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Public Act 095-0012


 

Public Act 0012 95TH GENERAL ASSEMBLY



 


 
Public Act 095-0012
 
SB1580 Enrolled LRB095 09918 KBJ 30129 b

    AN ACT concerning public health.
 
    Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
 
    Section 1. Short title. This Act may be cited as the FY2008
Budget Implementation (Human Services) Act.
 
    Section 5. Purpose. It is the purpose of this Act to
implement the Governor's FY2008 budget recommendations
concerning human services.
 
    Section 10. The Illinois Administrative Procedure Act is
amended by changing Section 5-45 as follows:
 
    (5 ILCS 100/5-45)  (from Ch. 127, par. 1005-45)
    Sec. 5-45. Emergency rulemaking.
    (a) "Emergency" means the existence of any situation that
any agency finds reasonably constitutes a threat to the public
interest, safety, or welfare.
    (b) If any agency finds that an emergency exists that
requires adoption of a rule upon fewer days than is required by
Section 5-40 and states in writing its reasons for that
finding, the agency may adopt an emergency rule without prior
notice or hearing upon filing a notice of emergency rulemaking
with the Secretary of State under Section 5-70. The notice
shall include the text of the emergency rule and shall be
published in the Illinois Register. Consent orders or other
court orders adopting settlements negotiated by an agency may
be adopted under this Section. Subject to applicable
constitutional or statutory provisions, an emergency rule
becomes effective immediately upon filing under Section 5-65 or
at a stated date less than 10 days thereafter. The agency's
finding and a statement of the specific reasons for the finding
shall be filed with the rule. The agency shall take reasonable
and appropriate measures to make emergency rules known to the
persons who may be affected by them.
    (c) An emergency rule may be effective for a period of not
longer than 150 days, but the agency's authority to adopt an
identical rule under Section 5-40 is not precluded. No
emergency rule may be adopted more than once in any 24 month
period, except that this limitation on the number of emergency
rules that may be adopted in a 24 month period does not apply
to (i) emergency rules that make additions to and deletions
from the Drug Manual under Section 5-5.16 of the Illinois
Public Aid Code or the generic drug formulary under Section
3.14 of the Illinois Food, Drug and Cosmetic Act, (ii)
emergency rules adopted by the Pollution Control Board before
July 1, 1997 to implement portions of the Livestock Management
Facilities Act, or (iii) emergency rules adopted by the
Illinois Department of Public Health under subsections (a)
through (i) of Section 2 of the Department of Public Health Act
when necessary to protect the public's health. Two or more
emergency rules having substantially the same purpose and
effect shall be deemed to be a single rule for purposes of this
Section.
    (d) In order to provide for the expeditious and timely
implementation of the State's fiscal year 1999 budget,
emergency rules to implement any provision of Public Act 90-587
or 90-588 or any other budget initiative for fiscal year 1999
may be adopted in accordance with this Section by the agency
charged with administering that provision or initiative,
except that the 24-month limitation on the adoption of
emergency rules and the provisions of Sections 5-115 and 5-125
do not apply to rules adopted under this subsection (d). The
adoption of emergency rules authorized by this subsection (d)
shall be deemed to be necessary for the public interest,
safety, and welfare.
    (e) In order to provide for the expeditious and timely
implementation of the State's fiscal year 2000 budget,
emergency rules to implement any provision of this amendatory
Act of the 91st General Assembly or any other budget initiative
for fiscal year 2000 may be adopted in accordance with this
Section by the agency charged with administering that provision
or initiative, except that the 24-month limitation on the
adoption of emergency rules and the provisions of Sections
5-115 and 5-125 do not apply to rules adopted under this
subsection (e). The adoption of emergency rules authorized by
this subsection (e) shall be deemed to be necessary for the
public interest, safety, and welfare.
    (f) In order to provide for the expeditious and timely
implementation of the State's fiscal year 2001 budget,
emergency rules to implement any provision of this amendatory
Act of the 91st General Assembly or any other budget initiative
for fiscal year 2001 may be adopted in accordance with this
Section by the agency charged with administering that provision
or initiative, except that the 24-month limitation on the
adoption of emergency rules and the provisions of Sections
5-115 and 5-125 do not apply to rules adopted under this
subsection (f). The adoption of emergency rules authorized by
this subsection (f) shall be deemed to be necessary for the
public interest, safety, and welfare.
    (g) In order to provide for the expeditious and timely
implementation of the State's fiscal year 2002 budget,
emergency rules to implement any provision of this amendatory
Act of the 92nd General Assembly or any other budget initiative
for fiscal year 2002 may be adopted in accordance with this
Section by the agency charged with administering that provision
