History of the NTG

BACKGROUND AND HISTORY OF THE NTG

The Beginning. The NTG was organized in late 2010 when the American Association on Intellectual and Developmental Disabilities, the American Academy of Developmental Medicine and Dentistry, 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, combined their efforts and created the National Task Group on Intellectual Disabilities and Dementia Practices. Shortly afterwards in 2011, President Obama signed the National Alzheimer's Project Act (NAPA) which led to the development of a coherent and coordinated national strategy on dealing with Alzheimer's disease in the United States.

Over its first year, the NTG held two plenary meetings. The first, in conjunction with the 2011 AAIDD Conference, was held in St. Paul, Minnesota, on June 6, 2011. The members of the National Task Group spent the day working to build consensus on the Groups work and products. Each of the working groups presented their reports, which contained draft documents reflecting the group's work. Consensus was achieved on the work done by each group and a general discussion helped to set the tone for the NTG’s further work. It was decided to produce a general summative report and the other products noted above. The second meeting was held on November 8, 2011 in Arlington, Virginia, in conjunction with the annual conference of the AUCD. Both meetings included representatives from national organizations and government agencies.

Aims of the NTG. The National Task Group was charged with complementing the NAPA effort and ensuring that the concerns and needs of people with intellectual disability and their families, when affected by dementia, are considered as part of this national strategy. To complement the federal initiative, the NTG was asked to address the myriad requests for more specific information and practice models for providing quality care for people with intellectual disabilities affected by dementia. When it began, the NTG set as its overall goals a number of tasks. One was to update the technological and clinical practices used by agencies in delivering supports and services to adults with ID affected by various dementias. Another was to create a workable screening instrument that would help substantiate suspicions of dementia-related decline, and a third was to educate and expand the knowledge about dementia and intellectual disabilities via trainings, production of materials, and informing key stakeholders. To accomplish its initial goals, the National Task Group organized three working groups: (1) Dementia Screening [Group S]; (2) Health Care Supports [Group H], and (3) Community Supports [Group C].

The Early Work. During its early years, the NTG, via its various working groups produced and issued a number of reports and documents. The NTG's major effort was the production and issuance of a summative report detailing the issues facing adults with intellectual disabilities and dementia, as well as their families and caregivers, and produced a National Action Plan on Dementia and Intellectual Disabilities. The report, “'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,” is composed a background information as well as formative suggestions for what could happen in the United States to address this growing challenge. In this report the NTG also has identified an administrative screening instrument which could become a standard instrument that may aid agencies with first-instance and period screening, as well as have use as part of the annual wellness visit under the Affordable Care Act. Also, in the National Dementia and Intellectual Disabilities Action Plan, the NTG proposed a series of actions that should be undertaken by national, state, and local organizations, as well as governmental entities at the federal and state level. The American Association for Intellectual and Developmental Disabilities was first to post the 'My Thinker' document on its website. Subsequently, it has been posted on the websites of numerous other organizations.

Products. A number of products have been produced by the NTG’s specific working groups. The dementia screening workgroup reviewed a number of existing assessment instruments and recommended a dementia-behavior related screening instrument which could be used by providers for looking for cognitive and functional decline in adults with intellectual disability who are aging. The health care supports workgroup produced suggested guidelines for assessment and interventions with medical personnel are involved. The community supports workgroup developed a guideline of recommended 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.

Work During the Early Years. Since 2014, the NTG has organized a number of workshops and webinars on the topic of dementia and intellectual disabilities. NTG members are also involved in special presentations at the annual meetings of various national associations and organizations, including the 2013 AAIC in Boston. The NTG offered advice to the CARF organization, a certification body for programs serving people with developmental disabilities. Consequently, the CARF produced a set of standards, “Older Adults and Older Adults/Dementia Care Specific Population Designations” that went into effect in July 2014. The standards were designed to assess individually tailored services that support adaptive aging and compensate for aging-related decline, such as seen in adults with intellectual disability and dementia.

