Full Text of HB4548 97th General Assembly
HB4548 97TH GENERAL ASSEMBLY |
| | 97TH GENERAL ASSEMBLY
State of Illinois
2011 and 2012 HB4548 Introduced 2/1/2012, by Rep. Patricia R. Bellock SYNOPSIS AS INTRODUCED: |
| 410 ILCS 405/2 | from Ch. 111 1/2, par. 6952 | 410 ILCS 405/3 | from Ch. 111 1/2, par. 6953 | 410 ILCS 405/4 | from Ch. 111 1/2, par. 6954 | 410 ILCS 405/5 | from Ch. 111 1/2, par. 6955 | 410 ILCS 405/6 | from Ch. 111 1/2, par. 6956 | 410 ILCS 405/7 | from Ch. 111 1/2, par. 6957 |
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Amends the Alzheimer's Disease Assistance Act. Makes changes to the Act's policy declaration. Changes the definition of "Alzheimer's disease" and sets forth definitions for "dementia", "related disorders", and "dementia-capable State". Provides that by January 1, 2014 (instead of 1987), and every
3 years thereafter, the Department of Public
Health shall prepare a State
Alzheimer's Disease Assistance Plan and sets forth provisions with regard to the plan concerning public hearings, gathering
feedback on recommendations, input from agencies and stakeholders, purpose and directive, and the examination of certain subject matter. Makes changes to the composition of the Alzheimer's Disease Advisory Committee. Makes other changes.
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| | | FISCAL NOTE ACT MAY APPLY | |
| | A BILL FOR |
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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 dementia affects
Alzheimer's disease and related | 15 | | disorders are devastating health conditions
which destroy | 16 | | certain vital cells of the brain and which affect an estimated
| 17 | | 5,400,000 4,500,000
Americans ; . This means that approximately | 18 | | 210,000 200,000
Illinois
citizens have Alzheimer's disease are | 19 | | victims . The General Assembly also recognizes that the | 20 | | incidence of Alzheimer's disease is rising and expected to | 21 | | reach 240,000 in Illinois by 2025. The General Assembly finds | 22 | | that Medicaid costs for individuals with Alzheimer's disease | 23 | | are 9 times higher than the costs for a person without |
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| 1 | | Alzheimer's disease in the same age group and that 71% of all | 2 | | Illinois nursing home residents have some degree of cognitive | 3 | | impairment, with more than half of that group having moderate | 4 | | to severe cognitive decline finds that 50% of all
nursing home | 5 | | admissions in the State may be attributable to the Alzheimer's
| 6 | | disease and related disorders and that these conditions are the | 7 | | fourth
leading cause of death among the elderly . | 8 | | The General Assembly also finds that Alzheimer's is not a | 9 | | normal part of aging, although the greatest known risk factor | 10 | | is increasing age, and the majority of people with Alzheimer's | 11 | | are 65 and older. But Alzheimer's is not just a disease of old | 12 | | age. Up to 5% of people with the disease have early-onset | 13 | | Alzheimer's (also known as younger-onset), which often appears | 14 | | when someone is in their forties or fifties. It is the opinion | 15 | | of the General
Assembly that Alzheimer's disease and related | 16 | | disorders cause serious
financial, social , and emotional | 17 | | hardships on persons with Alzheimer's disease or related | 18 | | disorders the victims and their families
of such a major | 19 | | consequence that it is essential for the State to develop and
| 20 | | implement policies, plans, programs and services to alleviate | 21 | | such hardships.
