State of Illinois
92^nd General Assembly
Legislation

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92_HB0016eng

HB0016 Engrossed                              LRB9201018DJgcA

 1        AN ACT in relation to aging.

 2        Be  it  enacted  by  the People of the State of Illinois,
 3    represented in the General Assembly:

 4        Section 1.  Short title.  This Act may be  cited  as  the
 5    Family Caregiver Act.

 6        Section  5.  Legislative  findings.  The General Assembly
 7    recognizes the following:
 8             (1)  Family     caregivers,     serving      without
 9        compensation,  have  been  the  mainstay of the long-term
10        care system in this  country.   Care  provided  by  these
11        informal   caregivers  is  the  most  crucial  factor  in
12        avoiding  or  postponing  institutionalization   of   the
13        State's residents.
14             (2)  Among   non-institutionalized  persons  needing
15        assistance with personal care  needs,  two-thirds  depend
16        solely on family and friends for assistance.  Another 25%
17        supplement family care with services from paid providers.
18        Only  a  little  more  than  5%  rely exclusively on paid
19        services.
20             (3)  Family   caregivers   are   frequently    under
21        substantial   physical,   psychological,   and  financial
22        stress.  Unrelieved by support services available to  the
23        caregiver,   this   stress   may  lead  to  premature  or
24        unnecessary institutionalization of the care recipient or
25        deterioration  in  the  health   condition   and   family
26        circumstances of the caregiver.
27             (4)  Two  out  of  3 family caregivers, due to being
28        employed outside the home, experience additional  stress.
29        Two-thirds of working caregivers report conflicts between
30        work  and  caregiving,  requiring them to rearrange their
31        work schedules, work fewer than normal hours, or take  an
 
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 1        unpaid  leave  of absence. For this population, caregiver
 2        support services  have  the  added  benefit  of  allowing
 3        family caregivers to remain active members of our State's
 4        workforce.

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

30        Section 15.  Definitions.  In this Act:
31        "Child"  or "children" means an individual or individuals
32    18 years of age or under.
 
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 1        "Department" means the Department on Aging.
 2        "Eligible participant" means  a  family  caregiver  or  a
 3    grandparent or older individual who is a relative caregiver.
 4        "Family  caregiver"  means  an  adult  family  member, or
 5    another individual, who is an informal  provider  of  in-home
 6    and community care to a frail individual.
 7        "Family  caregiver support services" includes, but is not
 8    limited to, the following:
 9             (1)  Information  to  caregivers   about   available
10        services.
11             (2)  Assistance  to  caregivers in gaining access to
12        the services.
13             (3)  Individual counseling, organization of  support
14        groups,  and  caregiver training for caregivers to assist
15        the caregivers in making decisions and  solving  problems
16        relating to their caregiving roles.
17             (4)  Respite  care  provided  to  a frail individual
18        that will enable caregivers to  be  temporarily  relieved
19        from their caregiving responsibilities.
20             (5)  Supplemental  services,  on a limited basis, to
21        complement the care provided by the caregivers.
22             (6)  Other services as identified by the  Department
23        and defined by rule.
24        "Frail  individual"  means  an  older  individual  who is
25    determined to be functionally impaired because the individual
26    (i) is unable to perform from at least 2 activities of  daily
27    living without substantial human assistance, including verbal
28    reminding,  physical  cueing, or supervision or (ii) due to a
29    cognitive or other mental  impairment,  requires  substantial
30    supervision  because  the individual behaves in a manner that
31    poses a serious health or safety hazard to the individual  or
32    to another individual.
33        "Grandparent  or  older  individual  who  is  a  relative
34    caregiver"  means  a  grandparent  or  step-grandparent  of a
 
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 1    child, or a relative of a child by blood or marriage, who  is
 2    60 years of age or older and who:
 3             (1)  lives with the child;
 4             (2)  is  the  caregiver  for  the  child because the
 5        child's biological or  adoptive  parents  are  unable  or
 6        unwilling  to  serve  as  the  primary  caregiver for the
 7        child; and
 8             (3)  has a legal relationship to the child, such  as
 9        legal  custody  or  guardianship, or is raising the child
10        informally.
11        "Informal  provider"  means  an  individual  who  is  not
12    compensated for the care he or she provides.
13        "Older individual" means an individual who is 60 years of
14    age or older.
15        "Respite  care"  means  substitute  supports  or   living
16    arrangements  provided  on an intermittent, occasional basis.
17    The term includes, but is not  limited  to,  in-home  respite
18    care, adult day care, child care, and institutional care. The
19    term  also  includes  respite care as defined in Section 2 of
20    the Respite Program Act to the extent that such services  are
21    allowable  and  participants  are eligible under the National
22    Family Caregiver Support Program.

