State of Illinois
92nd General Assembly
Legislation

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92_HB0016ham001

 










                                           LRB9201018DJmbam02

 1                     AMENDMENT TO HOUSE BILL 16

 2        AMENDMENT NO.     .  Amend House Bill 16 by replacing the
 3    title with the following:
 4        "AN ACT in relation to aging."; and

 5    by replacing everything after the enacting  clause  with  the
 6    following:

 7        "Section  1.  Short  title.  This Act may be cited as the
 8    Family Caregiver Act.

 9        Section 5.  Legislative findings.  The  General  Assembly
10    recognizes the following:
11             (1)  Family      caregivers,     serving     without
12        compensation, have been the  mainstay  of  the  long-term
13        care  system  in  this  country.   Care provided by these
14        informal  caregivers  is  the  most  crucial  factor   in
15        avoiding   or   postponing  institutionalization  of  the
16        State's residents.
17             (2)  Among  non-institutionalized  persons   needing
18        assistance  with  personal  care needs, two-thirds depend
19        solely on family and friends for assistance.  Another 25%
20        supplement family care with services from paid providers.
21        Only a little more  than  5%  rely  exclusively  on  paid
 
                            -2-            LRB9201018DJmbam02
 1        services.
 2             (3)  Family    caregivers   are   frequently   under
 3        substantial  physical,   psychological,   and   financial
 4        stress.   Unrelieved by support services available to the
 5        caregiver,  this  stress  may  lead   to   premature   or
 6        unnecessary institutionalization of the care recipient or
 7        deterioration   in   the   health  condition  and  family
 8        circumstances of the caregiver.
 9             (4)  Two out of 3 family caregivers,  due  to  being
10        employed  outside the home, experience additional stress.
11        Two-thirds of working caregivers report conflicts between
12        work and caregiving, requiring them  to  rearrange  their
13        work  schedules, work fewer than normal hours, or take an
14        unpaid leave of absence. For this  population,  caregiver
15        support  services  have  the  added  benefit  of allowing
16        family caregivers to remain active members of our State's
17        workforce.

18        Section 10.  Legislative intent. It is the intent of  the
19    General   Assembly   to   establish  a  multi-faceted  family
20    caregiver support program to assist unpaid family caregivers,
21    who are informal providers of in-home and community  care  to
22    frail individuals or children.
23        Services   provided  under  this  program  shall  do  the
24    following:
25             (1)  Provide information,  relief,  and  support  to
26        family and other unpaid caregivers of frail individuals.
27             (2)  Encourage  family  members  to provide care for
28        their family members who are frail individuals.
29             (3)  Provide temporary substitute  support  services
30        or  living  arrangements  to  allow a period of relief or
31        rest for caregivers.
32             (4)  Be provided in the  least  restrictive  setting
33        available consistent with the individually assessed needs
 
                            -3-            LRB9201018DJmbam02
 1        of the frail individual.
 2             (5)  Include  services  appropriate  to the needs of
 3        family members caring for the frail individual, including
 4        a frail individual with dementia.
 5             (6)  Provide family caregivers  with  services  that
 6        enable  them to make informed decisions about current and
 7        future care plans, solve day-to-day caregiving  problems,
 8        learn  essential  care giving skills, and locate services
 9        that may strengthen their capacity to provide care.

10        Section 15.  Definitions.  In this Act:
11        "Child" or "children" means an individual or  individuals
12    18 years of age or under.
13        "Department" means the Department on Aging.
14        "Eligible  participant"  means  a  family  caregiver or a
15    grandparent or older individual who is a relative caregiver.
16        "Family caregiver"  means  an  adult  family  member,  or
17    another  individual,  who  is an informal provider of in-home
18    and community care to a frail individual.
19        "Family caregiver support services" includes, but is  not
20    limited to, the following:
21             (1)  Information   to   caregivers  about  available
22        services.
23             (2)  Assistance to caregivers in gaining  access  to
24        the services.
25             (3)  Individual  counseling, organization of support
26        groups, and caregiver training for caregivers  to  assist
27        the  caregivers  in making decisions and solving problems
28        relating to their caregiving roles.
29             (4)  Respite care provided  to  a  frail  individual
30        that  will  enable  caregivers to be temporarily relieved
31        from their caregiving responsibilities.
32             (5)  Supplemental services, on a limited  basis,  to
33        complement the care provided by the caregivers.
 
