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Full Text of HB4548  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,
3represented in the General Assembly:
4    Section 5. The Alzheimer's Disease Assistance Act is
5amended 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
8dementia is a general term for cognitive decline caused by
9various diseases and conditions that result in damaged brain
10cells or connections between brain cells. Alzheimer's disease
11is the most common type of dementia, caused by physical changes
12in the brain and accounting for 60% to 80% of cases. There are
13many other causes of dementia, known here as related disorders.
14Today Alzheimer's disease affects Alzheimer's disease and
15related disorders are devastating health conditions which
16destroy certain vital cells of the brain and which affect an
17estimated 5,400,000 4,500,000 Americans; . This means that
18approximately 210,000 200,000 Illinois citizens have
19Alzheimer's disease are victims. The General Assembly also
20recognizes that the incidence of Alzheimer's disease is rising
21and expected to reach 240,000 in Illinois by 2025. The General
22Assembly finds that Medicaid costs for individuals with
23Alzheimer's disease are 9 times higher than the costs for a



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1person without Alzheimer's disease in the same age group and
2that 71% of all Illinois nursing home residents have some
3degree of cognitive impairment, with more than half of that
4group having moderate to severe cognitive decline finds that
550% of all nursing home admissions in the State may be
6attributable to the Alzheimer's disease and related disorders
7and that these conditions are the fourth leading cause of death
8among the elderly.
9    The General Assembly also finds that Alzheimer's is not a
10normal part of aging, although the greatest known risk factor
11is increasing age, and the majority of people with Alzheimer's
12are 65 and older. But Alzheimer's is not just a disease of old
13age. Up to 5% of people with the disease have early-onset
14Alzheimer's (also known as younger-onset), which often appears
15when someone is in their forties or fifties. It is the opinion
16of the General Assembly that Alzheimer's disease and related
17disorders cause serious financial, social, and emotional
18hardships on persons with Alzheimer's disease or related
19disorders the victims and their families of such a major
20consequence that it is essential for the State to develop and
21implement policies, plans, programs and services to alleviate
22such hardships.
23    The General Assembly recognizes that there is no known
24cause or cure of Alzheimer's disease at this time, and that it
25can progress over an extended period of time and to such a
26degree that a person with Alzheimer's disease dies from



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1Alzheimer's disease. The General Assembly recognizes that
2Alzheimer's disease is the sixth leading cause of death across
3all ages in the United States and the fifth leading cause of
4death for those aged 65 or older the victim's deteriorated
5condition makes him or her susceptible to other medical
6disorders that generally prove fatal. It is the intent of the
7General Assembly, through implementation of this Act, to
8establish a program for the conduct of research regarding the
9cause, cure and treatment of Alzheimer's disease and related
10disorders; and, through the establishment of Regional
11Alzheimer's Disease Assistance Centers and a comprehensive,
12Statewide system of regional and community-based services, to
13provide for the identification, evaluation, diagnosis,
14referral and treatment of individuals with Alzheimer's disease
15or related disorders. It is also the intent of the General
16Assembly to provide adequate and appropriate State policy and
17regulations to ensure that Illinois persons with Alzheimer's
18disease and related disorders are able to maintain their
19quality of life and their dignity as they progress through the
20course 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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1that causes problems with memory, thinking, and behavior.
2Symptoms usually develop slowly and get worse over time,
3becoming severe enough to interfere with daily tasks. Symptoms
4include a decline in memory and the loss of function in at
5least one other cognitive ability, such as the ability to
6generate coherent speech or understand written or spoken
7language; the ability to recognize or identify objects; the
8ability to execute motor activities; or the ability to think
9abstractly a health condition resulting from significant
10destruction of brain tissue with resultant loss of brain
11function, including, but not limited to, progressive,
12degenerative and dementing illnesses including presenile and
13senile dementias, including Alzheimer's disease and other
14related disorders.
15    (a-5) "Dementia" means cognitive decline, including a loss
16of memory and other mental abilities severe enough to interfere
17with daily life.
18    (a-10) "Related disorders" or "related dementias" means
19any other form of dementia that is not caused by Alzheimer's
21    (a-15) "Dementia-capable State" means that the State of
22Illinois and its long-term care services, community-based
23services, 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
15educational institution having a medical school in affiliation
16with a medical center and having a National Institutes of
17Health and National Institutes on Aging sponsored Alzheimer's
18Disease Core Center. Any Regional ADA Center which was
19designated as having a National Alzheimer's Disease Core Center
20but no longer carries such designation shall continue to serve
21as a Regional ADA Center.
22    (c) "Primary Alzheimer's provider" means a licensed
23hospital, a medical center under the supervision of a physician
24licensed to practice medicine in all of its branches, or a
25medical center that provides medical consultation, evaluation,
26referral and treatment to persons who may be or who have been



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1diagnosed as individuals with victims of Alzheimer's disease or
2related disorders pursuant to policies, standards, criteria
3and procedures adopted under an affiliation agreement with a
4Regional ADA Center under this Act.
5    (d) "Alzheimer's disease assistance network" or "ADA
6network" means the various health, mental health and social
7services agencies that provide referral, treatment and support
8services under standards and plans adopted and implemented in
9conjunction with a Regional ADA Center.
10    (e) "ADA Advisory Committee" or "Advisory Committee" or
11"Committee" means the Alzheimer's Disease Advisory Committee
12created under Section 6 of this Act.
13    (f) "Department" means the Illinois Department of Public
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
18designation of regional centers and primary providers. By
19January 1, 1987, the Department, in consultation with the
20Advisory Committee, shall develop standards for the conduct of
21research and for the identification, evaluation, diagnosis,
22referral and treatment of individuals with victims of
23Alzheimer's disease and related disorders and their families
24through the ADA network of designated regional centers and
25other providers of service under this Act. Such standards shall