| 22 | | The General Assembly recognizes that there is no known | 23 | | cause or cure
of Alzheimer's disease at this time, and that it | 24 | | can progress
over an extended period of time and to such a | 25 | | degree that a person with Alzheimer's disease dies from | 26 | | Alzheimer's disease. The General Assembly recognizes that |
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| 1 | | Alzheimer's disease is the sixth leading cause of death across | 2 | | all ages in the United States and the fifth leading cause of | 3 | | death for those aged 65 or older the victim's
deteriorated | 4 | | condition makes him or her susceptible to other medical
| 5 | | disorders that generally prove fatal . It is the intent of the | 6 | | General
Assembly, through implementation of this Act, to | 7 | | establish a program for
the conduct of research regarding the | 8 | | cause, cure and treatment of Alzheimer's
disease and related | 9 | | disorders; and, through
the establishment of Regional | 10 | | Alzheimer's Disease Assistance Centers and
a comprehensive, | 11 | | Statewide system of regional and community-based services,
to | 12 | | provide for the identification, evaluation, diagnosis, | 13 | | referral and
treatment of individuals with Alzheimer's disease | 14 | | or related disorders. It is also the intent of the General | 15 | | Assembly to provide adequate and appropriate State policy and | 16 | | regulations to ensure that Illinois persons with Alzheimer's | 17 | | disease and related disorders are able to maintain their | 18 | | quality of life and their dignity as they progress through the | 19 | | course of the disease victims of such health problems .
| 20 | | (Source: P.A. 93-929, eff. 8-12-04.)
| 21 | | (410 ILCS 405/3) (from Ch. 111 1/2, par. 6953)
| 22 | | Sec. 3. Definitions. As used in this Act:
| 23 | | (a) "Alzheimer's disease and related disorders " or | 24 | | "Alzheimer's" or "AD" means the most common form of dementia | 25 | | that causes problems with memory, thinking, and behavior. |
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| 1 | | Symptoms usually develop slowly and get worse over time, | 2 | | becoming severe enough to interfere with daily tasks. Symptoms | 3 | | include a decline in memory and the loss of function in at | 4 | | least one other cognitive ability, such as the ability to | 5 | | generate coherent speech or understand written or spoken | 6 | | language; the ability to recognize or identify objects; the | 7 | | ability to execute motor activities; or the ability to think | 8 | | abstractly a health condition
resulting from significant | 9 | | destruction of brain tissue with resultant loss
of brain | 10 | | function, including, but not limited to, progressive, | 11 | | degenerative
and dementing illnesses including presenile and | 12 | | senile dementias, including
Alzheimer's disease and other | 13 | | related disorders .
| 14 | | (a-5) "Dementia" means cognitive decline, including a loss | 15 | | of memory and other mental abilities severe enough to interfere | 16 | | with daily life. | 17 | | (a-10) "Related disorders" or "related dementias" means | 18 | | any other form of dementia that is not caused by Alzheimer's | 19 | | disease. | 20 | | (a-15) "Dementia-capable State" means that the State of | 21 | | Illinois and its long-term care services, community-based | 22 | | services, and dementia support systems have: | 23 | | (1) the ability to identify people with dementia and | 24 | | their caregivers; | 25 | | (2) information, referral, and service coordination | 26 | | systems that provide person-centered services to people |
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| 1 | | with dementia and their caregivers; | 2 | | (3) eligibility criteria for public programs that are | 3 | | equitable for people with dementia; | 4 | | (4) coverage of services that people with dementia and | 5 | | their caregivers are likely to use; | 6 | | (5) a professional caregiving workforce that knows | 7 | | about Alzheimer's disease and other dementias and how to | 8 | | serve that population and their caregivers; and | 9 | | (6) quality assurance systems that take into account | 10 | | the unique needs of people with dementia and their | 11 | | caregivers; | 12 | | (b) "Regional Alzheimer's Disease Assistance Center" or | 13 | | "Regional ADA
Center" means any postsecondary higher | 14 | | educational institution having
a medical school in affiliation | 15 | | with a medical center and having a National
Institutes of | 16 | | Health and National Institutes on Aging sponsored Alzheimer's
| 17 | | Disease Core Center.