23        Section 20.  Powers and duties of  the  Department.   The
24    Department  shall  administer  this Act and shall adopt rules
25    and  standards  the  Department  deems  necessary  for   that
26    purpose.  At  a  minimum,  those  rules  and  standards shall
27    address the following:
28             (1)  Standards and mechanisms designed to ensure the
29        quality  of  services  provided  with   assistance   made
30        available under this Act.
31             (2)  Data collection and record maintenance.
32        The  Department shall administer this Act in coordination
33    with Section 4.02 and related provisions of the Illinois  Act
 
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 1    on the Aging.

 2        Section 25.  Provision of services.  The Department shall
 3    contract  with  area  agencies on aging and other appropriate
 4    agencies to conduct family caregiver support services to  the
 5    extent  of  available  State  and  federal  funding. Services
 6    provided under this Act must be  provided  according  to  the
 7    requirements of federal law and rules.

 8        Section 35.  Health care practitioners and facilities not
 9    impaired.  Nothing  in  this Act shall impair the practice of
10    any licensed health care practitioner or licensed health care
11    facility.

12        Section 40.  Entitlement not created; funding; waivers.
13        (a)  Nothing  in  this  Act  creates  or   provides   any
14    individual with an entitlement to services or benefits. It is
15    the  General  Assembly's  intent that services under this Act
16    shall  be  made  available  only  to  the   extent   of   the
17    availability  and level of appropriations made by the General
18    Assembly.
19        (b)  The Director may seek and obtain State  and  federal
20    funds  that  may  be available to finance services under this
21    Act, and may also seek and obtain other  non-State  resources
22    for which the State may be eligible.
23        (c)  The  Department  may  seek  appropriate  waivers  of
24    federal  requirements  from the U.S. Department of Health and
25    Human Services.

26        Section  90.  The  Respite  Program  Act  is  amended  by
27    changing Sections 1.5, 2, 3, 4,  5,  6,  8,  11,  and  12  as
28    follows:

29        (320 ILCS 10/1.5) (from Ch. 23, par. 6201.5)
 
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 1        Sec. 1.5.  Purpose.  It is hereby found and determined by
 2    the  General  Assembly  that respite care provides relief and
 3    support to the primary care-giver of a  frail  or  abused  or
 4    functionally disabled or cognitively impaired older adult and
 5    provides  by  providing  a  break  for the caregiver from the
 6    continuous responsibilities  of  care-giving.   Without  this
 7    support,  the primary care-giver's ability to continue in his
 8    or her role would be jeopardized; thereby increasing the risk
 9    of  institutionalization  of   the   frail   or   abused   or
10    functionally disabled or cognitively impaired older adult.
11        By  providing improving and expanding the in-home respite
12    care  services  currently  available   through   intermittent
13    planned  or  emergency  relief  to  the care-giver during the
14    regular  week-day,  evening,  and  weekend  hours,  both  the
15    special physical  and  psychological  needs  of  the  primary
16    care-giver  and the frail or abused or functionally disabled,
17    or cognitively impaired older adult, who is the recipient  of
18    continuous care, shall be met reducing or preventing the need
19    for institutionalization.
20        Furthermore,  the primary care-giver providing continuous
21    care  is  frequently  under  substantial  financial   stress.
22    Respite  care  and  other  supportive  services  sustain  and
23    preserve  the  primary care-giver and family caregiving unit.
24    It is the intent of the General Assembly that this amendatory
25    Act of 1992 ensure that Illinois primary care-givers of frail
26    or abused or functionally disabled  or  cognitively  impaired
27    older  adults  have access to affordable, appropriate in-home
28    respite care services.
29    (Source: P.A. 87-974.)

