Full Text of HB4548 97th General Assembly
HB4548eng 97TH GENERAL ASSEMBLY |
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| 1 | | AN ACT concerning public health.
| 2 | | Be it enacted by the People of the State of Illinois,
| 3 | | represented in the General Assembly:
| 4 | | Section 5. The Alzheimer's Disease Assistance Act is | 5 | | amended by changing Sections 2, 3, 4, 5, 6, and 7 as follows:
| 6 | | (410 ILCS 405/2) (from Ch. 111 1/2, par. 6952)
| 7 | | Sec. 2. Policy declaration. The General Assembly finds that | 8 | | dementia is a general term for cognitive decline caused by | 9 | | various diseases and conditions that result in damaged brain | 10 | | cells or connections between brain cells. Alzheimer's disease | 11 | | is the most common type of dementia, caused by physical changes | 12 | | in the brain and accounting for 60% to 80% of cases. There are | 13 | | many other causes of dementia, known here as related disorders. | 14 | | Today Alzheimer's disease affects
Alzheimer's disease and | 15 | | related disorders are devastating health conditions
which | 16 | | destroy certain vital cells of the brain and which affect an | 17 | | estimated
5,400,000 4,500,000
Americans ; . This means that | 18 | | approximately 210,000 200,000
Illinois
citizens have | 19 | | Alzheimer's disease are victims . The General Assembly also | 20 | | recognizes that the incidence of Alzheimer's disease is rising | 21 | | and expected to reach 240,000 in Illinois by 2025. The General | 22 | | Assembly finds that Medicaid costs for individuals with | 23 | | Alzheimer's disease are 9 times higher than the costs for a |
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| 1 | | person without Alzheimer's disease in the same age group and | 2 | | that 71% of all Illinois nursing home residents have some | 3 | | degree of cognitive impairment, with more than half of that | 4 | | group having moderate to severe cognitive decline finds that | 5 | | 50% of all
nursing home admissions in the State may be | 6 | | attributable to the Alzheimer's
disease and related disorders | 7 | | and that these conditions are the fourth
leading cause of death | 8 | | among the elderly . | 9 | | The General Assembly also finds that Alzheimer's is not a | 10 | | normal part of aging, although the greatest known risk factor | 11 | | is increasing age, and the majority of people with Alzheimer's | 12 | | are 65 and older. But Alzheimer's is not just a disease of old | 13 | | age. Up to 5% of people with the disease have early-onset | 14 | | Alzheimer's (also known as younger-onset), which often appears | 15 | | when someone is in their forties or fifties. It is the opinion | 16 | | of the General
Assembly that Alzheimer's disease and related | 17 | | disorders cause serious
financial, social , and emotional | 18 | | hardships on persons with Alzheimer's disease or related | 19 | | disorders the victims and their families
of such a major | 20 | | consequence that it is essential for the State to develop and
| 21 | | implement policies, plans, programs and services to alleviate | 22 | | such hardships.
| 23 | | The General Assembly recognizes that there is no known | 24 | | cause or cure
of Alzheimer's disease at this time, and that it | 25 | | can progress
over an extended period of time and to such a | 26 | | degree that a person with Alzheimer's disease dies from |
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| 1 | | Alzheimer's disease. The General Assembly recognizes that | 2 | | Alzheimer's disease is the sixth leading cause of death across | 3 | | all ages in the United States and the fifth leading cause of | 4 | | death for those aged 65 or older the victim's
deteriorated | 5 | | condition makes him or her susceptible to other medical
| 6 | | disorders that generally prove fatal . It is the intent of the | 7 | | General
Assembly, through implementation of this Act, to | 8 | | establish a program for
the conduct of research regarding the | 9 | | cause, cure and treatment of Alzheimer's
disease and related | 10 | | disorders; and, through
the establishment of Regional | 11 | | Alzheimer's Disease Assistance Centers and
a comprehensive, | 12 | | Statewide system of regional and community-based services,
to | 13 | | provide for the identification, evaluation, diagnosis, | 14 | | referral and
treatment of individuals with Alzheimer's disease | 15 | | or related disorders. It is also the intent of the General | 16 | | Assembly to provide adequate and appropriate State policy and | 17 | | regulations to ensure that Illinois persons with Alzheimer's | 18 | | disease and related disorders are able to maintain their | 19 | | quality of life and their dignity as they progress through the | 20 | | course of the disease victims of such health problems .
