093_HB1196eng

 
HB1196 Engrossed                     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
 
HB1196 Engrossed            -2-      LRB093 03979 DRJ 07470 b
 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    and  grandparents or other older individuals who are relative
 9    caregivers,  who  are  informal  providers  of  in-home   and
10    community care to older individuals or children.
11        Services   provided  under  this  program  shall  do  the
12    following:
13             (1)  Provide information,  relief,  and  support  to
14        family  and  other unpaid caregivers of older individuals
15        and children.
16             (2)  Encourage family members to  provide  care  for
17        their  family  members  who  are  older  individuals  and
18        children.
19             (3)  Provide  temporary  substitute support services
20        or living arrangements to allow a  period  of  relief  or
21        rest for caregivers.
22             (4)  Be  provided  in  the least restrictive setting
23        available consistent with the individually assessed needs
24        of older individuals and children.
25             (5)  Include services appropriate to  the  needs  of
26        family members caring for older individuals and children,
27        including older individuals with dementia.
28             (6)  Provide  family  caregivers  with services that
29        enable them to make informed decisions about current  and
30        future  care plans, solve day-to-day caregiving problems,
31        learn essential care giving skills, and  locate  services
32        that may strengthen their capacity to provide care.
 
HB1196 Engrossed            -3-      LRB093 03979 DRJ 07470 b
 1        Section 15.  Definitions.  In this Act:
 2        "Caregiver"  or  "family caregiver" means an adult family
 3    member, or another individual, who is an informal provider of
 4    in-home and community care  to  an  older  individual,  or  a
 5    grandparent or older individual who is a relative caregiver.
 6        "Child"  or "children" means an individual or individuals
 7    18 years of age or under.
 8        "Department" means the Department on Aging.
 9        "Eligible participant" means  a  family  caregiver  or  a
10    grandparent or older individual who is a relative caregiver.
11        "Family  caregiver support services" includes, but is not
12    limited to, the following:
13             (1)  Information  to  caregivers   about   available
14        services.
15             (2)  Assistance  to  caregivers in gaining access to
16        the services.
17             (3)  Individual counseling, organization of  support
18        groups,  and  caregiver training for caregivers to assist
19        the caregivers in making decisions and  solving  problems
20        relating to their caregiving roles.
21             (4)  Respite   care   to  enable  caregivers  to  be
22        temporarily    relieved     from     their     caregiving
23        responsibilities.
24             (5)  Supplemental  services,  on a limited basis, to
25        complement the care provided by the caregivers.
26             (6)  Other services as identified by the  Department
27        and defined by rule.
28        "Frail  individual"  means  an  older  individual  who is
29    determined to be functionally impaired because the individual
30    (i) is unable to perform from at least 2 activities of  daily
31    living without substantial human assistance, including verbal
32    reminding,  physical  cueing, or supervision or (ii) due to a
33    cognitive or other mental  impairment,  requires  substantial
34    supervision  because  the individual behaves in a manner that
 
HB1196 Engrossed            -4-      LRB093 03979 DRJ 07470 b
 1    poses a serious health or safety hazard to the individual  or
 2    to another individual.
 3        "Grandparent  or  older  individual  who  is  a  relative
 4    caregiver"  means  a  grandparent  or  step-grandparent  of a
 5    child, or a relative of a child by blood or marriage, who:
 6             (1)  lives with the child;
 7             (2)  is the primary caregiver for the child  because
 8        the  child's biological or adoptive parents are unable or
 9        unwilling to serve  as  the  primary  caregiver  for  the
10        child; and
11             (3)  has  a legal relationship to the child, such as
12        legal custody or guardianship, or is  raising  the  child
13        informally.
14        "Informal  provider"  means  an  individual  who  is  not
15    compensated for the care he or she provides.
16        "Older individual" means an individual who is 60 years of
17    age  or  older,  except for a grandparent or older individual
18    who is a relative caregiver.
19        "Respite  care"  means  substitute  supports  or   living
20    arrangements  provided  on an intermittent, occasional basis.
21    The term includes, but is not  limited  to,  in-home  respite
22    care, adult day care, child care, and institutional care. The
23    term  also  includes  respite care as defined in Section 2 of
24    the Respite Program Act to the extent that such services  are
25    allowable  and  participants  are eligible under the National
26    Family Caregiver Support Program.

