093_SB1620ham001

 










                                     LRB093 03227 DRJ 16495 a

 1                    AMENDMENT TO SENATE BILL 1620

 2        AMENDMENT NO.     .  Amend Senate Bill 1620 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
 
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 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 03227 DRJ 16495 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 03227 DRJ 16495 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
 
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 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  in  collaboration  with  providers  of
10    long-term care licensed under the Nursing Home Care Act.  The
11    Department  is  authorized  to  fund  2 sites, one in a rural
12    community and one in a more urban area.  The Department shall
13    adopt rules governing  participation  and  oversight  of  the
14    program.  The Department shall seek technical assistance from
15    the  Department  of  Public  Aid  and the Department of Human
16    Services.  The Department shall advise the Governor  and  the
17    General  Assembly  regarding the effectiveness of the program
18    within 6 months after the  conclusion  of  the  demonstration
19    period.

20        Section  20.  Powers  and  duties of the Department.  The
21    Department shall administer this Act and  shall  adopt  rules
22    and   standards  the  Department  deems  necessary  for  that
23    purpose. At  a  minimum,  those  rules  and  standards  shall
24    address the following:
25             (1)  Standards and mechanisms designed to ensure the
26        quality   of   services  provided  with  assistance  made
27        available under this Act.
28             (2)  Data collection and record maintenance.
29        The Department shall administer this Act in  coordination
30    with  Section 4.02 and related provisions of the Illinois Act
31    on the Aging.
 
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 1        Section 25.  Provision of services.  The Department shall
 2    contract with area agencies on aging  and  other  appropriate
 3    agencies  to conduct family caregiver support services to the
 4    extent of  available  State  and  federal  funding.  Services
 5    provided  under  this  Act  must be provided according to the
 6    requirements  of  federal  law  and  rules,  except  for  the
 7    provision of services to grandparents  or  older  individuals
 8    who are relative caregivers when State funding is utilized to
 9    provide those services.

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

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

20        Section 40.  Entitlement not created; funding; waivers.
21        (a)  Nothing   in   this  Act  creates  or  provides  any
22    individual with an entitlement to services or benefits. It is
23    the General Assembly's intent that services  under  this  Act
24    shall   be   made   available  only  to  the  extent  of  the
25    availability and level of appropriations made by the  General
26    Assembly.
27        (b)  The  Director  may seek and obtain State and federal
28    funds that may be available to finance  services  under  this
29    Act,  and  may also seek and obtain other non-State resources
30    for which the State may be eligible.
31        (c)  The  Department  may  seek  appropriate  waivers  of
 
                            -7-      LRB093 03227 DRJ 16495 a
 1    federal requirements from the U.S. Department of  Health  and
 2    Human Services.

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

 6        (320 ILCS 10/1.5) (from Ch. 23, par. 6201.5)
 7        Sec. 1.5.  Purpose.  It is hereby found and determined by
 8    the General Assembly that respite care  provides  relief  and
 9    support  to  the  primary  care-giver of a frail or abused or
10    functionally disabled or cognitively impaired older adult and
11    provides by providing a break  for  the  caregiver  from  the
12    continuous  responsibilities  of  care-giving.   Without this
13    support, the primary care-giver's ability to continue in  his
14    or her role would be jeopardized; thereby increasing the risk
15    of   institutionalization   of   the   frail   or  abused  or
16    functionally disabled or cognitively impaired older adult.
17        By providing improving and expanding the in-home  respite
18    care   services   currently  available  through  intermittent
19    planned or emergency relief  to  the  care-giver  during  the
20    regular  week-day,  evening,  and  weekend  hours,  both  the
21    special  physical  and  psychological  needs  of  the primary
22    care-giver and the frail or abused or functionally  disabled,
23    or  cognitively impaired older adult, who is the recipient of
24    continuous care, shall be met reducing or preventing the need
25    for institutionalization.
26        Furthermore, the primary care-giver providing  continuous
27    care   is  frequently  under  substantial  financial  stress.
28    Respite  care  and  other  supportive  services  sustain  and
29    preserve the primary care-giver and family  caregiving  unit.
30    It is the intent of the General Assembly that this amendatory
31    Act of 1992 ensure that Illinois primary care-givers of frail
32    or  abused  or  functionally disabled or cognitively impaired
 
                            -8-      LRB093 03227 DRJ 16495 a
 1    older adults have access to affordable,  appropriate  in-home
 2    respite care services.
 3    (Source: P.A. 87-974.)