| 21 | | (Source: P.A. 93-929, eff. 8-12-04.)
| 22 | | (410 ILCS 405/3) (from Ch. 111 1/2, par. 6953)
| 23 | | Sec. 3. Definitions. As used in this Act:
| 24 | | (a) "Alzheimer's disease and related disorders " or | 25 | | "Alzheimer's" or "AD" means the most common form of dementia |
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| 1 | | that causes problems with memory, thinking, and behavior. | 2 | | Symptoms usually develop slowly and get worse over time, | 3 | | becoming severe enough to interfere with daily tasks. Symptoms | 4 | | include a decline in memory and the loss of function in at | 5 | | least one other cognitive ability, such as the ability to | 6 | | generate coherent speech or understand written or spoken | 7 | | language; the ability to recognize or identify objects; the | 8 | | ability to execute motor activities; or the ability to think | 9 | | abstractly a health condition
resulting from significant | 10 | | destruction of brain tissue with resultant loss
of brain | 11 | | function, including, but not limited to, progressive, | 12 | | degenerative
and dementing illnesses including presenile and | 13 | | senile dementias, including
Alzheimer's disease and other | 14 | | related disorders .
| 15 | | (a-5) "Dementia" means cognitive decline, including a loss | 16 | | of memory and other mental abilities severe enough to interfere | 17 | | with daily life. | 18 | | (a-10) "Related disorders" or "related dementias" means | 19 | | any other form of dementia that is not caused by Alzheimer's | 20 | | disease. | 21 | | (a-15) "Dementia-capable State" means that the State of | 22 | | Illinois and its long-term care services, community-based | 23 | | services, and dementia support systems have: | 24 | | (1) the ability to identify people with dementia and | 25 | | their caregivers; | 26 | | (2) information, referral, and service coordination |
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| 1 | | systems that provide person-centered services to people | 2 | | with dementia and their caregivers; | 3 | | (3) eligibility criteria for public programs that are | 4 | | equitable for people with dementia; | 5 | | (4) coverage of services that people with dementia and | 6 | | their caregivers are likely to use; | 7 | | (5) a professional caregiving workforce that knows | 8 | | about Alzheimer's disease and other dementias and how to | 9 | | serve that population and their caregivers; and | 10 | | (6) quality assurance systems that take into account | 11 | | the unique needs of people with dementia and their | 12 | | caregivers. | 13 | | (b) "Regional Alzheimer's Disease Assistance Center" or | 14 | | "Regional ADA
Center" means any postsecondary higher | 15 | | educational institution having
a medical school in affiliation | 16 | | with a medical center and having a National
Institutes of | 17 | | Health and National Institutes on Aging sponsored Alzheimer's
| 18 | | Disease Core Center.
Any Regional ADA Center which was | 19 | | designated as having a National Alzheimer's
Disease Core Center | 20 | | but no longer carries such designation shall continue to
serve | 21 | | as a Regional ADA Center.
| 22 | | (c) "Primary Alzheimer's provider" means a licensed | 23 | | hospital, a medical
center under the supervision of a physician | 24 | | licensed to practice medicine
in all of its branches, or a | 25 | | medical center that provides medical
consultation, evaluation, | 26 | | referral and treatment to persons who may be or
who have been |
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| 1 | | diagnosed as individuals with victims of Alzheimer's disease or | 2 | | related
disorders pursuant to policies, standards, criteria | 3 | | and procedures adopted
under an affiliation agreement with a | 4 | | Regional ADA Center under this Act.
| 5 | | (d) "Alzheimer's disease assistance network" or "ADA | 6 | | network" means the
various health, mental health and social | 7 | | services agencies that provide
referral, treatment and support | 8 | | services under standards and plans
adopted and implemented in | 9 | | conjunction with a Regional ADA Center.
| 10 | | (e) "ADA Advisory Committee" or "Advisory Committee" or | 11 | | "Committee" means
the Alzheimer's Disease Advisory Committee | 12 | | created under Section 6 of this Act.
| 13 | | (f) "Department" means the Illinois Department of Public | 14 | | Health.
| 15 | | (Source: P.A. 90-404, eff. 8-15-97.)
| 16 | | (410 ILCS 405/4) (from Ch. 111 1/2, par. 6954)
| 17 | | Sec. 4.
