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Public Act 095-0012 |
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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 |
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
| ||
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.
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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.
| ||
(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.
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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
| ||
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.
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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 |
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 |
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)
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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 |
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
| ||
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%.
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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
| ||
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.
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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
| ||
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.
| ||
(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
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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 |
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
| ||
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.
| ||
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.
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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
| ||
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.
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