 4        (320 ILCS 10/2) (from Ch. 23, par. 6202)
 5        Sec. 2.  Definitions.  As used in this Act:
 6        (1)  "Respite  care"  means the provision of intermittent
 7    and temporary substitute care  or  supervision  of  frail  or
 8    abused or functionally disabled or cognitively impaired older
 9    adults  on  behalf  of  and  in  the  absence  of the primary
10    care-giver, for the purpose  of  providing  relief  from  the
11    stress   or   responsibilities   concomitant  with  providing
12    constant care, so as to enable the care-giver to continue the
13    provision of care  in  the  home.   Respite  care  should  be
14    available  to  sustain  the primary care-giver throughout the
15    period of care-giving, which can vary from several months  to
16    a  number of years. Respite care can be provided in the home,
17    in a  community  based  day  care  setting  during  the  day,
18    overnight,  in  a  substitute  residential  setting such as a
19    long-term care facility  required to be  licensed  under  the
20    Nursing  Home  Care  Act  or  the  Assisted Living and Shared
21    Housing Act, or for  more  extended  periods  of  time  on  a
22    temporary basis.
23          (1.5)  "In-home respite care" means care provided by an
24    appropriately  trained  paid  worker   providing   short-term
25    intermittent care, supervision, or companionship to the frail
26    or disabled adult in the home while relieving the care-giver,
27    by  permitting  a  short-term  break  from  the  care-giver's
28    care-giving  role.  This support may contribute to the delay,
29    reduction, and prevention of institutionalization by enabling
30    the care-giver to continue in his or  her  care-giving  role.
31    In-home  respite  care  should be flexible and available in a
32    manner that is responsive to the  needs  of  the  care-giver.
33    This  may  consist  of evening respite care services that are
 
                            -9-      LRB093 03227 DRJ 16495 a
 1    available from 6:00 p.m. to 8:00 a.m. Monday  through  Friday
 2    and  weekend  respite  care services from 6:00 p.m. Friday to
 3    8:00 a.m. Monday.
 4        (2)  "Care-giver" shall mean the family member  or  other
 5    natural  person  who  normally  provides  the  daily  care or
 6    supervision of a frail, abused  or  disabled  elderly  adult.
 7    Such  care-giver  may,  but  need  not,  reside  in  the same
 8    household as the frail or disabled adult.
 9        (3)  (Blank). "Provider" shall mean any entity enumerated
10    in paragraph (1) of this Section which  is  the  supplier  of
11    services providing respite.
12        (4)  (Blank).  "Sponsor"  shall mean the provider, public
13    agency or community group  approved  by  the  Director  which
14    establishes  a  contractual  relationship with the Department
15    for the purposes of providing services to persons under  this
16    Act,   and  which  is  responsible  for  the  recruitment  of
17    providers,  the  coordination  and  arrangement  of  provider
18    services in a manner which meets client  needs,  the  general
19    supervision  of the local program, and the submission of such
20    information or reports as may be required by the Director.
21        (5)  (Blank).  "Director"  shall  mean  the  Director  of
22    Aging.
23        (6)  "Department" shall mean the Department on Aging.
24        (7)  (Blank).  "Abused"  shall  have  the  same   meaning
25    ascribed  to  it  in  Section  103  of  the Illinois Domestic
26    Violence Act of 1986.
27        (8)  "Frail or disabled  adult"  shall  mean  any  person
28    suffering  from Alzheimer's disease who is 60 55 years of age
29    or older and or any adult 60  years  of  age  or  older,  who
30    either  (i)  suffers  from  Alzheimer's  disease or a related
31    disorder or (ii) is unable to attend  to  his  or  her  daily
32    needs  without  the  assistance  or  regular supervision of a
33    care-giver due to mental or physical impairment  and  who  is
34    otherwise  eligible  for  services on the basis of his or her
 
