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| Public Act 097-0768
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| HB4548 Enrolled | LRB097 16854 RPM 62037 b |
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AN ACT concerning public health.
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Be it enacted by the People of the State of Illinois,
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represented in the General Assembly:
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Section 5. The Alzheimer's Disease Assistance Act is |
amended by changing Sections 2, 3, 4, 5, 6, and 7 as follows:
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(410 ILCS 405/2) (from Ch. 111 1/2, par. 6952)
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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 |
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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
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implement policies, plans, programs and services to alleviate |
such hardships.
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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 |
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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
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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.
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(Source: P.A. 93-929, eff. 8-12-04.)
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(410 ILCS 405/3) (from Ch. 111 1/2, par. 6953)
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Sec. 3. Definitions. As used in this Act:
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(a) "Alzheimer's disease and related disorders" or |
"Alzheimer's" or "AD" means the most common form of dementia |
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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.
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(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 |
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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
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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.
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(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 |
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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.
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(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.
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(e) "ADA Advisory Committee" or "Advisory Committee" or |
"Committee" means
the Alzheimer's Disease Advisory Committee |
created under Section 6 of this Act.
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(f) "Department" means the Illinois Department of Public |
Health.
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(Source: P.A. 90-404, eff. 8-15-97.)
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(410 ILCS 405/4) (from Ch. 111 1/2, par. 6954)
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Sec. 4.
Development of standards for a service network and
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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 |
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include all of the following:
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(a) A description of the specific populations and |
geographic areas to be
served through ADA networks that may |
be established under this Act.
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(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:
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(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
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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
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support services, staff and equipment as may be |
required;
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(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
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available to provide services under this Act;
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(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;
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(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 |
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those who are affected by Alzheimer's disease and |
related
disorders;
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(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
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(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
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participation in the cost of such programs.
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(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
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Department.
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(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.
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(e) Policies, procedures, standards and criteria, |
including medical and
financial eligibility factors, |
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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
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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.
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(Source: P.A. 90-404, eff. 8-15-97; 91-357, eff. 7-29-99.)
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(410 ILCS 405/5) (from Ch. 111 1/2, par. 6955)
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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 |
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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 |
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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 |
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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. |
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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.
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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.
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(Source: P.A. 84-378; 84-513.)
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(410 ILCS 405/6) (from Ch. 111 1/2, par. 6956)
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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 |
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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
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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 |
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or older.
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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:
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Department on Aging, Department
of Healthcare and Family |
Services, Department of Public Health, Department of Human |
Services, and Guardianship and Advocacy Commission.
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Each voting member appointed by the
Director of Public |
Health shall serve for a term of 2 years, and until his
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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.
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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.)
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(410 ILCS 405/7) (from Ch. 111 1/2, par. 6957)
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Sec. 7. Regional ADA center funding. Pursuant to
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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.
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(Source: P.A. 95-331, eff. 8-21-07.)
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