Illinois General Assembly - Full Text of HB1102
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Full Text of HB1102  93rd General Assembly

HB1102ham002 93rd General Assembly



                                     LRB093 02667 DRJ 12999 a

 1                    AMENDMENT TO HOUSE BILL 1102

 2        AMENDMENT NO.     .  Amend House Bill 1102  by  replacing
 3    the 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-      LRB093 02667 DRJ 12999 a
 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    and grandparents or other older individuals who are  relative
22    caregivers,   who  are  informal  providers  of  in-home  and
23    community care to older individuals or children.
24        Services  provided  under  this  program  shall  do   the
25    following:
26             (1)  Provide  information,  relief,  and  support to
27        family and other unpaid caregivers of  older  individuals
28        and children.
29             (2)  Encourage  family  members  to provide care for
30        their  family  members  who  are  older  individuals  and
31        children.
32             (3)  Provide temporary substitute  support  services
33        or  living  arrangements  to  allow a period of relief or
                            -3-      LRB093 02667 DRJ 12999 a
 1        rest for caregivers.
 2             (4)  Be provided in the  least  restrictive  setting
 3        available consistent with the individually assessed needs
 4        of older individuals and children.
 5             (5)  Include  services  appropriate  to the needs of
 6        family members caring for older individuals and children,
 7        including older individuals with dementia.
 8             (6)  Provide family caregivers  with  services  that
 9        enable  them to make informed decisions about current and
10        future care plans, solve day-to-day caregiving  problems,
11        learn  essential  care giving skills, and locate services
12        that may strengthen their capacity to provide care.

13        Section 15.  Definitions.  In this Act:
14        "Caregiver" or "family caregiver" means an  adult  family
15    member  or another individual, who is an informal provider of
16    in-home and community care  to  an  older  individual,  or  a
17    grandparent or older individual who is a relative caregiver.
18        "Child"  or "children" means an individual or individuals
19    18 years of age or under.
20        "Department" means the Department on Aging.
21        "Eligible participant" means  a  family  caregiver  or  a
22    grandparent or older individual who is a relative caregiver.
23        "Family  caregiver support services" includes, but is not
24    limited to, the following:
25             (1)  Information  to  caregivers   about   available
26        services.
27             (2)  Assistance  to  caregivers in gaining access to
28        the services.
29             (3)  Individual counseling, organization of  support
30        groups,  and  caregiver training for caregivers to assist
31        the caregivers in making decisions and  solving  problems
32        relating to their caregiving roles.
33             (4)  Respite   care   to  enable  caregivers  to  be
                            -4-      LRB093 02667 DRJ 12999 a
 1        temporarily    relieved     from     their     caregiving
 2        responsibilities.
 3             (5)  Supplemental  services,  on a limited basis, to
 4        complement the care provided by the caregivers.
 5             (6)  Other services as identified by the  Department
 6        and defined by rule.
 7        "Frail  individual"  means  an  older  individual  who is
 8    determined to be functionally impaired because the individual
 9    (i) is unable to perform from at least 2 activities of  daily
10    living without substantial human assistance, including verbal
11    reminding,  physical  cueing, or supervision or (ii) due to a
12    cognitive or other mental  impairment,  requires  substantial
13    supervision  because  the individual behaves in a manner that
14    poses a serious health or safety hazard to the individual  or
15    to another individual.
16        "Grandparent  or  older  individual  who  is  a  relative
17    caregiver"  means  a  grandparent  or  step-grandparent  of a
18    child, or a relative of a child by blood or marriage, who:
19             (1)  lives with the child;
20             (2)  is the primary caregiver for the child  because
21        the  child's biological or adoptive parents are unable or
22        unwilling to serve  as  the  primary  caregiver  for  the
23        child; and
24             (3)  has  a legal relationship to the child, such as
25        legal custody or guardianship, or is  raising  the  child
26        informally.
27        "Informal  provider"  means  an  individual  who  is  not
28    compensated for the care he or she provides.
29        "Older individual" means an individual who is 60 years of
30    age  or  older,  except for a grandparent or older individual
31    who is a relative caregiver.
32        "Respite  care"  means  substitute  supports  or   living
33    arrangements  provided  on an intermittent, occasional basis.
34    The term includes, but is not  limited  to,  in-home  respite
                            -5-      LRB093 02667 DRJ 12999 a
 1    care, adult day care, child care, and institutional care. The
 2    term  also  includes  respite care as defined in Section 2 of
 3    the Respite Program Act to the extent that such services  are
 4    allowable  and  participants  are eligible under the National
 5    Family Caregiver Support Program.

