PRIOR PRINTER'S NO. 1015 PRINTER'S NO. 1676
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE BILL
No. 840
Session of
2023
INTRODUCED BY BROWN, ARGALL, HAYWOOD, LANGERHOLC, COMITTA,
SCHWANK, COSTA, CAPPELLETTI, FLYNN, CULVER, BREWSTER, MILLER,
MUTH, L. WILLIAMS, PENNYCUICK, COLLETT, FARRY, TARTAGLIONE,
BAKER AND SANTARSIERO, JULY 11, 2023
SENATOR JUDY WARD, AGING AND YOUTH, AS AMENDED, JUNE 4, 2024
AN ACT
1 Establishing the Alzheimer's Disease and Related Disorders <--
2 Division, the Alzheimer's Disease and Related Disorders
3 Advisory Committee and the Alzheimer's Disease and Related
4 Disorders State Plan; and making an appropriation.
5 ESTABLISHING THE ALZHEIMER'S, DEMENTIA AND RELATED DISORDERS <--
6 OFFICE AND THE ALZHEIMER'S, DEMENTIA AND RELATED DISORDERS
7 ADVISORY COMMITTEE.
8 The General Assembly of the Commonwealth of Pennsylvania
9 hereby enacts as follows:
10 Section 1. Short title.
11 This act shall be known and may be cited as the Alzheimer's
12 Disease, DEMENTIA and Related Disorders Public Health <--
13 Infrastructure Act.
14 Section 2. Definitions.
15 The following words and phrases when used in this act shall
16 have the meanings given to them in this section unless the
17 context clearly indicates otherwise:
18 "Advisory committee." The Alzheimer's Disease, DEMENTIA and <--
19 Related Disorders Advisory Committee established under section
 1 4.
2 "Alzheimer's disease, DEMENTIA and related disorders." An <--
3 irreversible and progressive neurological disorder diagnosed by
4 a physician that has all of the following characteristics:
5 (1) The disorder causes cognitive decline and memory
6 impairment, behavioral and psychiatric problems and loss of
7 the ability to care for oneself.
8 (2) The disorder is severe enough to interfere with work
9 or social activities and requires continuous care or
10 supervision.
11 "Annual survey." The Centers for Disease Control and <--
12 Prevention Behavioral Risk Factor Surveillance System annual
13 survey.
14 "Department." The Department of Health AGING of the <--
15 Commonwealth.
16 "Director." An individual appointed by the secretary to
17 oversee operations and responsibilities of the division OFFICE. <--
18 "Division." The Alzheimer's Disease and Related Disorders <--
19 Division established under section 3.
20 "OFFICE." THE ALZHEIMER'S, DEMENTIA AND RELATED DISORDERS <--
21 OFFICE ESTABLISHED UNDER SECTION 3.
22 "Secretary." The Secretary of Health AGING of the <--
23 Commonwealth.
24 "State Plan." The PENNSYLVANIA STATE PLAN FOR Alzheimer's <--
25 Disease, DEMENTIA and Related Disorders State Plan established <--
26 under section 5 PURSUANT TO EXECUTIVE ORDER 2013-01 OR A <--
27 SUCCESSOR STATE PLAN ESTABLISHED PURSUANT TO A DEPARTMENTAL
28 POLICY OR REGULATION.
29 Section 3. Alzheimer's Disease, DEMENTIA and Related Disorders <--
30 Division OFFICE. <--
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 1 (a) Establishment.--The Alzheimer's Disease, DEMENTIA and <--
2 Related Disorders Division OFFICE is established within the <--
3 department.
4 (b) Director.--The position of director is established as a
5 full-time position to oversee operations of the division. The <--
6 director shall be responsible for the following: OFFICE. <--
7 (C) DUTIES.--THE OFFICE SHALL HAVE THE FOLLOWING POWERS AND
8 RESPONSIBILITIES:
9 (1) Oversight of activities associated with and relevant
10 to the successful implementation of the State Plan.
11 (2) Providing strategic direction and support to the
12 advisory committee, such as leading the required updates to
13 the State Plan.
14 (3) Establishing and maintaining relationships with
15 other State COMMONWEALTH agencies and organizations within <--
16 this Commonwealth to foster public-private collaboration in
17 order to meet the needs of the affected population and
18 prevent duplication of services.