Development of standards for a service network and
| 18 | | designation of regional centers and primary providers. By | 19 | | January 1, 1987, the
Department, in consultation with the | 20 | | Advisory Committee, shall develop
standards for the conduct of | 21 | | research and for the identification,
evaluation, diagnosis, | 22 | | referral and treatment of individuals with victims of | 23 | | Alzheimer's
disease and related disorders and their families | 24 | | through the ADA network of
designated regional centers and | 25 | | other providers of service
under this Act. Such standards shall |
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| 1 | | include all of the following:
| 2 | | (a) A description of the specific populations and | 3 | | geographic areas to be
served through ADA networks that may | 4 | | be established under this Act.
| 5 | | (b) Standards, criteria and procedures for designation | 6 | | of Regional ADA
Centers, which ensure the provision of | 7 | | quality care to a broad segment of
the population through | 8 | | on-site facilities and services and through a
network of | 9 | | primary Alzheimer's providers and other providers of | 10 | | service that
may be available within the service area | 11 | | defined by the Department. At
least 2 Regional ADA Centers | 12 | | shall be conveniently
located to serve the
Chicago | 13 | | metropolitan area and at least one Regional ADA Center | 14 | | shall be
conveniently located to serve the balance of the | 15 | | State. The
Regional ADA Centers shall provide at least the | 16 | | following:
| 17 | | (1) comprehensive diagnosis and treatment | 18 | | facilities and services which
have (i) professional | 19 | | medical staff specially-trained in geriatric
medicine, | 20 | | neurology, psychiatry and pharmacology,
and the | 21 | | detection, diagnosis and treatment of Alzheimer's | 22 | | disease and
related disorders, (ii) sufficient support | 23 | | staff who are trained as caregivers
to individuals with | 24 | | victims of Alzheimer's disease and related disorders, | 25 | | (iii) appropriate and
adequate equipment necessary for | 26 | | diagnosis and treatment, and (iv) transportation
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| 1 | | services necessary for outreach to the service area | 2 | | defined by the Department
and for assuring access of | 3 | | patients to available services, and (v)
such other
| 4 | | support services, staff and equipment as may be | 5 | | required;
| 6 | | (2) consultation and referral services for | 7 | | individuals with AD victims and their families or | 8 | | demonstrated instances of referral to consultation and | 9 | | referral services provided by organizations and | 10 | | agencies specializing in Alzheimer's disease and | 11 | | related disorders for those affected to
ensure | 12 | | informed consent to treatment and to assist them in | 13 | | obtaining
necessary assistance and support services | 14 | | through primary Alzheimer's
providers and various | 15 | | private and public agencies that may otherwise be
| 16 | | available to provide services under this Act;
| 17 | | (3) research programs and facilities to assist | 18 | | faculty and students in
discovering the cause of and | 19 | | the diagnosis, cure and treatment for
Alzheimer's | 20 | | disease and related disorders;
| 21 | | (4) training, consultation and continuing | 22 | | education for caregivers or demonstrated instances of | 23 | | referral to training, consultation, and continuing | 24 | | education provided by organizations and agencies | 25 | | specializing in Alzheimer's disease and related | 26 | | disorders for those affected ,
including families of |
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| 1 | | those who are affected by Alzheimer's disease and | 2 | | related
disorders;
| 3 | | (5) centralized data collection, processing and | 4 | | storage that will serve
as a clearinghouse of | 5 | | information to assist individuals with AD victims , | 6 | | families and ADA
Resources, and to facilitate | 7 | | research; and
| 8 | | (6) programs of scientific and medical research in | 9 | | relation to
Alzheimer's disease and related disorders | 10 | | that are designed and conducted
in a manner that may | 11 | | enable such center to qualify for Federal financial
| 12 | | participation in the cost of such programs.