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 1             (6)  Other  services as identified by the Department
 2        and defined by rule.
 3        "Frail individual"  means  an  older  individual  who  is
 4    determined to be functionally impaired because the individual
 5    (i)  is unable to perform from at least 2 activities of daily
 6    living without substantial human assistance, including verbal
 7    reminding, physical cueing, or supervision or (ii) due  to  a
 8    cognitive  or  other  mental impairment, requires substantial
 9    supervision because the individual behaves in a  manner  that
10    poses  a serious health or safety hazard to the individual or
11    to another individual.
12        "Grandparent  or  older  individual  who  is  a  relative
13    caregiver" means  a  grandparent  or  step-grandparent  of  a
14    child,  or a relative of a child by blood or marriage, who is
15    60 years of age or older and who:
16             (1)  lives with the child;
17             (2)  is the caregiver  for  the  child  because  the
18        child's  biological  or  adoptive  parents  are unable or
19        unwilling to serve  as  the  primary  caregiver  for  the
20        child; and
21             (3)  has  a legal relationship to the child, such as
22        legal custody or guardianship, or is  raising  the  child
23        informally.
24        "Informal  provider"  means  an  individual  who  is  not
25    compensated for the care he or she provides.
26        "Older individual" means an individual who is 60 years of
27    age or older.
28        "Respite   care"  means  substitute  supports  or  living
29    arrangements provided on an intermittent,  occasional  basis.
30    The  term  includes,  but  is not limited to, in-home respite
31    care, adult day care, child care, and institutional care. The
32    term also includes respite care as defined in  Section  2  of
33    the  Respite Program Act to the extent that such services are
34    allowable and participants are eligible  under  the  National
 
                            -5-            LRB9201018DJmbam02
 1    Family Caregiver Support Program.

 2        Section  20.  Powers  and  duties of the Department.  The
 3    Department shall administer this Act and  shall  adopt  rules
 4    and   standards  the  Department  deems  necessary  for  that
 5    purpose. At  a  minimum,  those  rules  and  standards  shall
 6    address the following:
 7             (1)  Standards and mechanisms designed to ensure the
 8        quality   of   services  provided  with  assistance  made
 9        available under this Act.
10             (2)  Data collection and record maintenance.
11        The Department shall administer this Act in  coordination
12    with  Section 4.02 and related provisions of the Illinois Act
13    on the Aging.

14        Section 25.  Provision of services.  The Department shall
15    contract with area agencies on aging  and  other  appropriate
16    agencies  to conduct family caregiver support services to the
17    extent of  available  State  and  federal  funding.  Services
18    provided  under  this  Act  must be provided according to the
19    requirements of federal law and rules.

20        Section 35.  Health care practitioners and facilities not
21    impaired. Nothing in this Act shall impair  the  practice  of
22    any licensed health care practitioner or licensed health care
23    facility.

24        Section 40.  Entitlement not created; funding; waivers.
25        (a)  Nothing   in   this  Act  creates  or  provides  any
26    individual with an entitlement to services or benefits. It is
27    the General Assembly's intent that services  under  this  Act
28    shall   be   made   available  only  to  the  extent  of  the
29    availability and level of appropriations made by the  General
30    Assembly.
 
                            -6-            LRB9201018DJmbam02
 1        (b)  The  Director  may seek and obtain State and federal
 2    funds that may be available to finance  services  under  this
 3    Act,  and  may also seek and obtain other non-State resources
 4    for which the State may be eligible.
 5        (c)  The  Department  may  seek  appropriate  waivers  of
 6    federal requirements from the U.S. Department of  Health  and
 7    Human Services.

 8        Section  90.  The  Respite  Program  Act  is  amended  by
 9    changing  Sections  1.5,  2,  3, 4, 5, 6, 7, 8, 11, and 12 as
10    follows:

11        (320 ILCS 10/1.5) (from Ch. 23, par. 6201.5)
12        Sec. 1.5.  Purpose.  It is hereby found and determined by
13    the General Assembly that respite care  provides  relief  and
14    support  to  the  primary  care-giver of a frail or abused or
15    functionally disabled or cognitively impaired older adult and
16    provides by providing a break  for  the  caregiver  from  the
17    continuous  responsibilities  of  care-giving.   Without this
18    support, the primary care-giver's ability to continue in  his
19    or her role would be jeopardized; thereby increasing the risk
20    of   institutionalization   of   the   frail   or  abused  or
21    functionally disabled or cognitively impaired older adult.
22        By providing improving and expanding the in-home  respite
23    care   services   currently  available  through  intermittent
24    planned or emergency relief  to  the  care-giver  during  the
25    regular  week-day,  evening,  and  weekend  hours,  both  the
26    special  physical  and  psychological  needs  of  the primary
27    care-giver and the frail or abused or functionally  disabled,
28    or  cognitively impaired older adult, who is the recipient of
29    continuous care, shall be met reducing or preventing the need
30    for institutionalization.
31        Furthermore, the primary care-giver providing  continuous
32    care   is  frequently  under  substantial  financial  stress.
 
