Public Act 093-0864
 
HB6706 Enrolled LRB093 18060 DRJ 43747 b

    AN ACT in relation to aging.
 
    Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
 
    Section 1. Short title. This Act may be cited as the
Family Caregiver Act.
 
    Section 5. Legislative findings. The General Assembly
recognizes the following:
        (1) Family caregivers, serving without compensation,
    have been the mainstay of the long-term care system in this
    country. Care provided by these informal caregivers is the
    most crucial factor in avoiding or postponing
    institutionalization of the State's residents.
        (2) Among non-institutionalized persons needing
    assistance with personal care needs, two-thirds depend
    solely on family and friends for assistance. Another 25%
    supplement family care with services from paid providers.
    Only a little more than 5% rely exclusively on paid
    services.
        (3) Family caregivers are frequently under substantial
    physical, psychological, and financial stress. Unrelieved
    by support services available to the caregiver, this stress
    may lead to premature or unnecessary institutionalization
    of the care recipient or deterioration in the health
    condition and family circumstances of the caregiver.
        (4) Two out of 3 family caregivers, due to being
    employed outside the home, experience additional stress.
    Two-thirds of working caregivers report conflicts between
    work and caregiving, requiring them to rearrange their work
    schedules, work fewer than normal hours, or take an unpaid
    leave of absence. For this population, caregiver support
    services have the added benefit of allowing family
    caregivers to remain active members of our State's
    workforce.
 
    Section 10. Legislative intent. It is the intent of the
General Assembly to establish a multi-faceted family caregiver
support program to assist unpaid family caregivers and
grandparents or other older individuals who are relative
caregivers, who are informal providers of in-home and community
care to older individuals or children.
    Services provided under this program shall do the
following:
        (1) Provide information, relief, and support to family
    and other unpaid caregivers of older individuals and
    children.
        (2) Encourage family members to provide care for their
    family members who are older individuals and children.
        (3) Provide temporary substitute support services or
    living arrangements to allow a period of relief or rest for
    caregivers.
        (4) Be provided in the least restrictive setting
    available consistent with the individually assessed needs
    of older individuals and children.
        (5) Include services appropriate to the needs of family
    members caring for older individuals and children,
    including older individuals with dementia.
        (6) Provide family caregivers with services that
    enable them to make informed decisions about current and
    future care plans, solve day-to-day caregiving problems,
    learn essential care giving skills, and locate services
    that may strengthen their capacity to provide care.
 
    Section 15. Definitions. In this Act:
    "Caregiver" or "family caregiver" means an adult family
member, or another individual, who is an informal provider of
in-home and community care to an older individual, or a
grandparent or older individual who is a relative caregiver.
    "Child" or "children" means an individual or individuals 18
years of age or under.
    "Department" means the Department on Aging.
    "Eligible participant" means a family caregiver or a
grandparent or older individual who is a relative caregiver.
    "Family caregiver support services" includes, but is not
limited to, the following:
        (1) Information to caregivers about available
    services.
        (2) Assistance to caregivers in gaining access to the
    services.
        (3) Individual counseling, organization of support
    groups, and caregiver training for caregivers to assist the
    caregivers in making decisions and solving problems
    relating to their caregiving roles.
        (4) Respite care to enable caregivers to be temporarily
    relieved from their caregiving responsibilities.
        (5) Supplemental services, on a limited basis, to
    complement the care provided by the caregivers.
        (6) Other services as identified by the Department and
    defined by rule.
    "Frail individual" means an older individual who is
determined to be functionally impaired because the individual
(i) is unable to perform from at least 2 activities of daily
living without substantial human assistance, including verbal
reminding, physical cueing, or supervision or (ii) due to a
cognitive or other mental impairment, requires substantial
supervision because the individual behaves in a manner that
poses a serious health or safety hazard to the individual or to
another individual.
    "Grandparent or older individual who is a relative
caregiver" means a grandparent or step-grandparent of a child,
or a relative of a child by blood or marriage, who:
        (1) lives with the child;
        (2) is the primary caregiver for the child because the
    child's biological or adoptive parents are unable or
    unwilling to serve as the primary caregiver for the child;
    and
        (3) has a legal relationship to the child, such as
    legal custody or guardianship, or is raising the child
    informally.
    "Informal provider" means an individual who is not
compensated for the care he or she provides.
    "Older individual" means an individual who is 60 years of
age or older, except for a grandparent or older individual who
is a relative caregiver.
    "Respite care" means substitute supports or living
arrangements provided on an intermittent, occasional basis.
The term includes, but is not limited to, in-home respite care,
adult day care, child care, and institutional care. The term
also includes respite care as defined in Section 2 of the
Respite Program Act to the extent that such services are
allowable and participants are eligible under the National
Family Caregiver Support Program.
 