27        Section 16.  Family caregiver demonstration  grant.   The
28    Department  shall  seek federal funding for the establishment
29    and assessment of a Family  Caregiver  Training  and  Support
30    Demonstration Project. The Department is authorized to fund 2
31    sites, one in a rural community and one in a more urban area.
32    The  Department shall adopt rules governing participation and
33    oversight  of  the  program.    The  Department  shall   seek
 
HB1196 Engrossed            -5-      LRB093 03979 DRJ 07470 b
 1    technical  assistance  from  the Department of Public Aid and
 2    the Department  of  Human  Services.   The  Department  shall
 3    advise  the  Governor  and the General Assembly regarding the
 4    effectiveness of  the  program  within  6  months  after  the
 5    conclusion of the demonstration period.

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

18        Section 25.  Provision of services.  The Department shall
19    contract with area agencies on aging  and  other  appropriate
20    agencies  to conduct family caregiver support services to the
21    extent of  available  State  and  federal  funding.  Services
22    provided  under  this  Act  must be provided according to the
23    requirements  of  federal  law  and  rules,  except  for  the
24    provision of services to grandparents  or  older  individuals
25    who are relative caregivers when State funding is utilized to
26    provide those services.

27        Section  30.  Eligibility  for  respite  and supplemental
28    services. When a family caregiver is  providing  in-home  and
29    community  care  to an older individual, the older individual
30    must be a frail individual as defined in this  Act  in  order
31    for  the  family  caregiver to be eligible to receive respite
 
HB1196 Engrossed            -6-      LRB093 03979 DRJ 07470 b
 1    and supplemental services.

 2        Section 35.  Health care practitioners and facilities not
 3    impaired. Nothing in this Act shall impair  the  practice  of
 4    any licensed health care practitioner or licensed health care
 5    facility.

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

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

23        (320 ILCS 10/1.5) (from Ch. 23, par. 6201.5)
24        Sec. 1.5.  Purpose.  It is hereby found and determined by
25    the General Assembly that respite care  provides  relief  and
26    support  to  the  primary  care-giver of a frail or abused or
27    functionally disabled or cognitively impaired older adult and
28    provides by providing a break  for  the  caregiver  from  the
29    continuous  responsibilities  of  care-giving.   Without this
30    support, the primary care-giver's ability to continue in  his
 
HB1196 Engrossed            -7-      LRB093 03979 DRJ 07470 b
 1    or her role would be jeopardized; thereby increasing the risk
 2    of   institutionalization   of   the   frail   or  abused  or
 3    functionally disabled or cognitively impaired older adult.
 4        By providing improving and expanding the in-home  respite
 5    care   services   currently  available  through  intermittent
 6    planned or emergency relief  to  the  care-giver  during  the
 7    regular  week-day,  evening,  and  weekend  hours,  both  the
 8    special  physical  and  psychological  needs  of  the primary
 9    care-giver and the frail or abused or functionally  disabled,
10    or  cognitively impaired older adult, who is the recipient of
11    continuous care, shall be met reducing or preventing the need
12    for institutionalization.
13        Furthermore, the primary care-giver providing  continuous
14    care   is  frequently  under  substantial  financial  stress.
15    Respite  care  and  other  supportive  services  sustain  and
16    preserve the primary care-giver and family  caregiving  unit.
17    It is the intent of the General Assembly that this amendatory
18    Act of 1992 ensure that Illinois primary care-givers of frail
19    or  abused  or  functionally disabled or cognitively impaired
20    older adults have access to affordable,  appropriate  in-home
21    respite care services.
22    (Source: P.A. 87-974.)

