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

    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,
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 dementia affects Alzheimer's disease and related
15disorders are devastating health conditions which destroy
16certain vital cells of the brain and which affect an estimated
175,400,000 4,500,000 Americans; . This means that approximately
18210,000 200,000 Illinois citizens have Alzheimer's disease are
19victims. The General Assembly also recognizes that the
20incidence of Alzheimer's disease is rising and expected to
21reach 240,000 in Illinois by 2025. The General Assembly finds
22that Medicaid costs for individuals with Alzheimer's disease
23are 9 times higher than the costs for a person without

 

 

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1Alzheimer's disease in the same age group and that 71% of all
2Illinois nursing home residents have some degree of cognitive
3impairment, with more than half of that group having moderate
4to severe cognitive decline finds that 50% of all nursing home
5admissions in the State may be attributable to the Alzheimer's
6disease and related disorders and that these conditions are the
7fourth leading cause of death among the elderly.
8    The General Assembly also finds that Alzheimer's is not a
9normal part of aging, although the greatest known risk factor
10is increasing age, and the majority of people with Alzheimer's
11are 65 and older. But Alzheimer's is not just a disease of old
12age. Up to 5% of people with the disease have early-onset
13Alzheimer's (also known as younger-onset), which often appears
14when someone is in their forties or fifties. It is the opinion
15of the General Assembly that Alzheimer's disease and related
16disorders cause serious financial, social, and emotional
17hardships on persons with Alzheimer's disease or related
18disorders the victims and their families of such a major
19consequence that it is essential for the State to develop and
20implement policies, plans, programs and services to alleviate
21such hardships.
22    The General Assembly recognizes that there is no known
23cause or cure of Alzheimer's disease at this time, and that it
24can progress over an extended period of time and to such a
25degree that a person with Alzheimer's disease dies from
26Alzheimer's disease. The General Assembly recognizes that

 

 

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1Alzheimer's disease is the sixth leading cause of death across
2all ages in the United States and the fifth leading cause of
3death for those aged 65 or older the victim's deteriorated
4condition makes him or her susceptible to other medical
5disorders that generally prove fatal. It is the intent of the
6General Assembly, through implementation of this Act, to
7establish a program for the conduct of research regarding the
8cause, cure and treatment of Alzheimer's disease and related
9disorders; and, through the establishment of Regional
10Alzheimer's Disease Assistance Centers and a comprehensive,
11Statewide system of regional and community-based services, to
12provide for the identification, evaluation, diagnosis,
13referral and treatment of individuals with Alzheimer's disease
14or related disorders. It is also the intent of the General
15Assembly to provide adequate and appropriate State policy and
16regulations to ensure that Illinois persons with Alzheimer's
17disease and related disorders are able to maintain their
18quality of life and their dignity as they progress through the
19course 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
25that causes problems with memory, thinking, and behavior.

 

 

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1Symptoms usually develop slowly and get worse over time,
2becoming severe enough to interfere with daily tasks. Symptoms
3include a decline in memory and the loss of function in at
4least one other cognitive ability, such as the ability to
5generate coherent speech or understand written or spoken
6language; the ability to recognize or identify objects; the
7ability to execute motor activities; or the ability to think
8abstractly a health condition resulting from significant
9destruction of brain tissue with resultant loss of brain
10function, including, but not limited to, progressive,
11degenerative and dementing illnesses including presenile and
12senile dementias, including Alzheimer's disease and other
13related disorders.
14    (a-5) "Dementia" means cognitive decline, including a loss
15of memory and other mental abilities severe enough to interfere
16with daily life.
17    (a-10) "Related disorders" or "related dementias" means
18any other form of dementia that is not caused by Alzheimer's
19disease.
20    (a-15) "Dementia-capable State" means that the State of
21Illinois and its long-term care services, community-based
22services, 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
14educational institution having a medical school in affiliation
15with a medical center and having a National Institutes of
16Health and National Institutes on Aging sponsored Alzheimer's
17Disease Core Center. Any Regional ADA Center which was
18designated as having a National Alzheimer's Disease Core Center
19but no longer carries such designation shall continue to serve
20as a Regional ADA Center.
21    (c) "Primary Alzheimer's provider" means a licensed
22hospital, a medical center under the supervision of a physician
23licensed to practice medicine in all of its branches, or a
24medical center that provides medical consultation, evaluation,
25referral and treatment to persons who may be or who have been
26diagnosed as individuals with victims of Alzheimer's disease or

 

 

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1related disorders pursuant to policies, standards, criteria
2and procedures adopted under an affiliation agreement with a
3Regional ADA Center under this Act.
4    (d) "Alzheimer's disease assistance network" or "ADA
5network" means the various health, mental health and social
6services agencies that provide referral, treatment and support
7services under standards and plans adopted and implemented in
8conjunction with a Regional ADA Center.
9    (e) "ADA Advisory Committee" or "Advisory Committee" or
10"Committee" means the Alzheimer's Disease Advisory Committee
11created under Section 6 of this Act.
12    (f) "Department" means the Illinois Department of Public
13Health.
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
17designation of regional centers and primary providers. By
18January 1, 1987, the Department, in consultation with the
19Advisory Committee, shall develop standards for the conduct of
20research and for the identification, evaluation, diagnosis,
21referral and treatment of individuals with victims of
22Alzheimer's disease and related disorders and their families
23through the ADA network of designated regional centers and
24other providers of service under this Act. Such standards shall
25include 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
133 years thereafter, the Department shall prepare a State
14Alzheimer's Disease Assistance Plan in consultation with the
15Advisory Committee to guide research, diagnosis, referral and
16treatment services within each service area described by the
17Department. To ensure meaningful input by stakeholders into the
18plan, the Department shall hold 2 public hearings at locations
19throughout the State for input by consumers and providers of
20care. The Department shall also utilize technological means or
21work with advocacy organizations that have technological
22capability, such as Webcasts or online surveys, to gather
23feedback on recommendations from persons and families affected
24by Alzheimer's disease and the general public. State agencies
25with programs serving the population impacted by Alzheimer's