    Section 16. Family caregiver demonstration grant. The
Department shall seek federal funding for the establishment and
assessment of a Family Caregiver Training and Support
Demonstration Project. The Department is authorized to fund 2
sites, one in a rural community and one in a more urban area.
The Department shall adopt rules governing participation and
oversight of the program. The Department shall seek technical
assistance from the Department of Public Aid and the Department
of Human Services. The Department shall advise the Governor and
the General Assembly regarding the effectiveness of the program
within 6 months after the conclusion of the demonstration
period.
 
    Section 20. Powers and duties of the Department. The
Department shall administer this Act and shall adopt rules and
standards the Department deems necessary for that purpose. At a
minimum, those rules and standards shall address the following:
        (1) Standards and mechanisms designed to ensure the
    quality of services provided with assistance made
    available under this Act.
        (2) Data collection and record maintenance.
    The Department shall administer this Act in coordination
with Section 4.02 and related provisions of the Illinois Act on
the Aging.
 
    Section 25. Provision of services. The Department shall
contract with area agencies on aging and other appropriate
agencies to conduct family caregiver support services to the
extent of available State and federal funding. Services
provided under this Act must be provided according to the
requirements of federal law and rules, except for the provision
of services to grandparents or older individuals who are
relative caregivers when State funding is utilized to provide
those services.
 
    Section 30. Eligibility for respite and supplemental
services. When a family caregiver is providing in-home and
community care to an older individual, the older individual
must be a frail individual as defined in this Act in order for
the family caregiver to be eligible to receive respite and
supplemental services.
 
    Section 35. Health care practitioners and facilities not
impaired. Nothing in this Act shall impair the practice of any
licensed health care practitioner or licensed health care
facility.
 
    Section 40. Entitlement not created; funding; waivers.
    (a) Nothing in this Act creates or provides any individual
with an entitlement to services or benefits. It is the General
Assembly's intent that services under this Act shall be made
available only to the extent of the availability and level of
appropriations made by the General Assembly.
    (b) The Director may seek and obtain State and federal
funds that may be available to finance services under this Act,
and may also seek and obtain other non-State resources for
which the State may be eligible.
    (c) The Department may seek appropriate waivers of federal
requirements from the U.S. Department of Health and Human
Services.
 
    Section 90. The Respite Program Act is amended by changing
Sections 1.5, 2, 3, 4, 5, 6, 8, 11, and 12 as follows:
 
    (320 ILCS 10/1.5)  (from Ch. 23, par. 6201.5)
    Sec. 1.5. Purpose. It is hereby found and determined by
the General Assembly that respite care provides relief and
support to the primary care-giver of a frail or abused or
functionally disabled or cognitively impaired older adult and
provides by providing a break for the caregiver from the
continuous responsibilities of care-giving. Without this
support, the primary care-giver's ability to continue in his or
her role would be jeopardized; thereby increasing the risk of
institutionalization of the frail or abused or functionally
disabled or cognitively impaired older adult.
    By providing improving and expanding the in-home respite
care services currently available through intermittent planned
or emergency relief to the care-giver during the regular
week-day, evening, and weekend hours, both the special physical
and psychological needs of the primary care-giver and the frail
or abused or functionally disabled, or cognitively impaired
older adult, who is the recipient of continuous care, shall be
met reducing or preventing the need for institutionalization.
    Furthermore, the primary care-giver providing continuous
care is frequently under substantial financial stress. Respite
care and other supportive services sustain and preserve the
primary care-giver and family caregiving unit. It is the intent
of the General Assembly that this amendatory Act of 1992 ensure
that Illinois primary care-givers of frail or abused or
functionally disabled or cognitively impaired older adults
have access to affordable, appropriate in-home respite care
services.
(Source: P.A. 87-974.)
 