30        (320 ILCS 10/2) (from Ch. 23, par. 6202)
31        Sec. 2.  Definitions.  As used in this Act:
32        (1)  "Respite care" means the provision  of  intermittent
33    and  temporary  substitute  care  or  supervision of frail or
 
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 1    abused or functionally disabled or cognitively impaired older
 2    adults on behalf  of  and  in  the  absence  of  the  primary
 3    care-giver,  for  the  purpose  of  providing relief from the
 4    stress  or  responsibilities   concomitant   with   providing
 5    constant care, so as to enable the care-giver to continue the
 6    provision  of  care  in  the  home.   Respite  care should be
 7    available to sustain the primary  care-giver  throughout  the
 8    period  of care-giving, which can vary from several months to
 9    a number of years. Respite care can be provided in the  home,
10    in  a  community  based  day  care  setting  during  the day,
11    overnight, in a substitute  residential  setting  such  as  a
12    long-term  care  facility  required  to be licensed under the
13    Nursing Home Care Act  or  the  Assisted  Living  and  Shared
14    Housing  Act,  or  for  more  extended  periods  of time on a
15    temporary basis.
16        (1.5)  "In-home respite care" means care provided  by  an
17    appropriately   trained   paid  worker  providing  short-term
18    intermittent care, supervision, or companionship to the frail
19    or disabled adult in the home while relieving the care-giver,
20    by  permitting  a  short-term  break  from  the  care-giver's
21    care-giving role.  This support may contribute to the  delay,
22    reduction, and prevention of institutionalization by enabling
23    the  care-giver  to  continue in his or her care-giving role.
24    In-home respite care should be flexible and  available  in  a
25    manner  that  is  responsive  to the needs of the care-giver.
26    This may consist of evening respite care  services  that  are
27    available  from  6:00 p.m. to 8:00 a.m. Monday through Friday
28    and weekend respite care services from 6:00  p.m.  Friday  to
29    8:00 a.m. Monday.
30        (2)  "Care-giver"  shall  mean the family member or other
31    natural person  who  normally  provides  the  daily  care  or
32    supervision  of  a  frail,  abused or disabled elderly adult.
33    Such care-giver  may,  but  need  not,  reside  in  the  same
34    household as the frail or disabled adult.
 
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 1        (3)  (Blank). "Provider" shall mean any entity enumerated
 2    in  paragraph  (1)  of  this Section which is the supplier of
 3    services providing respite.
 4        (4)  (Blank). "Sponsor" shall mean the  provider,  public
 5    agency  or  community  group  approved  by the Director which
 6    establishes a contractual relationship  with  the  Department
 7    for  the purposes of providing services to persons under this
 8    Act,  and  which  is  responsible  for  the  recruitment   of
 9    providers,  the  coordination  and  arrangement  of  provider
10    services  in  a  manner which meets client needs, the general
11    supervision of the local program, and the submission of  such
12    information or reports as may be required by the Director.
13        (5)  (Blank).  "Director"  shall  mean  the  Director  on
14    Aging.
15        (6)  "Department" shall mean the Department on Aging.
16        (7)  (Blank).   "Abused"  shall  have  the  same  meaning
17    ascribed to it  in  Section  103  of  the  Illinois  Domestic
18    Violence Act of 1986.
19        (8)  "Frail  or  disabled  adult"  shall  mean any person
20    suffering from Alzheimer's disease and who is 60 55 years  of
21    age  or  older and or any adult 60 years of age or older, who
22    either (i) suffers from  Alzheimer's  disease  or  a  related
23    disorder  or  (ii)  is  unable  to attend to his or her daily
24    needs without the assistance  or  regular  supervision  of  a
25    care-giver  due  to  mental or physical impairment and who is
26    otherwise eligible for services on the basis of  his  or  her
27    level of impairment.
28        (9)  "Emergency   respite   care"   means  the  immediate
29    placement of a trained, in-home respite care  worker  in  the
30    home  during  an  emergency  or  unplanned event, or during a
31    temporary placement outside the home, to substitute  for  the
32    primary  care-giver.   Emergency respite care may be provided
33    in the home on one or more occasions unless an  extension  is
34    deemed  necessary  by the case coordination unit.  When there
 