or initiative, except that the 24-month limitation on the
adoption of emergency rules and the provisions of Sections
5-115 and 5-125 do not apply to rules adopted under this
subsection (g). The adoption of emergency rules authorized by
this subsection (g) shall be deemed to be necessary for the
public interest, safety, and welfare.
    (h) In order to provide for the expeditious and timely
implementation of the State's fiscal year 2003 budget,
emergency rules to implement any provision of this amendatory
Act of the 92nd General Assembly or any other budget initiative
for fiscal year 2003 may be adopted in accordance with this
Section by the agency charged with administering that provision
or initiative, except that the 24-month limitation on the
adoption of emergency rules and the provisions of Sections
5-115 and 5-125 do not apply to rules adopted under this
subsection (h). The adoption of emergency rules authorized by
this subsection (h) shall be deemed to be necessary for the
public interest, safety, and welfare.
    (i) In order to provide for the expeditious and timely
implementation of the State's fiscal year 2004 budget,
emergency rules to implement any provision of this amendatory
Act of the 93rd General Assembly or any other budget initiative
for fiscal year 2004 may be adopted in accordance with this
Section by the agency charged with administering that provision
or initiative, except that the 24-month limitation on the
adoption of emergency rules and the provisions of Sections
5-115 and 5-125 do not apply to rules adopted under this
subsection (i). The adoption of emergency rules authorized by
this subsection (i) shall be deemed to be necessary for the
public interest, safety, and welfare.
    (j) In order to provide for the expeditious and timely
implementation of the provisions of the State's fiscal year
2005 budget as provided under the Fiscal Year 2005 Budget
Implementation (Human Services) Act, emergency rules to
implement any provision of the Fiscal Year 2005 Budget
Implementation (Human Services) Act may be adopted in
accordance with this Section by the agency charged with
administering that provision, except that the 24-month
limitation on the adoption of emergency rules and the
provisions of Sections 5-115 and 5-125 do not apply to rules
adopted under this subsection (j). The Department of Public Aid
may also adopt rules under this subsection (j) necessary to
administer the Illinois Public Aid Code and the Children's
Health Insurance Program Act. The adoption of emergency rules
authorized by this subsection (j) shall be deemed to be
necessary for the public interest, safety, and welfare.
    (k) In order to provide for the expeditious and timely
implementation of the provisions of the State's fiscal year
2006 budget, emergency rules to implement any provision of this
amendatory Act of the 94th General Assembly or any other budget
initiative for fiscal year 2006 may be adopted in accordance
with this Section by the agency charged with administering that
provision or initiative, except that the 24-month limitation on
the adoption of emergency rules and the provisions of Sections
5-115 and 5-125 do not apply to rules adopted under this
subsection (k). The Department of Healthcare and Family
Services may also adopt rules under this subsection (k)
necessary to administer the Illinois Public Aid Code, the
Senior Citizens and Disabled Persons Property Tax Relief and
Pharmaceutical Assistance Act, the Senior Citizens and
Disabled Persons Prescription Drug Discount Program Act (now
the Illinois Prescription Drug Discount Program Act), and the
Children's Health Insurance Program Act. The adoption of
emergency rules authorized by this subsection (k) shall be
deemed to be necessary for the public interest, safety, and
welfare.
    (l) In order to provide for the expeditious and timely
implementation of the provisions of the State's fiscal year
2007 budget, the Department of Healthcare and Family Services
may adopt emergency rules during fiscal year 2007, including
rules effective July 1, 2007, in accordance with this
subsection to the extent necessary to administer the
Department's responsibilities with respect to amendments to
the State plans and Illinois waivers approved by the federal
Centers for Medicare and Medicaid Services necessitated by the
requirements of Title XIX and Title XXI of the federal Social
Security Act. The adoption of emergency rules authorized by
this subsection (l) shall be deemed to be necessary for the
public interest, safety, and welfare.
    (m) In order to provide for the expeditious and timely
implementation of the provisions of the State's fiscal year
2008 budget, the Department of Healthcare and Family Services
may adopt emergency rules during fiscal year 2008, including
rules effective July 1, 2008, in accordance with this
subsection to the extent necessary to administer the
Department's responsibilities with respect to amendments to
the State plans and Illinois waivers approved by the federal
Centers for Medicare and Medicaid Services necessitated by the
requirements of Title XIX and Title XXI of the federal Social
Security Act. The adoption of emergency rules authorized by
this subsection (m) shall be deemed to be necessary for the
public interest, safety, and welfare.
(Source: P.A. 93-20, eff. 6-20-03; 93-829, eff. 7-28-04;
93-841, eff. 7-30-04; 94-48, eff. 7-1-05; 94-838, eff. 6-6-06;
revised 10-19-06.)
 