    (320 ILCS 10/2)  (from Ch. 23, par. 6202)
    Sec. 2. Definitions. As used in this Act:
    (1) "Respite care" means the provision of intermittent and
temporary substitute care or supervision of frail or abused or
functionally disabled or cognitively impaired older adults on
behalf of and in the absence of the primary care-giver, for the
purpose of providing relief from the stress or responsibilities
concomitant with providing constant care, so as to enable the
care-giver to continue the provision of care in the home.
Respite care should be available to sustain the primary
care-giver throughout the period of care-giving, which can vary
from several months to a number of years. Respite care can be
provided in the home, in a community based day care setting
during the day, overnight, in a substitute residential setting
such as a long-term care facility required to be licensed under
the Nursing Home Care Act or the Assisted Living and Shared
Housing Act, or for more extended periods of time on a
temporary basis.
    (1.5) "In-home respite care" means care provided by an
appropriately trained paid worker providing short-term
intermittent care, supervision, or companionship to the frail
or disabled adult in the home while relieving the care-giver,
by permitting a short-term break from the care-giver's
care-giving role. This support may contribute to the delay,
reduction, and prevention of institutionalization by enabling
the care-giver to continue in his or her care-giving role.
In-home respite care should be flexible and available in a
manner that is responsive to the needs of the care-giver. This
may consist of evening respite care services that are available
from 6:00 p.m. to 8:00 a.m. Monday through Friday and weekend
respite care services from 6:00 p.m. Friday to 8:00 a.m.
Monday.
    (2) "Care-giver" shall mean the family member or other
natural person who normally provides the daily care or
supervision of a frail, abused or disabled elderly adult. Such
care-giver may, but need not, reside in the same household as
the frail or disabled adult.
    (3) (Blank). "Provider" shall mean any entity enumerated in
paragraph (1) of this Section which is the supplier of services
providing respite.
    (4) (Blank). "Sponsor" shall mean the provider, public
agency or community group approved by the Director which
establishes a contractual relationship with the Department for
the purposes of providing services to persons under this Act,
and which is responsible for the recruitment of providers, the
coordination and arrangement of provider services in a manner
which meets client needs, the general supervision of the local
program, and the submission of such information or reports as
may be required by the Director.
    (5) (Blank). "Director" shall mean the Director of Aging.
    (6) "Department" shall mean the Department on Aging.
    (7) (Blank). "Abused" shall have the same meaning ascribed
to it in Section 103 of the Illinois Domestic Violence Act of
1986.
    (8) "Frail or disabled adult" shall mean any person
suffering from Alzheimer's disease who is 60 55 years of age or
older and or any adult 60 years of age or older, 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 the
assistance or regular supervision of a care-giver due to mental
or physical impairment and who is otherwise eligible for
services on the basis of his or her level of impairment.
    (9) "Emergency respite care" means the immediate placement
of a trained, in-home respite care worker in the home during an
emergency or unplanned event, or during a temporary placement
outside the home, to substitute for the primary care-giver.
Emergency respite care may be provided in the home on one or
more occasions unless an extension is deemed necessary by the
case coordination unit or by another agency designated by the
Department and area agencies on aging to conduct needs
assessments for respite care services. When there is an urgent
need for emergency respite care, procedures to accommodate this
need must be determined. An emergency is:
        (a) An unplanned event that results in the immediate
    and unavoidable absence of the primary care-giver from the
    home in an excess of 4 hours at a time when no other
    qualified care-giver is available.
        (b) An unplanned situation that prevents the primary
    care-giver from providing the care required by a frail or
    abused or functionally disabled or cognitively impaired
    adult living at home.
        (c) An unplanned event that threatens the health and
    safety of the frail or disabled adult.
        (d) An unplanned event that threatens the health and
    safety of the primary care-giver thereby placing the frail
    or abused or functionally disabled or cognitively impaired
    older adult in danger.
    (10) (Blank). "Primary care-giver" means the spouse,
relative, or friend, 18 years of age or older, who provides the
daily in-home care and supervision of a frail or abused or
functionally disabled or cognitively impaired older adult. A
primary care-giver may, but does not need to, reside in the
same household as the frail or abused or functionally disabled
or cognitively impaired adult. A primary care-giver requires
intermittent relief from his or her caregiving duties to
continue to function as the primary care-giver.
(Source: P.A. 91-357, eff. 7-29-99; 92-16, eff. 6-28-01.)
 
    (320 ILCS 10/3)  (from Ch. 23, par. 6203)
    Sec. 3. Respite Program. The Director is hereby authorized
to administer a program of establish respite projects for the
purposes of providing care and assistance to persons in need
and to deter the institutionalization of frail or disabled or
functionally disabled or cognitively impaired adults.
(Source: P.A. 87-974.)
 
    (320 ILCS 10/4)  (from Ch. 23, par. 6204)
    Sec. 4. No Limit to Care. Nothing contained in this Act
shall be construed so as to limit, modify or otherwise affect
the provisions, for long-term in-home services being provided
under , of Section 4.02 of the Illinois Act on the Aging.
(Source: P.A. 87-974.)
 
    (320 ILCS 10/5)  (from Ch. 23, par. 6205)
    Sec. 5. Eligibility. The Department may establish
eligibility standards for respite services taking into
consideration the unique economic and social needs of the
population for whom they are to be provided. The population
identified for the purposes of this Act includes persons
suffering from Alzheimer's disease or a related disorder and
persons who are 60 55 years of age or older, or persons age 60
and older with an identified service need. Priority shall be
given in all cases to frail, abused or functionally disabled or
cognitively impaired adults.
(Source: P.A. 87-974.)
 
