LRB093 07271 DRJ 07429 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
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
-2- LRB093 07271 DRJ 07429 b
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
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
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.
-3- LRB093 07271 DRJ 07429 b
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
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
-4- LRB093 07271 DRJ 07429 b
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
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
-5- LRB093 07271 DRJ 07429 b
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
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
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 Illinois Income Tax Act is amended by
27 adding Section 210.10 as follows:
28 (35 ILCS 5/210.10 new)
29 Sec. 210.10. Family caregiver tax credit.
-6- LRB093 07271 DRJ 07429 b
1 (a) In this Section, unless the context clearly requires
3 "Family caregiver" means the individual who normally
4 provides the daily care or supervision of a family member who
5 is a frail or disabled adult. The family caregiver may, but
6 need not, reside in the same household as the frail or
7 disabled adult.
8 "Family member" means the family caregiver's spouse or a
9 parent, grandparent, brother, or sister of the family
10 caregiver or of the family caregiver's spouse.
11 "Frail or disabled adult" means a person who is 60 years
12 of age or older and who either (i) suffers from Alzheimer's
13 disease or a related disorder or (ii) is unable to attend to
14 his or her daily needs without the assistance or regular
15 supervision of a caregiver due to mental or physical
17 (b) For taxable years ending on or after December 31,
18 2003, a taxpayer who is a family caregiver is entitled to a
19 credit against the tax imposed by subsections (a) and (b) of
20 Section 201 in an amount equal to $10 for each day in the
21 taxable year on which the taxpayer provides the care or
22 supervision of a family member who is a frail or disabled
23 adult. The amount of the tax credit for a taxable year may
24 not exceed $3,000, however.
25 (c) The tax credit may not reduce the taxpayer's
26 liability to less than zero. If the amount of the tax credit
27 exceeds the tax liability for the year, the excess may be
28 carried forward and applied to the tax liability of the
29 taxable year following the excess credit year.
30 (d) A taxpayer claiming the tax credit provided by this
31 Section must maintain and record the information required by
32 the Department by rule regarding the care or supervision
33 provided to the taxpayer's family member. The Department's
34 rules must include a requirement that the Department on Aging
-7- LRB093 07271 DRJ 07429 b
1 confirm that the taxpayer has provided the daily care or
2 supervision for which the tax credit is claimed.
3 (e) The provisions of Section 250 do not apply to the
4 family caregiver tax credit under this Section.
5 Section 95. The Respite Program Act is amended by
6 changing Sections 1.5, 2, 3, 4, 5, 6, 8, 11, and 12 as
8 (320 ILCS 10/1.5) (from Ch. 23, par. 6201.5)
9 Sec. 1.5. Purpose. It is hereby found and determined by
10 the General Assembly that respite care provides relief and
11 support to the primary care-giver of a frail or abused or
12 functionally disabled or cognitively impaired older adult and
13 providesby providing a break for the caregiver from the
14 continuous responsibilities of care-giving. Without this
15 support, the primary care-giver's ability to continue in his
16 or her role would be jeopardized; thereby increasing the risk
17 of institutionalization of the frail or abused or
18 functionally disabled or cognitively impaired older adult.
19 By providingimproving and expanding the in-home respite
20 care services currently available through intermittent
21 planned or emergency relief to the care-giver during the
22 regular week-day, evening, and weekend hours, both the
23 special physical and psychological needs of the primary
24 care-giver and the frail or abused or functionally disabled,
25 or cognitively impaired older adult, who is the recipient of
26 continuous care, shall be met reducing or preventing the need
27 for institutionalization.
28 Furthermore, the primary care-giver providing continuous
29 care is frequently under substantial financial stress.
30 Respite care and other supportive services sustain and
31 preserve the primary care-giver and family caregiving unit.
