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National Task Group on Intellectual Disabilities and Dementia Practices
What are we?
The ‘NTG’ is a coalition of interested persons and organizations working toward ensuring that the needs and interests of adults with intellectual and developmental disabilities who are affected by Alzheimer’s disease and related dementia – as well as their families and friends – are taken into account as part of the National Plan to Address Alzheimer’s Disease.
The NTG is composed of families, association and organization representatives, practitioners, academics, and others who contribute time and effort to its activities. The NTG is supported by the American Academy of Developmental Medicine and Dentistry and the Gerontology Division of the American Association on Intellectual and Developmental Disabilities, along with the Rehabilitation Research and Training Center on Aging with Developmental Disabilities-Lifespan Health and Function at the University of Illinois at Chicago and the Center on Excellence in Aging at the University at Albany.
An invitation to affiliate with the NTG is open. If you are interested in contributing to this effort, you can register as a contributing member or NTG friend at this site. For questions, please contact either Seth Keller, M.D. (American Academy of Developmental Medicine and Dentistry) at email@example.com or Matthew Janicki, Ph.D. (University of Illinois at Chicago) at firstname.lastname@example.org.
The NTG is working to underpin the National Plan to Address Alzheimer’s Disease, and is represented by members at the quarterly meetings of the federal Advisory Council on Alzheimer’s Research, Care, and Services.
The chairs of the NTG are Dr. Seth M. Keller and Dr. Matthew P. Janicki
NTG Announces its 2014 Princeton Conference on Intellectual Disabilities and Dementia
The National Task Group will be holding a national conference on dementia and intellectual disabilities on June 17 and 18, 2014 in Princeton, New Jersey. The conference will be a cooperative endeavor that will include the NTG, the new RRTC on Developmental Disabilities and Health at the University of Illinois at Chicago, the Academy of Developmental Medicine and Dentistry, Special Olympics, and a range of state and national organizations, university centers, and consumer advocacy groups.
Thematically, the conference will be designed to inform on current practices and set the tone for events and activities to come related to the aims of the National Plan to Address Alzheimer's Disease and the NTG's Action Plan. The conference will involve key federal and national organization officials in plenary sessions, as well as be composed of individual presentations within several tracks. The conference will also be the site for the launch of the NTG's forthcoming national training and education curriculum on intellectual disabilities and dementia and the launch of CARF's new standards for programs serving people with intellectual disabilities and dementia. Several training workshops will be held on June 16 relative to these launches.
More information will be forthcoming. A Powerpoint slide announcing the conference is available here.
A call for papers / posters will be issued shortly.
NTG's New Efforts to Develop a Training Curriculum on Dementia and Intellectual Disabilities and Establish Program Standards for Dementia-Related Services
The NTG has created a new Group T - for training - and organizing several work groups to help us create a standardized education and training curriculum on dementia and intellectual disabilities. Members interested in joining Group T are asked to send an email to Kathryn Pears (email@example.com) or Kathie Bishop (firstname.lastname@example.org), the Group T co-leaders.
Our new Group T is working toward helping address the provision in the 2013 Update of the National Plan to Address Alzheimer’s Disease which calls for the "Development of a curriculum on Alzheimer's disease for primary care practitioners so that providers have the necessary skills to provide high-quality dementia care". The NTG’s goal is to have the working group address this aspect with respect to environments that serve adults with intellectual and developmental disabilities. The working group has begun its work and held a development meeting in Ft. Lauderdale, Florida, on July 30-31. The group will shortly issue a workplan and timelines for the curriculum development. A tentative outline for the workplan is available here. Our goal is to have a working curriculum available by the end of the year.
The NTG is working with CARF International to establish a set of national program standards for dementia-related services serving persons with intellectual and developmental disabilities. As part of this process, in January 2013, CARF convened an International Standards Advisory Committee (ISAC) in collaboration with the NTG to address needs related to standards for individuals with ID/DD and co-occurring dementia. The ISAC included diverse service providers in the aging and community services fields as well as family caregivers. Prior to the ISAC, a CARF webinar provided a briefing on key issues and some of the standards that would be addressed. At the meeting, ISAC participants identified practices that can be implemented by service providers to promote quality of care for individuals with ID/DD and dementia. The CARF has recently issued a White Paper is an interim step to the development of the formal standards for programs serving people with intellectual/developmental disabilities affected by dementia. CARF anticipates having a draft of the standards later this year and the final standards issued in the early part of 2014. The standards will go into effect in mid-2014.