| 13 | | (c) Procedures for recording and reporting research | 14 | | and treatment
results by primary Alzheimer's providers and | 15 | | other affiliated providers of
service that are within the | 16 | | ADA network to the Regional ADA Center and to the
| 17 | | Department.
| 18 | | (d) Policies, procedures and minimum standards and | 19 | | criteria to be
included in affiliation agreements between | 20 | | primary Alzheimer's providers and
the Regional ADA Center | 21 | | in the conduct of any research and in the
diagnosis, | 22 | | referral and treatment of individuals with victims of | 23 | | Alzheimer's disease and
related disorders and their | 24 | | families.
| 25 | | (e) Policies, procedures, standards and criteria, | 26 | | including medical and
financial eligibility factors, |
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| 1 | | governing admission to and utilization of
the programs, | 2 | | facilities and services available through the ADA network | 3 | | by
persons who may be or who have been diagnosed as having | 4 | | victims of Alzheimer's
disease or a and related disorder | 5 | | disorders , including forms and procedures for obtaining
| 6 | | necessary patient consents to participation in research, | 7 | | and in the
reporting and processing of appropriate | 8 | | information in a patient's medical
records in relation to | 9 | | consultations, referrals and treatments by the
various | 10 | | providers of service within the ADA network.
| 11 | | (Source: P.A. 90-404, eff. 8-15-97; 91-357, eff. 7-29-99 .)
| 12 | | (410 ILCS 405/5) (from Ch. 111 1/2, par. 6955)
| 13 | | Sec. 5. State ADA Plan. By January 1, 2014 1987 , and every | 14 | | 3 years
thereafter, the Department shall prepare a State | 15 | | Alzheimer's Disease
Assistance Plan in consultation with the | 16 | | Advisory Committee to guide
research, diagnosis, referral and | 17 | | treatment services within each service
area described by the | 18 | | Department. To ensure meaningful input by stakeholders into the | 19 | | plan, the Department or members of the General Assembly or | 20 | | other interested parties may hold public hearings at locations | 21 | | throughout the State for input by consumers and providers of | 22 | | care. The Department or members of the General Assembly or | 23 | | other interested parties may also utilize technological means | 24 | | or work with advocacy organizations that have technological | 25 | | capability, such as Webcasts or online surveys, to gather |
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| 1 | | feedback on recommendations from persons and families affected | 2 | | by Alzheimer's disease and the general public. State agencies | 3 | | with programs serving the population impacted by Alzheimer's | 4 | | may also present testimony at one of the State hearings to | 5 | | specify how they are meeting the needs of people with | 6 | | Alzheimer's. Various stakeholders, including related consumer | 7 | | organizations or advocacy organizations as well as individuals | 8 | | with Alzheimer's disease or a related disorder and caregivers | 9 | | of such individuals, may also be invited to provide public | 10 | | comment. The results of any public hearings held pursuant to | 11 | | this Section shall be presented to the Department in a format | 12 | | as determined by the Department to be included in the State | 13 | | Alzheimer's Disease Assistance Plan. | 14 | | The plan shall incorporate any testimony that may be | 15 | | offered on the following topics: | 16 | | (1) An assessment of the current and future impact of | 17 | | Alzheimer's disease on Illinois residents. | 18 | | (2) An examination of the existing industries, | 19 | | services, and resources addressing the needs of persons | 20 | | with Alzheimer's, their families, and caregivers. | 21 | | (3) The development of a strategy to mobilize a State | 22 | | response to this public health crisis. | 23 | | (4) Trends in State Alzheimer's population and needs, | 24 | | including the changing population with dementia, | 25 | | including, but not limited to, the use of State | 26 | | surveillance data of persons with Alzheimer's disease for |