Any Regional ADA Center which was | 18 | | designated as having a National Alzheimer's
Disease Core Center | 19 | | but no longer carries such designation shall continue to
serve | 20 | | as a Regional ADA Center.
| 21 | | (c) "Primary Alzheimer's provider" means a licensed | 22 | | hospital, a medical
center under the supervision of a physician | 23 | | licensed to practice medicine
in all of its branches, or a | 24 | | medical center that provides medical
consultation, evaluation, | 25 | | referral and treatment to persons who may be or
who have been | 26 | | diagnosed as individuals with victims of Alzheimer's disease or |
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| 1 | | related
disorders pursuant to policies, standards, criteria | 2 | | and procedures adopted
under an affiliation agreement with a | 3 | | Regional ADA Center under this Act.
| 4 | | (d) "Alzheimer's disease assistance network" or "ADA | 5 | | network" means the
various health, mental health and social | 6 | | services agencies that provide
referral, treatment and support | 7 | | services under standards and plans
adopted and implemented in | 8 | | conjunction with a Regional ADA Center.
| 9 | | (e) "ADA Advisory Committee" or "Advisory Committee" or | 10 | | "Committee" means
the Alzheimer's Disease Advisory Committee | 11 | | created under Section 6 of this Act.
| 12 | | (f) "Department" means the Illinois Department of Public | 13 | | Health.
| 14 | | (Source: P.A. 90-404, eff. 8-15-97.)
| 15 | | (410 ILCS 405/4) (from Ch. 111 1/2, par. 6954)
| 16 | | Sec. 4.
Development of standards for a service network and
| 17 | | designation of regional centers and primary providers. By | 18 | | January 1, 1987, the
Department, in consultation with the | 19 | | Advisory Committee, shall develop
standards for the conduct of | 20 | | research and for the identification,
evaluation, diagnosis, | 21 | | referral and treatment of individuals with victims of | 22 | | Alzheimer's
disease and related disorders and their families | 23 | | through the ADA network of
designated regional centers and | 24 | | other providers of service
under this Act. Such standards shall | 25 | | include all of the following:
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| 1 | | (a) A description of the specific populations and | 2 | | geographic areas to be
served through ADA networks that may | 3 | | be established under this Act.
| 4 | | (b) Standards, criteria and procedures for designation | 5 | | of Regional ADA
Centers, which ensure the provision of | 6 | | quality care to a broad segment of
the population through | 7 | | on-site facilities and services and through a
network of | 8 | | primary Alzheimer's providers and other providers of | 9 | | service that
may be available within the service area | 10 | | defined by the Department. At
least 2 Regional ADA Centers | 11 | | shall be conveniently
located to serve the
Chicago | 12 | | metropolitan area and at least one Regional ADA Center | 13 | | shall be
conveniently located to serve the balance of the | 14 | | State. The
Regional ADA Centers shall provide at least the | 15 | | following:
| 16 | | (1) comprehensive diagnosis and treatment | 17 | | facilities and services which
have (i) professional | 18 | | medical staff specially-trained in geriatric
medicine, | 19 | | neurology, psychiatry and pharmacology,
and the | 20 | | detection, diagnosis and treatment of Alzheimer's | 21 | | disease and
related disorders, (ii) sufficient support | 22 | | staff who are trained as caregivers
to individuals with | 23 | | victims of Alzheimer's disease and related disorders, | 24 | | (iii) appropriate and
adequate equipment necessary for | 25 | | diagnosis and treatment, and (iv) transportation
| 26 | | services necessary for outreach to the service area |
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| 1 | | defined by the Department
and for assuring access of | 2 | | patients to available services, and (v)
such other
| 3 | | support services, staff and equipment as may be | 4 | | required;
| 5 | | (2) consultation and referral services for | 6 | | individuals with AD victims and their families or | 7 | | demonstrated instances of referral to consultation and | 8 | | referral services provided by organizations and | 9 | | agencies specializing in Alzheimer's disease and | 10 | | related disorders for those affected to
ensure | 11 | | informed consent to treatment and to assist them in | 12 | | obtaining
necessary assistance and support services | 13 | | through primary Alzheimer's
providers and various | 14 | | private and public agencies that may otherwise be
| 15 | | available to provide services under this Act;
| 16 | | (3) research programs and facilities to assist | 17 | | faculty and students in
discovering the cause of and | 18 | | the diagnosis, cure and treatment for
Alzheimer's | 19 | | disease and related disorders;
| 20 | | (4) training, consultation and continuing | 21 | | education for caregivers or demonstrated instances of | 22 | | referral to training, consultation, and continuing | 23 | | education provided by organizations and agencies | 24 | | specializing in Alzheimer's disease and related | 25 | | disorders for those affected ,
including families of | 26 | | those who are affected by Alzheimer's disease and |
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| 1 | | related
disorders;
| 2 | | (5) centralized data collection, processing and | 3 | | storage that will serve
as a clearinghouse of | 4 | | information to assist individuals with AD victims , | 5 | | families and ADA
Resources, and to facilitate | 6 | | research; and
| 7 | | (6) programs of scientific and medical research in | 8 | | relation to
Alzheimer's disease and related disorders | 9 | | that are designed and conducted
in a manner that may | 10 | | enable such center to qualify for Federal financial
| 11 | | participation in the cost of such programs.