HB0016 Engrossed            -9-               LRB9201018DJgcA
 1    is an urgent need for emergency respite care,  procedures  to
 2    accommodate this need must be determined.  An emergency is:
 3             (a)  An   unplanned   event   that  results  in  the
 4        immediate  and  unavoidable  absence   of   the   primary
 5        care-giver  from  the  home  in an excess of 4 hours at a
 6        time when no other qualified care-giver is available.
 7             (b)  An  unplanned  situation  that   prevents   the
 8        primary  care-giver from providing the care required by a
 9        frail or abused or functionally disabled  or  cognitively
10        impaired adult living at home.
11             (c)  An  unplanned  event  that threatens the health
12        and safety of the frail or disabled adult.
13             (d)  An unplanned event that  threatens  the  health
14        and  safety of the primary care-giver thereby placing the
15        frail or abused or functionally disabled  or  cognitively
16        impaired older adult in danger.
17        (10)  (Blank).  "Primary  care-giver"  means  the spouse,
18    relative, or friend, 18 years of age or older,  who  provides
19    the  daily  in-home care and supervision of a frail or abused
20    or functionally disabled or cognitively impaired older adult.
21    A primary care-giver may, but does not need to, reside in the
22    same  household  as  the  frail  or  abused  or  functionally
23    disabled or cognitively impaired adult. A primary  care-giver
24    requires  intermittent relief from their caregiving duties to
25    continue to function as the primary care-giver.
26    (Source: P.A. 91-357, eff. 7-29-99; revised 2-23-00.)

27        (320 ILCS 10/3) (from Ch. 23, par. 6203)
28        Sec.  3.  Respite  Program.   The  Director   is   hereby
29    authorized  to  administer  a  program  of  establish respite
30    projects for the purposes of providing care and assistance to
31    persons in need and  to  deter  the  institutionalization  of
32    frail  or  disabled  or  functionally disabled or cognitively
33    impaired adults.
 
HB0016 Engrossed            -10-              LRB9201018DJgcA
 1    (Source: P.A. 87-974.)

 2        (320 ILCS 10/4) (from Ch. 23, par. 6204)
 3        Sec. 4.  No Limit to Care.  Nothing contained in this Act
 4    shall be construed so as to limit, modify or otherwise affect
 5    the provisions, for long-term in-home services being provided
 6    under, of Section 4.02 of the Illinois Act on the Aging.
 7    (Source: P.A. 87-974.)

 8        (320 ILCS 10/5) (from Ch. 23, par. 6205)
 9        Sec.  5.  Eligibility.   The  Department  may   establish
10    eligibility   standards  for  respite  services  taking  into
11    consideration the unique economic and  social  needs  of  the
12    population  for  whom they are to be provided. The population
13    identified for the purposes  of  this  Act  includes  persons
14    suffering  from Alzheimer's disease or a related disorder and
15    persons who are 60 55 years of age or older, or  persons  age
16    60 and older with an identified service need.  Priority shall
17    be  given  in  all  cases  to  frail,  abused or functionally
18    disabled or cognitively impaired adults.
19    (Source: P.A. 87-974.)

20        (320 ILCS 10/6) (from Ch. 23, par. 6206)
21        Sec. 6.  Responsibilities.   The  following  requirements
22    shall  apply  for  any projects authorized under Section 3 of
23    this Act:
24        (a)  The Department Director shall  administer  this  Act
25    and  shall  adopt  rules  and  standards the Department deems
26    necessary for that purpose  establish  target  areas  needing
27    respite care services.
28        (b)  The  Department  Director  shall  make  grants to or
29    contract with Area Agencies on Aging  and  other  appropriate
30    community-based  organizations  to provide respite care under
31    this Act publicize the  existence  of,  and  make  available,
 
HB0016 Engrossed            -11-              LRB9201018DJgcA
 1    application forms for sponsors seeking to establish a respite
 2    program.
 3        (c)  (Blank).  The  application  forms  shall require the
 4    following information and any other information the  Director
 5    deems necessary.
 6             (1)  Identity and qualifications of a sponsor.
 7             (2)  Identity and qualifications of a provider and a
 8        plan for the coordination of services.
 9             (3)  An  assessment  of  the community need, support
10        and participation for respite services.   The  assessment
11        shall include documentation.
12             (4)  Plans  for  the coordination and arrangement of
13        provider services in a manner that meets client needs.
14             (5)  A fiscal plan,  including  specific  provisions
15        for the utilization of existing reimbursement and funding
16        sources and the development of local financial support.
17             (6)  Plans   for  publicizing  the  purpose  of  the
18        project and the services to be provided.
19             (7)  Certification of licensure or certification  of
20        any  individual,  agency  or  family  providing a service
21        subject to licensure, or certification under State law.
22        (d)  (Blank). The Director shall review and evaluate each
23    application and  present  each  application  for  review  and
24    evaluation  by the Council on Aging established under Section
25    7 of the Illinois Act on the  Aging.   The  Council  and  the
26    Department shall approve a number of applications and, within
27    the  amounts  appropriated, award grants for the operation of
28    respite programs.
29        (e)  (Blank).  The application approved by  the  Director
30    and  the  Council  on  Aging shall be the service plan of the
31    provider.  The Director shall ensure that each  service  plan
32    is  coordinated  with the designated area agency provided for
33    in Sections 3.07 and 3.08 of the Illinois Act on  the  Aging,
34    the  local  public  health authority, and any other public or
 
