Notes of Substance
HELEN Magazine highlights the NTG's involvement in the CMS GUIDE program
"The NTG’s work within the GUIDE initiative responds directly to longstanding health disparities. These challenges are especially acute for individuals from marginalized communities. The NTG is addressing these inequities by promoting culturally responsive practices and applying an intersectional lens to its training and support."
Upcoming Events
6/23/25 12:00-1:15pm EDT - Thank you for joining us!
Diagnosing Dementia in Adults with Intellectual and Developmental Disabilities: A Case-Based Approach - Free Webinar for Health Care Providers
An educational webinar for physicians, nurse practitioners, and GUIDE health care professionals addressing the assessment of dementia in adults with intellectual and/or developmental disabilities. The webinar will discuss best practices in dementia assessment, diagnosis, and care planning for individuals with intellectual and other neurodevelopmental disabilities who show evidence of cognitive decline.
5/19/25 7:00pm EDT - Thank you for joining us!
Families Linking to GUIDE to Receive Supports for Adults with Intellectual Disability and Dementia
Free Webinar for Family Caregivers on linking to GUIDE
GUIDE is a new program that can offer support to families caring for a Medicare/Medicaid beneficiary with an intellectual disability and dementia.
Project GUIDE Advisories
NTG Advisory on GUIDE and Intellectual Disability
NTG / Special Olympics Inclusive Health Initiative Grant Project
The NTG has been awarded a grant by the Special Olympics organization for its project,"Changing Thinking! A National Initiative to Enhance Access to Critical Health Care and Supports for Adults with Intellectual and Developmental Disabilities and Dementia," for the period September 2024 through July 2026.
Project Personnel
Project Manager - Helen E. Stepowany
Ms. Stepowany has worked for more than 40 years in the field of health and disability services. She served in executive leadership roles for several highly regarded New York State non-profit organizations including Finger Lakes CP, Inc., Upstate Cerebral Palsy, Inc., the Kelberman Center for Autism, and the Kennedy Willis Center at Pathfinder Village. Ms. Stepowany manages the functions and deliverables for the Project.
Project Associate - Natalie S. Rozas, Ph.D.
Dr. Rozas, an expert in behavioral neuroscience and contributor to significant work on oral health and movement disorders, is aiding the Changing Thinking! Project with its evaluation and providing other support functions.
Administrative and Fiscal - Kathyrn Pears
Ms. Pears, the NTG's Chief Operations Officer, provides grant administrative and fiscal support.
Project Principal - Matthew P. Janicki, Ph.D.
Dr. Janicki, co-President of the NTG Board of Directors, oversees the Changing Thinking! Project.
The NTG’s Changing Thinking! Project—a national initiative funded by Special Olympics—is dedicated to expanding access to high-quality dementia care for adults with intellectual and developmental disabilities who are Medicare-beneficiaries through the CMS GUIDE Model. By providing targeted education, resources, and technical assistance to GUIDE participants, care navigators, practitioners, and caregivers, this grant-supported effort aims to promote the meaningful inclusion of individuals with intellectual and developmental disabilities and dementia in GUIDE services nationwide.
Project Summary
The Centers for Medicare & Medicaid Services (CMS) is undertaking a new innovation in providing health care and supports for adults and their caregivers affected by dementia as part of its Guiding and Improved Dementia Experience (GUIDE) Model. This innovative eight-year project holds great promise for addressing health disparities among older adults and presents an opportunity to improve health outcomes for adults with intellectual disabilities (ID) and dementia. To aid with integrating adults with ID and their caregivers into the GUIDE Model participant network, the NTG's project supplements the GUIDE work by providing tailored training, education, information, and technical assistance media to enhance the reach and capacity of GUIDE Model sites to provide high-quality care to adults with ID and their caregivers.
The NTG (National Task Group on Intellectual Disabilities and Dementia Practices) is supporting the Centers for Medicare & Medicaid Services’ GUIDE Model by equipping care navigators, practitioners, and managers with culturally responsive training, protocols, and materials. This initiative emphasizes inclusion of adults with intellectual disability (ID)—particularly those from marginalized communities—by applying an intersectional lens to dementia care and coordination.
2024–2025 Activities
As GUIDE Participant Sites launched, the NTG developed specialized training and technical materials focused on ID and dementia. Key areas included:
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Understanding caregiving histories and family dynamics in the ID community
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Diagnostic and screening considerations for adults with ID and dementia
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Leveraging resources from across the broader dementia care network
The NTG hosted two national webinars:
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Aligning Families to GUIDE (May 19)
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Medical Diagnostic Issues for GUIDE Personnel (June 23)
2025–2026 Expansion
As all Participant sites are functional as of July 1, 2025, the NTG expanded its technical assistance and training across select regions in the U.S. This includes new training content delivered through its learning management system, covering:
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Intellectual and developmental disability basics
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Caregiving in the ID context
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Building partnerships with ID-focused service providers
These trainings are grounded in the Gerontological Society of America’s KAER ID Companion framework, to which NTG contributed significantly. This model aligns closely with NTG’s established dementia care and diagnostic approaches.
Looking Ahead
Over the five-year project period, NTG will continue offering targeted training, technical support, and educational programming for healthcare providers. The initiative also aims to strengthen health advocacy, support GUIDE site partnerships in various states, and promote the overall well-being—physical, social, and emotional—of adults with ID and dementia. This will involve working toward the full alignment and integration of beneficiaries with ID and dementia within all salient aspects of the GUIDE program.
Our new one-hour e-learning module for GUIDE Navigators on ID and dementia will be released in mid-summer 2025 following field testing. For more information, contact our Project's Manager.
Our work is supported in part by the Special Olympics Systems Change for Inclusive Health Subgrant, funded by the Centers for Disease Control and Prevention. The contents of this project are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.
FMI: Matthew Janicki, Project Principal
Helen Stepowany, Project Manager
Kathryn Pears, NTG COO
Resources
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CMS Blog on GUIDE - 7/8/24 --> GUIDE Model blog
Check out the NTG's various GUIDE advisories ... found at the upper part of this page
Please Note: The Change Thinking! Project is an external initiative and is not a CMS endorsed or affiliated activity.
6/1/25