    Section 15. The Illinois Public Aid Code is amended by
changing Section 5-5.4 as follows:
 
    (305 ILCS 5/5-5.4)  (from Ch. 23, par. 5-5.4)
    Sec. 5-5.4. Standards of Payment - Department of Healthcare
and Family Services. The Department of Healthcare and Family
Services shall develop standards of payment of skilled nursing
and intermediate care services in facilities providing such
services under this Article which:
    (1) Provide for the determination of a facility's payment
for skilled nursing and intermediate care services on a
prospective basis. The amount of the payment rate for all
nursing facilities certified by the Department of Public Health
under the Nursing Home Care Act as Intermediate Care for the
Developmentally Disabled facilities, Long Term Care for Under
Age 22 facilities, Skilled Nursing facilities, or Intermediate
Care facilities under the medical assistance program shall be
prospectively established annually on the basis of historical,
financial, and statistical data reflecting actual costs from
prior years, which shall be applied to the current rate year
and updated for inflation, except that the capital cost element
for newly constructed facilities shall be based upon projected
budgets. The annually established payment rate shall take
effect on July 1 in 1984 and subsequent years. No rate increase
and no update for inflation shall be provided on or after July
1, 1994 and before July 1, 2008 2007, unless specifically
provided for in this Section. The changes made by Public Act
93-841 extending the duration of the prohibition against a rate
increase or update for inflation are effective retroactive to
July 1, 2004.
    For facilities licensed by the Department of Public Health
under the Nursing Home Care Act as Intermediate Care for the
Developmentally Disabled facilities or Long Term Care for Under
Age 22 facilities, the rates taking effect on July 1, 1998
shall include an increase of 3%. For facilities licensed by the
Department of Public Health under the Nursing Home Care Act as
Skilled Nursing facilities or Intermediate Care facilities,
the rates taking effect on July 1, 1998 shall include an
increase of 3% plus $1.10 per resident-day, as defined by the
Department. For facilities licensed by the Department of Public
Health under the Nursing Home Care Act as Intermediate Care
Facilities for the Developmentally Disabled or Long Term Care
for Under Age 22 facilities, the rates taking effect on January
1, 2006 shall include an increase of 3%.
    For facilities licensed by the Department of Public Health
under the Nursing Home Care Act as Intermediate Care for the
Developmentally Disabled facilities or Long Term Care for Under
Age 22 facilities, the rates taking effect on July 1, 1999
shall include an increase of 1.6% plus $3.00 per resident-day,
as defined by the Department. For facilities licensed by the
Department of Public Health under the Nursing Home Care Act as
Skilled Nursing facilities or Intermediate Care facilities,
the rates taking effect on July 1, 1999 shall include an
increase of 1.6% and, for services provided on or after October
1, 1999, shall be increased by $4.00 per resident-day, as
defined by the Department.
    For facilities licensed by the Department of Public Health
under the Nursing Home Care Act as Intermediate Care for the
Developmentally Disabled facilities or Long Term Care for Under
Age 22 facilities, the rates taking effect on July 1, 2000
shall include an increase of 2.5% per resident-day, as defined
by the Department. For facilities licensed by the Department of
Public Health under the Nursing Home Care Act as Skilled
Nursing facilities or Intermediate Care facilities, the rates
taking effect on July 1, 2000 shall include an increase of 2.5%
per resident-day, as defined by the Department.
    For facilities licensed by the Department of Public Health
under the Nursing Home Care Act as skilled nursing facilities
or intermediate care facilities, a new payment methodology must
be implemented for the nursing component of the rate effective
July 1, 2003. The Department of Public Aid (now Healthcare and
Family Services) shall develop the new payment methodology
using the Minimum Data Set (MDS) as the instrument to collect
information concerning nursing home resident condition
