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.)