Alzheimer’s Disease Plan Working Group

 WHEREAS, more than 5 million Americans suffer from Alzheimer’s, and that number is estimated to more than triple by the year 2050; and

WHEREAS, nearly one out of every three seniors who die each year suffer from some form of dementia; and

WHEREAS, Alzheimer’s is a serious disease that affects not only those who have it, but also their families and caretakers; and

WHEREAS, Kansas is the only state in the nation that is not currently drafting or implementing a comprehensive Alzheimer’s Disease Plan; and

WHEREAS, the severity of this health crisis necessitates the implementation of a statewide response plan; and

WHEREAS, this health crisis has a significant fiscal impact on the State of Kansas, which is estimated to keep increasing; and

WHEREAS, Alzheimer’s and other forms of dementia negatively impact the health and quality of life of Kansans.

NOW THEREFORE, pursuant to the authority vested in me as Governor of the State of Kansas, I hereby establish the Kansas Alzheimer’s Disease Working Group (“Working Group”):

  1. Membership of the “Working Group” shall be comprised of the following members:
    1. One member appointed by the Speaker of the House;
    2. One member appointed by the House Majority Leader;
    3. One member appointed by the Minority Leader of the House;
    4. One member appointed by the Senate President;
    5. One member appointed by the Senate Majority Leader;
    6. One member appointed by the Minority Leader of the Senate;
    7. At least one person with Alzheimer’s disease;
    8. At least one caregiver of a person with Alzheimer’s disease;
    9. A representative of the nursing facility industry;
    10. A representative of the assisted living industry;
    11. A representative of the in-home care/hospice industry; ;
    12. A representative of the medical care provider community;
    13. An Alzheimer’s disease researcher;
    14. A representative of the of the Alzheimer’s Association;
    15. A representative of the Kansas Silver Haired Legislature;
    16. A representative from the law enforcement community;
    17. A representative from the Kansas Department of Labor or Kansas Department of Commerce with knowledge of workforce issues;
    18. Two (2) representatives from the Kansas Department for Aging and Disability Services with knowledge of mental health, developmental disabilities, aging, and long-term care issues; and
    19. Two (2) representatives from the Kansas Department of Health and Environment with knowledge of Medicaid and public health issues.
  1. The Kansas Department for Aging and Disability Services shall convene the Working Group and provide the necessary staffing and administrative support to the Working Group.
  1. The Working Group shall be chaired by one of the members named above, as determined by the Governor.
  1. Other members with relevant experience may be invited to join the Working Group by the Governor or Chair.
  1. The Working Group shall meet monthly or as needed, at the discretion of the Chair.
  1. Members of the Working Group shall not receive compensation, subsistence, allowance, or associated expenses. Officers or employees of state agencies who are appointed to the Working Group as part of their duties shall be authorized to participate on the Working Group and may claim subsistence, allowance, mileage, or associated expenses as permitted by law.
  1. It shall be the duty of the Working Group to:
    1. Assess the current and future impact of Alzheimer’s disease on residents of the State of Kansas;
    2. Examine the existing industries, services, and resources addressing the needs of persons with Alzheimer’s, their families, and caregivers; and
    3. Develop a strategy to mobilize a state response to this public health crisis.
  1. The Working Group shall also include an examination of the following in its assessment and recommendations:
    1. Trends in Alzheimer’s population and needs, including the changing population with dementia, including but not limited to:
      1. State role in long-term care, family caregiver support, and assistance to persons with early-stage and early onset of Alzheimer’s;
      2. Surveillance of persons with Alzheimer’s disease for purposes of having proper estimates of the number of persons in the state with Alzheimer’s disease; and
      3. The inappropriate use of antipsychotic medications to treat symptoms of dementia, which is a multi-faceted issue that touches every major area of our state’s health care system, and comprehensive strategies to reduce this use.
    2. Existing services, resources, and capability, including but not limited to the:
      1. Type, cost, and availability of dementia services;
      2. Dementia-specific training requirements for long-term care staff;
      3. Quality care measures for long-term care facilities;
      4. Capacity of public safety and law enforcement to respond to persons with Alzheimer’s;
      5. Availability of home- and community-based resources for persons with Alzheimer’s and respite care to assist families;
      6. Inventory of long-term care dementia care units;
      7. Adequacy and appropriateness of geriatric-psychiatric units for persons with behavior disorders associated with Alzheimer’s and related dementia;
      8. Assisted living residential options for persons with dementia; and
      9. State support of Alzheimer’s research through Kansas universities and other resources.
    3. Needed State policies or responses, 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.
  1. The Working Group is directed to hold public meetings and to utilize technological means, such as webcasts, to gather feedback on the recommendations from persons and families affected by Alzheimer’s disease and the general public. The Working Group shall be subject to the Kansas Open Records Act and the Kansas Open Meetings Act. Plans, reports, or recommendations of any nature adopted by the Working Group shall be considered advice to the Governor and Legislature, and shall not be construed as official policies, positions, or interpretations of laws, rules, or regulations by any department or agency of state government, nor shall any such department or agency be bound in any manner to consider such advice when conducting their regulatory affairs.
  1. The Working Group is directed to submit a report of its finding and recommendations to the Legislature and Governor in the form of a Kansas Alzheimer’s Disease Plan by January 14, 2019, or as appropriate during the intervening period.
  1. The Working Group shall sunset upon delivery of the Kansas Alzheimer’s Disease Plan to the Legislature and Governor. By further Executive Order, the Governor may reconvene the Working Group to update the plan in the future.

This document shall be filed with the Secretary of State as Executive Order No. 18-14 and shall become effective immediately.