necessary to compute the rate. The Department shall develop the
new payment methodology to meet the unique needs of Illinois
nursing home residents while remaining subject to the
appropriations provided by the General Assembly. A transition
period from the payment methodology in effect on June 30, 2003
to the payment methodology in effect on July 1, 2003 shall be
provided for a period not exceeding 3 years and 184 days after
implementation of the new payment methodology as follows:
        (A) For a facility that would receive a lower nursing
    component rate per patient day under the new system than
    the facility received effective on the date immediately
    preceding the date that the Department implements the new
    payment methodology, the nursing component rate per
    patient day for the facility shall be held at the level in
    effect on the date immediately preceding the date that the
    Department implements the new payment methodology until a
    higher nursing component rate of reimbursement is achieved
    by that facility.
        (B) For a facility that would receive a higher nursing
    component rate per patient day under the payment
    methodology in effect on July 1, 2003 than the facility
    received effective on the date immediately preceding the
    date that the Department implements the new payment
    methodology, the nursing component rate per patient day for
    the facility shall be adjusted.
        (C) Notwithstanding paragraphs (A) and (B), the
    nursing component rate per patient day for the facility
    shall be adjusted subject to appropriations provided by the
    General Assembly.
    For facilities licensed by the Department of Public Health
under the Nursing Home Care Act as Intermediate Care for the
Developmentally Disabled facilities or Long Term Care for Under
Age 22 facilities, the rates taking effect on March 1, 2001
shall include a statewide increase of 7.85%, as defined by the
Department.
    For facilities licensed by the Department of Public Health
under the Nursing Home Care Act as Intermediate Care for the
Developmentally Disabled facilities or Long Term Care for Under
Age 22 facilities, the rates taking effect on April 1, 2002
shall include a statewide increase of 2.0%, as defined by the
Department. This increase terminates on July 1, 2002; beginning
July 1, 2002 these rates are reduced to the level of the rates
in effect on March 31, 2002, as defined by the Department.
    For facilities licensed by the Department of Public Health
under the Nursing Home Care Act as skilled nursing facilities
or intermediate care facilities, the rates taking effect on
July 1, 2001 shall be computed using the most recent cost
reports on file with the Department of Public Aid no later than
April 1, 2000, updated for inflation to January 1, 2001. For
rates effective July 1, 2001 only, rates shall be the greater
of the rate computed for July 1, 2001 or the rate effective on
June 30, 2001.
    Notwithstanding any other provision of this Section, for
facilities licensed by the Department of Public Health under
the Nursing Home Care Act as skilled nursing facilities or
intermediate care facilities, the Illinois Department shall
determine by rule the rates taking effect on July 1, 2002,
which shall be 5.9% less than the rates in effect on June 30,
2002.
    Notwithstanding any other provision of this Section, for
facilities licensed by the Department of Public Health under
the Nursing Home Care Act as skilled nursing facilities or
intermediate care facilities, if the payment methodologies
required under Section 5A-12 and the waiver granted under 42
CFR 433.68 are approved by the United States Centers for
Medicare and Medicaid Services, the rates taking effect on July
1, 2004 shall be 3.0% greater than the rates in effect on June
30, 2004. These rates shall take effect only upon approval and
implementation of the payment methodologies required under
Section 5A-12.
    Notwithstanding any other provisions of this Section, for
facilities licensed by the Department of Public Health under
the Nursing Home Care Act as skilled nursing facilities or
intermediate care facilities, the rates taking effect on
January 1, 2005 shall be 3% more than the rates in effect on