23        (320 ILCS 10/2) (from Ch. 23, par. 6202)
24        Sec. 2.  Definitions.  As used in this Act:
25        (1)  "Respite  care"  means the provision of intermittent
26    and temporary substitute care  or  supervision  of  frail  or
27    abused or functionally disabled or cognitively impaired older
28    adults  on  behalf  of  and  in  the  absence  of the primary
29    care-giver, for the purpose  of  providing  relief  from  the
30    stress   or   responsibilities   concomitant  with  providing
31    constant care, so as to enable the care-giver to continue the
32    provision of care  in  the  home.   Respite  care  should  be
33    available  to  sustain  the primary care-giver throughout the
 
HB1196 Engrossed            -8-      LRB093 03979 DRJ 07470 b
 1    period of care-giving, which can vary from several months  to
 2    a  number of years. Respite care can be provided in the home,
 3    in a  community  based  day  care  setting  during  the  day,
 4    overnight,  in  a  substitute  residential  setting such as a
 5    long-term care facility  required to be  licensed  under  the
 6    Nursing  Home  Care  Act  or  the  Assisted Living and Shared
 7    Housing Act, or for  more  extended  periods  of  time  on  a
 8    temporary basis.
 9          (1.5)  "In-home respite care" means care provided by an
10    appropriately  trained  paid  worker   providing   short-term
11    intermittent care, supervision, or companionship to the frail
12    or disabled adult in the home while relieving the care-giver,
13    by  permitting  a  short-term  break  from  the  care-giver's
14    care-giving  role.  This support may contribute to the delay,
15    reduction, and prevention of institutionalization by enabling
16    the care-giver to continue in his or  her  care-giving  role.
17    In-home  respite  care  should be flexible and available in a
18    manner that is responsive to the  needs  of  the  care-giver.
19    This  may  consist  of evening respite care services that are
20    available from 6:00 p.m. to 8:00 a.m. Monday  through  Friday
21    and  weekend  respite  care services from 6:00 p.m. Friday to
22    8:00 a.m. Monday.
23        (2)  "Care-giver" shall mean the family member  or  other
24    natural  person  who  normally  provides  the  daily  care or
25    supervision of a frail, abused  or  disabled  elderly  adult.
26    Such  care-giver  may,  but  need  not,  reside  in  the same
27    household as the frail or disabled adult.
28        (3)  (Blank). "Provider" shall mean any entity enumerated
29    in paragraph (1) of this Section which  is  the  supplier  of
30    services providing respite.
31        (4)  (Blank).  "Sponsor"  shall mean the provider, public
32    agency or community group  approved  by  the  Director  which
33    establishes  a  contractual  relationship with the Department
34    for the purposes of providing services to persons under  this
 
HB1196 Engrossed            -9-      LRB093 03979 DRJ 07470 b
 1    Act,   and  which  is  responsible  for  the  recruitment  of
 2    providers,  the  coordination  and  arrangement  of  provider
 3    services in a manner which meets client  needs,  the  general
 4    supervision  of the local program, and the submission of such
 5    information or reports as may be required by the Director.
 6        (5)  (Blank).  "Director"  shall  mean  the  Director  of
 7    Aging.
 8        (6)  "Department" shall mean the Department on Aging.
 9        (7)  (Blank).  "Abused"  shall  have  the  same   meaning
10    ascribed  to  it  in  Section  103  of  the Illinois Domestic
11    Violence Act of 1986.
12        (8)  "Frail or disabled  adult"  shall  mean  any  person
13    suffering  from Alzheimer's disease who is 60 55 years of age
14    or older and or any adult 60  years  of  age  or  older,  who
15    either  (i)  suffers  from  Alzheimer's  disease or a related
16    disorder or (ii) is unable to attend  to  his  or  her  daily
17    needs  without  the  assistance  or  regular supervision of a
18    care-giver due to mental or physical impairment  and  who  is
19    otherwise  eligible  for  services on the basis of his or her
20    level of impairment.
21        (9)  "Emergency  respite  care"   means   the   immediate
22    placement  of  a  trained, in-home respite care worker in the
23    home during an emergency or  unplanned  event,  or  during  a
24    temporary  placement  outside the home, to substitute for the
25    primary care-giver.  Emergency respite care may  be  provided
26    in  the  home on one or more occasions unless an extension is
27    deemed necessary by the case coordination unit.   When  there
28    is  an  urgent need for emergency respite care, procedures to
29    accommodate this need must be determined.  An emergency is:
30             (a)  An  unplanned  event  that   results   in   the
31        immediate   and   unavoidable   absence  of  the  primary
32        care-giver from the home in an excess of  4  hours  at  a
33        time when no other qualified care-giver is available.
34             (b)  An   unplanned   situation  that  prevents  the
 
