing a service subject to
17     licensure, or certification under State law.
18     (d) (Blank). The Director shall review and evaluate each
19 application and present each application for review and
20 evaluation by the Council on Aging established under Section 7
21 of the Illinois Act on the Aging. The Council and the
22 Department shall approve a number of applications and, within
23 the amounts appropriated, award grants for the operation of
24 respite programs.
25     (e) (Blank). The application approved by the Director and
26 the Council on Aging shall be the service plan of the provider.
27 The Director shall ensure that each service plan is coordinated
28 with the designated area agency provided for in Sections 3.07
29 and 3.08 of the Illinois Act on the Aging, the local public
30 health authority, and any other public or private service
31 provider to ensure that every effort will be made to utilize
32 existing funding sources and service providers and to avoid
33 unnecessary duplication of services.
34     (f) Nothing in this Act shall be construed to limit,
35 modify, or otherwise affect the provision of long-term in-home
36 services under Section 4.02 of the Illinois Act on the Aging.

 

 

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1 (Source: P.A. 87-974.)
 
2     (320 ILCS 10/8)  (from Ch. 23, par. 6208)
3     Sec. 8. Funding. Services Respite projects authorized
4 under this Act shall be funded only to the extent of available
5 appropriations for such purposes. The Director may shall seek
6 and obtain State and federal funds that may be available to
7 finance respite care grants awarded under Section 6 of this
8 Act, and may shall also seek and obtain other non-state
9 resources for which the State may be eligible. Implementation
10 of projects under this Act shall be contingent upon the
11 availability of federal financial participation. To the extent
12 necessary for implementation of this Act, The Department may
13 shall seek appropriate waivers of federal requirements from the
14 U.S. Department of Health and Human Services.
15 (Source: P.A. 87-974.)
 
16     (320 ILCS 10/11)  (from Ch. 23, par. 6211)
17     Sec. 11. Respite Care Worker Training.
18     (a) A respite care worker shall be an appropriately trained
19 individual whose duty it is to provide in-home supervision and
20 assistance to a frail or abused or functionally disabled or
21 cognitively impaired older adult in order to allow the primary
22 care-giver a break from his or her continuous care-giving
23 responsibilities.
24     (b) The Director may prescribe minimum training guidelines
25 standards for respite care workers to ensure that the special
26 needs of persons receiving services under this Act and their
27 primary caregivers will be met. The Director may designate
28 Alzheimer's disease associations and community agencies to
29 conduct such training. Nothing in this Act should be construed
30 to exempt any individual providing a service subject to
31 licensure or certification under State law from these
32 requirements.
33 (Source: P.A. 87-974.)
 

 

 

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1     (320 ILCS 10/12)  (from Ch. 23, par. 6212)
2     Sec. 12. Annual Report. The Director shall submit a report
3 each year to the Governor and the General Assembly detailing
4 the progress of the respite care services provided programs
5 established under this Act. The report shall include:
6     (a) a financial report for each program;
7     (b) a qualitative and quantitative profile of sponsors,
8 providers, care-givers and recipients participating in the
9 program;
10     (c) a comparative assessment of the costs and effectiveness
11 of each service or combination of services provided;
12     (d) an assessment of the nature and extent of the demand
13 for services; and
14     (e) an evaluation of the success of programs receiving
15 grants for services.
16 (Source: P.A. 87-974.)
 
17     (320 ILCS 10/7 rep.)
18     (320 ILCS 10/9 rep.)
19     (320 ILCS 10/10 rep.)
20     Section 91. The Respite Program Act is amended by repealing
21 Sections 7, 9, and 10.
 
22     Section 99. Effective date. This Act takes effect on July
23 1, 2004.