                            -7-            LRB9201018DJmbam02
 1    Respite  care  and  other  supportive  services  sustain  and
 2    preserve the primary care-giver and family  caregiving  unit.
 3    It is the intent of the General Assembly that this amendatory
 4    Act of 1992 ensure that Illinois primary care-givers of frail
 5    or  abused  or  functionally disabled or cognitively impaired
 6    older adults have access to affordable,  appropriate  in-home
 7    respite care services.
 8    (Source: P.A. 87-974.)

 9        (320 ILCS 10/2) (from Ch. 23, par. 6202)
10        Sec. 2.  Definitions.  As used in this Act:
11        (1)  "Respite  care"  means the provision of intermittent
12    and temporary substitute care  or  supervision  of  frail  or
13    abused or functionally disabled or cognitively impaired older
14    adults  on  behalf  of  and  in  the  absence  of the primary
15    care-giver, for the purpose  of  providing  relief  from  the
16    stress   or   responsibilities   concomitant  with  providing
17    constant care, so as to enable the care-giver to continue the
18    provision of care  in  the  home.   Respite  care  should  be
19    available  to  sustain  the primary care-giver throughout the
20    period of care-giving, which can vary from several months  to
21    a  number of years. Respite care can be provided in the home,
22    in a  community  based  day  care  setting  during  the  day,
23    overnight,  in  a  substitute  residential  setting such as a
24    long-term care facility required to  be  licensed  under  the
25    Nursing  Home  Care  Act  or  the  Assisted Living and Shared
26    Housing Act, or for  more  extended  periods  of  time  on  a
27    temporary basis.
28        (1.5)  "In-home  respite  care" means care provided by an
29    appropriately  trained  paid  worker   providing   short-term
30    intermittent care, supervision, or companionship to the frail
31    or disabled adult in the home while relieving the care-giver,
32    by  permitting  a  short-term  break  from  the  care-giver's
33    care-giving  role.  This support may contribute to the delay,
 
                            -8-            LRB9201018DJmbam02
 1    reduction, and prevention of institutionalization by enabling
 2    the care-giver to continue in his or  her  care-giving  role.
 3    In-home  respite  care  should be flexible and available in a
 4    manner that is responsive to the  needs  of  the  care-giver.
 5    This  may  consist  of evening respite care services that are
 6    available from 6:00 p.m. to 8:00 a.m. Monday  through  Friday
 7    and  weekend  respite  care services from 6:00 p.m. Friday to
 8    8:00 a.m. Monday.
 9        (2)  "Care-giver" shall mean the family member  or  other
10    natural  person  who  normally  provides  the  daily  care or
11    supervision of a frail, abused  or  disabled  elderly  adult.
12    Such  care-giver  may,  but  need  not,  reside  in  the same
13    household as the frail or disabled adult.
14        (3)  (Blank). "Provider" shall mean any entity enumerated
15    in paragraph (1) of this Section which  is  the  supplier  of
16    services providing respite.
17        (4)  (Blank).  "Sponsor"  shall mean the provider, public
18    agency or community group  approved  by  the  Director  which
19    establishes  a  contractual  relationship with the Department
20    for the purposes of providing services to persons under  this
21    Act,   and  which  is  responsible  for  the  recruitment  of
22    providers,  the  coordination  and  arrangement  of  provider
23    services in a manner which meets client  needs,  the  general
24    supervision  of the local program, and the submission of such
25    information or reports as may be required by the Director.
26        (5)  (Blank).  "Director"  shall  mean  the  Director  on
27    Aging.
28        (6)  "Department" shall mean the Department on Aging.
29        (7)  (Blank).  "Abused"  shall  have  the  same   meaning
30    ascribed  to  it  in  Section  103  of  the Illinois Domestic
31    Violence Act of 1986.
32        (8)  "Frail or disabled  adult"  shall  mean  any  person
33    suffering  from Alzheimer's disease and who is 60 55 years of
34    age or older and or any adult 60 years of age or  older,  who
 