32 It is the intent of the General Assembly that this amendatory
-8- LRB093 07271 DRJ 07429 b
1 Act of 1992 ensure that Illinois primary care-givers of frail
2 or abused or functionally disabled or cognitively impaired
3 older adults have access to affordable, appropriate in-home
4 respite care services.
5 (Source: P.A. 87-974.)
6 (320 ILCS 10/2) (from Ch. 23, par. 6202)
7 Sec. 2. Definitions. As used in this Act:
8 (1) "Respite care" means the provision of intermittent
9 and temporary substitute care or supervision of frail or
10 abused or functionally disabled or cognitively impaired older
11 adults on behalf of and in the absence of the primary
12 care-giver, for the purpose of providing relief from the
13 stress or responsibilities concomitant with providing
14 constant care, so as to enable the care-giver to continue the
15 provision of care in the home. Respite care should be
16 available to sustain the primary care-giver throughout the
17 period of care-giving, which can vary from several months to
18 a number of years. Respite care can be provided in the home,
19 in a community based day care setting during the day,
20 overnight, in a substitute residential setting such as a
21 long-term care facility required to be licensed under the
22 Nursing Home Care Act or the Assisted Living and Shared
23 Housing Act, or for more extended periods of time on a
24 temporary basis.
25 (1.5) "In-home respite care" means care provided by an
26 appropriately trained paid worker providing short-term
27 intermittent care, supervision, or companionship to the frail
28 or disabled adult in the home while relieving the care-giver,
29 by permitting a short-term break from the care-giver's
30 care-giving role. This support may contribute to the delay,
31 reduction, and prevention of institutionalization by enabling
32 the care-giver to continue in his or her care-giving role.
33 In-home respite care should be flexible and available in a
-9- LRB093 07271 DRJ 07429 b
1 manner that is responsive to the needs of the care-giver.
2 This may consist of evening respite care services that are
3 available from 6:00 p.m. to 8:00 a.m. Monday through Friday
4 and weekend respite care services from 6:00 p.m. Friday to
5 8:00 a.m. Monday.
6 (2) "Care-giver" shall mean the family member or other
7 natural person who normally provides the daily care or
8 supervision of a frail, abused or disabled elderly adult.
9 Such care-giver may, but need not, reside in the same
10 household as the frail or disabled adult.
11 (3) (Blank)."Provider" shall mean any entity enumerated
12 in paragraph (1) of this Section which is the supplier of
13 services providing respite.
14 (4) (Blank)."Sponsor" shall mean the provider, public
15 agency or community group approved by the Director which
16 establishes a contractual relationship with the Department
17 for the purposes of providing services to persons under this
18 Act, and which is responsible for the recruitment of
19 providers, the coordination and arrangement of provider
20 services in a manner which meets client needs, the general
21 supervision of the local program, and the submission of such
22 information or reports as may be required by the Director.
23 (5) (Blank)."Director" shall mean the Director of
25 (6) "Department" shall mean the Department on Aging.
26 (7) (Blank)."Abused" shall have the same meaning
27 ascribed to it in Section 103 of the Illinois Domestic
28 Violence Act of 1986.
29 (8) "Frail or disabled adult" shall mean any person
30 suffering from Alzheimer's disease who is 6055 years of age
31 or older andor any adult 60 years of age or older, who
32 either (i) suffers from Alzheimer's disease or a related
33 disorder or (ii) is unable to attend to his or her daily
34 needs without the assistance or regular supervision of a
-10- LRB093 07271 DRJ 07429 b
1 care-giver due to mental or physical impairment and who is
2 otherwise eligible for services on the basis of his or her
3 level of impairment.
4 (9) "Emergency respite care" means the immediate
5 placement of a trained, in-home respite care worker in the
6 home during an emergency or unplanned event, or during a
7 temporary placement outside the home, to substitute for the
8 primary care-giver. Emergency respite care may be provided
9 in the home on one or more occasions unless an extension is
10 deemed necessary by the case coordination unit. When there
11 is an urgent need for emergency respite care, procedures to
12 accommodate this need must be determined. An emergency is:
13 (a) An unplanned event that results in the
14 immediate and unavoidable absence of the primary
15 care-giver from the home in an excess of 4 hours at a
16 time when no other qualified care-giver is available.