 

 

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1shall also present testimony at one of the State hearings to
2specify how they are meeting the needs of people with
3Alzheimer's. Various stakeholders, including related consumer
4organizations or advocacy organizations as well as individuals
5with Alzheimer's disease or a related disorder and caregivers
6of such individuals, shall also be invited to provide public
7comment.
8    The plan is directed to assess the current and future
9impact of Alzheimer's disease on Illinois residents; to examine
10the existing industries, services, and resources addressing
11the needs of persons with Alzheimer's, their families, and
12caregivers; and to develop a strategy to mobilize a State
13response to this public health crisis. The plan shall include
14an examination of the following in its assessment and
15recommendations:
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,
21the extent of services provided, and the resources required for
22the delivery of services through the ADA networks established
23under this Act. Such plan shall identify and describe the
24duties and accomplishments of each Regional ADA Center, the
25primary Alzheimer's providers and other various providers of
26service within the ADA network of the described service area.

 

 

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1The Department shall consult with and take into consideration
2the plans of local and State comprehensive health planning
3agencies recognized under the Comprehensive Health Planning
4Act, as well as recommendations regarding Alzheimer's disease
5and related disorders that may be included in the State Health
6Improvement 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
10Alzheimer's Disease Advisory Committee consisting of 23 21
11voting members appointed by the Director of the Department, as
12well as 5 nonvoting members as hereinafter provided in this
13Section. The Director or his designee shall serve as one of the
1423 21 voting members and as the Chairman of the Committee.
15Those appointed as voting members shall include persons who are
16experienced in research and the delivery of services to
17individuals with Alzheimer's disease or a related disorder
18victims and their families. Such members shall include 3 4
19physicians licensed to practice medicine in all of its
20branches, one representative of a postsecondary educational
21institution which administers or is affiliated with a medical
22center in the State, one representative of a licensed hospital,
23one registered nurse with a specialty in geriatric or dementia
24care, one representative of a long term care facility under the
25Nursing Home Care Act, one representative of a long term care

 

 

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1facility under the Assisted Living and Shared Housing Act, one
2representative from a supportive living facility specially
3serving individuals with dementia, one representative of a home
4care agency serving individuals with dementia, one
5representative of a hospice with a specialty in palliative care
6for dementia, one representative of an area agency on aging as
7defined by Section 3.07 of the Illinois Act on the Aging, one
8representative from a leading advocacy organization serving
9individuals with Alzheimer's disease, one licensed social
10worker, one representative of law enforcement, 2 individuals
11with early-stage Alzheimer's disease, 3 of an organization
12established under the Illinois Insurance Code for the purpose
13of providing health insurance, 5 family members or
14representatives of individuals with victims of Alzheimer's
15disease and related disorders, and 3 4 members of the general
16public. Among the physician appointments shall be persons with
17specialties in the fields of neurology, family medicine,
18psychiatry and pharmacology. Among the general public members,
19at least 2 appointments shall include persons 65 years of age
20or older.
21    In addition to the 23 21 voting members, the Secretary of
22Human Services (or his or her designee) and one additional
23representative of the Department of Human Services designated
24by the Secretary plus the Directors of the following State
25agencies or their designees who are qualified to represent each
26Department's programs and services for those with Alzheimer's

 

 

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1disease or related disorders shall serve as nonvoting members:
2Department on Aging, Department of Healthcare and Family
3Services, Department of Public Health, Department of Human
4Services, and Guardianship and Advocacy Commission.
5    Each voting member appointed by the Director of Public
6Health shall serve for a term of 2 years, and until his
7successor is appointed and qualified. Members of the Committee
8shall not be compensated but shall be reimbursed for expenses
9actually incurred in the performance of their duties. No more
10than 12 11 voting members may be of the same political party.
11Vacancies shall be filled in the same manner as original
12appointments.
13    The Committee shall review all State programs and services
14provided by State agencies that are directed toward persons
15with Alzheimer's disease and related dementias, and by
16consensus recommend changes to improve the State's response to
17this serious health problem. Such recommendations shall be
18included 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
22appropriations enacted by the General Assembly, the Department
23shall provide funds to hospitals affiliated with each Regional
24ADA Center for necessary research and for the development and
25maintenance of services for individuals with victims of

 

 

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1Alzheimer's disease and related disorders and their families.
2For the fiscal year beginning July 1, 2003, and each year
3thereafter, the Department shall effect payments under this
4Section to hospitals affiliated with each Regional ADA Center
5through the Department of Healthcare and Family Services
6(formerly Illinois Department of Public Aid) under the
7Excellence in Alzheimer's Disease Center Treatment Act. The
8Department of Healthcare and Family Services shall annually
9report to the Advisory Committee established under this Act
10regarding the funding of centers under this Act. The Department
11shall include the annual expenditures for this purpose in the
12plan required by Section 5 of this Act.
13(Source: P.A. 95-331, eff. 8-21-07.)