 6        Section 16.  Family caregiver demonstration  grant.   The
 7    Department  shall  seek federal funding for the establishment
 8    and assessment of a Family  Caregiver  Training  and  Support
 9    Demonstration Project. The Department is authorized to fund 2
10    sites, one in a rural community and one in a more urban area.
11    The  Department shall adopt rules governing participation and
12    oversight  of  the  program.    The  Department  shall   seek
13    technical  assistance  from  the Department of Public Aid and
14    the Department  of  Human  Services.   The  Department  shall
15    advise  the  Governor  and the General Assembly regarding the
16    effectiveness of  the  program  within  6  months  after  the
17    conclusion of the demonstration period.

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

30        Section 25.  Provision of services.  The Department shall
31    contract with area agencies on aging  and  other  appropriate
                            -6-      LRB093 02667 DRJ 12999 a
 1    agencies  to conduct family caregiver support services to the
 2    extent of  available  State  and  federal  funding.  Services
 3    provided  under  this  Act  must be provided according to the
 4    requirements  of  federal  law  and  rules,  except  for  the
 5    provision of services to grandparents  or  older  individuals
 6    who are relative caregivers when State funding is utilized to
 7    provide those services.

 8        Section  30.  Eligibility  for  respite  and supplemental
 9    services.  When a family caregiver is providing  in-home  and
10    community  care  to an older individual, the older individual
11    must be a frail individual as defined in this  Act  in  order
12    for  the  family  caregiver to be eligible to receive respite
13    and supplemental services.

14        Section 35.  Health care practitioners and facilities not
15    impaired. Nothing in this Act shall impair  the  practice  of
16    any licensed health care practitioner or licensed health care
17    facility.

18        Section 40.  Entitlement not created; funding; waivers.
19        (a)  Nothing   in   this  Act  creates  or  provides  any
20    individual with an entitlement to services or benefits. It is
21    the General Assembly's intent that services  under  this  Act
22    shall   be   made   available  only  to  the  extent  of  the
23    availability and level of appropriations made by the  General
24    Assembly.
25        (b)  The  Director  may seek and obtain State and federal
26    funds that may be available to finance  services  under  this
27    Act,  and  may also seek and obtain other non-State resources
28    for which the State may be eligible.
29        (c)  The  Department  may  seek  appropriate  waivers  of
30    federal requirements from the U.S. Department of  Health  and
31    Human Services.
                            -7-      LRB093 02667 DRJ 12999 a
 1        Section  90.  The  Respite  Program  Act  is  amended  by
 2    changing  Sections  1.5,  2,  3,  4,  5,  6, 8, 11, and 12 as
 3    follows:

