093_HB1102ham001

 










                                     LRB093 02667 LCB 12533 a

 1                    AMENDMENT TO HOUSE BILL 1102

 2        AMENDMENT NO.     .  Amend House Bill 1102  by  replacing
 3    everything after the enacting clause with the following:

 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
 
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 1        caregiver,  this  stress  may  lead   to   premature   or
 2        unnecessary institutionalization of the care recipient or
 3        deterioration   in   the   health  condition  and  family
 4        circumstances of the caregiver.
 5             (4)  Two out of 3 family caregivers,  due  to  being
 6        employed  outside the home, experience additional stress.
 7        Two-thirds of working caregivers report conflicts between
 8        work and caregiving, requiring them  to  rearrange  their
 9        work  schedules, work fewer than normal hours, or take an
10        unpaid leave of absence. For this  population,  caregiver
11        support  services  have  the  added  benefit  of allowing
12        family caregivers to remain active members of our State's
13        workforce.

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

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

32        Section  16.  Family  caregiver demonstration grant.  The
33    Department shall seek federal funding for  the  establishment
 
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 1    and  assessment  of  a  Family Caregiver Training and Support
 2    Demonstration Project using residential  facilities  licensed
 3    under   the   Nursing  Home  Care  Act.   The  Department  is
 4    authorized to fund 2 sites, one in a rural community and  one
 5    in  a  more  urban  area.   The  Department shall adopt rules
 6    governing participation and oversight of the  program.    The
 7    Department   shall   seek   technical   assistance  from  the
 8    Department of Public Aid.  The Department  shall  advise  the
 9    Governor and the General Assembly regarding the effectiveness
10    of  the  program  within 6 months after the conclusion of the
11    demonstration period.

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

24        Section 25.  Provision of services.  The Department shall
25    contract  with  area  agencies on aging and other appropriate
26    agencies to conduct family caregiver support services to  the
27    extent  of  available  State  and  federal  funding. Services
28    provided under this Act must be  provided  according  to  the
29    requirements of federal law and rules.

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

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

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

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

19        (320 ILCS 10/2) (from Ch. 23, par. 6202)
20        Sec. 2.  Definitions.  As used in this Act:
21        (1)  "Respite care" means the provision  of  intermittent
22    and  temporary  substitute  care  or  supervision of frail or
23    abused or functionally disabled or cognitively impaired older
24    adults on behalf  of  and  in  the  absence  of  the  primary
25    care-giver,  for  the  purpose  of  providing relief from the
26    stress  or  responsibilities   concomitant   with   providing
27    constant care, so as to enable the care-giver to continue the
28    provision  of  care  in  the  home.   Respite  care should be
29    available to sustain the primary  care-giver  throughout  the
30    period  of care-giving, which can vary from several months to
31    a number of years. Respite care can be provided in the  home,
32    in  a  community  based  day  care  setting  during  the day,
33    overnight, in a substitute  residential  setting  such  as  a
 
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 1    long-term  care  facility   required to be licensed under the
 2    Nursing Home Care Act  or  the  Assisted  Living  and  Shared
 3    Housing  Act,  or  for  more  extended  periods  of time on a
 4    temporary basis.
 5         (1.5)  "In-home respite care" means care provided by  an
 6    appropriately   trained   paid  worker  providing  short-term
 7    intermittent care, supervision, or companionship to the frail
 8    or disabled adult in the home while relieving the care-giver,
 9    by  permitting  a  short-term  break  from  the  care-giver's
10    care-giving role.  This support may contribute to the  delay,
11    reduction, and prevention of institutionalization by enabling
12    the  care-giver  to  continue in his or her care-giving role.
13    In-home respite care should be flexible and  available  in  a
14    manner  that  is  responsive  to the needs of the care-giver.
15    This may consist of evening respite care  services  that  are
16    available  from  6:00 p.m. to 8:00 a.m. Monday through Friday
17    and weekend respite care services from 6:00  p.m.  Friday  to
18    8:00 a.m. Monday.
19        (2)  "Care-giver"  shall  mean the family member or other
20    natural person  who  normally  provides  the  daily  care  or
21    supervision  of  a  frail,  abused or disabled elderly adult.
22    Such care-giver  may,  but  need  not,  reside  in  the  same
23    household as the frail or disabled adult.
24        (3)  (Blank). "Provider" shall mean any entity enumerated
25    in  paragraph  (1)  of  this Section which is the supplier of
26    services providing respite.
27        (4)  (Blank). "Sponsor" shall mean the  provider,  public
28    agency  or  community  group  approved  by the Director which
29    establishes a contractual relationship  with  the  Department
30    for  the purposes of providing services to persons under this
31    Act,  and  which  is  responsible  for  the  recruitment   of
32    providers,  the  coordination  and  arrangement  of  provider
33    services  in  a  manner which meets client needs, the general
34    supervision of the local program, and the submission of  such
 