December 31, 2004.
    Notwithstanding any other provisions of this Section, for
facilities licensed by the Department of Public Health under
the Nursing Home Care Act as intermediate care facilities that
are federally defined as Institutions for Mental Disease, a
socio-development component rate equal to 6.6% of the
facility's nursing component rate as of January 1, 2006 shall
be established and paid effective July 1, 2006. The Illinois
Department may by rule adjust these socio-development
component rates, but in no case may such rates be diminished.
    For facilities licensed by the Department of Public Health
under the Nursing Home Care Act as Intermediate Care for the
Developmentally Disabled facilities or as long-term care
facilities for residents under 22 years of age, the rates
taking effect on July 1, 2003 shall include a statewide
increase of 4%, as defined by the Department.
    Notwithstanding any other provision of this Section, for
facilities licensed by the Department of Public Health under
the Nursing Home Care Act as skilled nursing facilities or
intermediate care facilities, effective January 1, 2005,
facility rates shall be increased by the difference between (i)
a facility's per diem property, liability, and malpractice
insurance costs as reported in the cost report filed with the
Department of Public Aid and used to establish rates effective
July 1, 2001 and (ii) those same costs as reported in the
facility's 2002 cost report. These costs shall be passed
through to the facility without caps or limitations, except for
adjustments required under normal auditing procedures.
    Rates established effective each July 1 shall govern
payment for services rendered throughout that fiscal year,
except that rates established on July 1, 1996 shall be
increased by 6.8% for services provided on or after January 1,
1997. Such rates will be based upon the rates calculated for
the year beginning July 1, 1990, and for subsequent years
thereafter until June 30, 2001 shall be based on the facility
cost reports for the facility fiscal year ending at any point
in time during the previous calendar year, updated to the
midpoint of the rate year. The cost report shall be on file
with the Department no later than April 1 of the current rate
year. Should the cost report not be on file by April 1, the
Department shall base the rate on the latest cost report filed
by each skilled care facility and intermediate care facility,
updated to the midpoint of the current rate year. In
determining rates for services rendered on and after July 1,
1985, fixed time shall not be computed at less than zero. The
Department shall not make any alterations of regulations which
would reduce any component of the Medicaid rate to a level
below what that component would have been utilizing in the rate
effective on July 1, 1984.
    (2) Shall take into account the actual costs incurred by
facilities in providing services for recipients of skilled
nursing and intermediate care services under the medical
assistance program.
    (3) Shall take into account the medical and psycho-social
characteristics and needs of the patients.
    (4) Shall take into account the actual costs incurred by
facilities in meeting licensing and certification standards
imposed and prescribed by the State of Illinois, any of its
political subdivisions or municipalities and by the U.S.
Department of Health and Human Services pursuant to Title XIX
of the Social Security Act.
    The Department of Healthcare and Family Services shall
develop precise standards for payments to reimburse nursing
facilities for any utilization of appropriate rehabilitative
personnel for the provision of rehabilitative services which is
authorized by federal regulations, including reimbursement for
services provided by qualified therapists or qualified
assistants, and which is in accordance with accepted
professional practices. Reimbursement also may be made for
utilization of other supportive personnel under appropriate
supervision.
(Source: P.A. 93-20, eff. 6-20-03; 93-649, eff. 1-8-04; 93-659,
eff. 2-3-04; 93-841, eff. 7-30-04; 93-1087, eff. 2-28-05;
94-48, eff. 7-1-05; 94-85, eff. 6-28-05; 94-697, eff. 11-21-05;
94-838, eff. 6-6-06; 94-964, eff. 6-28-06; revised 8-3-06.)
 
