NTG MAG

An Advisory and Consensus Statement of the Working Group on Criteria for Access to Alzheimer’s Therapeutics for Adults with Down Syndrome; experts were convened to determine prescribing criteria equivalences that would be inclusionary of adults with Down syndrome. This advisory and consensus statement is the result of the experts’ deliberations and recommendations for addressing this inequity to treatment access and includes alternative inclusionary language and modified criteria, as well as providing a roadmap for prescribers when determining eligibility for adults with Down syndrome.

NTG issued statement on use of Aduhelm by persons with Down syndrome. This statement, the result of a collaborative effort coordinated by the NTG Aduhelm and Down Syndrome Medical Advisory Group, was led by Seth M. Keller, MD, Co-President of the National Task Group on Intellectual Disabilities and Dementia Practices.

Concerns over the impact of Long-COVID upon adults with intellectual disability and the omission of clear guidance on this issue as lead the NTG to prepare an "Advisory on Long-COVID and Impact on Cognitive Function in Adults with Intellectual Disability." The document is now available for download and use via this website. The Advisory contains the NTG's position on this condition and addresses the background and definition of the cognitive aspects of Long-COVID, its symptoms and effects, what to look for with respect to symptoms, and what agencies and others can do to help adults affected by Long-COVID. The Advisory covers these main points: (1) Long-COVID can include ‘brain fog’ (problems with thinking, motivation, and carrying out life activities); (2) Adults with intellectual disability infected with the SARS-COV-2 variant virus may experience Long-COVID, (3) Partners, families, and agencies need to be on the ‘look-out’ for changes in cognitive functions that may be due to Long-COVID; (4) Screening and assessment should be undertaken to determine presence of Long-COVID; (5) Accommodations and adaptations should be put in place to help mitigate effects of Long-COVID.

This NTG advisory addresses an issue that many community-based organizations may encounter when state officials must attest as to whether "heightened scrutiny" is needed to determine whether small dementia-capable group homes should be included in their HCBS waivers. The NTG contends that supporting specialized services for adults with intellectual disability living with dementia in group homes is in the spirit of both the Americans with Disabilities Act, as amended, and the Olmstead Decision, as it provides for safe housing in a least restrictive setting in the community, with specialized services that are appropriate to meet the needs of individuals with progressively diminishing cognitive and functional abilities. The NTG believes that recognition should be given to small dementia-capable group home settings as a proven best practice support model, which upholds the rights of adults with dementia to live in the community under HCBS waivers funded by the health and social service systems in each state. When properly funded, these settings can provide personalized care, promote well-being and safety from harm, give attention to changing nutritional and dietary needs, and engage residents in activities that mitigate memory loss and cognitive decline. The NTG also believes that recognition should be given to the advantages of small dementia-capable group homes when compared to the costs and outcomes of services that are provided in nursing facilities, because dementia-capable group homes are both less expensive on a per deim basis and more effective in enhancing the quality of life for individuals living with dementia.

This NTG statement, issued December 11, 2020, provides the rationale for placing adults with intellectual disability affected by Alzheimer’s disease and other causes for dementia on priority lists for receiving special consideration in mitigation strategies for managing the spread of COVID-19 and for receiving inoculation by vaccines designed to inhibit infections by the COVID-19 virus.

NTG Long-COVID statement applicable to direct support professionals.

This document, released on February 21, 2023, was issued jointly by the NTG and the Health Matters Program as part of an advisory series on risk reduction in adults with intellectual disability and promoting healthy brain outcomes. The advisory recognizes that in some instances overmedicating can have negative effects on physical and brain health, as well as potentially increase the risk for mild cognitive impairment or dementia. The intent of the advisory is that the information provided will lead to constructive scrutiny of medication use, avoid “medication harm’, and result in positive health outcomes.

A position paper on the need for accessible and available diagnostic resources across the United States for determining the presence of dementia in adults with intellectual disability and supporting the provision of post-diagnostic supports.

Congress passed explicit language as part of Older Americans Act reauthorization that persons experiencing younger-age onset of dementia are eligible for OAA services.