19 (4) Evaluating existing Alzheimer's and dementia, <--
20 DEMENTIA AND RELATED DISORDERS programs and services.
21 (5) Identifying service gaps within the Commonwealth.
22 (6) Increasing awareness of and facilitating access to
23 quality, coordinated care for individuals with dementia <--
24 ALZHEIMER'S, DEMENTIA AND RELATED DISORDERS. <--
25 (7) Utilizing dementia-related ALZHEIMER'S, DEMENTIA AND <--
26 RELATED DISORDERS data to coordinate AND COLLABORATE with the <--
27 department OTHER COMMONWEALTH AGENCIES to improve public <--
28 health outcomes.
29 (8) Identifying and managing grants to assist in the <--
30 funding of the division, State Plan implementation and other
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 1 programs and services to assist this Commonwealth in becoming
2 dementia-capable.
3 (9) With the advice and consent of the advisory
4 committee, compiling and submitting to the members under
5 section 4(b)(5), an annual report outlining key division
6 deliverables, such as population data and statistics updates,
7 funding through grant applications and State Plan
8 implementation status.
9 (8) NO LESS THAN EVERY FIVE YEARS, AND IN CONSULTATION <--
10 WITH THE ADVISORY COMMITTEE, CONDUCT A REVIEW OF THE EXISTING
11 STATE PLAN TO EVALUATE CHANGES IN TRENDS, SCIENTIFIC AND
12 RESEARCH ADVANCEMENTS, GAPS IN SERVICES AND OTHER EMERGING
13 ISSUES IMPACTING THIS POPULATION AND TO DETERMINE IF
14 AMENDMENTS ARE NECESSARY.
15 (9) IN CONSULTATION WITH THE ADVISORY COMMITTEE, APPROVE
16 AND IMPLEMENT AMENDMENTS TO THE STATE PLAN.
17 (10) IDENTIFYING AND MANAGING GRANTS TO ASSIST IN THE
18 FUNDING OF THE OFFICE, STATE PLAN IMPLEMENTATION AND OTHER
19 PROGRAMS AND SERVICES TO ASSIST THIS COMMONWEALTH IN BECOMING
20 DEMENTIA-CAPABLE.
21 (11) IN CONSULTATION WITH THE ADVISORY COMMITTEE,
22 COMPILE AN ANNUAL REPORT, WHICH SHALL BE MADE AVAILABLE ON
23 THE DEPARTMENT'S PUBLICLY ACCESSIBLE INTERNET WEBSITE,
24 OUTLINING KEY OFFICE DELIVERABLES, SUCH AS POPULATION DATA
25 AND STATISTICS UPDATES, FUNDING THROUGH GRANT APPLICATIONS
26 AND STATE PLAN IMPLEMENTATION STATUS.
27 Section 4. Alzheimer's Disease, DEMENTIA and Related Disorders <--
28 Advisory Committee.
29 (a) Establishment.--The Alzheimer's Disease, DEMENTIA and <--
30 Related Disorders Advisory Committee is established in the
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 1 department.
2 (b) Membership.--The advisory committee shall consist of the
3 following members:
4 (1) The secretary. <--
5 (2) The Secretary of Aging.
6 (3) The Secretary of Human Services.
7 (4) The Secretary of Labor and Industry.
8 (5) The chair and minority chair of the Aging and Youth
9 Committee of the Senate, the chair and minority chair of the
10 Aging and Older Adult Services Committee of the House of
11 Representatives, the chair and minority chair of the Health
12 and Human Services Committee of the Senate and the chair and
13 minority chair of the Health Committee of the House of
14 Representatives.
15 (6) An individual living with Alzheimer's disease and an
16 individual living with another type of dementia.
17 (7) An unpaid caregiver of an individual with
18 Alzheimer's disease or a related disorder.
19 (8) An individual representing a Statewide association
20 dedicated to Alzheimer's care, support and research.
21 (9) A physician who has experience diagnosing and
22 treating Alzheimer's disease and related disorders.
23 (10) An individual representing the Pennsylvania Society
24 for Post-Acute and Long-Term Care Medicine.
25 (11) A psychologist who specializes in dementia care.
26 (12) An individual representing hospitals and health
27 systems.