17 (b) An unplanned situation that prevents the
18 primary care-giver from providing the care required by a
19 frail or abused or functionally disabled or cognitively
20 impaired adult living at home.
21 (c) An unplanned event that threatens the health
22 and safety of the frail or disabled adult.
23 (d) An unplanned event that threatens the health
24 and safety of the primary care-giver thereby placing the
25 frail or abused or functionally disabled or cognitively
26 impaired older adult in danger.
27 (10) (Blank)."Primary care-giver" means the spouse,
28 relative, or friend, 18 years of age or older, who provides
29 the daily in-home care and supervision of a frail or abused
30 or functionally disabled or cognitively impaired older adult.
31 A primary care-giver may, but does not need to, reside in the
32 same household as the frail or abused or functionally
33 disabled or cognitively impaired adult. A primary care-giver
34 requires intermittent relief from his or her caregiving
-11- LRB093 07271 DRJ 07429 b
1 duties to continue to function as the primary care-giver.
2 (Source: P.A. 91-357, eff. 7-29-99; 92-16, eff. 6-28-01.)
3 (320 ILCS 10/3) (from Ch. 23, par. 6203)
4 Sec. 3. Respite Program. The Director is hereby
5 authorized to administer a program ofestablish respite
6 projects for the purposes of providing care and assistance to
7 persons in need and to deter the institutionalization of
8 frail or disabled or functionally disabled or cognitively
9 impaired adults.
10 (Source: P.A. 87-974.)
11 (320 ILCS 10/4) (from Ch. 23, par. 6204)
12 Sec. 4. No Limit to Care. Nothing contained in this Act
13 shall be construed so as to limit, modify or otherwise affect
14 the provisions, for long-term in-home services being provided
15 under, of Section 4.02 of the Illinois Act on the Aging.
16 (Source: P.A. 87-974.)
17 (320 ILCS 10/5) (from Ch. 23, par. 6205)
18 Sec. 5. Eligibility. The Department may establish
19 eligibility standards for respite services taking into
20 consideration the unique economic and social needs of the
21 population for whom they are to be provided. The population
22 identified for the purposes of this Act includes persons
23 suffering from Alzheimer's disease or a related disorder and
24 persons who are 6055 years of age or older, or persons age
25 60 and older with an identified service need. Priority shall
26 be given in all cases to frail, abused or functionally
27 disabled or cognitively impaired adults.
28 (Source: P.A. 87-974.)
29 (320 ILCS 10/6) (from Ch. 23, par. 6206)
30 Sec. 6. Responsibilities. The following requirements
-12- LRB093 07271 DRJ 07429 b
1 shall apply for any projects authorized under Section 3 of
2 this Act:
3 (a) The DepartmentDirector shall administer this Act
4 and shall adopt rules and standards the Department deems
5 necessary for that purposeestablish target areas needing
6 respite care services.
7 (b) The DepartmentDirector shall make grants to or
8 contract with Area Agencies on Aging and other appropriate
9 community-based organizations to provide respite care under
10 this Actpublicize the existence of, and make available,
11 application forms for sponsors seeking to establish a respite
13 (c) (Blank).The application forms shall require the
14 following information and any other information the Director
15 deems necessary.
16 (1) Identity and qualifications of a sponsor.
17 (2) Identity and qualifications of a provider and a
18 plan for the coordination of services.
19 (3) An assessment of the community need, support
20 and participation for respite services. The assessment
21 shall include documentation.
22 (4) Plans for the coordination and arrangement of
23 provider services in a manner that meets client needs.
24 (5) A fiscal plan, including specific provisions
25 for the utilization of existing reimbursement and funding
26 sources and the development of local financial support.