Educational Activities. NTG members, along with collaborating organizations and several formerly named Geriatric Education Centers (GECs), engaged in developing a national curriculum for training personnel who work for agencies and organizations that provide services to adults with intellectual disability affected by dementia. Several levels of training materials were developed, including a core curriculum for personnel working directly with adults with dementia. A national curriculum of 18 modules was developed that can be used in the orientation of personnel who are new hires or who are already employed and work with adults with intellectual disabilities yet unaffected by dementia, or who might be at risk. The new national curriculum was launched on June 16, 2014 at the Joint Conference of the American Academy of Developmental Medicine and Dentistry and the National Task Group, in Princeton, New Jersey, was piloted at several settings in late 2014, and put into effect in 2015 with a series of regional workshops. The curriculum is now in place and serves as the core for a series of two-day workshops made available throughout the United States. The workshop also includes a third day for orientation of regional trainers who are authorized to use the modules for in-house training. The NTG also helped produce specific topical information for use by Geriatric Workforce Enhancement Programs (GWEPs) when HRSA developed a national slide set on dementia for America's workforce. The NTG continues to be involved in a variety of education efforts, including its members speaking at national and international conferences. The NTG has also held webinars involving an international audience.

Conferences. The NTG, in conjunction with the American Academy of Developmental Medicine and Dentistry, held a series of annual one-day track days on dementia-related issues and intellectual disability. The first conference was held in Princeton, New Jersey, in June 2014; a second in Los Angeles, California, in July 2015; a third in Chicago, Illinois in July 2016; a fourth in Houston, Texas, in June 2017, a fifth in Seattle, Washington, in 2018, and a sixth in Rochester, New York in June 2019. The 2020 conference scheduled to be held in Pittsburgh, Pennsylvania, was cancelled due to the COVID-19 pandemic. The NTG had planed to hold a virtual meeting in the winter of 2021, but this was cancelled due to the pandemic. See Conferences.

The NTG-EDSD. The NTG released the NTG-Early Detection Screen for Dementia (NTG-EDSD) which was developed in response to requests by family caregivers and agencies for a tool useful to record observations of changes in function. The NTG-EDSD is used in starting that critical conversation with (and among) clinical personnel as to whether their observations merit more explicit assessment for MCI or dementia or -- alternatively – signal behaviors that may be amenable to intervention and remediation. The NTG-EDSD, an administrative screening tool, is useful as part of the information collected in conjunction with the Affordable Care Act’s annual wellness visit and cognitive impairment assessment. The specialized information provided by the NTG-EDSD can aid community practitioners when examining and assessing adults with intellectual disability. The NTG-EDSD is designed to be completed by family caregivers and staff at local agencies and organizations. The NTG-EDSD and its manual are available in numerous language versions on the NTG website. The NTG-EDSD is in use by various organizations, research projects, and a number of ACL ADPI funded projects.

See the NTG-EDSD page for the various versions of the NTG-EDSD and manuals.

Postscript. In the summer of 2020, the NTG migrated from an informal association to a not-for profit organization, chartered under the laws of the State of Maine. From 2012 through to 2020, the NTG was governed by a steering committee and was formally a ‘committee’ under the by-laws of the American Academy of Developmental Medicine and Dentistry, a 501c3 not-for-profit corporation chartered in the Commonwealth of Kentucky. In mid-2020, the NTG Steering Committee voted to seek recognition as a formal organization and filed an application with the State of Maine's Secretary of State. In July 2020, the NTG received its official incorporation notice from the Secretary and subsequently proceeded to develop the structure for a formal not-for-profit corporation. The last formal meeting of the Steering Committee was held on September 24, 2020. The first meeting of the new formal NTG Board of Directors was held on October 21, 2020. The NTG now has an EIN number, a set of corporate by-laws, a conflict of interest policy, a Board of Directors and Board Officers, tax exempt 501(c)(3) status, and a not-for-profit corporate infrastructure.