28 (13) An individual representing community health
29 centers.
30 (14) An individual who conducts research regarding
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 1 Alzheimer's disease and related disorders.
2 (15) An individual representing Pennsylvania's Medicaid
3 Managed Care Organizations.
4 (16) An individual specializing in population health
5 management.
6 (17) Two individuals representing community-based
7 organizations that have demonstrated experience and expertise
8 in addressing the employment, training or education needs of
9 the health care and direct care workforce providing
10 professional care for individuals living with dementia.
11 (18) An individual from a nongovernmental Statewide
12 organization that advocates for seniors.
13 (19) Five individuals representing the long-term care
14 continuum, including one representative from each of the
15 following:
16 (i) Nonprofit skilled nursing facilities.
17 (ii) For-profit skilled nursing facilities.
18 (iii) Assisted living residences or personal care
19 homes.
20 (iv) Home care organizations or hospices.
21 (v) Older adult daily living centers.
22 (20) A representative of the local area agencies on
23 aging.
24 (21) A representative from the Pennsylvania Long-Term
25 Care Ombudsman Program.
26 (1) THE SECRETARY OR A DESIGNEE. <--
27 (2) THE SECRETARY OF HEALTH OR A DESIGNEE.
28 (3) THE SECRETARY OF HUMAN SERVICES OR A DESIGNEE.
29 (4) THE SECRETARY OF LABOR AND INDUSTRY OR A DESIGNEE.
30 (5) THE CHAIR AND MINORITY CHAIR OF THE AGING AND YOUTH
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 1 COMMITTEE OF THE SENATE OR DESIGNEES AND THE CHAIR AND
2 MINORITY CHAIR OF THE AGING AND OLDER ADULT SERVICES
3 COMMITTEE OF THE HOUSE OF REPRESENTATIVES OR DESIGNEES.
4 (6) A MEMBER FROM THE PENNSYLVANIA COUNCIL ON AGING.
5 (7) BUREAU DIRECTOR REPRESENTING THE PHARMACEUTICAL
6 ASSISTANCE CONTRACT FOR THE ELDERLY PROGRAM.
7 (8) AN INDIVIDUAL LIVING WITH ALZHEIMER'S, DEMENTIA OR A
8 RELATED DISORDER OR A DESIGNEE.
9 (9) A FAMILY MEMBER OF OR A CAREGIVER FOR A PERSON
10 LIVING WITH ALZHEIMER'S, DEMENTIA OR A RELATED DISORDER.
11 (10) AN ATTORNEY WITH AT LEAST FIVE YEARS' EXPERIENCE IN
12 PROVIDING LEGAL REPRESENTATION TO OLDER ADULTS WITH COGNITIVE
13 DISEASES AND RELATED DISORDERS.
14 (11) THREE INDIVIDUALS FROM NON-GOVERNMENTAL STATEWIDE
15 ORGANIZATIONS THAT ADVOCATE FOR OLDER ADULTS.
16 (12) A PHYSICIAN WITH AT LEAST FIVE YEARS' EXPERIENCE IN
17 DIAGNOSING AND TREATING ALZHEIMER'S, DEMENTIA AND RELATED
18 DISORDERS.
19 (13) TWO INDIVIDUALS WHO CONDUCT RESEARCH REGARDING
20 ALZHEIMER'S, DEMENTIA AND RELATED DISORDERS.
21 (14) AN INDIVIDUAL REPRESENTING THE LOCAL AREA AGENCIES
22 ON AGING.
23 (15) AN INDIVIDUAL REPRESENTING THE COMMONWEALTH'S
24 HOSPITALS AND HEALTH SYSTEMS.
25 (16) AN INDIVIDUAL REPRESENTING THE FACILITIES IN THE
26 COMMONWEALTH THAT PROVIDE LONG-TERM CARE TO INDIVIDUALS.
27 (17) AN INDIVIDUAL REPRESENTING THE COMMONWEALTH'S
28 COMMUNITY HEALTH CENTERS IN RURAL AND URBAN COMMUNITIES.
29 (18) AN INDIVIDUAL REPRESENTING OLDER ADULT DAY LIVING
30 CENTERS.
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 1 (19) AN INDIVIDUAL REPRESENTING THE LIFE PROVIDERS.
