093_HB2973

 
                                     LRB093 07271 DRJ 07429 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  20.  Powers  and  duties of the Department.  The
24    Department shall administer this Act and  shall  adopt  rules
25    and   standards  the  Department  deems  necessary  for  that
26    purpose. At  a  minimum,  those  rules  and  standards  shall
27    address the following:
28             (1)  Standards and mechanisms designed to ensure the
29        quality   of   services  provided  with  assistance  made
30        available under this Act.
31             (2)  Data collection and record maintenance.
32        The Department shall administer this Act in  coordination
33    with  Section 4.02 and related provisions of the Illinois Act
 
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 1    on the Aging.

 2        Section 25.  Provision of services.  The Department shall
 3    contract with area agencies on aging  and  other  appropriate
 4    agencies  to conduct family caregiver support services to the
 5    extent of  available  State  and  federal  funding.  Services
 6    provided  under  this  Act  must be provided according to the
 7    requirements of federal law and rules.

 8        Section 35.  Health care practitioners and facilities not
 9    impaired. Nothing in this Act shall impair  the  practice  of
10    any licensed health care practitioner or licensed health care
11    facility.

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

26        Section  90.  The  Illinois  Income Tax Act is amended by
27    adding Section 210.10 as follows:

28        (35 ILCS 5/210.10 new)
29        Sec. 210.10.  Family caregiver tax credit.
 
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 1        (a)  In this Section, unless the context clearly requires
 2    otherwise:
 3        "Family caregiver"  means  the  individual  who  normally
 4    provides the daily care or supervision of a family member who
 5    is  a  frail or disabled adult. The family caregiver may, but
 6    need not, reside in  the  same  household  as  the  frail  or
 7    disabled adult.
 8        "Family  member" means the family caregiver's spouse or a
 9    parent,  grandparent,  brother,  or  sister  of  the   family
10    caregiver or of the family caregiver's spouse.
11        "Frail  or disabled adult" means a person who is 60 years
12    of age or older and who either (i) suffers  from  Alzheimer's
13    disease  or a related disorder or (ii) is unable to attend to
14    his or her daily needs  without  the  assistance  or  regular
15    supervision   of  a  caregiver  due  to  mental  or  physical
16    impairment.
17        (b)  For taxable years ending on or  after  December  31,
18    2003,  a  taxpayer who is a family caregiver is entitled to a
19    credit against the tax imposed by subsections (a) and (b)  of
20    Section  201  in  an  amount equal to $10 for each day in the
21    taxable year on which  the  taxpayer  provides  the  care  or
22    supervision  of  a  family  member who is a frail or disabled
23    adult. The amount of the tax credit for a  taxable  year  may
24    not exceed $3,000, however.
25        (c)  The   tax  credit  may  not  reduce  the  taxpayer's
26    liability to less than zero. If the amount of the tax  credit
27    exceeds  the  tax  liability  for the year, the excess may be
28    carried forward and applied  to  the  tax  liability  of  the
29    taxable year following the excess credit year.
30        (d)  A  taxpayer claiming the tax credit provided by this
31    Section must maintain and record the information required  by
32    the  Department  by  rule  regarding  the care or supervision
33    provided to the taxpayer's family  member.  The  Department's
34    rules must include a requirement that the Department on Aging
 
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 1    confirm  that  the  taxpayer  has  provided the daily care or
 2    supervision for which the tax credit is claimed.
 3        (e)  The provisions of Section 250 do not  apply  to  the
 4    family caregiver tax credit under this Section.

 5        Section  95.  The  Respite  Program  Act  is  amended  by
 6    changing  Sections  1.5,  2,  3,  4,  5,  6, 8, 11, and 12 as
 7    follows:

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

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

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

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

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

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

19        (320 ILCS 10/8) (from Ch. 23, par. 6208)
20        Sec.  8.  Funding.   Services Respite projects authorized
21    under this  Act  shall  be  funded  only  to  the  extent  of
22    available appropriations for such purposes.  The Director may
23    shall  seek  and  obtain  State and federal funds that may be
24    available  to  finance  respite  care  grants  awarded  under
25    Section 6 of this Act, and may shall  also  seek  and  obtain
26    other   non-state  resources  for  which  the  State  may  be
27    eligible.  Implementation of projects under this Act shall be
28    contingent  upon  the  availability  of   federal   financial
29    participation.  To the extent necessary for implementation of
30    this  Act,  The Department may shall seek appropriate waivers
31    of federal requirements from the U.S.  Department  of  Health
32    and Human Services.
33    (Source: P.A. 87-974.)
 
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 1        (320 ILCS 10/11) (from Ch. 23, par. 6211)
 2        Sec. 11.  Respite Care Worker Training.
 3        (a)  A  respite  care  worker  shall  be an appropriately
 4    trained individual  whose  duty  it  is  to  provide  in-home
 5    supervision   and   assistance   to  a  frail  or  abused  or
 6    functionally disabled or cognitively impaired older adult  in
 7    order to allow the primary care-giver a break from his or her
 8    continuous care-giving responsibilities.
 9        (b)  The   Director   may   prescribe   minimum  training
10    guidelines standards for respite care workers to ensure  that
11    the  special  needs  of persons receiving services under this
12    Act and their primary caregivers will be met.   The  Director
13    may  designate Alzheimer's disease associations and community
14    agencies to conduct  such  training.   Nothing  in  this  Act
15    should  be  construed  to  exempt  any individual providing a
16    service subject to licensure or certification under State law
17    from these requirements.
18    (Source: P.A. 87-974.)

19        (320 ILCS 10/12) (from Ch. 23, par. 6212)
20        Sec. 12.  Annual Report.  The  Director  shall  submit  a
21    report  each  year  to  the Governor and the General Assembly
22    detailing the progress of the respite care services  provided
23    programs  established  under  this  Act.    The  report shall
24    include:
25        (a)  a financial report for each program;
26        (b)  a qualitative and quantitative profile of  sponsors,
27    providers,  care-givers  and  recipients participating in the
28    program;
29        (c)  a  comparative   assessment   of   the   costs   and
30    effectiveness  of  each  10rvice  or  combination of services
31    provided;
32        (d)  an assessment of the nature and extent of the demand
33    for services; and
 
                            -15-     LRB093 07271 DRJ 07429 b
 1        (e)  an evaluation of the success of  programs  receiving
 2    grants for services.
 3    (Source: P.A. 87-974.)

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

 9        Section  99.  Effective date.  This Act takes effect upon
10    becoming law.