ARTICLE 5R. THE ALZHEIMER\'S SPECIAL CARE STANDARDS ACT.

§16-5R-1. Name of act.

This act shall be known and may be cited as the "Alzheimer's Special Care Standards Act."

§16-5R-2. Findings and declarations.

The Legislature finds and declares that:

(a) Certain nursing homes and related facilities, adult congregate living facilities, adult day care centers, hospices and adult foster homes claim to provide special care units and services for persons who have alzheimer's disease;

(b) It is in the public interest to provide for the protection of consumers by ensuring the accuracy and authenticity of such claims; and

(c) The provisions of this article are intended to require the facilities to actually provide the care they claim to offer, require written disclosure of special services provided, require the appropriate state licensing agency to examine the performance of such facilities in providing special services for persons who have alzheimer's disease, and provide penalties for failure to provide the services claimed as the agency considers appropriate.

§16-5R-3. Definition of alzheimer's special care unit/program.

For the purposes of this article, the following definitions apply:

(a) "Alzheimer's disease" means a diagnosis of presenile dementia or senile dementia-Alzheimer type (SDAT), characterized by confusion, memory failure, disorientation, restlessness, agnosia, speech disturbances, inability to carry out purposeful movements and hallucinosis.

(b) "Alzheimer's Special Care Unit or Program," means any facility that secures, segregates or provides a special program or special unit for residents with a diagnosis of probable alzheimer's disease or a related disorder and that advertises, markets or otherwise promotes the facility as providing specialized alzheimer's or dementia care services.

(c) "Department" means the Department of Health.

(d) "Facility" means any nursing home or facility, residential board and care home, personal care home, assisted living facility, adult congregate living facility, home health agency, adult day care center, hospice or adult foster home situate or operating in this state.

(e) "Resident" means an individual living in a facility that offers an alzheimer's special care unit or program.

(f) "Secretary" means the secretary of the Department of Health.

§16-5R-4. Alzheimer's special care disclosure required.

(a) Any facility which offers to provide or provides care for a person with alzheimer's disease through an alzheimer's special care unit or special care program shall disclose in writing the form of care or treatment that distinguishes the unit or program as being especially applicable to or suitable for such persons. The disclosure shall be provided to the department, to any person seeking placement within an alzheimer's special care unit or program, and to any legal guardian or relative acting on behalf of a resident or person seeking placement.

(b) The department shall examine all disclosures provided to it as part of the facility's license renewal procedure and verify the accuracy of the disclosures.

(c) The disclosure required by this section shall include the following information:

(1) A statement of the overall treatment philosophy and mission of the special care unit or program which reflects the needs of residents afflicted with alzheimer's disease or dementia;

(2) A description of the facility's screening, admission and discharge procedures, assessment, care planning and implementation, staffing patterns and training ratios unique to the program or unit;

(3) A description of the physical environment and design features and an explanation of how they are appropriate to support the functioning of cognitively impaired adult residents;

(4) A description of activities available to residents, the frequency and types of resident activities, and how they are specialized for residents who suffer from alzheimer's disease;

(5) A statement that describes the involvement of families in the care of residents and the availability of family support programs;

(6) The costs of care and any additional fees unique to the alzheimer's special care unit or program.

§16-5R-5. Standards for care; rules.

(a) The secretary shall propose rules for legislative approval in accordance with the provisions of article three, chapter twenty-nine-a of this code, setting minimum standards for the care and treatment of persons with alzheimer's disease and other dementia in facilities offering alzheimer's special care units or programs.

(b) The standards established pursuant to this section shall apply to all facilities offering alzheimer's special care units or program and shall be in addition to any other statutory requirements, rules or standards that are applicable to the facility.

(c) The secretary shall enforce the rules and standards for alzheimer's special care units or programs and shall exercise all powers necessary for such enforcement, including investigation and reporting of violation of the rules, issuance of notices or warnings to facilities found in violation of the standards, assessment of civil penalties in accordance with the applicable licensing provisions of the facility, and suspension or revocation of licenses.