 4        (320 ILCS 10/1.5) (from Ch. 23, par. 6201.5)
 5        Sec. 1.5.  Purpose.  It is hereby found and determined by
 6    the General Assembly that respite care  provides  relief  and
 7    support  to  the  primary  care-giver of a frail or abused or
 8    functionally disabled or cognitively impaired older adult and
 9    provides by providing a break  for  the  caregiver  from  the
10    continuous  responsibilities  of  care-giving.   Without this
11    support, the primary care-giver's ability to continue in  his
12    or her role would be jeopardized; thereby increasing the risk
13    of   institutionalization   of   the   frail   or  abused  or
14    functionally disabled or cognitively impaired older adult.
15        By providing improving and expanding the in-home  respite
16    care   services   currently  available  through  intermittent
17    planned or emergency relief  to  the  care-giver  during  the
18    regular  week-day,  evening,  and  weekend  hours,  both  the
19    special  physical  and  psychological  needs  of  the primary
20    care-giver and the frail or abused or functionally  disabled,
21    or  cognitively impaired older adult, who is the recipient of
22    continuous care, shall be met reducing or preventing the need
23    for institutionalization.
24        Furthermore, the primary care-giver providing  continuous
25    care   is  frequently  under  substantial  financial  stress.
26    Respite  care  and  other  supportive  services  sustain  and
27    preserve the primary care-giver and family  caregiving  unit.
28    It is the intent of the General Assembly that this amendatory
29    Act of 1992 ensure that Illinois primary care-givers of frail
30    or  abused  or  functionally disabled or cognitively impaired
31    older adults have access to affordable,  appropriate  in-home
32    respite care services.
33    (Source: P.A. 87-974.)
                            -8-      LRB093 02667 DRJ 12999 a
 1        (320 ILCS 10/2) (from Ch. 23, par. 6202)
 2        Sec. 2.  Definitions.  As used in this Act:
 3        (1)  "Respite  care"  means the provision of intermittent
 4    and temporary substitute care  or  supervision  of  frail  or
 5    abused or functionally disabled or cognitively impaired older
 6    adults  on  behalf  of  and  in  the  absence  of the primary
 7    care-giver, for the purpose  of  providing  relief  from  the
 8    stress   or   responsibilities   concomitant  with  providing
 9    constant care, so as to enable the care-giver to continue the
10    provision of care  in  the  home.   Respite  care  should  be
11    available  to  sustain  the primary care-giver throughout the
12    period of care-giving, which can vary from several months  to
13    a  number of years. Respite care can be provided in the home,
14    in a  community  based  day  care  setting  during  the  day,
15    overnight,  in  a  substitute  residential  setting such as a
16    long-term care facility  required to be  licensed  under  the
17    Nursing  Home  Care  Act  or  the  Assisted Living and Shared
18    Housing Act, or for  more  extended  periods  of  time  on  a
19    temporary basis.
20          (1.5)  "In-home respite care" means care provided by an
21    appropriately  trained  paid  worker   providing   short-term
22    intermittent care, supervision, or companionship to the frail
23    or disabled adult in the home while relieving the care-giver,
24    by  permitting  a  short-term  break  from  the  care-giver's
25    care-giving  role.  This support may contribute to the delay,
26    reduction, and prevention of institutionalization by enabling
27    the care-giver to continue in his or  her  care-giving  role.
28    In-home  respite  care  should be flexible and available in a
29    manner that is responsive to the  needs  of  the  care-giver.
30    This  may  consist  of evening respite care services that are
31    available from 6:00 p.m. to 8:00 a.m. Monday  through  Friday
32    and  weekend  respite  care services from 6:00 p.m. Friday to
33    8:00 a.m. Monday.
34        (2)  "Care-giver" shall mean the family member  or  other