| 12 | | (c) Procedures for recording and reporting research | 13 | | and treatment
results by primary Alzheimer's providers and | 14 | | other affiliated providers of
service that are within the | 15 | | ADA network to the Regional ADA Center and to the
| 16 | | Department.
| 17 | | (d) Policies, procedures and minimum standards and | 18 | | criteria to be
included in affiliation agreements between | 19 | | primary Alzheimer's providers and
the Regional ADA Center | 20 | | in the conduct of any research and in the
diagnosis, | 21 | | referral and treatment of individuals with victims of | 22 | | Alzheimer's disease and
related disorders and their | 23 | | families.
| 24 | | (e) Policies, procedures, standards and criteria, | 25 | | including medical and
financial eligibility factors, | 26 | | governing admission to and utilization of
the programs, |
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| 1 | | facilities and services available through the ADA network | 2 | | by
persons who may be or who have been diagnosed as having | 3 | | victims of Alzheimer's
disease or a and related disorder | 4 | | disorders , including forms and procedures for obtaining
| 5 | | necessary patient consents to participation in research, | 6 | | and in the
reporting and processing of appropriate | 7 | | information in a patient's medical
records in relation to | 8 | | consultations, referrals and treatments by the
various | 9 | | providers of service within the ADA network.
| 10 | | (Source: P.A. 90-404, eff. 8-15-97; 91-357, eff. 7-29-99 .)
| 11 | | (410 ILCS 405/5) (from Ch. 111 1/2, par. 6955)
| 12 | | Sec. 5. State ADA Plan. By January 1, 2014 1987 , and every | 13 | | 3 years
thereafter, the Department shall prepare a State | 14 | | Alzheimer's Disease
Assistance Plan in consultation with the | 15 | | Advisory Committee to guide
research, diagnosis, referral and | 16 | | treatment services within each service
area described by the | 17 | | Department. To ensure meaningful input by stakeholders into the | 18 | | plan, the Department shall hold 2 public hearings at locations | 19 | | throughout the State for input by consumers and providers of | 20 | | care. The Department shall also utilize technological means or | 21 | | work with advocacy organizations that have technological | 22 | | capability, such as Webcasts or online surveys, to gather | 23 | | feedback on recommendations from persons and families affected | 24 | | by Alzheimer's disease and the general public. State agencies | 25 | | with programs serving the population impacted by Alzheimer's |
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| 1 | | shall also present testimony at one of the State hearings to | 2 | | specify how they are meeting the needs of people with | 3 | | Alzheimer's. Various stakeholders, including related consumer | 4 | | organizations or advocacy organizations as well as individuals | 5 | | with Alzheimer's disease or a related disorder and caregivers | 6 | | of such individuals, shall also be invited to provide public | 7 | | comment. | 8 | | The plan is directed to assess the current and future | 9 | | impact of Alzheimer's disease on Illinois residents; to examine | 10 | | the existing industries, services, and resources addressing | 11 | | the needs of persons with Alzheimer's, their families, and | 12 | | caregivers; and to develop a strategy to mobilize a State | 13 | | response to this public health crisis. The plan shall include | 14 | | an examination of the following in its assessment and | 15 | | recommendations: | 16 | | (1) Trends in State Alzheimer's population and needs, | 17 | | including the changing population with dementia, | 18 | | including, but not limited to, the use of State | 19 | | surveillance data of persons with Alzheimer's disease for | 20 | | purposes of having proper estimates of the number of | 21 | | persons in the State with Alzheimer's disease. | 22 | | (2) The current economic impact of Alzheimer's disease | 23 | | and related disorders for the State, including the cost of | 24 | | direct and indirect care paid by Medicaid, other | 25 | | federal-State funded programs, the estimated direct and | 26 | | indirect costs of family caregiving, and the cost of |
