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Public Act 095-0012
Public Act 0012 95TH GENERAL ASSEMBLY
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Public Act 095-0012 |
SB1580 Enrolled |
LRB095 09918 KBJ 30129 b |
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| 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
|
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