2 (20) AN INDIVIDUAL REPRESENTING A FEDERALLY QUALIFIED
3 HEALTH CENTER.
4 (21) AN INDIVIDUAL REPRESENTING THE PENNSYLVANIA SOCIETY
5 FOR POST-ACUTE AND LONG-TERM CARE MEDICINE.
6 (22) AN INDIVIDUAL REPRESENTING A STATEWIDE ASSOCIATION
7 DEDICATED TO ALZHEIMER'S CARE, SUPPORT AND RESEARCH.
8 (c) Appointments.--Except for members under subsection (b) <--
9 (5) (B)(1), (2), (3), (4) AND (5), members of the advisory <--
10 committee shall be appointed by the Governor to four-year
11 staggered terms. The MEMBERS OF THE GOVERNOR'S CABINET AND <--
12 sitting members of the Senate and the House of Representatives
13 shall be appointed to a term corresponding to their THE MEMBER'S <--
14 term of office.
15 (d) Chair.--The Governor shall appoint a chair from among <--
16 the members of the advisory committee to serve a term of four
17 years.
18 (e) Powers and duties.--The advisory committee shall meet on
19 a quarterly basis at minimum and shall have the following powers
20 and duties:
21 (1) To assess the current and future impact of
22 Alzheimer's disease and related disorders on residents of
23 this Commonwealth.
24 (2) To examine the existing industries, services and
25 resources addressing the needs of persons with Alzheimer's
26 disease and related disorders, their families and caregivers.
27 (3) To develop strategies to mobilize a Statewide
28 response to the public health crisis created by Alzheimer's
29 disease and related disorders.
30 (4) To develop the State Plan and advise the department
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 1 on necessary updates and implementation of the State Plan.
2 Section 5. Alzheimer's Disease and Related Disorders State
3 Plan.
4 (a) Establishment.--The advisory committee shall develop a
5 State Plan that outlines a strategy to mobilize the
6 Commonwealth's response to Alzheimer's disease and related
7 disorders and make policy recommendations to make this
8 Commonwealth a more dementia-capable State. In developing the
9 State Plan, the advisory committee shall examine the following:
10 (1) Trends in the Commonwealth's Alzheimer's disease and
11 related disorders populations and service needs, such as:
12 (i) The Commonwealth's role in providing or
13 facilitating long-term care, family caregiver support and
14 assistance to individuals with early-stage or early-onset
15 Alzheimer's disease and related disorders.
16 (ii) The Commonwealth's policies regarding
17 individuals with Alzheimer's disease and related
18 disorders.
19 (iii) The fiscal impact of Alzheimer's disease and
20 related disorders on publicly funded health care
21 programs.
22 (iv) The establishment of a surveillance system to
23 better determine the number of individuals diagnosed with
24 Alzheimer's disease and related disorders and to monitor
25 changes to the number of individuals diagnosed with
26 Alzheimer's disease and related disorders.
27 (2) Existing resources, services and capacity relating
28 to the diagnosis and care of individuals living with
29 Alzheimer's disease and related disorders, such as:
30 (i) Type, cost and availability of Alzheimer's
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 1 disease and related disorders care services.
2 (ii) The availability of health care workers who can
3 serve individuals with dementia, such as neurologists,
4 geriatricians and direct care workers.
5 (iii) Dementia-specific training requirements for
6 public and private employees who interact with
7 individuals living with Alzheimer's and related
8 disorders, such as long-term care workers, case managers,
9 adult protective services, law enforcement and first
10 responders.
11 (iv) Home-based and community-based services, such
12 as respite care for individuals diagnosed with
13 Alzheimer's disease and other disorders and their
14 families.
15 (v) Quality care measures for home-based and
16 community-based services and residential care facilities.
17 (vi) State-supported Alzheimer's and related
18 disorders research conducted at universities located in
19 this Commonwealth.
20 (3) Policies and strategies that address:
21 (i) Increasing public awareness of Alzheimer's
22 disease and related disorders.
23 (ii) Educating health care providers to increase
24 early detection and diagnosis of Alzheimer's disease and
25 related disorders.
26 (iii) Improving the health care received by
27 individuals diagnosed with Alzheimer's disease and
28 related disorders.
29 (iv) Evaluating the capacity of the health care
30 system in meeting the growing number a