    Section 20. The Hemophilia Care Act is amended by changing
Section 1 and by adding Sections 1.5 and 2.5 as follows:
 
    (410 ILCS 420/1)  (from Ch. 111 1/2, par. 2901)
    Sec. 1. Definitions. As used in this Act, unless the
context clearly requires otherwise:
    (1) "Department" means the Illinois Department of
Healthcare and Family Services Public Aid.
    (1.5) "Director" means the Director of Healthcare and
Family Services and the Director of Insurance Public Aid.
    (2) (Blank).
    (3) "Hemophilia" means a bleeding tendency resulting from a
genetically determined deficiency in the blood.
    (4) (Blank). "Committee" means the Hemophilia Advisory
Committee created under this Act.
    (5) "Eligible person" means any resident of the State
suffering from hemophilia.
    (6) "Family" means:
        (a) In the case of a patient who is a dependent of
    another person or couple as defined by the Illinois Income
    Tax Act, all those persons for whom exemption is claimed in
    the State income tax return of the person or couple whose
    dependent the eligible person is, and
        (b) In all other cases, all those persons for whom
    exemption is claimed in the State income tax return of the
    eligible person, or of the eligible person and his spouse.
    (7) "Eligible cost of hemophilia services" means the cost
of blood transfusions, blood derivatives, and for outpatient
services, of physician charges, medical supplies, and
appliances, used in the treatment of eligible persons for
hemophilia, plus one half of the cost of hospital inpatient
care, minus any amount of such cost which is eligible for
payment or reimbursement by any hospital or medical insurance
program, by any other government medical or financial
assistance program, or by any charitable assistance program.
    (8) "Gross income" means the base income for State income
tax purposes of all members of the family.
    (9) "Available family income" means the lesser of:
        (a) Gross income minus the sum of (1) $5,500, and (2)
    $3,500 times the number of persons in the family, or
        (b) One half of gross income.
    (10) "Board" means the Hemophilia Advisory Review Board.
(Source: P.A. 89-507, eff. 7-1-97; 90-587, eff. 7-1-98; revised
12-15-05.)
 
    (410 ILCS 420/1.5 new)
    Sec. 1.5. Findings. The General Assembly finds all of the
following:
        (1) Inherited hemophilia and other bleeding disorders
    are devastating health conditions that can cause serious
    financial, social, and emotional hardships for patients
    and their families. Hemophilia, which occurs predominantly
    in males, is a rare but well-known type of inherited
    bleeding disorder in which one of several proteins normally
    found in blood are either deficient or inactive, and
    causing pain, swelling, and permanent damage to joints and
    muscles. The disorder affects Americans of all racial and
    ethnic backgrounds. In about one-third of all cases, there
    is no known family history of the disorder. In these cases,
    the disease developed after a new or spontaneous gene
    mutation.
        (2) Hemophilia is one of a spectrum of devastating
    chronic bleeding disorders impacting Americans. Von
    Willebrand Disease, another type of bleeding disorder, is
    caused by a deficiency on the von Willebrand protein.
    Persons with the disorder often bruise easily, have
    frequent nosebleeds, or bleed after tooth extraction,
    tonsillectomy, or other surgery. In some instances, women
    will have prolonged menstrual bleeding. The disorder
    occurs in about 1% to 2% of the U.S. population.
        (3) Appropriate care and treatment are necessities for
    maintaining optimum health for persons afflicted with
    hemophilia and other bleeding disorders.
        (4) While hemophilia and other bleeding disorders are
    incurable, advancements in drug therapies are allowing
    individuals greater latitude in managing their conditions,
    fostering independence, and minimizing chronic
    complications such as damage to the joints and muscles,
    blood-transmitted infectious diseases, and chronic liver
    diseases. At the same time, treatment for clotting
    disorders is saving more and more lives. The rarity of
    these disorders coupled with the delicate processes for
    producing factors, however, makes treating these disorders
    extremely costly. As a result, insurance coverage is a
    major concern for patients and their families.
        (5) It is thus the intent of the General Assembly
    through implementation of this Act to establish an advisory
    board to provide expert advice to the State on health and
    insurance policies, plans, and public health programs that
    impact individuals with hemophilia and other bleeding
    disorders.
 