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| 1 | | purposes of having proper estimates of the number of | 2 | | persons in the State with Alzheimer's disease. | 3 | | (5) The current economic impact of Alzheimer's disease | 4 | | and related disorders for the State, including the cost of | 5 | | direct and indirect care paid by Medicaid, other | 6 | | federal-State funded programs, the estimated direct and | 7 | | indirect costs of family caregiving, and the cost of | 8 | | Alzheimer's disease to businesses in Illinois. | 9 | | (6) Existing services, resources, and capacity, | 10 | | including, but not limited to, the: | 11 | | (a) type, cost, and availability of dementia | 12 | | services in this State; | 13 | | (b) dementia-specific training requirements for | 14 | | paid professionals at any level and in any provider | 15 | | setting (institutional or home or community based) | 16 | | engaged in the care of persons with dementia; | 17 | | (c) quality care measures instituted in this State | 18 | | for long-term care facilities; assisted living | 19 | | facilities; supportive living facilities; or any other | 20 | | residential program available for the care of persons | 21 | | with dementia; | 22 | | (d) capacity of public safety and law enforcement | 23 | | to respond to persons with Alzheimer's; | 24 | | (e) availability of and amount spent by the State | 25 | | on home and community-based resources for persons with | 26 | | Alzheimer's and related disorders and the availability |
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| 1 | | of State-supported respite care to assist families; | 2 | | (f) inventory of all residential options for | 3 | | individuals with dementia in this State, including, | 4 | | but not limited to, long–term special care units for | 5 | | people with dementia, assisted living units for | 6 | | dementia, and supportive living units for dementia; | 7 | | (g) inventory of geriatric-psychiatric units for | 8 | | persons with behavior disorders associated with | 9 | | Alzheimer's and related disorders; | 10 | | (h) specific efforts of State agencies directed | 11 | | towards persons with Alzheimer's disease and related | 12 | | disorders and the agencies' estimation of resources | 13 | | that will be needed to meet an increased demand; and | 14 | | (i) level of State support of Alzheimer's research | 15 | | through Illinois universities or other institutions | 16 | | and the results of such investments reflected both in | 17 | | research outcomes and subsequent federal investment in | 18 | | research in Illinois. | 19 | | (7) Recommended changes or additions to State | 20 | | policies, including, but not limited to, directions for the | 21 | | provision of clear and coordinated services and supports to | 22 | | persons and families living with Alzheimer's and related | 23 | | disorders and strategies to address any identified gaps in | 24 | | services. Such plan shall indicate any research
programs | 25 | | being conducted and the status, results, costs and funding | 26 | | sources
of such programs. |
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| 1 | | The plan shall also indicate the number of persons
served, | 2 | | the extent of services provided, and the resources required for | 3 | | the
delivery of services through the ADA networks established | 4 | | under this Act.
Such plan shall identify and describe the | 5 | | duties and accomplishments of
each Regional ADA Center, the | 6 | | primary Alzheimer's providers and other various
providers of | 7 | | service within the ADA network of the described service area.
| 8 | | The Department shall consult with and take into consideration | 9 | | the plans of
local and State comprehensive health planning | 10 | | agencies recognized under the
Comprehensive Health Planning | 11 | | Act , as well as recommendations regarding Alzheimer's disease | 12 | | and related disorders that may be included in the State Health | 13 | | Improvement Plan .
| 14 | | (Source: P.A. 84-378; 84-513.)
| 15 | | (410 ILCS 405/6) (from Ch. 111 1/2, par. 6956)
| 16 | | Sec. 6. ADA Advisory Committee. There is created the | 17 | | Alzheimer's
Disease Advisory Committee consisting of 23 21 | 18 | | voting members appointed by the
Director of the Department, as | 19 | | well as 5 nonvoting members as hereinafter
provided in this | 20 | | Section. The Director or his designee shall serve as one
of the | 21 | | 23 21 voting members and as
the Chairman of the Committee. | 22 | | Those appointed as voting members shall
include persons who are | 23 | | experienced in
research and the delivery of services to | 24 | | individuals with Alzheimer's disease or a related disorder | 25 | | victims and their families.