                            -10-     LRB093 03227 DRJ 16495 a
 1    level of impairment.
 2        (9)  "Emergency  respite  care"   means   the   immediate
 3    placement  of  a  trained, in-home respite care worker in the
 4    home during an emergency or  unplanned  event,  or  during  a
 5    temporary  placement  outside the home, to substitute for the
 6    primary care-giver.  Emergency respite care may  be  provided
 7    in  the  home on one or more occasions unless an extension is
 8    deemed necessary by the case coordination unit.   When  there
 9    is  an  urgent need for emergency respite care, procedures to
10    accommodate this need must be determined.  An emergency is:
11             (a)  An  unplanned  event  that   results   in   the
12        immediate   and   unavoidable   absence  of  the  primary
13        care-giver from the home in an excess of  4  hours  at  a
14        time when no other qualified care-giver is available.
15             (b)  An   unplanned   situation  that  prevents  the
16        primary care-giver from providing the care required by  a
17        frail  or  abused or functionally disabled or cognitively
18        impaired adult living at home.
19             (c)  An unplanned event that  threatens  the  health
20        and safety of the frail or disabled adult.
21             (d)  An  unplanned  event  that threatens the health
22        and safety of the primary care-giver thereby placing  the
23        frail  or  abused or functionally disabled or cognitively
24        impaired older adult in danger.
25        (10)  (Blank). "Primary  care-giver"  means  the  spouse,
26    relative,  or  friend, 18 years of age or older, who provides
27    the daily in-home care and supervision of a frail  or  abused
28    or functionally disabled or cognitively impaired older adult.
29    A primary care-giver may, but does not need to, reside in the
30    same  household  as  the  frail  or  abused  or  functionally
31    disabled  or cognitively impaired adult. A primary care-giver
32    requires intermittent  relief  from  his  or  her  caregiving
33    duties to continue to function as the primary care-giver.
34    (Source: P.A. 91-357, eff. 7-29-99; 92-16, eff. 6-28-01.)
 
                            -11-     LRB093 03227 DRJ 16495 a
 1        (320 ILCS 10/3) (from Ch. 23, par. 6203)
 2        Sec.   3.  Respite   Program.   The  Director  is  hereby
 3    authorized to  administer  a  program  of  establish  respite
 4    projects for the purposes of providing care and assistance to
 5    persons  in  need  and  to  deter the institutionalization of
 6    frail or disabled or  functionally  disabled  or  cognitively
 7    impaired adults.
 8    (Source: P.A. 87-974.)

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

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

27        (320 ILCS 10/6) (from Ch. 23, par. 6206)
28        Sec.  6.  Responsibilities.   The  following requirements
29    shall apply for any projects authorized under  Section  3  of
30    this Act:
31        (a)  The  Department  Director  shall administer this Act
 
                            -12-     LRB093 03227 DRJ 16495 a
 1    and shall adopt rules  and  standards  the  Department  deems
 2    necessary  for  that  purpose  establish target areas needing
 3    respite care services.
 4        (b)  The Department Director  shall  make  grants  to  or
 5    contract  with  Area  Agencies on Aging and other appropriate
 6    community-based organizations to provide respite  care  under
 7    this  Act  publicize  the  existence  of, and make available,
 8    application forms for sponsors seeking to establish a respite
 9    program.
10        (c)  (Blank). The application  forms  shall  require  the
11    following  information and any other information the Director
12    deems necessary.
13             (1)  Identity and qualifications of a sponsor.
14             (2)  Identity and qualifications of a provider and a
15        plan for the coordination of services.
16             (3)  An assessment of the  community  need,  support
17        and  participation  for respite services.  The assessment
18        shall include documentation.
19             (4)  Plans for the coordination and  arrangement  of
20        provider services in a manner that meets client needs.
21             (5)  A  fiscal  plan,  including specific provisions
22        for the utilization of existing reimbursement and funding
23        sources and the development of local financial support.
24             (6)  Plans  for  publicizing  the  purpose  of   the
25        project and the services to be provided.
26             (7)  Certification  of licensure or certification of
27        any individual, agency  or  family  providing  a  service
28        subject to licensure, or certification under State law.
29        (d)  (Blank). The Director shall review and evaluate each
30    application  and  present  each  application  for  review and
31    evaluation by the Council on Aging established under  Section
32    7  of  the  Illinois  Act  on the Aging.  The Council and the
33    Department shall approve a number of applications and, within
34    the amounts appropriated, award grants for the  operation  of
 