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| 1 | | Alzheimer's disease to businesses in Illinois. | 2 | | (3) Existing services, resources, and capacity, | 3 | | including, but not limited to, the: | 4 | | (a) type, cost, and availability of dementia | 5 | | services in this State; | 6 | | (b) dementia-specific training requirements for | 7 | | paid professionals at any level and in any provider | 8 | | setting (institutional or home or community based) | 9 | | engaged in the care of persons with dementia; | 10 | | (c) quality care measures instituted in this State | 11 | | for long-term care facilities; assisted living | 12 | | facilities; supportive living facilities; or any other | 13 | | residential program available for the care of persons | 14 | | with dementia; | 15 | | (d) capacity of public safety and law enforcement | 16 | | to respond to persons with Alzheimer's; | 17 | | (e) availability of and amount spent by the State | 18 | | on home and community-based resources for persons with | 19 | | Alzheimer's and related disorders and the availability | 20 | | of State-supported respite care to assist families; | 21 | | (f) inventory of all residential options for | 22 | | individuals with dementia in this State, including, | 23 | | but not limited to, long–term special care units for | 24 | | people with dementia, assisted living units for | 25 | | dementia, and supportive living units for dementia; | 26 | | (g) inventory of geriatric-psychiatric units for |
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| 1 | | persons with behavior disorders associated with | 2 | | Alzheimer's and related disorders; | 3 | | (h) specific efforts of State agencies directed | 4 | | towards persons with Alzheimer's disease and related | 5 | | disorders and the agencies' estimation of resources | 6 | | that will be needed to meet an increased demand; and | 7 | | (i) level of State support of Alzheimer's research | 8 | | through Illinois universities or other institutions | 9 | | and the results of such investments reflected both in | 10 | | research outcomes and subsequent federal investment in | 11 | | research in Illinois. | 12 | | (4) Recommended changes or additions to State | 13 | | policies, including, but not limited to, directions for the | 14 | | provision of clear and coordinated services and supports to | 15 | | persons and families living with Alzheimer's and related | 16 | | disorders and strategies to address any identified gaps in | 17 | | services. Such plan shall indicate any research
programs | 18 | | being conducted and the status, results, costs and funding | 19 | | sources
of such programs. | 20 | | The plan shall also indicate the number of persons
served, | 21 | | the extent of services provided, and the resources required for | 22 | | the
delivery of services through the ADA networks established | 23 | | under this Act.
Such plan shall identify and describe the | 24 | | duties and accomplishments of
each Regional ADA Center, the | 25 | | primary Alzheimer's providers and other various
providers of | 26 | | service within the ADA network of the described service area.
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| 1 | | The Department shall consult with and take into consideration | 2 | | the plans of
local and State comprehensive health planning | 3 | | agencies recognized under the
Comprehensive Health Planning | 4 | | Act , as well as recommendations regarding Alzheimer's disease | 5 | | and related disorders that may be included in the State Health | 6 | | Improvement Plan .
| 7 | | (Source: P.A. 84-378; 84-513.)
| 8 | | (410 ILCS 405/6) (from Ch. 111 1/2, par. 6956)
| 9 | | Sec. 6. ADA Advisory Committee. There is created the | 10 | | Alzheimer's
Disease Advisory Committee consisting of 23 21 | 11 | | voting members appointed by the
Director of the Department, as | 12 | | well as 5 nonvoting members as hereinafter
provided in this | 13 | | Section. The Director or his designee shall serve as one
of the | 14 | | 23 21 voting members and as
the Chairman of the Committee. | 15 | | Those appointed as voting members shall
include persons who are | 16 | | experienced in
research and the delivery of services to | 17 | | individuals with Alzheimer's disease or a related disorder | 18 | | victims and their families.
