A04709
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE BILL
No.
840
Session of
2023
INTRODUCED BY BROWN, ARGALL, HAYWOOD, LANGERHOLC, COMITTA,
SCHWANK, COSTA, CAPPELLETTI, FLYNN, CULVER AND BREWSTER,
JULY 11, 2023
REFERRED TO AGING AND YOUTH, JULY 11, 2023
AN ACT
Establishing the Alzheimer's Disease and Related Disorders
Division, the Alzheimer's Disease and Related Disorders
Advisory Committee and the Alzheimer's Disease and Related
Disorders State Plan; and making an appropriation.
Establishing the Alzheimer's, Dementia and Related Disorders
Office and the Alzheimer's, Dementia and Related Disorders
Advisory Committee.
The General Assembly of the Commonwealth of Pennsylvania
hereby enacts as follows:
Section 1. Short title.
This act shall be known and may be cited as the Alzheimer's
Disease, Dementia and Related Disorders Public Health
Infrastructure Act.
Section 2. Definitions.
The following words and phrases when used in this act shall
have the meanings given to them in this section unless the
context clearly indicates otherwise:
"Advisory committee." The Alzheimer's Disease, Dementia and
Related Disorders Advisory Committee established under section
4.
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"Alzheimer's disease, Dementia and related disorders." An
irreversible and progressive neurological disorder diagnosed by
a physician that has all of the following characteristics:
(1) The disorder causes cognitive decline and memory
impairment, behavioral and psychiatric problems and loss of
the ability to care for oneself.
(2) The disorder is severe enough to interfere with work
or social activities and requires continuous care or
supervision.
"Annual survey." The Centers for Disease Control and
Prevention Behavioral Risk Factor Surveillance System annual
survey.
"Department." The Department of Health Aging of the
Commonwealth.
"Director." An individual appointed by the secretary to
oversee operations and responsibilities of the division office.
"Division." The Alzheimer's Disease and Related Disorders
Division established under section 3.
"Office." The Alzheimer's, Dementia and Related Disorders
Office established under section 3.
"Secretary." The Secretary of Health Aging of the
Commonwealth.
"State Plan." The Pennsylvania State Plan for Alzheimer's
Disease, Dementia and Related Disorders State Plan established
under section 5 pursuant to Executive Order 2013-01 or a
successor State Plan established pursuant to a departmental
policy or regulation.
Section 3. Alzheimer's Disease, Dementia and Related Disorders
Division Office.
(a) Establishment.--The Alzheimer's Disease, Dementia and
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Related Disorders Division Office is established within the
department.
(b) Director.--The position of director is established as a
full-time position to oversee operations of the division. The
director shall be responsible for the following: office.
(c) Duties.--The office shall have the following powers and
responsibilities:
(1) Oversight of activities associated with and relevant
to the successful implementation of the State Plan.
(2) Providing strategic direction and support to the
advisory committee, such as leading the required updates to
the State Plan.
(3) Establishing and maintaining relationships with
other State Commonwealth agencies and organizations within
this Commonwealth to foster public-private collaboration in
order to meet the needs of the affected population and
prevent duplication of services.
(4) Evaluating existing Alzheimer's and dementia,
Dementia and related disorders programs and services.
(5) Identifying service gaps within the Commonwealth.
(6) Increasing awareness of and facilitating access to
quality, coordinated care for individuals with dementia
Alzheimer's, Dementia and related disorders.
(7) Utilizing dementia-related Alzheimer's, Dementia and
related disorders data to coordinate and collaborate with the
department other Commonwealth agencies to improve public
health outcomes.
(8) Identifying and managing grants to assist in the
funding of the division, State Plan implementation and other
programs and services to assist this Commonwealth in becoming
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dementia-capable.
(9) With the advice and consent of the advisory
committee, compiling and submitting to the members under
section 4(b)(5), an annual report outlining key division
deliverables, such as population data and statistics updates,
funding through grant applications and State Plan
implementation status.
(8) No less than every five years, and in consultation
with the advisory committee, conduct a review of the existing
State Plan to evaluate changes in trends, scientific and
research advancements, gaps in services and other emerging
issues impacting this population and to determine if
amendments are necessary.