    (410 ILCS 420/2.5 new)
    Sec. 2.5. Hemophilia Advisory Review Board.
    (a) The Director of Public Health in collaboration and in
consultation with the Director of Insurance, shall establish an
independent advisory board known as the Hemophilia Advisory
Review Board. The Board shall review, may comment upon, and
make recommendations to the Directors with regard to, but not
limited to the following:
        (1) Proposed legislative or administrative changes to
    policies and programs that are integral to the health and
    wellness of individuals with hemophilia and other bleeding
    disorders.
        (2) Standards of care and treatment for persons living
    with hemophilia and other bleeding disorders. In examining
    standards of care, the Board shall protect open access to
    any and all treatments for hemophilia and other bleeding
    disorders, in accordance with federal guidelines and
    standards of care guidelines developed by the Medical and
    Scientific Advisory Council (MASAC) of National Hemophilia
    Foundation (NHF), an internationally recognized body whose
    guidelines set the standards of care for hemophilia and
    other bleeding disorders around the world.
        (3) The development of community-based initiatives to
    increase awareness of care and treatment for persons living
    with hemophilia and other bleeding disorders. The
    Department of Health may provide such services through
    cooperative agreements with Hemophilia Treatment Centers,
    medical facilities, schools, nonprofit organizations
    servicing the bleeding disorder community, or other
    appropriate means.
        (4) Facilitating linkages for persons with hemophilia
    and other bleeding disorders.
        (5) Protecting the rights of people living with
    hemophilia and other bleeding disorders to appropriate
    health insurance coverage be it under a private or
    State-sponsored health insurance provider.
    (b) The Board shall consist of the Director of Healthcare
and Family Services and the Director of Insurance or their
designee, who shall serve as non-voting members, and 7 voting
members appointed by the Governor in consultation and in
collaboration with the Directors. The voting members shall be
selected from among the following member groups:
        (1) one board-certified physician licensed, practicing
    and currently treating individuals with hemophilia or
    other bleeding disorders;
        (2) one nurse licensed, practicing and currently
    treating individuals with hemophilia or other bleeding
    disorders;
        (3) one social worker licensed, practicing and
    currently treating individuals with hemophilia or other
    bleeding disorders;
        (4) one representative of a federally funded
    Hemophilia Treatment Center;
        (5) one representative of an organization established
    under the Illinois Insurance Code for the purpose of
    providing health insurance;
        (6) one representative of a voluntary health
    organization that currently services the hemophilia and
    other bleeding disorders community; and
        (7) one patient or caregiver of a patient with
    hemophilia or other bleeding disorder.
The Board may also have up to 5 additional nonvoting members as
determined appropriate by the Directors. Nonvoting members may
be persons with or caregivers of a patient with hemophilia or a
bleeding disorder other than hemophilia or persons experienced
in the diagnosis, treatment, care, and support of individuals
with hemophilia or other bleeding disorders.
    No more than a majority of the voting members may be of the
same political party. Members of the Board shall elect one of
its members to act as chair for a term of 3 years. The chair
shall retain all voting rights. If there is a vacancy on the
Board, such position may be filled in the same manner as the
original appointment. Members of the Board shall receive no
compensation, but may be reimbursed for actual expenses
incurred in the carrying out of their duties. The Board shall
meet no less than 4 times per year and follow all policies and
procedures of the State of Illinois Open Meetings Law.
    (c) No later than 6 months after the date of enactment of
this amendatory Act, the Board shall submit to the Governor and
the General Assembly a report with recommendations for
maintaining access to care and obtaining appropriate health
insurance coverage for individuals with hemophilia and other
bleeding disorders. The report shall be subject to public
review and comment prior to adoption. No later than 6 months
after adoption by the Governor and Legislature and annually
thereafter, the Director of Healthcare and Family Services
shall issue a report, which shall be made available to the
public, on the status of implementing the recommendations as
proposed by the Board and on any state and national activities
with regard to hemophilia and other bleeding disorders.
 
    (410 ILCS 420/4 rep.)
    Section 21. The Hemophilia Care Act is amended by repealing
Section 4.
 
    Section 99. Effective date. This Act takes effect upon
becoming law.

Effective Date: 7/2/2007