Upcoming Events
6/23/25 12:00-1:15pm EDT
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
24-1 Beneficiary Criteria & Tools
25-2 GUIDE and Post-Dx Supports
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 initiative targets GUIDE program care navigators, practitioners, and managers, offering culturally responsive educational materials, training, and protocols to address barriers to care disproportionately experienced by adults with ID from marginalized communities. By incorporating intersectionality into our approach, the NTG is engaging with multiple systems effectively to ensure no group is overlooked.
During 2024-25, as the GUIDE Participant Sites are starting up, the NTG has been developing and producing technical materials and training modules with content specifically on ID and dementia. The NTG has been doing this by focusing on enhancing stakeholder understanding of variations in caregiving histories and functionality of families with adults with ID, screening and diagnostic considerations for adults with ID and dementia, and by tapping partner resources within the greater dementia support community. The Project has also organized two webinars, one on alignment of families to GUIDE (May 19, 2025) and one of medical diagnostic issues for GUIDE Personnel (June 23, 2025). During the project period, 2025-26, the NTG is expanding its training offerings and will be aiding with technical assistance in several key areas of the United States for GUIDE Participants.
To increase agency capabilities for caring for adults with ID, the NTG is providing technical assistance to GUIDE practitioners, program, and administrative personnel and is expanding its availability of learning management system training packs on three critical areas of knowledge for GUIDE Care Navigators, Practitioners, and Participant key personnel, targeting increasing knowledge of intellectual and developmental disabilities, scope of caregiving in an ID context, and connecting with service partners providing a range of ID focused services and supports. Conceptually, the framework of the Gerontological Society of America’s (GSA) KAER intellectual disability ‘companion’ adapted model is used for content training. The NTG was one of the key contributors to the KAER Companion through sharing NTG’s intellectual property and contributing to the development of the KAER Companion. The KAER Companion’s ID-specific content parallels much of the care and diagnostic models developed by the NTG.
In subsequent years, as this Initiative has a five-year horizon, the NTG will offer ongoing training and technical assistance, as well as provide educational sessions for medical personnel, and support GUIDE linkage efforts in two states, enable stronger health advocacy, and continue to support activities that help GUIDE Participant sites to address physical, and social, and- emotional well-being of adults with ID and dementia.
The NTG's new one-hour e-learning module for Navigators on ID and dementia will be available in mid summer '25, after field testing. FMI on the e-learning module contact the 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
Please Note: The Change Thinking! Project is an external initiative and is not a CMS endorsed or affiliated activity.
6/1/25