27 (6) Plans for publicizing the purpose of the
28 project and the services to be provided.
29 (7) Certification of licensure or certification of
30 any individual, agency or family providing a service
31 subject to licensure, or certification under State law.
32 (d) (Blank).The Director shall review and evaluate each
33 application and present each application for review and
34 evaluation by the Council on Aging established under Section
-13- LRB093 07271 DRJ 07429 b
1 7 of the Illinois Act on the Aging. The Council and the
2 Department shall approve a number of applications and, within
3 the amounts appropriated, award grants for the operation of
4 respite programs.
5 (e) (Blank).The application approved by the Director
6 and the Council on Aging shall be the service plan of the
7 provider. The Director shall ensure that each service plan
8 is coordinated with the designated area agency provided for
9 in Sections 3.07 and 3.08 of the Illinois Act on the Aging,
10 the local public health authority, and any other public or
11 private service provider to ensure that every effort will be
12 made to utilize existing funding sources and service
13 providers and to avoid unnecessary duplication of services.
14 (f) Nothing in this Act shall be construed to limit,
15 modify, or otherwise affect the provision of long-term
16 in-home services under Section 4.02 of the Illinois Act on
17 the Aging.
18 (Source: P.A. 87-974.)
19 (320 ILCS 10/8) (from Ch. 23, par. 6208)
20 Sec. 8. Funding. ServicesRespite projects authorized
21 under this Act shall be funded only to the extent of
22 available appropriations for such purposes. The Director may
23 shall seek and obtain State and federal funds that may be
24 available to finance respite caregrants awarded under
25 Section 6 of this Act, and mayshall also seek and obtain
26 other non-state resources for which the State may be
27 eligible. Implementation of projects under this Act shall be
28 contingent upon the availability of federal financial
29 participation. To the extent necessary for implementation of
30 this Act, The Department mayshall seek appropriate waivers
31 of federal requirements from the U.S. Department of Health
32 and Human Services.
33 (Source: P.A. 87-974.)
-14- LRB093 07271 DRJ 07429 b
1 (320 ILCS 10/11) (from Ch. 23, par. 6211)
2 Sec. 11. Respite Care Worker Training.
3 (a) A respite care worker shall be an appropriately
4 trained individual whose duty it is to provide in-home
5 supervision and assistance to a frail or abused or
6 functionally disabled or cognitively impaired older adult in
7 order to allow the primary care-giver a break from his or her
8 continuous care-giving responsibilities.
9 (b) The Director may prescribe minimum training
10 guidelinesstandards for respite care workers to ensure that
11 the special needs of persons receiving services under this
12 Act and their primary caregivers will be met. The Director
13 may designate Alzheimer's disease associations and community
14 agencies to conduct such training. Nothing in this Act
15 should be construed to exempt any individual providing a
16 service subject to licensure or certification under State law
17 from these requirements.
18 (Source: P.A. 87-974.)
19 (320 ILCS 10/12) (from Ch. 23, par. 6212)
20 Sec. 12. Annual Report. The Director shall submit a
21 report each year to the Governor and the General Assembly
22 detailing the progress of the respite care services provided
23 programs established under this Act. The report shall
25 (a) a financial report for each program;
26 (b) a qualitative and quantitative profile of sponsors,
27 providers, care-givers and recipients participating in the
29 (c) a comparative assessment of the costs and
30 effectiveness of each 10rvice or combination of services
32 (d) an assessment of the nature and extent of the demand
33 for services; and
-15- LRB093 07271 DRJ 07429 b
1 (e) an evaluation of the success of programs receiving
2 grants for services.
3 (Source: P.A. 87-974.)
4 (320 ILCS 10/7 rep.)
5 (320 ILCS 10/9 rep.)
6 (320 ILCS 10/10 rep.)
7 Section 91. The Respite Program Act is amended by
8 repealing Sections 7, 9, and 10.
9 Section 99. Effective date. This Act takes effect upon
10 becoming law.