Such members shall include 3 4 | 19 | | physicians licensed to practice medicine in all of
its | 20 | | branches, one representative of a postsecondary educational | 21 | | institution
which administers or is affiliated with a medical | 22 | | center in the State, one
representative of a licensed hospital, | 23 | | one registered nurse with a specialty in geriatric or dementia | 24 | | care , one
representative of a long term care facility under the | 25 | | Nursing Home Care
Act, one representative of a long term care |
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| 1 | | facility under the Assisted Living and Shared Housing Act, one | 2 | | representative from a supportive living facility specially | 3 | | serving individuals with dementia, one representative of a home | 4 | | care agency serving individuals with dementia, one | 5 | | representative of a hospice with a specialty in palliative care | 6 | | for dementia, one representative of an area
agency on aging as | 7 | | defined by Section 3.07 of the Illinois Act on the
Aging, one | 8 | | representative from a leading advocacy organization serving | 9 | | individuals with Alzheimer's disease, one licensed social | 10 | | worker, one representative of law enforcement, 2 individuals | 11 | | with early-stage Alzheimer's disease, 3 of an organization | 12 | | established
under the Illinois Insurance Code for the purpose | 13 | | of providing health
insurance, 5 family members or | 14 | | representatives of individuals with victims of Alzheimer's
| 15 | | disease and related disorders, and 3 4 members of the general | 16 | | public. Among
the physician appointments shall be persons with | 17 | | specialties in the fields
of neurology, family medicine, | 18 | | psychiatry and pharmacology. Among the
general public members, | 19 | | at least 2 appointments shall include persons 65
years of age | 20 | | or older.
| 21 | | In addition to the 23 21 voting members, the Secretary of | 22 | | Human Services (or
his or her designee) and
one additional | 23 | | representative of the Department of Human Services designated | 24 | | by
the Secretary plus the Directors of the following
State | 25 | | agencies or their designees who are qualified to represent each | 26 | | Department's programs and services for those with Alzheimer's |
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| 1 | | disease or related disorders shall serve as nonvoting members:
| 2 | | Department on Aging, Department
of Healthcare and Family | 3 | | Services, Department of Public Health, Department of Human | 4 | | Services, and Guardianship and Advocacy Commission.
| 5 | | Each voting member appointed by the
Director of Public | 6 | | Health shall serve for a term of 2 years, and until his
| 7 | | successor is appointed and qualified. Members of the Committee | 8 | | shall not
be compensated but shall be reimbursed for expenses | 9 | | actually incurred in
the performance of their duties. No more | 10 | | than 12 11 voting members may be of
the same political party. | 11 | | Vacancies shall be filled in the same manner as
original | 12 | | appointments.
| 13 | | The Committee shall review all State programs and services | 14 | | provided by State agencies that are directed toward persons | 15 | | with Alzheimer's disease and related dementias, and by | 16 | | consensus recommend changes to improve the State's response to | 17 | | this serious health problem. Such recommendations shall be | 18 | | included in the State plan described in this Act. | 19 | | (Source: P.A. 95-331, eff. 8-21-07.)
| 20 | | (410 ILCS 405/7) (from Ch. 111 1/2, par. 6957)
| 21 | | Sec. 7. Regional ADA center funding. Pursuant to
| 22 | | appropriations enacted by the General Assembly, the Department | 23 | | shall
provide funds to hospitals affiliated with each
Regional | 24 | | ADA Center for
necessary research and
for the development and | 25 | | maintenance of services for individuals with victims of |
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| 1 | | Alzheimer's
disease and related disorders and their families. | 2 | | For the fiscal year
beginning July 1, 2003, and each year | 3 | | thereafter, the Department shall effect
payments under this | 4 | | Section to hospitals affiliated with each Regional ADA
Center | 5 | | through the Department of Healthcare and Family Services | 6 | | (formerly
Illinois Department of Public Aid) under the | 7 | | Excellence in Alzheimer's Disease Center Treatment Act. The | 8 | | Department of Healthcare and Family Services shall annually | 9 | | report to the Advisory Committee established under this Act | 10 | | regarding the funding of centers under this Act. The Department | 11 | | shall
include the annual expenditures for this purpose in the | 12 | | plan required by
Section 5 of this Act.
| 13 | | (Source: P.A. 95-331, eff. 8-21-07.)
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