HB1196 Engrossed            -10-     LRB093 03979 DRJ 07470 b
 1        primary care-giver from providing the care required by  a
 2        frail  or  abused or functionally disabled or cognitively
 3        impaired adult living at home.
 4             (c)  An unplanned event that  threatens  the  health
 5        and safety of the frail or disabled adult.
 6             (d)  An  unplanned  event  that threatens the health
 7        and safety of the primary care-giver thereby placing  the
 8        frail  or  abused or functionally disabled or cognitively
 9        impaired older adult in danger.
10        (10)  (Blank). "Primary  care-giver"  means  the  spouse,
11    relative,  or  friend, 18 years of age or older, who provides
12    the daily in-home care and supervision of a frail  or  abused
13    or functionally disabled or cognitively impaired older adult.
14    A primary care-giver may, but does not need to, reside in the
15    same  household  as  the  frail  or  abused  or  functionally
16    disabled  or cognitively impaired adult. A primary care-giver
17    requires intermittent  relief  from  his  or  her  caregiving
18    duties to continue to function as the primary care-giver.
19    (Source: P.A. 91-357, eff. 7-29-99; 92-16, eff. 6-28-01.)

20        (320 ILCS 10/3) (from Ch. 23, par. 6203)
21        Sec.   3.  Respite   Program.   The  Director  is  hereby
22    authorized to  administer  a  program  of  establish  respite
23    projects for the purposes of providing care and assistance to
24    persons  in  need  and  to  deter the institutionalization of
25    frail or disabled or  functionally  disabled  or  cognitively
26    impaired adults.
27    (Source: P.A. 87-974.)

28        (320 ILCS 10/4) (from Ch. 23, par. 6204)
29        Sec. 4.  No Limit to Care.  Nothing contained in this Act
30    shall be construed so as to limit, modify or otherwise affect
31    the provisions, for long-term in-home services being provided
32    under, of Section 4.02 of the Illinois Act on the Aging.
 
HB1196 Engrossed            -11-     LRB093 03979 DRJ 07470 b
 1    (Source: P.A. 87-974.)

 2        (320 ILCS 10/5) (from Ch. 23, par. 6205)
 3        Sec.   5.  Eligibility.   The  Department  may  establish
 4    eligibility  standards  for  respite  services  taking   into
 5    consideration  the  unique  economic  and social needs of the
 6    population for whom they are to be provided.  The  population
 7    identified  for  the  purposes  of  this Act includes persons
 8    suffering from Alzheimer's disease or a related disorder  and
 9    persons  who  are 60 55 years of age or older, or persons age
10    60 and older with an identified service need.  Priority shall
11    be given in  all  cases  to  frail,  abused  or  functionally
12    disabled or cognitively impaired adults.
13    (Source: P.A. 87-974.)

