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Public Act 095-0012 |
SB1580 Enrolled |
LRB095 09918 KBJ 30129 b |
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AN ACT concerning public health.
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Be it enacted by the People of the State of Illinois,
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represented in the General Assembly:
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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.
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Section 10. The Illinois Administrative Procedure Act is |
amended by changing Section 5-45 as follows:
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(5 ILCS 100/5-45) (from Ch. 127, par. 1005-45)
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Sec. 5-45. Emergency rulemaking.
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(a) "Emergency" means the existence of any situation that |
any agency
finds reasonably constitutes a threat to the public |
interest, safety, or
welfare.
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(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
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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 |
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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
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persons who may be affected by them.
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(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
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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
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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 |
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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
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Section.
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(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.
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(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 |
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this subsection (e) shall be deemed to be necessary for the
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public interest, safety, and welfare.
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(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
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public interest, safety, and welfare.
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(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
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public interest, safety, and welfare.
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(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
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public interest, safety, and welfare.
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(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
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public interest, safety, and welfare.
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(j) In order to provide for the expeditious and timely |
implementation of the provisions of the State's fiscal year |
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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.
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(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 |
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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.
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(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.
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(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 |
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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.
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(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.)
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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)
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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:
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(1) Provide for the determination of a facility's payment
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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 |
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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.
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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
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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 |
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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%.
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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
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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.
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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
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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.
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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
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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:
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(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
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Department implements the new payment methodology until a |
higher nursing
component rate of
reimbursement is achieved |
by that
facility.
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(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.
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(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.
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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.
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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
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in effect on March 31, 2002, as defined by the Department.
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For facilities licensed by the Department of Public Health |
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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.
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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,
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which shall be 5.9% less than the rates in effect on June 30, |
2002.
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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
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implementation of the payment methodologies required under |
Section 5A-12.
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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.
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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.
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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.
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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) |
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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.
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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
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Department shall not make any alterations of regulations which |
would reduce
any component of the Medicaid rate to a level |
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below what that component would
have been utilizing in the rate |
effective on July 1, 1984.
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(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.
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(3) Shall take into account the medical and psycho-social
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characteristics and needs of the patients.
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(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.
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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
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assistants, and which is in accordance with accepted |
professional
practices. Reimbursement also may be made for |
utilization of other
supportive personnel under appropriate |
supervision.
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(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; |
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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.)
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Section 20. The Hemophilia Care Act is amended by changing |
Section 1 and by adding Sections 1.5 and 2.5 as follows:
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(410 ILCS 420/1) (from Ch. 111 1/2, par. 2901)
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Sec. 1. Definitions. As used in this Act, unless the |
context clearly
requires otherwise:
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(1) "Department" means the Illinois Department of |
Healthcare and Family Services
Public Aid .
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(1.5) "Director" means the Director of Healthcare and |
Family Services and the Director of Insurance
Public Aid .
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(2) (Blank).
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(3) "Hemophilia" means a bleeding tendency resulting from a |
genetically
determined deficiency in the blood.
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(4) (Blank).
"Committee" means the Hemophilia Advisory |
Committee created under this
Act.
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(5) "Eligible person" means any resident of the State |
suffering from
hemophilia.
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(6) "Family" means:
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(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
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dependent the eligible person is, and
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(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.
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(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
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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.
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(8) "Gross income" means the base income for State income |
tax purposes
of all members of the family.
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(9) "Available family income" means the lesser of:
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(a) Gross income minus the sum of (1) $5,500,
and (2) |
$3,500 times the number of persons
in the family, or
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(b) One half of gross income.
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(10) "Board" means the Hemophilia Advisory Review Board.
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(Source: P.A. 89-507, eff. 7-1-97; 90-587, eff. 7-1-98; revised |
12-15-05.)
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(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 |
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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 |
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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 |
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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 |
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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.
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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 |