                            -9-            LRB9201018DJmbam02
 1    either  (i)  suffers  from  Alzheimer's  disease or a related
 2    disorder or (ii) is unable to attend  to  his  or  her  daily
 3    needs  without  the  assistance  or  regular supervision of a
 4    care-giver due to mental or physical impairment  and  who  is
 5    otherwise  eligible  for  services on the basis of his or her
 6    level of impairment.
 7        (9)  "Emergency  respite  care"   means   the   immediate
 8    placement  of  a  trained, in-home respite care worker in the
 9    home during an emergency or  unplanned  event,  or  during  a
10    temporary  placement  outside the home, to substitute for the
11    primary care-giver.  Emergency respite care may  be  provided
12    in  the  home on one or more occasions unless an extension is
13    deemed necessary by the case coordination unit.   When  there
14    is  an  urgent need for emergency respite care, procedures to
15    accommodate this need must be determined.  An emergency is:
16             (a)  An  unplanned  event  that   results   in   the
17        immediate   and   unavoidable   absence  of  the  primary
18        care-giver from the home in an excess of  4  hours  at  a
19        time when no other qualified care-giver is available.
20             (b)  An   unplanned   situation  that  prevents  the
21        primary care-giver from providing the care required by  a
22        frail  or  abused or functionally disabled or cognitively
23        impaired adult living at home.
24             (c)  An unplanned event that  threatens  the  health
25        and safety of the frail or disabled adult.
26             (d)  An  unplanned  event  that threatens the health
27        and safety of the primary care-giver thereby placing  the
28        frail  or  abused or functionally disabled or cognitively
29        impaired older adult in danger.
30        (10)  (Blank). "Primary  care-giver"  means  the  spouse,
31    relative,  or  friend, 18 years of age or older, who provides
32    the daily in-home care and supervision of a frail  or  abused
33    or functionally disabled or cognitively impaired older adult.
34    A primary care-giver may, but does not need to, reside in the
 
                            -10-           LRB9201018DJmbam02
 1    same  household  as  the  frail  or  abused  or  functionally
 2    disabled  or cognitively impaired adult. A primary care-giver
 3    requires intermittent relief from their caregiving duties  to
 4    continue to function as the primary care-giver.
 5    (Source: P.A. 91-357, eff. 7-29-99; revised 2-23-00.)

 6        (320 ILCS 10/3) (from Ch. 23, par. 6203)
 7        Sec.   3.  Respite   Program.   The  Director  is  hereby
 8    authorized to  administer  a  program  of  establish  respite
 9    projects for the purposes of providing care and assistance to
10    persons  in  need  and  to  deter the institutionalization of
11    frail or disabled or  functionally  disabled  or  cognitively
12    impaired adults.
13    (Source: P.A. 87-974.)

14        (320 ILCS 10/4) (from Ch. 23, par. 6204)
15        Sec. 4.  No Limit to Care.  Nothing contained in this Act
16    shall be construed so as to limit, modify or otherwise affect
17    the provisions, for long-term in-home services being provided
18    under, of Section 4.02 of the Illinois Act on the Aging.
19    (Source: P.A. 87-974.)

20        (320 ILCS 10/5) (from Ch. 23, par. 6205)
21        Sec.   5.  Eligibility.   The  Department  may  establish
22    eligibility  standards  for  respite  services  taking   into
23    consideration  the  unique  economic  and social needs of the
24    population for whom they are to be provided.  The  population
25    identified  for  the  purposes  of  this Act includes persons
26    suffering from Alzheimer's disease or a related disorder  and
27    persons  who  are 60 55 years of age or older, or persons age
28    60 and older with an identified service need.  Priority shall
29    be given in  all  cases  to  frail,  abused  or  functionally
30    disabled or cognitively impaired adults.
31    (Source: P.A. 87-974.)
 
