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, the President signed the National Alzheimer's Project Act (NAPA) which is expected to lead 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. This 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 the 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 NTGs 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 has 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 group 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 group has produced suggested guidelines for assessment and interventions with medical personnel are involved. The community supports group 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 has offered advice to the CARF organization, a certification body for programs serving people with developmental disabilities. The CARF has produced a new set of standards, “Older Adults and Older Adults/Dementia Care Specific Population Designations” that went into effect in July 2014. The standards are 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 former 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.
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. 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 and research projects.
See the NTG-EDSD page for the various versions of the NTG-EDSD and manuals.
Publications about the NTG
Viability of a Dementia Advocacy Effort for Adults with Intellectual Disability: Using a National Task Group Approach
The World Health Organization’s report, Dementia: A Public Health Priority, noted that the number of people worldwide affected by dementia is significant and will continue to increase. The report called on nations to address dementia by developing national plans and undertaking public health initiatives. Special mention was made of the situation of people with intellectual disability, some of who manifest high risk for dementias. In the United States, the National Task Group on Intellectual Disabilities and Dementia Practices (the “NTG”) was created to ensure that the needs and interests of adults with intellectual and developmental disability who are affected by Alzheimer’s disease and related dementias—as well as their families and friends—are taken into account as part of general-population dementia health and public policy efforts, particularly as noted in the U.S. National Plan to Address Alzheimer’s Disease. To this end, the NTG’s multifaceted advocacy efforts have included (1) identifying best practices for providing care and services to affected adults with intellectual disability; (2) developing and identifying a functional workable administrative dementia early detection and screening instrument; (3) producing educational materials useful to families, adults with intellectual disability, and nongovernmental organizations; and (4) furthering public policy initiatives on dementia as they affect adults with intellectual disability. This article describes the origins of this group, its functions and accomplishments, as well its role with respect to national dementia advocacy, as a prototype for other national efforts that can be used to promote the interests of adults with intellectual disability affected by dementia and improve the quality of their lives. Suggested are means for replication of such an effort in other national environments.
Why Do We Need National Guidelines for Adults with Intellectual Disability and Dementia?
Why is there a need for special guidelines for adults with intellectual disability (ID)? Individuals with ID are living longer including those persons wsyndrome, and the risk of manifesting Alzheimer’s disease and related dementias is increasing. Most families, community support organizations, and health care practitioners are not familiar with how age-related decline may typically manifest, including pathologic decline from underlying disease. A change or decline in function may be falsely blamed on the underlying ID (i.e., diagnostic overshadowing) and many adults with ID may go undiagnosed or msdiagnosed. These uncertainties and lack of awareness often can create a delay in recognition that dementia is present, and therefore, appropriate evaluation, treatment, and supports may not be provided. Furthermore, generally accepted measures and procedures for diagnosis often are not appropriate for adults with ID because of their variable functional and intellectual premorbid state. Guidelines offering standardized procedures for screening, assessment, and diagnosis would mitigate many problems associated with accurate ascertainment of the presence of dementia. Furthermore, guidelines for the care and support of adults with ID affected by dementia would go far to improve this growing personal, social, and health problem. Thus, we would argue that there is a medical and social benefit for a set of unified and comprehensive guidelines related to ID and dementia that transcend national interests and practices and provide consensus on internationally accepted practice—emanating from an international organization, such as the WHO or Alzheimer’s Disease International.
Meet The NTG Steering Committee
Matthew Janicki, PhD
Matthew P. Janicki, Ph.D. is the co-chair of the US National Task Group on Intellectual Disabilities and Dementia Practices, a research associate professor in the Department of Disability and Human Development at the University of Illinois at Chicago, and a member of the federal Advisory Council on Alzheimer’s Research, Care, and Services [under the US National Alzheimer’s Project Act].
Previously, he was the director for aging and special populations for the New York State Office for People with Developmental Disabilities, and a Joseph P. Kennedy, Jr. Foundation Public Policy Leadership Fellow working out of the National Institute on Aging and the United States Senate.
Seth Keller, MD
Seth M. Keller, MD, is the co-chair of the NTG, and a board-certified neurologist in private practice with Advocare Neurology of South Jersey, where he specializes in the evaluation and care of adults with intellectual and developmental disabilities with neurologic complications.
He is the Past President of the American Academy of Developmental Medicine and Dentistry (AADMD) and the Chair of the intellectual disability section of the American Academy of Neurology.
Kathleen Bishop, PhD
Education & Training Directorate Co-Chair
Kathleen M. Bishop, Ph.D. is the co-director of the NTG’s Training and Education Directorate and co-lead trainer for NTG workshops. She is a gerontologist with a specialty in aging with developmental disabilities.
She previously was an assistant director for staff development and training for the New York State Office for Persons with Developmental Disabilities, and the Director of the Program on Aging and Developmental Disabilities at the Strong Center of Developmental Disabilities, University of Rochester School of Medicine and Dentistry.
Kathryn Pears, MPPM
Education & Training Directorate Co-Chair
Kathryn Pears, MPPM, is co-director of he NTG's Training and Education Directorate and co-lead trainer for NTG workshops. She is Principal of Dementia Care Strategies which provides training and consulting services to aging and disability organizations on caring for adults with Alzheimer's disease or a related dementia.
Prior to forming Dementia Care Strategies she was Director of Programs and Policy for the Alzheimer's Association, Maine Chapter.
A former family caregiver for her father, diagnosed with Alzheimer''s disease at the age of 56 in 1981, she has a special passion for helping family caregivers.
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