(9) In consultation with the advisory committee, approve
and implement amendments to the State Plan.
(10) Identifying and managing grants to assist in the
funding of the office, State Plan implementation and other
programs and services to assist this Commonwealth in becoming
Dementia-capable.
(11) In consultation with the advisory committee,
compile an annual report, which shall be made available on
the department's publicly accessible Internet website,
outlining key office deliverables, such as population data
and statistics updates, funding through grant applications
and State Plan implementation status.
Section 4. Alzheimer's Disease, Dementia and Related Disorders
Advisory Committee.
(a) Establishment.--The Alzheimer's Disease, Dementia and
Related Disorders Advisory Committee is established in the
department.
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(b) Membership.--The advisory committee shall consist of the
following members:
(1) The secretary.
(2) The Secretary of Aging.
(3) The Secretary of Human Services.
(4) The Secretary of Labor and Industry.
(5) The chair and minority chair of the Aging and Youth
Committee of the Senate, the chair and minority chair of the
Aging and Older Adult Services Committee of the House of
Representatives, the chair and minority chair of the Health
and Human Services Committee of the Senate and the chair and
minority chair of the Health Committee of the House of
Representatives.
(6) An individual living with Alzheimer's disease and an
individual living with another type of dementia.
(7) An unpaid caregiver of an individual with
Alzheimer's disease or a related disorder.
(8) An individual representing a Statewide association
dedicated to Alzheimer's care, support and research.
(9) A physician who has experience diagnosing and
treating Alzheimer's disease and related disorders.
(10) An individual representing the Pennsylvania Society
for Post-Acute and Long-Term Care Medicine.
(11) A psychologist who specializes in dementia care.
(12) An individual representing hospitals and health
systems.
(13) An individual representing community health
centers.
(14) An individual who conducts research regarding
Alzheimer's disease and related disorders.
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(15) An individual representing Pennsylvania's Medicaid
Managed Care Organizations.
(16) An individual specializing in population health
management.
(17) Two individuals representing community-based
organizations that have demonstrated experience and expertise
in addressing the employment, training or education needs of
the health care and direct care workforce providing
professional care for individuals living with dementia.
(18) An individual from a nongovernmental Statewide
organization that advocates for seniors.
(19) Five individuals representing the long-term care
continuum, including one representative from each of the
following:
(i) Nonprofit skilled nursing facilities.
(ii) For-profit skilled nursing facilities.
(iii) Assisted living residences or personal care
homes.
(iv) Home care organizations or hospices.
(v) Older adult daily living centers.
(20) A representative of the local area agencies on
aging.
(21) A representative from the Pennsylvania Long-Term
Care Ombudsman Program.
(1) The secretary or a designee.
(2) The Secretary of Health or a designee.
(3) The Secretary of Human Services or a designee.
(4) The Secretary of Labor and Industry or a designee.
(5) The chair and minority chair of the Aging and Youth
Committee of the Senate or designees and the chair and
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minority chair of the Aging and Older Adult Services
Committee of the House of Representatives or designees.
(6) A member from the Pennsylvania Council on Aging.
(7) Bureau Director representing the Pharmaceutical
Assistance Contract for the Elderly program.
(8) An individual living with Alzheimer's, Dementia or a
related disorder or a designee.
(9) A family member of or a caregiver for a person
living with Alzheimer's, Dementia or a related disorder.
(10) An attorney with at least five years' experience in
providing legal representation to older adults with cognitive
diseases and related disorders.
(11) Three individuals from non-governmental Statewide
organizations that advocate for older adults.
(12) A physician with at least five years' experience in
diagnosing and treating Alzheimer's, Dementia and related
disorders.
(13) Two individuals who conduct research regarding
Alzheimer's, Dementia and related disorders.
(14) An individual representing the local area agencies
on aging.
(15) An individual representing the Commonwealth's
hospitals and health systems.
(16) An individual representing the facilities in the
Commonwealth that provide long-term care to individuals.