                            -11-           LRB9201018DJmbam02
 1        (320 ILCS 10/6) (from Ch. 23, par. 6206)
 2        Sec.  6.  Responsibilities.   The  following requirements
 3    shall apply for any projects authorized under  Section  3  of
 4    this Act:
 5        (a)  The  Department  Director  shall administer this Act
 6    and shall adopt rules  and  standards  the  Department  deems
 7    necessary  for  that  purpose  establish target areas needing
 8    respite care services.
 9        (b)  The Department Director  shall  make  grants  to  or
10    contract  with  Area  Agencies on Aging and other appropriate
11    community-based organizations to provide respite  care  under
12    this  Act  publicize  the  existence  of, and make available,
13    application forms for sponsors seeking to establish a respite
14    program.
15        (c)  (Blank). The application  forms  shall  require  the
16    following  information and any other information the Director
17    deems necessary.
18             (1)  Identity and qualifications of a sponsor.
19             (2)  Identity and qualifications of a provider and a
20        plan for the coordination of services.
21             (3)  An assessment of the  community  need,  support
22        and  participation  for respite services.  The assessment
23        shall include documentation.
24             (4)  Plans for the coordination and  arrangement  of
25        provider services in a manner that meets client needs.
26             (5)  A  fiscal  plan,  including specific provisions
27        for the utilization of existing reimbursement and funding
28        sources and the development of local financial support.
29             (6)  Plans  for  publicizing  the  purpose  of   the
30        project and the services to be provided.
31             (7)  Certification  of licensure or certification of
32        any individual, agency  or  family  providing  a  service
33        subject to licensure, or certification under State law.
34        (d)  (Blank). The Director shall review and evaluate each
 
                            -12-           LRB9201018DJmbam02
 1    application  and  present  each  application  for  review and
 2    evaluation by the Council on Aging established under  Section
 3    7  of  the  Illinois  Act  on the Aging.  The Council and the
 4    Department shall approve a number of applications and, within
 5    the amounts appropriated, award grants for the  operation  of
 6    respite programs.
 7        (e)  (Blank).   The  application approved by the Director
 8    and the Council on Aging shall be the  service  plan  of  the
 9    provider.   The  Director shall ensure that each service plan
10    is coordinated with the designated area agency  provided  for
11    in  Sections  3.07 and 3.08 of the Illinois Act on the Aging,
12    the local public health authority, and any  other  public  or
13    private  service provider to ensure that every effort will be
14    made  to  utilize  existing  funding  sources   and   service
15    providers and to avoid unnecessary duplication of services.
16        (f)  Nothing  in  this  Act  shall be construed to limit,
17    modify,  or  otherwise  affect  the  provision  of  long-term
18    in-home services under Section 4.02 of the  Illinois  Act  on
19    the Aging.
20    (Source: P.A. 87-974.)

21        (320 ILCS 10/8) (from Ch. 23, par. 6208)
22        Sec.  8.  Funding.   Services Respite projects authorized
23    under this  Act  shall  be  funded  only  to  the  extent  of
24    available appropriations for such purposes.  The Director may
25    shall  seek  and  obtain  State and federal funds that may be
26    available  to  finance  respite  care  grants  awarded  under
27    Section 6 of this Act, and may shall  also  seek  and  obtain
28    other   non-state  resources  for  which  the  State  may  be
29    eligible.  Implementation of projects under this Act shall be
30    contingent  upon  the  availability  of   federal   financial
31    participation.  To the extent necessary for implementation of
32    this  Act,  The Department may shall seek appropriate waivers
33    of federal requirements from the U.S.  Department  of  Health
 
                            -13-           LRB9201018DJmbam02
 1    and Human Services.
 2    (Source: P.A. 87-974.)

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

21        (320 ILCS 10/12) (from Ch. 23, par. 6212)
22        Sec. 12.  Annual Report.  The  Director  shall  submit  a
23    report  each  year  to  the Governor and the General Assembly
24    detailing the progress of the respite care services  provided
25    programs  established  under  this  Act.    The  report shall
26    include:
27        (a)  a financial report for each program;
28        (b)  a qualitative and quantitative profile of  sponsors,
29    providers,  care-givers  and  recipients participating in the
30    program;
31        (c)  a  comparative   assessment   of   the   costs   and
32    effectiveness  of  each  service  or  combination of services
 
                            -14-           LRB9201018DJmbam02
 1    provided;
 2        (d)  an assessment of the nature and extent of the demand
 3    for services; and
 4        (e)  an evaluation of the success of  programs  receiving
 5    grants for services.
 6    (Source: P.A. 87-974.)

 7        (320 ILCS 10/7 rep.)
 8        (320 ILCS 10/9 rep.)
 9        (320 ILCS 10/10 rep.)
10        Section  91.  The  Respite  Program  Act  is  amended  by
11    repealing Sections 7, 9, and 10.

12        Section  99.  Effective date.  This Act takes effect upon
13    becoming law.".

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