Chronology of NTG

Publications about the NTG

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Viability of a Dementia Advocacy Effort for Adults with Intellectual Disability: Using a National Task Group Approach (Published in the Journal of Policy and Practice in Intellectual Disabilities)

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Why Do We Need National Guidelines for Adults with Intellectual Disability and Dementia?(Published in Alzheimer's & Dementia: Diagnosis, Assessment, and Disease Monitoring)

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NTG 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’
2013 – NTG develops an informal relationship with the Academy of Developmental Medicine and Dentistry

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 the first major 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 [Friends of the National Institute on Aging]
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
2020 – NTG partners with a number of national Down syndrome organizations to issue an updated Q&A on COVID-19 and Down syndrome
2020 – NTG members participate in the AAIC 2020 Conference
2020 – NTG partners with ACCSES and the University of Illinois at Chicago (UIC) on national survey of how COVID-19 is affecting providers of services
2020 – NTG is a partner with the University of Illinois at Chicago on a CDC funded 5-year health brain initiative grant project
2020 – NTG is incorporated as a not-for-profit organization under the laws of the State of Maine
2020 – NTG's Evaluation Committee issues a report on the learning gains for persons taking the NTG workshops on dementia and ID and acknowledges that value of ADKS-ID instrument in measuring learning gains
2020 – NTG, along with the UIC's Health Matters Program issues a report on a national survey of how COVID-19 has affected the nation's provider agencies
2020 – NTG holds its last Steering Committee meeting on September 24th
2020 – NTG holds is first major Board meeting as a not-for-profit corporation on October 21st
2020 – NTG Board member Dr. Rick Rader is appointed to the National Council on Disability
2020 – NTG collaborates with two GWEPS (at URI and VCU) to hold a 5 segment ECHO series on ID and dementia
2020 – NTG produces a resource bibliography on COVID-19 and intellectual disability

2021

2021 – NTG partners with US national Down syndrome organizations to issue the 'COVID-19 and Down Syndrome Resource'
2021 – NTG signs a memorandum of understanding for collaborative activities with the National Down Syndrome Society
2021 – NTG collaborates with two GWEPS (at URI and VCU) to hold a second 5 segment ECHO series on ID and dementia
2021 – NTG's NTG-EDSD is recognized for its utility enabling recognition of MCI in a professional journal
2021 – NTG is licensed and enabled to undertake charitable solicitations by the state of Maine
2021 – NTG is recognized and listed in the 'Where Can I Find Help?' section on NIH's Alzheimers.gov website
2021 – NTG completed its financial arrangement with the AADMD as a subsidiary for financial purposes
2021 – NTG completed a two-year development project of the SAFD, funded by the WITH Foundation
2021 – NTG issues, along with other organizations, a statement on the use of aducanumab by adults with Down syndrome
2021 – NTG receives IRS 501(c)(3) tax exempt status as of July 30, 2021
2021 – NTG is contracted by the University of Texas at Houston to provide trainings and state planning meetings in Texas
2021 – NTG holds first international webinar on dementia biomarkers and emerging Alzheimer's medications
2021 – NTG holds first annual meeting on October 21, 2021 - election of two new Board members
2021 – NTG completes a two-year arrangement with ACL ADPI grantee Catholic Charities Hawaii to provide technical assistance and trainings
2021 – NTG begins second year of a collaborative agreement with CDC's BOLD Act grantee at the University of Illinois at Chicago
2021 – NTG participates in collaborative of US Down syndrome organizations to issue updated guide on COVID-19 and vaccines
2021 – NTG begins a 5-year education and consultation project in conjunction with the University of Texas at Houston

2022

2022 – NTG partners with US national Down syndrome organizations to submit comments to CMS rejecting a proposed process to limit access to Alzheimer's medications by neurological conditions
2022 – NTG participates with Down syndrome organizations to issue final version of COVID-19 Advisory and Resources Guide
2022 – NTG issues a seminal report on 'Examining Adults with Neuroatypical Conditions for MCI/Dementia During Cognitive Impairment Assessments: Report of the Neuroatypical Conditions Expert Consultative Panel’ in conjunction with the Lumind IDSC Foundation
2022 – NTG and EASPD (Brussels, Belgium) jointly sponsor a webinar on the state of people with disabilities in the Ukraine as a result of the invasion by Russia
2022 – NTG joins with US Down Syndrome Coalition to issue a commentary on the CMS National Coverage Determination on Medicare Coverage Policy for Monoclonal Antibodies Directed Against Amyloid for the Treatment of Alzheimer’s Disease
2022 – NTG joins the Component B aspect of the CDC's Healthy Brain Initiative being undertaken at the University of Illinois Chicago to promote brain health in the intellectual disability community.
2022 – NTG begins participation in an ACL ADPI grant to Fox Valley Senior Resource Network in Appleton, Wisconsin
2022 – NTG submits nomination of Board member, Marianne Barbera, for the federal Advisory Council for the RAISE Act
2022 – NTG receives a contract from the University of Texas at Houston to provide training and technical assistance to a statewide grant project on aging and developmental disabilities funded by the Texas Developmental Disabilities Council