Such members shall include 3 4 |
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| 1 | | physicians licensed to practice medicine in all of
its | 2 | | branches, one representative of a postsecondary educational | 3 | | institution
which administers or is affiliated with a medical | 4 | | center in the State, one
representative of a licensed hospital, | 5 | | one registered nurse with a specialty in geriatric or dementia | 6 | | care , one
representative of a long term care facility under the | 7 | | Nursing Home Care
Act, one representative of a long term care | 8 | | facility under the Assisted Living and Shared Housing Act, one | 9 | | representative from a supportive living facility specially | 10 | | serving individuals with dementia, one representative of a home | 11 | | care agency serving individuals with dementia, one | 12 | | representative of a hospice with a specialty in palliative care | 13 | | for dementia, one representative of an area
agency on aging as | 14 | | defined by Section 3.07 of the Illinois Act on the
Aging, one | 15 | | representative from a leading advocacy organization serving | 16 | | individuals with Alzheimer's disease, one licensed social | 17 | | worker, one representative of law enforcement, 2 individuals | 18 | | with early-stage Alzheimer's disease, 3 of an organization | 19 | | established
under the Illinois Insurance Code for the purpose | 20 | | of providing health
insurance, 5 family members or | 21 | | representatives of individuals with victims of Alzheimer's
| 22 | | disease and related disorders, and 3 4 members of the general | 23 | | public. Among
the physician appointments shall be persons with | 24 | | specialties in the fields
of neurology, family medicine, | 25 | | psychiatry and pharmacology. Among the
general public members, | 26 | | at least 2 appointments shall include persons 65
years of age |
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| 1 | | or older.
| 2 | | In addition to the 23 21 voting members, the Secretary of | 3 | | Human Services (or
his or her designee) and
one additional | 4 | | representative of the Department of Human Services designated | 5 | | by
the Secretary plus the Directors of the following
State | 6 | | agencies or their designees who are qualified to represent each | 7 | | Department's programs and services for those with Alzheimer's | 8 | | disease or related disorders shall serve as nonvoting members:
| 9 | | Department on Aging, Department
of Healthcare and Family | 10 | | Services, Department of Public Health, Department of Human | 11 | | Services, and Guardianship and Advocacy Commission.
| 12 | | Each voting member appointed by the
Director of Public | 13 | | Health shall serve for a term of 2 years, and until his
| 14 | | successor is appointed and qualified. Members of the Committee | 15 | | shall not
be compensated but shall be reimbursed for expenses | 16 | | actually incurred in
the performance of their duties. No more | 17 | | than 12 11 voting members may be of
the same political party. | 18 | | Vacancies shall be filled in the same manner as
original | 19 | | appointments.
| 20 | | The Committee shall review all State programs and services | 21 | | provided by State agencies that are directed toward persons | 22 | | with Alzheimer's disease and related dementias, and by | 23 | | consensus recommend changes to improve the State's response to | 24 | | this serious health problem. Such recommendations shall be | 25 | | included in the State plan described in this Act. | 26 | | (Source: P.A. 95-331, eff. 8-21-07.)
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| 1 | | (410 ILCS 405/7) (from Ch. 111 1/2, par. 6957)
| 2 | | Sec. 7. Regional ADA center funding. Pursuant to
| 3 | | appropriations enacted by the General Assembly, the Department | 4 | | shall
provide funds to hospitals affiliated with each
Regional | 5 | | ADA Center for
necessary research and
for the development and | 6 | | maintenance of services for individuals with victims of | 7 | | Alzheimer's
disease and related disorders and their families. | 8 | | For the fiscal year
beginning July 1, 2003, and each year | 9 | | thereafter, the Department shall effect
payments under this | 10 | | Section to hospitals affiliated with each Regional ADA
Center | 11 | | through the Department of Healthcare and Family Services | 12 | | (formerly
Illinois Department of Public Aid) under the | 13 | | Excellence in Alzheimer's Disease Center Treatment Act. The | 14 | | Department of Healthcare and Family Services shall annually | 15 | | report to the Advisory Committee established under this Act | 16 | | regarding the funding of centers under this Act. The Department | 17 | | shall
include the annual expenditures for this purpose in the | 18 | | plan required by
Section 5 of this Act.
| 19 | | (Source: P.A. 95-331, eff. 8-21-07.)
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