    (320 ILCS 10/6)  (from Ch. 23, par. 6206)
    Sec. 6. Responsibilities. The following requirements
shall apply for any projects authorized under Section 3 of this
Act:
    (a) The Department Director shall administer this Act and
shall adopt rules and standards the Department deems necessary
for that purpose establish target areas needing respite care
services.
    (b) The Department Director shall make grants to or
contract with Area Agencies on Aging and other appropriate
community-based organizations to provide respite care under
this Act publicize the existence of, and make available,
application forms for sponsors seeking to establish a respite
program.
    (c) (Blank). The application forms shall require the
following information and any other information the Director
deems necessary.
        (1) Identity and qualifications of a sponsor.
        (2) Identity and qualifications of a provider and a
    plan for the coordination of services.
        (3) An assessment of the community need, support and
    participation for respite services. The assessment shall
    include documentation.
        (4) Plans for the coordination and arrangement of
    provider services in a manner that meets client needs.
        (5) A fiscal plan, including specific provisions for
    the utilization of existing reimbursement and funding
    sources and the development of local financial support.
        (6) Plans for publicizing the purpose of the project
    and the services to be provided.
        (7) Certification of licensure or certification of any
    individual, agency or family providing a service subject to
    licensure, or certification under State law.
    (d) (Blank). The Director shall review and evaluate each
application and present each application for review and
evaluation by the Council on Aging established under Section 7
of the Illinois Act on the Aging. The Council and the
Department shall approve a number of applications and, within
the amounts appropriated, award grants for the operation of
respite programs.
    (e) (Blank). The application approved by the Director and
the Council on Aging shall be the service plan of the provider.
The Director shall ensure that each service plan is coordinated
with the designated area agency provided for in Sections 3.07
and 3.08 of the Illinois Act on the Aging, the local public
health authority, and any other public or private service
provider to ensure that every effort will be made to utilize
existing funding sources and service providers and to avoid
unnecessary duplication of services.
    (f) Nothing in this Act shall be construed to limit,
modify, or otherwise affect the provision of long-term in-home
services under Section 4.02 of the Illinois Act on the Aging.
(Source: P.A. 87-974.)
 
    (320 ILCS 10/8)  (from Ch. 23, par. 6208)
    Sec. 8. Funding. Services Respite projects authorized
under this Act shall be funded only to the extent of available
appropriations for such purposes. The Director may shall seek
and obtain State and federal funds that may be available to
finance respite care grants awarded under Section 6 of this
Act, and may shall also seek and obtain other non-state
resources for which the State may be eligible. Implementation
of projects under this Act shall be contingent upon the
availability of federal financial participation. To the extent
necessary for implementation of this Act, The Department may
shall seek appropriate waivers of federal requirements from the
U.S. Department of Health and Human Services.
(Source: P.A. 87-974.)
 
    (320 ILCS 10/11)  (from Ch. 23, par. 6211)
    Sec. 11. Respite Care Worker Training.
    (a) A respite care worker shall be an appropriately trained
individual whose duty it is to provide in-home supervision and
assistance to a frail or abused or functionally disabled or
cognitively impaired older adult in order to allow the primary
care-giver a break from his or her continuous care-giving
responsibilities.
    (b) The Director may prescribe minimum training guidelines
standards for respite care workers to ensure that the special
needs of persons receiving services under this Act and their
primary caregivers will be met. The Director may designate
Alzheimer's disease associations and community agencies to
conduct such training. Nothing in this Act should be construed
to exempt any individual providing a service subject to
licensure or certification under State law from these
requirements.
(Source: P.A. 87-974.)
 
    (320 ILCS 10/12)  (from Ch. 23, par. 6212)
    Sec. 12. Annual Report. The Director shall submit a report
each year to the Governor and the General Assembly detailing
the progress of the respite care services provided programs
established under this Act. The report shall include:
    (a) a financial report for each program;
    (b) a qualitative and quantitative profile of sponsors,
providers, care-givers and recipients participating in the
program;
    (c) a comparative assessment of the costs and effectiveness
of each service or combination of services provided;
    (d) an assessment of the nature and extent of the demand
for services; and
    (e) an evaluation of the success of programs receiving
grants for services.
(Source: P.A. 87-974.)
 
    (320 ILCS 10/7 rep.)
    (320 ILCS 10/9 rep.)
    (320 ILCS 10/10 rep.)
    Section 91. The Respite Program Act is amended by repealing
Sections 7, 9, and 10.
 
    Section 99. Effective date. This Act takes effect on July
1, 2004.