(17) An individual representing the Commonwealth's
community health centers in rural and urban communities.
(18) An individual representing older adult day living
centers.
(19) An individual representing the life providers.
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(20) An individual representing a federally qualified
health center.
(21) An individual representing the Pennsylvania Society
for Post-Acute and Long-Term Care Medicine.
(22) An individual representing a Statewide association
dedicated to Alzheimer's care, support and research.
(c) Appointments.--Except for members under subsection (b)
(5) (b)(1), (2), (3), (4) and (5), members of the advisory
committee shall be appointed by the Governor to four-year
staggered terms. The members of the Governor's Cabinet and
sitting members of the Senate and the House of Representatives
shall be appointed to a term corresponding to their the member's
term of office.
(d) Chair.--The Governor shall appoint a chair from among
the members of the advisory committee to serve a term of four
years.
(e) Powers and duties.--The advisory committee shall meet on
a quarterly basis at minimum and shall have the following powers
and duties:
(1) To assess the current and future impact of
Alzheimer's disease and related disorders on residents of
this Commonwealth.
(2) To examine the existing industries, services and
resources addressing the needs of persons with Alzheimer's
disease and related disorders, their families and caregivers.
(3) To develop strategies to mobilize a Statewide
response to the public health crisis created by Alzheimer's
disease and related disorders.
(4) To develop the State Plan and advise the department
on necessary updates and implementation of the State Plan.
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Section 5. Alzheimer's Disease and Related Disorders State
Plan.
(a) Establishment.--The advisory committee shall develop a
State Plan that outlines a strategy to mobilize the
Commonwealth's response to Alzheimer's disease and related
disorders and make policy recommendations to make this
Commonwealth a more dementia-capable State. In developing the
State Plan, the advisory committee shall examine the following:
(1) Trends in the Commonwealth's Alzheimer's disease and
related disorders populations and service needs, such as:
(i) The Commonwealth's role in providing or
facilitating long-term care, family caregiver support and
assistance to individuals with early-stage or early-onset
Alzheimer's disease and related disorders.
(ii) The Commonwealth's policies regarding
individuals with Alzheimer's disease and related
disorders.
(iii) The fiscal impact of Alzheimer's disease and
related disorders on publicly funded health care
programs.
(iv) The establishment of a surveillance system to
better determine the number of individuals diagnosed with
Alzheimer's disease and related disorders and to monitor
changes to the number of individuals diagnosed with
Alzheimer's disease and related disorders.
(2) Existing resources, services and capacity relating
to the diagnosis and care of individuals living with
Alzheimer's disease and related disorders, such as:
(i) Type, cost and availability of Alzheimer's
disease and related disorders care services.
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(ii) The availability of health care workers who can
serve individuals with dementia, such as neurologists,
geriatricians and direct care workers.
(iii) Dementia-specific training requirements for
public and private employees who interact with
individuals living with Alzheimer's and related
disorders, such as long-term care workers, case managers,
adult protective services, law enforcement and first
responders.
(iv) Home-based and community-based services, such
as respite care for individuals diagnosed with
Alzheimer's disease and other disorders and their
families.
(v) Quality care measures for home-based and
community-based services and residential care facilities.
(vi) State-supported Alzheimer's and related
disorders research conducted at universities located in
this Commonwealth.
(3) Policies and strategies that address:
(i) Increasing public awareness of Alzheimer's
disease and related disorders.
(ii) Educating health care providers to increase
early detection and diagnosis of Alzheimer's disease and
related disorders.
(iii) Improving the health care received by
individuals diagnosed with Alzheimer's disease and
related disorders.
(iv) Evaluating the capacity of the health care
system in meeting the growing number and needs of
individuals with Alzheimer's disease and related
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disorders.
(v) Increasing the number of health care
professionals available to treat the growing member of
individuals with Alzheimer's disease and related
disorders.
(vi) Improving services provided in the home and
community to delay and decrease the need for
institutionalized care for individuals with Alzheimer's
disease and related disorders.
(vii) Improving long-term care, such as assisted
living, for individuals with Alzheimer's disease and
related disorders.