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 1    private service provider to ensure that every effort will  be
 2    made   to   utilize  existing  funding  sources  and  service
 3    providers and to avoid unnecessary duplication of services.
 4        (f)  Nothing in this Act shall  be  construed  to  limit,
 5    modify,  or  otherwise  affect  the  provision  of  long-term
 6    in-home  services  under  Section 4.02 of the Illinois Act on
 7    the Aging.
 8    (Source: P.A. 87-974.)

 9        (320 ILCS 10/8) (from Ch. 23, par. 6208)
10        Sec. 8. Funding.  Services  Respite  projects  authorized
11    under  this  Act  shall  be  funded  only  to  the  extent of
12    available appropriations for such purposes.  The Director may
13    shall seek and obtain State and federal  funds  that  may  be
14    available  to  finance  respite  care  grants  awarded  under
15    Section  6  of  this  Act, and may shall also seek and obtain
16    other  non-state  resources  for  which  the  State  may   be
17    eligible.  Implementation of projects under this Act shall be
18    contingent   upon   the  availability  of  federal  financial
19    participation.  To the extent necessary for implementation of
20    this Act, The Department may shall seek  appropriate  waivers
21    of  federal  requirements  from the U.S. Department of Health
22    and Human Services.
23    (Source: P.A. 87-974.)

24        (320 ILCS 10/11) (from Ch. 23, par. 6211)
25        Sec. 11.  Respite Care Worker Training.
26        (a)  A respite care  worker  shall  be  an  appropriately
27    trained  individual  whose  duty  it  is  to  provide in-home
28    supervision  and  assistance  to  a  frail   or   abused   or
29    functionally  disabled or cognitively impaired older adult in
30    order to allow the primary care-giver a break from his or her
31    continuous care-giving responsibilities.
32        (b)  The  Director   may   prescribe   minimum   training
 
HB0016 Engrossed            -13-              LRB9201018DJgcA
 1    guidelines  standards for respite care workers to ensure that
 2    the special needs of persons receiving  services  under  this
 3    Act  and  their primary caregivers will be met.  The Director
 4    may designate Alzheimer's disease associations and  community
 5    agencies  to  conduct  such  training.   Nothing  in this Act
 6    should be construed to  exempt  any  individual  providing  a
 7    service subject to licensure or certification under State law
 8    from these requirements.
 9    (Source: P.A. 87-974.)

10        (320 ILCS 10/12) (from Ch. 23, par. 6212)
11        Sec.  12.  Annual  Report.   The  Director shall submit a
12    report each year to the Governor  and  the  General  Assembly
13    detailing  the progress of the respite care services provided
14    programs established  under  this  Act.    The  report  shall
15    include:
16        (a)  a financial report for each program;
17        (b)  a  qualitative and quantitative profile of sponsors,
18    providers, care-givers and recipients  participating  in  the
19    program;
20        (c)  a   comparative   assessment   of   the   costs  and
21    effectiveness of each  service  or  combination  of  services
22    provided;
23        (d)  an assessment of the nature and extent of the demand
24    for services; and
25        (e)  an  evaluation  of the success of programs receiving
26    grants for services.
27    (Source: P.A. 87-974.)

28        (320 ILCS 10/7 rep.)
29        (320 ILCS 10/9 rep.)
30        (320 ILCS 10/10 rep.)
31        Section  91.  The  Respite  Program  Act  is  amended  by
32    repealing Sections 7, 9, and 10.
 
HB0016 Engrossed            -14-              LRB9201018DJgcA
 1        Section 99.  Effective date.  This Act takes effect  upon
 2    becoming law.

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