The White Paper prepared by CARF International in collaboration with the NTG, "Living longer, living better: Improving service quality and supports for persons with ID/DD and dementia" is available for download here.
We are circulating this White Paper and asking for any comments or feedback that will help CARF with the standards development. Any and all comments welcome - please direct them to either Seth Keller ( email@example.com ) or Matt Janicki ( firstname.lastname@example.org ). Input, by September 15th, is much welcome.
Products of the NTG
- 'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports (PDF)
- 'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports – Executive Summary (PDF)
- 'Dimentica la disabilità e guarda alla persona': Una strategia nazionale per permettere agli adulti con Disabilità Intellettiva affetti da Demenza, di rimanere nella propria Comunità, ricevendo sostegni di qualità (PDF) [Italian version of 'Thinker document']
- Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia (Booklet version) (PDF)
- Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia (Journal version)
- NTG-Early Detection Screen for Dementia - English (PDF)
- NTG-Early Detection Screen for Dementia - French (PDF)
- Le GTN-Outil de dépistage précoce de la démence (PDF)
- NTG-Early Detection Screen for Dementia - German (PDF)
- NTG-Early Detection Screen for Dementia - Greek (PDF)
- NTG-Early Detection Screen for Dementia - Italian (PDF)
- L'NTG-Screening precoce per la Demenza (PDF)
- NTG-Early Detection Screen for Dementia - Spanish (PDF)
- El NTG- Detección temprana de la demencia (PDF)
- Manual: NTG-EDSD [English] - PDF
- Manuel: ODPD-GTN [Français] - PDF
- The National Task Group on Intellectual Disabilities and Dementia Practices Consensus Recommendations for the Evaluation and Management of Dementia in Adults with Intellectual Disabilities (PDF)
- Frequently Asked Questions (PDF)
- NTG Brochure (PDF)
The NTG’s Educational Activities
The NTG is engaging in an awareness campaign that involves a series of national and regional workshops and Webinar series, and distribution of public education materials. The NTG has organized workshops on the topic of dementia and intellectual disabilities (in 2012, workshops were held in Phoenix, Charlotte, Los Angeles, New Brunswick [NJ], and Chicago). In 2013 workshops have been held or are planned for Ontario, Canada, Bangor (ME), Richmond (VA), Baltimore (MD), Prince George (BC) and several other locations. NTG members are also involved in special presentations at the annual meetings of various national associations and organizations. The 2013 workshop schedule is available here.
A program of educational Webinars was run in March 2013 and will also run in May, 2013. For the Webinar schedule click here.
The NTG also has a promotional brochure and set of FAQs that promote awareness of dementia and of the activities of the NTG. NTG members have helped create informational materials that are being distributed both other organizations, such as the NDSS.
Persons and organizations interested in organizing day-long or mini-workshops on dementia and intellectual disabilities conducted by the NTG can contact the NTG for further information. Contact Dr. Keller (email@example.com) or Dr. Janicki (firstname.lastname@example.org).
NTG Current Activities
The NTG is seeking volunteers to aid with its educational efforts. If you are interested in helping make contact with various organizations or participating in educational events, please contact Dr. Seth Keller.
Members of the NTG will be discussing the NTG’s efforts during 2013 at the following events:
AAIDD Texas Chapter Conference, Houston, Texas (July)
2013 Conference of AAIC, Boston, Massachusetts (July)
Annual Conference of The Arc, Seattle, Washington (August)
Congresso Internazionale La Sindrome di Down, Rome, Italy (November)
Background and History of the NTG
To read about the background and history of the NTG visit this page.
The Governance of the NTG
The NTG is managed by a steering committee composed of the following NTG members:
Matthew P. Janicki, Ph.D. (Co-chair)
Seth M. Keller, M.D. (Co-chair)
Kathie Bishop, Melissa Disipio, Lucy Esralew, Lawrence T. Force, Mary Hogan, Nancy Jokinen, Ronald Lucchino, Philip McCallion, Julie Moran, Dawna Torres Mughal, Leone Murphy, Lin Nelson, Kathryn Pears, Mike Rafii, Nahib Ramadan, Kathy Service, Baldev Singh, Kathy Srsic-Stoehr, Sara Weir
A full membership list is available here.