                            -9-      LRB093 02667 DRJ 12999 a
 1    natural  person  who  normally  provides  the  daily  care or
 2    supervision of a frail, abused  or  disabled  elderly  adult.
 3    Such  care-giver  may,  but  need  not,  reside  in  the same
 4    household as the frail or disabled adult.
 5        (3)  (Blank). "Provider" shall mean any entity enumerated
 6    in paragraph (1) of this Section which  is  the  supplier  of
 7    services providing respite.
 8        (4)  (Blank).  "Sponsor"  shall mean the provider, public
 9    agency or community group  approved  by  the  Director  which
10    establishes  a  contractual  relationship with the Department
11    for the purposes of providing services to persons under  this
12    Act,   and  which  is  responsible  for  the  recruitment  of
13    providers,  the  coordination  and  arrangement  of  provider
14    services in a manner which meets client  needs,  the  general
15    supervision  of the local program, and the submission of such
16    information or reports as may be required by the Director.
17        (5)  (Blank).  "Director"  shall  mean  the  Director  of
18    Aging.
19        (6)  "Department" shall mean the Department on Aging.
20        (7)  (Blank).  "Abused"  shall  have  the  same   meaning
21    ascribed  to  it  in  Section  103  of  the Illinois Domestic
22    Violence Act of 1986.
23        (8)  "Frail or disabled  adult"  shall  mean  any  person
24    suffering  from Alzheimer's disease who is 60 55 years of age
25    or older and or any adult 60  years  of  age  or  older,  who
26    either  (i)  suffers  from  Alzheimer's  disease or a related
27    disorder or (ii) is unable to attend  to  his  or  her  daily
28    needs  without  the  assistance  or  regular supervision of a
29    care-giver due to mental or physical impairment  and  who  is
30    otherwise  eligible  for  services on the basis of his or her
31    level of impairment.
32        (9)  "Emergency  respite  care"   means   the   immediate
33    placement  of  a  trained, in-home respite care worker in the
34    home during an emergency or  unplanned  event,  or  during  a
                            -10-     LRB093 02667 DRJ 12999 a
 1    temporary  placement  outside the home, to substitute for the
 2    primary care-giver.  Emergency respite care may  be  provided
 3    in  the  home on one or more occasions unless an extension is
 4    deemed necessary by the case coordination unit.   When  there
 5    is  an  urgent need for emergency respite care, procedures to
 6    accommodate this need must be determined.  An emergency is:
 7             (a)  An  unplanned  event  that   results   in   the
 8        immediate   and   unavoidable   absence  of  the  primary
 9        care-giver from the home in an excess of  4  hours  at  a
10        time when no other qualified care-giver is available.
11             (b)  An   unplanned   situation  that  prevents  the
12        primary care-giver from providing the care required by  a
13        frail  or  abused or functionally disabled or cognitively
14        impaired adult living at home.
15             (c)  An unplanned event that  threatens  the  health
16        and safety of the frail or disabled adult.
17             (d)  An  unplanned  event  that threatens the health
18        and safety of the primary care-giver thereby placing  the
19        frail  or  abused or functionally disabled or cognitively
20        impaired older adult in danger.
21        (10)  (Blank). "Primary  care-giver"  means  the  spouse,
22    relative,  or  friend, 18 years of age or older, who provides
23    the daily in-home care and supervision of a frail  or  abused
24    or functionally disabled or cognitively impaired older adult.
25    A primary care-giver may, but does not need to, reside in the
26    same  household  as  the  frail  or  abused  or  functionally
27    disabled  or cognitively impaired adult. A primary care-giver
28    requires intermittent  relief  from  his  or  her  caregiving
29    duties to continue to function as the primary care-giver.
30    (Source: P.A. 91-357, eff. 7-29-99; 92-16, eff. 6-28-01.)

