093_HB1196

 
                                     LRB093 03979 DRJ 07470 b

 1        AN ACT in relation to aging.

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

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

 6        Section 5.  Legislative findings.  The  General  Assembly
 7    recognizes the following:
 8             (1)  Family      caregivers,     serving     without
 9        compensation, have been the  mainstay  of  the  long-term
10        care  system  in  this  country.   Care provided by these
11        informal  caregivers  is  the  most  crucial  factor   in
12        avoiding   or   postponing  institutionalization  of  the
13        State's residents.
14             (2)  Among  non-institutionalized  persons   needing
15        assistance  with  personal  care needs, two-thirds depend
16        solely on family and friends for assistance.  Another 25%
17        supplement family care with services from paid providers.
18        Only a little more  than  5%  rely  exclusively  on  paid
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  16.  Family  caregiver demonstration grant.  The
24    Department shall seek federal funding for  the  establishment
25    and  assessment  of  a  Family Caregiver Training and Support
26    Demonstration Project using residential  facilities  licensed
27    under   the   Nursing  Home  Care  Act.   The  Department  is
28    authorized to fund 2 sites, one in a rural community and  one
29    in  a  more  urban  area.   The  Department shall adopt rules
30    governing participation and oversight of the  program.    The
31    Department   shall   seek   technical   assistance  from  the
32    Department of Public Aid.  The Department  shall  advise  the
33    Governor and the General Assembly regarding the effectiveness
 
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 1    of  the  program  within 6 months after the conclusion of the
 2    demonstration period.

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

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

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

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

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

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

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

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

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

21        (320 ILCS 10/5) (from Ch. 23, par. 6205)
22        Sec.  5.  Eligibility.   The  Department  may   establish
23    eligibility   standards  for  respite  services  taking  into
24    consideration the unique economic and  social  needs  of  the
25    population  for  whom they are to be provided. The population
26    identified for the purposes  of  this  Act  includes  persons
27    suffering  from Alzheimer's disease or a related disorder and
28    persons who are 60 55 years of age or older, or  persons  age
29    60 and older with an identified service need.  Priority shall
30    be  given  in  all  cases  to  frail,  abused or functionally
31    disabled or cognitively impaired adults.
 
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 1    (Source: P.A. 87-974.)

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

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

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

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

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

14        Section 99.  Effective date.  This Act takes effect  upon
15    becoming law.