(d) If a facility advertising, marketing or otherwise promoting the facility as providing specialized alzheimer or dementia care services does not meet the standards established by the secretary, the department shall instruct the facility to cease such advertising, marketing or promoting.

§16-5R-6. Alzheimer's and dementia care training; rules.

(a) For the purposes of this section, "resident" means an individual receiving care or services in an adult day care facility, nursing home, assisted living facility or residential care community.

(b) The Secretary shall propose rules for legislative approval in accordance with the provisions of article three, chapter twenty-nine-s of this code, setting minimum standards for Alzheimer's and dementia care training of all staff, employees and contractors that come in regular and direct contact with residents.

(c) The standards established in this section shall apply to adult day care facilities, nursing homes, assisted living facilities and residential care communities who provide services under the supervision of a licensed operator.

§16-5R-7. Establishment of a central registry.

(a) To the extent funds are available, the Governing Board of the West Virginia University shall establish an Alzheimer's Disease Registry to collect information concerning Alzheimer's disease and related disorders. The purpose of the registry shall be to provide a central database of information to assist in the development of public policy and planning. The information collected by the registry shall be analyzed to prepare reports and perform studies as necessary when such data identifies information useful in developing policy.

(b) All reporting sources, including hospitals, physicians, facilities, clinics or other similar units diagnosing or providing treatment or care for Alzheimer's disease and related disorders, shall provide a report of each case to the Alzheimer's Disease Registry in the format specified.

(c) All information reported pursuant to this section is confidential and shall be used only for the purposes set forth herein. A report provided to the Alzheimer's Disease Registry that discloses the identity of the individual being treated shall only be released in accordance with the provisions of the Health Insurance Portability and Accountability Act of 1996. No liability of any kind or character for damages or other relief shall arise or be enforced against any reporting source by reason of having provided the information or material to the Alzheimer's Disease Registry.

(d) The governing board shall propose rules pursuant to the provisions of article three, chapter twenty-nine-a of this code to implement this section. The rules shall include, but not be limited to: (1) The content and design of all forms and reports required by this section; (2) the type of information to be collected and maintained; (3) the procedures for disclosure of nonidentifying data to other appropriate research entities; (4)the manner in which reporting entities or individuals, including families, may be contacted by the registry for additional relevant information; and (5) any other matter necessary to the administration of this section.

§16-5R-8. State Alzheimer’s Plan Task Force.

(a) There is created the Alzheimer's Disease and Other Dementia Advisory Council.

(b) (1) The Alzheimer's Disease and Other Dementia Advisory Council consists of the following voting members:

(A) One individual living with Alzheimer's disease or another dementia or a family member of such an individual;

(B) One individual who is the family caregiver of an individual living with Alzheimer's disease or another dementia;

(C) One individual who represents nursing homes;

(D) One individual who represents assisted living facilities;

(E) One individual who represents providers of adult day care services;

(F) One individual who represents the home care providers;

(G) One physician who has experience diagnosing and treating Alzheimer's;

(H) One individual who conducts research regarding Alzheimer's disease or other dementias at West Virginia University;

(I) One individual who conducts research regarding Alzheimer's disease or other dementias at Marshall University;

(J) At least one individual who represents the Alzheimer's Association West Virginia Chapter;

(K) One individual who represents the Area Agencies on Aging;

(L) One individual who represents an organization that advocates for older adults;

(M) One individual who represents veterans' nursing home.

(2) The following five members shall be considered nonvoting members:

(A) The Secretary of the Department of Health or the Secretary's designee;

(B) The Commissioner of the Bureau for Public Health or the Commissioner's designee;

(C) The Commissioner of the Bureau of Senior Services or the Commissioner's designee;

(D) The Commissioner of the Bureau for Medical Services or the Commissioner's designee; and

(E) The State Long-term Care Ombudsman or the Ombudsman's designee.

(c) A voting member shall be appointed by the Secretary of the Department of Health. Appointments shall be made not later than 30 days after the effective date of this act. Vacancies shall be filled in the same manner as original appointments.

(d) Non-governmental members of the council shall not be compensated. The Department of Health shall finance any costs of the council with existing funds.

