Public Act 097-0768
 
HB4548 EnrolledLRB097 16854 RPM 62037 b

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