(viii) Assisting unpaid Alzheimer's disease and
related disorders caregivers.
(ix) Increasing and improving research on
Alzheimer's disease and related disorders.
(x) Promoting activities to maintain and improve
brain health.
(xi) Improving the collection of data and
information related to Alzheimer's disease and related
disorders and their public health burdens.
(xii) Improving public safety for and addressing the
safety-related needs of individuals with Alzheimer's
disease and related disorders.
(xiii) Addressing legal protections for and legal
issues faced by individuals with Alzheimer's disease and
related disorders.
(xiv) Improving the ways in which the Commonwealth
evaluates and adopts policies to assist individuals
diagnosed with Alzheimer's disease and related disorders
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and their families.
(b) Update.--The State Plan shall be updated every five
years to capture changes in trends, scientific and research
advancements, gaps in services and other emerging issues
impacting the Alzheimer's disease and related disorders
population.
Section 6. Data collection.
The department shall include the Caregiver Module and
Cognitive Decline Module in the annual survey on a rotating
annual basis to collect prevalence data, track trends over time
and analyze data to direct public health programs and resources.
Section 7. Appropriation.
The amount of $750,000 is appropriated annually to the
department for implementation and maintenance of this act.
(d) Term.--Members shall be eligible for reappointment but
shall serve no more than two consecutive full terms. Members
shall serve until a successor is appointed and qualified,
provided the successor represents the interests of the
membership class for which the member was appointed.
(e) Vacancies.--Any vacancy of the advisory committee shall
be filled by the original appointing authority. An individual
appointed to fill a vacancy shall serve the balance of the
previous member's term.
(f) Removal.--Members may be removed from the committee for
the following reasons:
(1) A member who fails to attend three consecutive
meetings shall forfeit the member's seat unless the
chairperson, upon written request from the member, finds that
the member should be excused from a meeting.
(2) A member shall forfeit the member's seat if the
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member no longer represents the interests of the membership
class for which the member was appointed. A member meeting
the threshold under this paragraph shall no longer be
employed or associated with the interests of the respective
qualifications for which the member was appointed.
(g) Expenses.--Members may not receive compensation or
remuneration for service as advisory committee members.
Nongovernmental advisory committee members shall be entitled to
reimbursement for travel and related actual expenses accrued in
the performance of the duties as members, in accordance with
Commonwealth travel policy.
(h) Designee.--Governmental members and the member who is
living with Alzheimer's, Dementia or related disorder may
appoint a designee to attend and vote at meetings of the
advisory committee. Each member who appoints a designee shall do
so by sending a letter to the chairperson stating the name of
the designee.
(i) Chair.--The chair of the advisory committee shall be the
secretary or a designee.
(j) Vice chair.--The vice chair of the committee shall be
the Secretary of Health or a designee.
Section 5. Powers and duties of the advisory committee.
(a) Committee.--The advisory committee shall meet on a
quarterly basis at minimum and shall have the following powers
and duties:
(1) Assess the current and future impact of Alzheimer's,
Dementia and related disorders on residents of this
Commonwealth.
(2) Examine the existing industries, services and
resources addressing the needs of persons with Alzheimer's,
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Dementia and related disorders, their families and
caregivers.
(3) Develop strategies to mobilize a Statewide response
to Alzheimer's, Dementia and related disorders.
(4) Advise the department on necessary updates and
implementation of the State Plan.
(5) Consult with various Commonwealth agencies and to
make recommendations on regulations, licensure, financing or
any other responsibilities of those Commonwealth agencies
relating to Alzheimer's, Dementia and related disorders.
(6) Perform other duties as the Governor may assign
relating to Alzheimer's, Dementia and related disorders.
(7) Develop and adopt rules for conducting advisory
committee meetings, including, but not limited to, the
procedure for formally adopting the approval of committee
reports before release to the public.
(b) Scope.--All powers and duties enumerated in this section
shall be performed in a manner that addresses all areas of
Alzheimer's, Dementia and related disorders.
Section 8 6. Effective date.
This act shall take effect in 180 days.
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