(e) The members of the council shall select the chairperson and vice chairperson who are not be employees of the state. The council shall hold its first meeting not later than 30 days after the appointment of its members. For purposes of the first meeting, the Secretary of Health or the Secretary's designee shall call and preside over the first meeting until a chair is selected. Thereafter, the council shall meet at the call of the chairperson or at least once per quarter.

(f) A majority of the voting members shall constitute a quorum for the conduct of meetings.

(g) The Department of Health may provide staff support to the council as necessary to assist the council in the performance of its duties.

(h) The Alzheimer's Disease and Other Dementias Advisory Council shall have the following responsibilities:

(1) Examine the needs of individuals living with Alzheimer's disease or other dementias;

(2) Review the services available in the state for those individuals and their family caregivers; and

(3) Assess the ability of health care providers and facilities to meet the individuals' current and future needs.

(i) The advisory council shall consider and make findings and recommendations on all of the following topics:

(1) Trends in the state's Alzheimer's disease and other dementias populations and service needs, including:

(A) The state's role in providing or facilitating long-term care, family caregiver support, and assistance to those with Alzheimer's disease or other dementias;

(B) The state's policies regarding individuals with Alzheimer's disease or other dementias;

(C) The fiscal impact of Alzheimer's disease and other dementias on publicly funded health care programs;

(D) The state's policies on access to treatment for Alzheimer's disease and other dementias;

(E) The state's role in facilitating risk reduction to the general public; and

(F) Updates to the surveillance system to better determine the number of individuals diagnosed with Alzheimer's disease or other dementias and to monitor changes to such numbers.

(2) Existing resources, services, and capacity relating to the diagnosis and care of individuals living with Alzheimer's disease or other dementias, including;

(A) The type, cost, availability, and accessibility of dementia care services;

(B) The availability of health care workers who can serve people with dementia including, but not limited to, neurologists, geriatricians, and direct care workers;

(C) Dementia-specific training requirements for public and private employees who interact with people living with Alzheimer’s or other dementias, which shall include but not be limited to long-term care workers, case managers, adult protective services, law enforcement, and first responders;

(D) Home and community-based services, including respite care, for individuals diagnosed with Alzheimer's disease or other dementias and their families;

(E) Quality care measures for home and community-based services and residential care facilities; and

(F) State-supported Alzheimer's and other dementias research conducted at universities located in this state.

(3) Policies and strategies that address the following:

(A) Educating providers to increase early detection and diagnosis of Alzheimer's disease and other dementias;

(B) Improving the health care received by individuals diagnosed with Alzheimer's disease or other dementias;

(C) Evaluating the capacity of the health care system in meeting the growing number and needs of those with Alzheimer's disease and other dementias;

(D) Increasing the number of health care professionals necessary to treat the growing aging and Alzheimer's disease and dementia populations;

(E) Improving services and access to the services provided in the home and community to delay and decrease the need for institutionalized care for individuals with Alzheimer's disease or other dementias;

(F) Improving long-term care, including assisted living, for those with Alzheimer's disease or other dementias;

(G) Assisting unpaid Alzheimer's disease or dementia caregivers;

(H) Increasing public awareness of Alzheimer's disease and other dementias;

(I) Increasing and improving research on Alzheimer's disease and other dementias;

(J) Promoting activities to maintain and improve brain health;

(K) Improving access to treatments for Alzheimer's disease and other dementias'

(L) Improving the collection of data and information related to Alzheimer's disease and other dementias and their public health burdens;

(M) Improving public safety and addressing the safety-related needs of those with Alzheimer's disease or other dementias;

(N) Addressing legal protections for, and legal issues faced by, individuals with Alzheimer's disease or other dementias; and

(O) Improving the ways in which the government evaluates and adopts policies to assist individuals diagnosed with Alzheimer's disease or other dementias and their families.

(j) No later than 24 months, the council shall submit a State Alzheimer's Plan to the Joint Committee on Health and to the Governor. The Alzheimer's Disease and Other Dementia Advisory Council terminates on July 31, 2026.