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1include 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
143 years thereafter, the Department shall prepare a State
15Alzheimer's Disease Assistance Plan in consultation with the
16Advisory Committee to guide research, diagnosis, referral and
17treatment services within each service area described by the
18Department. To ensure meaningful input by stakeholders into the
19plan, the Department or members of the General Assembly or
20other interested parties may hold public hearings at locations
21throughout the State for input by consumers and providers of
22care. The Department or members of the General Assembly or
23other interested parties may also utilize technological means
24or work with advocacy organizations that have technological
25capability, such as Webcasts or online surveys, to gather



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1feedback on recommendations from persons and families affected
2by Alzheimer's disease and the general public. State agencies
3with programs serving the population impacted by Alzheimer's
4may also present testimony at one of the State hearings to
5specify how they are meeting the needs of people with
6Alzheimer's. Various stakeholders, including related consumer
7organizations or advocacy organizations as well as individuals
8with Alzheimer's disease or a related disorder and caregivers
9of such individuals, may also be invited to provide public
10comment. The results of any public hearings held pursuant to
11this Section shall be presented to the Department in a format
12as determined by the Department to be included in the State
13Alzheimer's Disease Assistance Plan.
14    The plan shall incorporate any testimony that may be
15offered 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,
2the extent of services provided, and the resources required for
3the delivery of services through the ADA networks established
4under this Act. Such plan shall identify and describe the
5duties and accomplishments of each Regional ADA Center, the
6primary Alzheimer's providers and other various providers of
7service within the ADA network of the described service area.
8The Department shall consult with and take into consideration
9the plans of local and State comprehensive health planning
10agencies recognized under the Comprehensive Health Planning
11Act, as well as recommendations regarding Alzheimer's disease
12and related disorders that may be included in the State Health
13Improvement 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
17Alzheimer's Disease Advisory Committee consisting of 23 21
18voting members appointed by the Director of the Department, as
19well as 5 nonvoting members as hereinafter provided in this
20Section. The Director or his designee shall serve as one of the
2123 21 voting members and as the Chairman of the Committee.
22Those appointed as voting members shall include persons who are
23experienced in research and the delivery of services to
24individuals with Alzheimer's disease or a related disorder
25victims and their families. Such members shall include 3 4



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1physicians licensed to practice medicine in all of its
2branches, one representative of a postsecondary educational
3institution which administers or is affiliated with a medical
4center in the State, one representative of a licensed hospital,
5one registered nurse with a specialty in geriatric or dementia
6care, one representative of a long term care facility under the
7Nursing Home Care Act, one representative of a long term care
8facility under the Assisted Living and Shared Housing Act, one
9representative from a supportive living facility specially
10serving individuals with dementia, one representative of a home
11care agency serving individuals with dementia, one
12representative of a hospice with a specialty in palliative care
13for dementia, one representative of an area agency on aging as
14defined by Section 3.07 of the Illinois Act on the Aging, one
15representative from a leading advocacy organization serving
16individuals with Alzheimer's disease, one licensed social
17worker, one representative of law enforcement, 2 individuals
18with early-stage Alzheimer's disease, 3 of an organization
19established under the Illinois Insurance Code for the purpose
20of providing health insurance, 5 family members or
21representatives of individuals with victims of Alzheimer's
22disease and related disorders, and 3 4 members of the general
23public. Among the physician appointments shall be persons with
24specialties in the fields of neurology, family medicine,
25psychiatry and pharmacology. Among the general public members,
26at least 2 appointments shall include persons 65 years of age



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1or older.
2    In addition to the 23 21 voting members, the Secretary of
3Human Services (or his or her designee) and one additional
4representative of the Department of Human Services designated
5by the Secretary plus the Directors of the following State
6agencies or their designees who are qualified to represent each
7Department's programs and services for those with Alzheimer's
8disease or related disorders shall serve as nonvoting members:
9Department on Aging, Department of Healthcare and Family
10Services, Department of Public Health, Department of Human
11Services, and Guardianship and Advocacy Commission.
12    Each voting member appointed by the Director of Public
13Health shall serve for a term of 2 years, and until his
14successor is appointed and qualified. Members of the Committee
15shall not be compensated but shall be reimbursed for expenses
16actually incurred in the performance of their duties. No more
17than 12 11 voting members may be of the same political party.
18Vacancies shall be filled in the same manner as original
20    The Committee shall review all State programs and services
21provided by State agencies that are directed toward persons
22with Alzheimer's disease and related dementias, and by
23consensus recommend changes to improve the State's response to
24this serious health problem. Such recommendations shall be
25included 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
3appropriations enacted by the General Assembly, the Department
4shall provide funds to hospitals affiliated with each Regional
5ADA Center for necessary research and for the development and
6maintenance of services for individuals with victims of
7Alzheimer's disease and related disorders and their families.
8For the fiscal year beginning July 1, 2003, and each year
9thereafter, the Department shall effect payments under this
10Section to hospitals affiliated with each Regional ADA Center
11through the Department of Healthcare and Family Services
12(formerly Illinois Department of Public Aid) under the
13Excellence in Alzheimer's Disease Center Treatment Act. The
14Department of Healthcare and Family Services shall annually
15report to the Advisory Committee established under this Act
16regarding the funding of centers under this Act. The Department
17shall include the annual expenditures for this purpose in the
18plan required by Section 5 of this Act.
19(Source: P.A. 95-331, eff. 8-21-07.)