National Task Group Working Groups

The National Task Group on Intellectual Disabilities and Dementia Practices is a collaborative effort of the American Academy of Developmental Medicine and Dentistry, the University of Illinois at Chicago's RRTC on Aging and Developmental Disabilities - Lifespan Health and Function, and the American Association on Intellectual and Developmental Disabilities.

The National Task Group is organized around several working groups.

  • The dementia screening group reviewed a number of existing assessment instruments and has recommended a dementia-behavior related screening instrument which could be used by providers for looking for cognitive and functional decline in adults with ID who are aging. It is currently assessing the use of one particular screening instrument and is carrying out a pilot on its use nationally.

    Group Leader: Lucy Esralew, Ph.D. lesralew@trinitas.org
     
  • The health care supports group is in the process of developing practice guidelines and informational packets to help health practitioners follow a process if decline is suspected and assess treatment outcomes when medical therapies are employed. It is also producing practice guidelines on health-related social care practices.

    Group Leader: Seth M. Keller, M.D. sethkeller@aol.com
     
  • The community supports group is developing a document that will recommend models of informal and formal support and care that can offer long term care in community settings, including continued aging in family homes, specialized support in 'dementia capable' group homes, and aging in place supports during early stage care. There is also a group that is exploring training and education opportunities.

    Group Leaders: Larry Force, Ph.D. lawrence.force@msmc.edu, Nancy Jokinen, Ph.D. jokinenn@unbc.ca
     
  • The advocacy group has worked diligently to insure that individuals with IDD, especially those with Down syndrome, were included in the National Plan for Alzheimer’s disease. The group will closely monitor the soon to be established HHS Task Group which will focus on populations disproportionately impacted by dementia, including those with Down syndrome. The Advocacy Group works collaboratively with Healthcare, Screening and Community Support Groups to educate and train families as they formulate long term plans with a focus on best practices for aging with IDD.

    Group Leaders: Mary Hogan maryhogan@comcast.net, Leone Murphy leonemur2@yahoo.com
     
  • Friends of the NTG

    This group is composed of those who have an interest in the efforts of the NTG and would like to be receive updates, infoblasts, invitations to educational activities but at this time do not wish to be actively involved in participating in specific work group work. Providing comments and recommendations is still always recommended and appreciated. A “Friend” can always decide later to become a work group member.

To join one or more of the task groups, visit the National Task Group signup page.

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