14        (320 ILCS 10/6) (from Ch. 23, par. 6206)
15        Sec.  6.  Responsibilities.   The  following requirements
16    shall apply for any projects authorized under  Section  3  of
17    this Act:
18        (a)  The  Department  Director  shall administer this Act
19    and shall adopt rules  and  standards  the  Department  deems
20    necessary  for  that  purpose  establish target areas needing
21    respite care services.
22        (b)  The Department Director  shall  make  grants  to  or
23    contract  with  Area  Agencies on Aging and other appropriate
24    community-based organizations to provide respite  care  under
25    this  Act  publicize  the  existence  of, and make available,
26    application forms for sponsors seeking to establish a respite
27    program.
28        (c)  (Blank). The application  forms  shall  require  the
29    following  information and any other information the Director
30    deems necessary.
31             (1)  Identity and qualifications of a sponsor.
32             (2)  Identity and qualifications of a provider and a
 
HB1196 Engrossed            -12-     LRB093 03979 DRJ 07470 b
 1        plan for the coordination of services.
 2             (3)  An assessment of the  community  need,  support
 3        and  participation  for respite services.  The assessment
 4        shall include documentation.
 5             (4)  Plans for the coordination and  arrangement  of
 6        provider services in a manner that meets client needs.
 7             (5)  A  fiscal  plan,  including specific provisions
 8        for the utilization of existing reimbursement and funding
 9        sources and the development of local financial support.
10             (6)  Plans  for  publicizing  the  purpose  of   the
11        project and the services to be provided.
12             (7)  Certification  of licensure or certification of
13        any individual, agency  or  family  providing  a  service
14        subject to licensure, or certification under State law.
15        (d)  (Blank). The Director shall review and evaluate each
16    application  and  present  each  application  for  review and
17    evaluation by the Council on Aging established under  Section
18    7  of  the  Illinois  Act  on the Aging.  The Council and the
19    Department shall approve a number of applications and, within
20    the amounts appropriated, award grants for the  operation  of
21    respite programs.
22        (e)  (Blank).   The  application approved by the Director
23    and the Council on Aging shall be the  service  plan  of  the
24    provider.   The  Director shall ensure that each service plan
25    is coordinated with the designated area agency  provided  for
26    in  Sections  3.07 and 3.08 of the Illinois Act on the Aging,
27    the local public health authority, and any  other  public  or
28    private  service provider to ensure that every effort will be
29    made  to  utilize  existing  funding  sources   and   service
30    providers and to avoid unnecessary duplication of services.
31        (f)  Nothing  in  this  Act  shall be construed to limit,
32    modify,  or  otherwise  affect  the  provision  of  long-term
33    in-home services under Section 4.02 of the  Illinois  Act  on
34    the Aging.
 
HB1196 Engrossed            -13-     LRB093 03979 DRJ 07470 b
 1    (Source: P.A. 87-974.)

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

17        (320 ILCS 10/11) (from Ch. 23, par. 6211)
18        Sec. 11.  Respite Care Worker Training.
19        (a)  A  respite  care  worker  shall  be an appropriately
20    trained individual  whose  duty  it  is  to  provide  in-home
21    supervision   and   assistance   to  a  frail  or  abused  or
22    functionally disabled or cognitively impaired older adult  in
23    order to allow the primary care-giver a break from his or her
24    continuous care-giving responsibilities.
25        (b)  The   Director   may   prescribe   minimum  training
26    guidelines standards for respite care workers to ensure  that
27    the  special  needs  of persons receiving services under this
28    Act and their primary caregivers will be met.   The  Director
29    may  designate Alzheimer's disease associations and community
30    agencies to conduct  such  training.   Nothing  in  this  Act
31    should  be  construed  to  exempt  any individual providing a
32    service subject to licensure or certification under State law
 
HB1196 Engrossed            -14-     LRB093 03979 DRJ 07470 b
 1    from these requirements.
 2    (Source: P.A. 87-974.)

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

21        (320 ILCS 10/7 rep.)
22        (320 ILCS 10/9 rep.)
23        (320 ILCS 10/10 rep.)
24        Section  91.  The  Respite  Program  Act  is  amended  by
25    repealing Sections 7, 9, and 10.

26        Section  99.  Effective date.  This Act takes effect upon
27    becoming law.