31        (320 ILCS 10/3) (from Ch. 23, par. 6203)
32        Sec.   3.  Respite   Program.   The  Director  is  hereby
33    authorized to  administer  a  program  of  establish  respite
                            -11-     LRB093 02667 DRJ 12999 a
 1    projects for the purposes of providing care and assistance to
 2    persons  in  need  and  to  deter the institutionalization of
 3    frail or disabled or  functionally  disabled  or  cognitively
 4    impaired adults.
 5    (Source: P.A. 87-974.)

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

12        (320 ILCS 10/5) (from Ch. 23, par. 6205)
13        Sec.   5.  Eligibility.   The  Department  may  establish
14    eligibility  standards  for  respite  services  taking   into
15    consideration  the  unique  economic  and social needs of the
16    population for whom they are to be provided.  The  population
17    identified  for  the  purposes  of  this Act includes persons
18    suffering from Alzheimer's disease or a related disorder  and
19    persons  who  are 60 55 years of age or older, or persons age
20    60 and older with an identified service need.  Priority shall
21    be given in  all  cases  to  frail,  abused  or  functionally
22    disabled or cognitively impaired adults.
23    (Source: P.A. 87-974.)

24        (320 ILCS 10/6) (from Ch. 23, par. 6206)
25        Sec.  6.  Responsibilities.   The  following requirements
26    shall apply for any projects authorized under  Section  3  of
27    this Act:
28        (a)  The  Department  Director  shall administer this Act
29    and shall adopt rules  and  standards  the  Department  deems
30    necessary  for  that  purpose  establish target areas needing
31    respite care services.
                            -12-     LRB093 02667 DRJ 12999 a
 1        (b)  The Department Director  shall  make  grants  to  or
 2    contract  with  Area  Agencies on Aging and other appropriate
 3    community-based organizations to provide respite  care  under
 4    this  Act  publicize  the  existence  of, and make available,
 5    application forms for sponsors seeking to establish a respite
 6    program.
 7        (c)  (Blank). The application  forms  shall  require  the
 8    following  information and any other information the Director
 9    deems necessary.
10             (1)  Identity and qualifications of a sponsor.
11             (2)  Identity and qualifications of a provider and a
12        plan for the coordination of services.
13             (3)  An assessment of the  community  need,  support
14        and  participation  for respite services.  The assessment
15        shall include documentation.
16             (4)  Plans for the coordination and  arrangement  of
17        provider services in a manner that meets client needs.
18             (5)  A  fiscal  plan,  including specific provisions
19        for the utilization of existing reimbursement and funding
20        sources and the development of local financial support.
21             (6)  Plans  for  publicizing  the  purpose  of   the
22        project and the services to be provided.
23             (7)  Certification  of licensure or certification of
24        any individual, agency  or  family  providing  a  service
25        subject to licensure, or certification under State law.
26        (d)  (Blank). The Director shall review and evaluate each
27    application  and  present  each  application  for  review and
28    evaluation by the Council on Aging established under  Section
29    7  of  the  Illinois  Act  on the Aging.  The Council and the
30    Department shall approve a number of applications and, within
31    the amounts appropriated, award grants for the  operation  of
32    respite programs.
33        (e)  (Blank).   The  application approved by the Director
34    and the Council on Aging shall be the  service  plan  of  the
                            -13-     LRB093 02667 DRJ 12999 a
 1    provider.   The  Director shall ensure that each service plan
 2    is coordinated with the designated area agency  provided  for
 3    in  Sections  3.07 and 3.08 of the Illinois Act on the Aging,
 4    the local public health authority, and any  other  public  or
 5    private  service provider to ensure that every effort will be
 6    made  to  utilize  existing  funding  sources   and   service
 7    providers and to avoid unnecessary duplication of services.
 8        (f)  Nothing  in  this  Act  shall be construed to limit,
 9    modify,  or  otherwise  affect  the  provision  of  long-term
10    in-home services under Section 4.02 of the  Illinois  Act  on
11    the Aging.
12    (Source: P.A. 87-974.)

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

28        (320 ILCS 10/11) (from Ch. 23, par. 6211)
29        Sec. 11.  Respite Care Worker Training.
30        (a)  A  respite  care  worker  shall  be an appropriately
31    trained individual  whose  duty  it  is  to  provide  in-home
32    supervision   and   assistance   to  a  frail  or  abused  or
                            -14-     LRB093 02667 DRJ 12999 a
 1    functionally disabled or cognitively impaired older adult  in
 2    order to allow the primary care-giver a break from his or her
 3    continuous care-giving responsibilities.
 4        (b)  The   Director   may   prescribe   minimum  training
 5    guidelines standards for respite care workers to ensure  that
 6    the  special  needs  of persons receiving services under this
 7    Act and their primary caregivers will be met.   The  Director
 8    may  designate Alzheimer's disease associations and community
 9    agencies to conduct  such  training.   Nothing  in  this  Act
10    should  be  construed  to  exempt  any individual providing a
11    service subject to licensure or certification under State law
12    from these requirements.
13    (Source: P.A. 87-974.)

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

32        (320 ILCS 10/7 rep.)
                            -15-     LRB093 02667 DRJ 12999 a
 1        (320 ILCS 10/9 rep.)
 2        (320 ILCS 10/10 rep.)
 3        Section  91.  The  Respite  Program  Act  is  amended  by
 4    repealing Sections 7, 9, and 10.

 5        Section  99.  Effective date.  This Act takes effect upon
 6    becoming law.".