                            -13-     LRB093 03227 DRJ 16495 a
 1    respite programs.
 2        (e)  (Blank).   The  application approved by the Director
 3    and the Council on Aging shall be the  service  plan  of  the
 4    provider.   The  Director shall ensure that each service plan
 5    is coordinated with the designated area agency  provided  for
 6    in  Sections  3.07 and 3.08 of the Illinois Act on the Aging,
 7    the local public health authority, and any  other  public  or
 8    private  service provider to ensure that every effort will be
 9    made  to  utilize  existing  funding  sources   and   service
10    providers and to avoid unnecessary duplication of services.
11        (f)  Nothing  in  this  Act  shall be construed to limit,
12    modify,  or  otherwise  affect  the  provision  of  long-term
13    in-home services under Section 4.02 of the  Illinois  Act  on
14    the Aging.
15    (Source: P.A. 87-974.)

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

31        (320 ILCS 10/11) (from Ch. 23, par. 6211)
32        Sec. 11.  Respite Care Worker Training.
 
                            -14-     LRB093 03227 DRJ 16495 a
 1        (a)  A  respite  care  worker  shall  be an appropriately
 2    trained individual  whose  duty  it  is  to  provide  in-home
 3    supervision   and   assistance   to  a  frail  or  abused  or
 4    functionally disabled or cognitively impaired older adult  in
 5    order to allow the primary care-giver a break from his or her
 6    continuous care-giving responsibilities.
 7        (b)  The   Director   may   prescribe   minimum  training
 8    guidelines standards for respite care workers to ensure  that
 9    the  special  needs  of persons receiving services under this
10    Act and their primary caregivers will be met.   The  Director
11    may  designate Alzheimer's disease associations and community
12    agencies to conduct  such  training.   Nothing  in  this  Act
13    should  be  construed  to  exempt  any individual providing a
14    service subject to licensure or certification under State law
15    from these requirements.
16    (Source: P.A. 87-974.)

17        (320 ILCS 10/12) (from Ch. 23, par. 6212)
18        Sec. 12.  Annual Report.  The  Director  shall  submit  a
19    report  each  year  to  the Governor and the General Assembly
20    detailing the progress of the respite care services  provided
21    programs  established  under  this  Act.    The  report shall
22    include:
23        (a)  a financial report for each program;
24        (b)  a qualitative and quantitative profile of  sponsors,
25    providers,  care-givers  and  recipients participating in the
26    program;
27        (c)  a  comparative   assessment   of   the   costs   and
28    effectiveness  of  each  10rvice  or  combination of services
29    provided;
30        (d)  an assessment of the nature and extent of the demand
31    for services; and
32        (e)  an evaluation of the success of  programs  receiving
33    grants for services.
 
                            -15-     LRB093 03227 DRJ 16495 a
 1    (Source: P.A. 87-974.)

 2        (320 ILCS 10/7 rep.)
 3        (320 ILCS 10/9 rep.)
 4        (320 ILCS 10/10 rep.)
 5        Section  91.  The  Respite  Program  Act  is  amended  by
 6    repealing Sections 7, 9, and 10.

 7        Section  99.  Effective date.  This Act takes effect upon
 8    becoming law.".