(410 ILCS 405/1) (from Ch. 111 1/2, par. 6951)
Sec. 1. Short Title. This Act shall be known and may be cited as the Alzheimer's Disease Assistance Act.
(Source: P.A. 84-378; 84-513.)
(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 an estimated 5,400,000 Americans; approximately 210,000 Illinois citizens have Alzheimer's disease. 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.
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 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. 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.
(Source: P.A. 97-768, eff. 1-1-13.)
(410 ILCS 405/3) (from Ch. 111 1/2, par. 6953)
Sec. 3. Definitions. As used in this Act:
(a) "Alzheimer's disease" 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-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:
(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 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. 97-768, eff. 1-1-13.)
(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 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:
(Source: P.A. 97-768, eff. 1-1-13.)
(410 ILCS 405/5) (from Ch. 111 1/2, par. 6955)
Sec. 5. State ADA Plan. By January 1, 2014, 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:
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. 97-768, eff. 1-1-13.)
(410 ILCS 405/6) (from Ch. 111 1/2, par. 6956)
Sec. 6. Alzheimer's Disease Advisory Committee.
(a) There is created the Alzheimer's Disease Advisory Committee consisting of 17 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 17 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 and their families. Such members shall include:
(b) In addition to the 17 voting members, 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. 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. 101-588, eff. 1-1-20.)
(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 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). 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. 100-621, eff. 7-20-18.)
(410 ILCS 405/8)
Sec. 8. Alzheimer's Disease Research, Care, and Support Fund; support. The Department, in coordination with the members of the Alzheimer's Disease Advisory Committee, shall make reasonable efforts to promote the Alzheimer's Disease Research, Care, and Support Fund during relevant times, including, but not limited to, periods of time when tax returns are typically received. Ways to promote the Fund include, but are not limited to, issuing press releases and posting on social media.
(Source: P.A. 101-588, eff. 1-1-20.)