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 1    information or reports as may be required by the Director.
 2        (5)  (Blank).  "Director"  shall  mean  the  Director  of
 3    Aging.
 4        (6)  "Department" shall mean the Department on Aging.
 5        (7)  (Blank).   "Abused"  shall  have  the  same  meaning
 6    ascribed to it  in  Section  103  of  the  Illinois  Domestic
 7    Violence Act of 1986.
 8        (8)  "Frail  or  disabled  adult"  shall  mean any person
 9    suffering from Alzheimer's disease who is 60 55 years of  age
10    or  older  and  or  any  adult  60 years of age or older, who
11    either (i) suffers from  Alzheimer's  disease  or  a  related
12    disorder  or  (ii)  is  unable  to attend to his or her daily
13    needs without the assistance  or  regular  supervision  of  a
14    care-giver  due  to  mental or physical impairment and who is
15    otherwise eligible for services on the basis of  his  or  her
16    level of impairment.
17        (9)  "Emergency   respite   care"   means  the  immediate
18    placement of a trained, in-home respite care  worker  in  the
19    home  during  an  emergency  or  unplanned event, or during a
20    temporary placement outside the home, to substitute  for  the
21    primary  care-giver.   Emergency respite care may be provided
22    in the home on one or more occasions unless an  extension  is
23    deemed  necessary  by the case coordination unit.  When there
24    is an urgent need for emergency respite care,  procedures  to
25    accommodate this need must be determined.  An emergency is:
26             (a)  An   unplanned   event   that  results  in  the
27        immediate  and  unavoidable  absence   of   the   primary
28        care-giver  from  the  home  in an excess of 4 hours at a
29        time when no other qualified care-giver is available.
30             (b)  An  unplanned  situation  that   prevents   the
31        primary  care-giver from providing the care required by a
32        frail or abused or functionally disabled  or  cognitively
33        impaired adult living at home.
34             (c)  An  unplanned  event  that threatens the health
 
                            -10-     LRB093 02667 LCB 12533 a
 1        and safety of the frail or disabled adult.
 2             (d)  An unplanned event that  threatens  the  health
 3        and  safety of the primary care-giver thereby placing the
 4        frail or abused or functionally disabled  or  cognitively
 5        impaired older adult in danger.
 6        (10)  (Blank).  "Primary  care-giver"  means  the spouse,
 7    relative, or friend, 18 years of age or older,  who  provides
 8    the  daily  in-home care and supervision of a frail or abused
 9    or functionally disabled or cognitively impaired older adult.
10    A primary care-giver may, but does not need to, reside in the
11    same  household  as  the  frail  or  abused  or  functionally
12    disabled or cognitively impaired adult. A primary  care-giver
13    requires  intermittent  relief  from  his  or  her caregiving
14    duties to continue to function as the primary care-giver.
15    (Source: P.A. 91-357, eff. 7-29-99; 92-16, eff. 6-28-01.)

16        (320 ILCS 10/3) (from Ch. 23, par. 6203)
17        Sec.  3.  Respite  Program.   The  Director   is   hereby
18    authorized  to  administer  a  program  of  establish respite
19    projects for the purposes of providing care and assistance to
20    persons in need and  to  deter  the  institutionalization  of
21    frail  or  disabled  or  functionally disabled or cognitively
22    impaired adults.
23    (Source: P.A. 87-974.)

24        (320 ILCS 10/4) (from Ch. 23, par. 6204)
25        Sec. 4.  No Limit to Care.  Nothing contained in this Act
26    shall be construed so as to limit, modify or otherwise affect
27    the provisions, for long-term in-home services being provided
28    under, of Section 4.02 of the Illinois Act on the Aging.
29    (Source: P.A. 87-974.)

30        (320 ILCS 10/5) (from Ch. 23, par. 6205)
31        Sec.  5.  Eligibility.   The  Department  may   establish
 
                            -11-     LRB093 02667 LCB 12533 a
 1    eligibility   standards  for  respite  services  taking  into
 2    consideration the unique economic and  social  needs  of  the
 3    population  for  whom they are to be provided. The population
 4    identified for the purposes  of  this  Act  includes  persons
 5    suffering  from Alzheimer's disease or a related disorder and
 6    persons who are 60 55 years of age or older, or  persons  age
 7    60 and older with an identified service need.  Priority shall
 8    be  given  in  all  cases  to  frail,  abused or functionally
 9    disabled or cognitively impaired adults.
10    (Source: P.A. 87-974.)

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

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

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

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

18        (320 ILCS 10/7 rep.)
19        (320 ILCS 10/9 rep.)
20        (320 ILCS 10/10 rep.)
21        Section  91.  The  Respite  Program  Act  is  amended  by
22    repealing Sections 7, 9, and 10.

23        Section 99.  Effective date.  This Act takes effect  upon
24    becoming law.".