CHRONOLOGY

2010

  • 2010 – The NTG is organized following testimony at two Administration on Developmental Disabilities' public listening sessions in Orlando, Florida, and Detroit, Michigan, with help from AAIDD, UIC, and AADMD

2011

  • 2011 – President Obama signs the National Alzheimer's Project Act  (NAPA)

  • 2011 – NTG attends the first meeting of the Advisory Council on Alzheimer's Research, Care, and Services

  • 2011 – First plenary meeting of NTG in June at AAIDD conference in St. Paul, Minnesota

  • 2011 – Second plenary meeting of NTG in November at AUCD conference in Arlington, Virginia

2012

  • 2012 -- NTG issues the 'My Thinker's Not Working' document and action plan

  • 2012 – The National Plan to Address Alzheimer's Disease, under NAPA, is issued

  • 2012 – NTG formalizes governance via an administrative ‘Steering Committee’

2013

  • 2013 – NTG issues the NTG-EDSD and Manual

  • 2013 – The first plan update to the National Plan, under NAPA, is issued

  • 2013 – NTG publishes ‘Guidelines for Structuring Community Care and Supports for People with Intellectual Disability Affected by Dementia

  • 2013 – NTG publishes ‘Consensus Recommendations for the Evaluation and Management of Dementia in Adults with Intellectual Disability’

2014

  • 2014 – The second plan update to the National Plan, under NAPA, is issued

  • 2014 – NTG publishes ‘Guidelines for Dementia-Related Health Advocacy for Adults with Intellectual Disability and Dementia’

  • 2014 – NTG completes the National Core Curriculum on Dementia and Intellectual Disability and field-tests a two day workshop model

  • 2014 – First NTG national ‘conference’ within AADMD in Princeton, New Jersey

  • 2014 – NTG publishes ‘Viability of a dementia advocacy effort for adults with intellectual disability: using a national task group approach’ in a professional journal

  • 2014 --  NTG completes an agreement with the American Academy on Developmental Medicine and Dentistry to become a formal 'committee' under the Academy's by-laws.

2015

  • 2015 – NTG begins to provide two-day workshops on dementia and intellectual disability across the US – along with a train-the-trainer day

  • 2015 – The third plan update to the National Plan, under NAPA, is issued

  • 2015 – Second NTG national ‘conference’ within AADMD in Los Angeles, California

  • 2015 – NTG publishes ‘Why do we need national guidelines for persons with intellectual disability and dementia?’ in a professional journal

2016

  • 2016 – NTG expands provision of two-day workshops on dementia and intellectual disability across the US – along with a train-the-trainer day

  • 2016 – The fourth plan update to the National Plan, under NAPA, is issued

  • 2016 – Third NTG national ‘conference’ is held within AADMD in Chicago, Illinois

  • 2016 – Agreement is reached with a Canadian-based consortium to pilot an adapted version of the NTG workshop in Canada

  • 2016 – The NTG-EDSD is selected as a core instrument within the national Down syndrome biomarkers study funded by NIH

  • 2016 – NTG is involved with aiding/providing workshops to several grantees within the Alzheimer’s Disease Initiative grant program under the Administration on Community Living

  • 2016 – NTG collaborating with the DS-MIG-USA in examining neuropathological regression among post-teen adults with Down syndrome

  • 2016 – NTG helps to plan and participates in the ‘International Summit on Dementia and Intellectual Disability’ held in Glasgow, Scotland, October 13-14, along with Stirling University's Dr. Karen Watchman

  • 2016 – NTG examines producing a NTG-EDSD 2.0; decides not to as there are too many extant language versions

  • 2016 -- NTG joins the LEAD Coalition in Washington, DC

2017

  • 2017 -- Fourth NTG national 'conference' is held within AADMD in Houston, Texas

  • 2017 – NTG working with NDSS and the Alzheimer’s Association to produce a booklet on dementia and Down syndrome for families and other caregivers

  • 2017 – NTG decides to issue guidelines for the development and use of small community care settings for people with intellectual  disability affected by dementia

  • 2017 – NTG continues to shadow the NAPA Federal Council and the National Plan updates to ensure adequate and appropriate inclusion of concerns of people with intellectual disability and their caregivers.

  • 2017-- NTG provides technical assistance, via a two-year contract, to the Seven Hills Rhode Island organization's ACL ADI dementia grant project

2018

  • 2018 -- Sixth NTG national 'conference' is held within AADMD in Seattle, Washington

  • 2018 -- NTG Co-Chair, Dr. Seth Keller, received 'Spirit of the NTG' award at Seattle conference

  • 2018 -- NTG recognizes Prof. Roy I. Brown with 'Lifetime Achievement' award at Seattle Conference

  • 2018 -- NTG participates as a partner with NDSS in first Adult Down Syndrome Summit in Arlington, Virginia

  • 2018 -- NTG Co-Chair, Dr. Seth Keller, establishes the Intellectual Disability Special Interest Group within the American Academy of Neurology

  • 2018 -- NTG joins the DS-Connect Consortium at NIH

  • 2018 -- NTG's family advocacy directorate begins holding internet-based caregiver support groups

2019

  • 2019 -- NTG participates as a partner with NDSS in the second Adult Down Syndrome Summit in Detroit, Michigan 

  • 2019 -- NTG recognizes Ms. Janet Miller with 'Spirit of the NTG' award at the Adult Down Syndrome Summit

  • 2019 -- Seventh NTG national 'conference' is held within AADMD in Rochester, New York

  • 2019 -- Agreement is signed with NTG Canada to share information and the NTG curriculum so workshops could be held in Canada

  • 2019 -- NTG receives WITH Foundation grant to study use of SAFD instrument

  • 2019 -- NTG Canada begins providing two-day and three-day workshops on dementia and intellectual disability

  • 2019 -- NTG Co-Chair, Dr. Matthew P. Janicki, appointed to the federal Advisory Council on Alzheimer's Research, Care, and Services

  • 2019 -- NTG family advocacy directorate develops a guide for on-line support group facilitators

  • 2019 -- NTG partners with Temple University to undertake a proof-of-concept study of on-line support groups

2020

  • 2020 -- NTG establishes it primary website at https://www.the-ntg.org

  • 2020 -- NTG partners with US Down syndrome organizations to issue a Q&A on COVID-19 and Down syndrome

  • 2020 -- NTG offers its first virtual two-day workshop due to COVID-19 on-site workshop cancellation

  • 2020 -- NTG Co-Chair, Dr. Seth Keller, organizes a national campaign to modify restrictive hospital visitation policies

  • 2020 -- NTG joins FNIA

  • 2020 -- NTG formalizes its status agreement with the AADMD via an amendment to its 2014 affiliative agreement 

  • 2020 -- NTG provides technical assistance, via a two-year contract, to the Hawaii Catholic Charities organization's ACL ADPI dementia grant project

National Task Group on Intellectual Disabilities and Dementia Practices. © 2020                                                                                                         Edited 7/1/20

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