2023

2023 – NTG receives an additional contract from the University of Texas at Houston to provide training for law enforcement personnel as part of a statewide grant project on aging and developmental disabilities funded by the Texas Developmental Disabilities Council
2023 – NTG Board authorizes the creation of its first staff position and hires Ms. Kathryn Pears as its first Director of Operations
2023 – NTG continues work with the Component B project being undertaken at the University of Illinois Chicago to promote brain health in the intellectual disability community as part of the CDC's Healthy Brain Initiative
2023 – NTG issues advisory on over-medication and older adults with intellectual disabilities
2023 – NTG engages the services of a professional accountancy to manage its financial affairs
2023 – NTG issues advisory on supporting small dementia care group homes as part of the CMS "Settings Rule"
2023 – NTG partners with the LuMind IDSC Foundation to organize a working group of experts to arrive at a consensus statement on criteria and instrumentation for determining eligibility for access to prescriptive therapeutics for treating Alzheimer's disease as they become approved by the FDA for general use
2023 – NTG's Family Supports Group completed a national survey of how families best access information on dementia and intellectual disabilities.
2023 – NTG participates in the NDSS's annual Hill Education conference and efforts to educate Congressional staffers on issues related to Down syndrome.
2023 – NTG issues, together with the LuMind IDSC Foundation, an advisory ("Adapting Eligibility Criteria for Prescribing FDA Approved Anti-Amyloid Immunotherapeutics for Adults with Down Syndrome with Early-Stage Alzheimer’s Dementia") for adapting prescribing criteria for increasing eligibility for use of the FDA approved anti-amyloid therapeutics for treating early stage Alzheimer's disease.
2023 – NTG begins work on producing an ID-oriented companion to the Gerontological Society of America's KAERS dementia care manual ('Kickstart the conversation, Assess for cognitive impairment, Evaluate for dementia, Refer for community resources') to include adaptations for issues affecting aging people with intellectual disabilities.
2023 -- NTG files comments and recommendations to the National Institute on Aging related to its proposed new rating system for criteria for diagnosing Alzheimer's diease.
2023 - NTG's Family Support Group begins planning for holding a family-oriented family informational series of webinars in 2024, based upon the results of its national family needs survey.
2023 - NTG participates at the CDC sponsored workshop, 'Engaging Diverse and Inclusive Audiences with The Healthy Brain Initiative Road Map', held at the annual confernce of the Gerontological Society of America (Tampa, Florida)
2023 - NTG collaborates with the LuMind IDSC Foundation in forming a working group on identifying key elements associated with registering adults with Down syndrome on CMS' registry for access to anti-amyloid treatment medications.
2023 - NTG completes preliminary work on the Gerontological Society of America's companion on intellectual disability to its KAER dementia diagnosis and care manual.

2024

2024 - NTG and GSA completes the development of the intellectual disability companion to GSA's KAER dementia diagnosis and care manual
2024 - NTG Family Support Program holds the NTG's new Family Informational webinar series (which ran from February to April).
2024 - NTG participates on annual meeting of the DSAIA in Dallas, Texas
2024 - NTG and the Lumind IDSC Foundation complete a report on Alzheimer's disease medication prescriptive access equivalencies for use by drug formularies in the United States with people with Down syndrome
2024 - NTG and the Lumind IDSC Foundation publish key aspects of the Alzheimer disease medication report as a journal article in Alzheimer's & Dementia.
2024 - NTG participates in the 2024 conference of Alzheimer's Disease International in Krakow, Poland, with presentations of Alzheimer's disease treatment medication prescribing equivalencies and on the NTG's support group program.
2024 - NTG organizes a NTG aging/dementia and intellectual disability day program within the AADMD's annual conference held on June 7th in Chicago, Illinois
2024 - NTG receives a grant from Special Olympics to undertake an education and technical assistance project to increase participation by families of adults with intellectual disability and dementia in CMS's new GUIDE Model Innovation Initiative.

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