Expanding the Reach of Dementia Care: Integrating Adults with Intellectual Disabilities into the CMS GUIDE Model
By Matthew P. Janicki, Ph.D. and Helen Stepowany, MS
(National Task Group on Intellectual Disabilities and Dementia Practices - NTG)
The Centers for Medicare & Medicaid Services (CMS) has launched a bold new initiative to address the needs of people living with dementia and their caregivers, who are Medicare beneficiaries, through the Guiding an Improved Dementia Experience (GUIDE) Model. This eight-year demonstration project—part of the CMS Innovation Center’s effort to transform healthcare delivery—aims to provide coordinated, comprehensive dementia care services across the United States.
While the GUIDE Model is designed to reach a wide swath of the population living with dementia, a particularly vulnerable group has historically been underserved: adults with intellectual and developmental disabilities, many of whom are also Medicare beneficiaries. These individuals face a higher risk of developing dementia, including Alzheimer’s disease, at earlier ages than the general population. Adults with Down syndrome, for instance, have a significantly elevated risk of Alzheimer’s disease by midlife.
To ensure that the GUIDE Model is inclusive of adults with IDD and dementia, the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) has launched a national project to support GUIDE Participant Sites. Funded by a grant through the Special Olympics Inclusive Health Initiative—underwritten by the Golisano Foundation in collaboration with the Centers for Disease Control and Prevention—the NTG is working to provide tailored training, technical assistance, and educational resources to help GUIDE care navigators, clinicians, and program managers better serve this important population.
Under the CMS GUIDE Model, caregivers of Medicare beneficiaries with intellectual disability and dementia can access a range of supportive services designed to reduce burden and improve care coordination. These services include personalized care navigation, dementia-specific education and training, 24/7 access to a support line, and help with managing medical, behavioral, and social service needs. Caregivers may also receive respite services to allow for short-term relief from caregiving responsibilities, as well as assistance with long-term care planning.
A Focus on Equity and Inclusion
The NTG’s work within the GUIDE initiative responds directly to longstanding health disparities. Adults with intellectual disabilities often face diagnostic overshadowing, fragmented care, and systemic barriers that prevent timely diagnosis and appropriate dementia support. 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.
Throughout the project year, the NTG is actively developing and disseminating practical resources for GUIDE sites. These include:
Educational Modules for care navigators and practitioners, focused on the clinical nuances of dementia in people with IDD, including early screening, differential diagnosis, communication challenges, and aiding caregivers.
Technical Assistance Materials that help GUIDE sites understand the lived experiences of families supporting adults with ID, including guidance on caregiving histories, life course perspectives, and long-term supports.
Webinars and Events tailored for GUIDE teams, such as the May 2025 webinar on aligning families to the GUIDE framework, and the June 2025 session focused on diagnostic and medical care protocols for individuals with IDD and dementia.
The NTG also draws on and contributes to the Gerontological Society of America’s KAER model—an evidence-informed framework designed to help primary care teams better identify and support people with cognitive impairment. The NTG played a key role in developing the KAER Intellectual Disability Companion, which expands the model with IDD-specific content and practices.
“The GUIDE Model offers an unprecedented opportunity to reshape how dementia care is delivered in the United States. The NTG’s involvement ensures that adults with intellectual disabilities—who have too often been overlooked in dementia care planning—are represented, respected, and supported throughout their dementia journey.”
Bridging Systems, Building Capacity
Integrating adults with IDD into the GUIDE Model requires cross-system collaboration. Many of these individuals are supported not only by Medicare but also by Medicaid-funded home and community-based services (HCBS), state developmental disabilities agencies, and family caregivers. The NTG’s work bridges these systems, helping GUIDE sites to coordinate care, link with IDD service providers, and build sustainable partnerships that address both health and social needs.
To support GUIDE site readiness, the NTG has created training packs using an Internet-based learning management system program covering three foundational areas of knowledge:
Understanding IDD – providing a foundation in intellectual and developmental disabilities, life course trajectories, and health disparities.
Caregiving in the IDD Context – exploring unique caregiving structures, including family and supported living arrangements.
Connecting with Partners – guidance on identifying and engaging community-based IDD services, advocacy organizations, and state agencies.
Looking to the Future
The NTG’s engagement with the GUIDE Model is just beginning. Over the five years, the NTG will continue to expand its work by providing ongoing professional development for medical and social care providers, deepening relationships with state-level dementia and IDD systems, and offering policy guidance that advances inclusive dementia care. The NTG will also explore opportunities to support care model innovation, such as peer navigation programs, care planning tools for adults with IDD, and culturally competent dementia education.
Importantly, this work aligns with the broader goals of the Special Olympics Inclusive Health Initiative: to increase the inclusion of people with IDD in healthcare, health promotion, and disease prevention systems. By centering the needs of people with IDD within the CMS GUIDE Model, the NTG is helping to reimagine what inclusive dementia care can look like.
A Shared Commitment
The GUIDE Model offers an unprecedented opportunity to reshape how dementia care is delivered in the United States. The NTG’s involvement ensures that adults with intellectual disabilities—who have too often been overlooked in dementia care planning—are represented, respected, and supported throughout their dementia journey.
As GUIDE sites roll out across the country, this work serves as a model for inclusive health care transformation—one that recognizes the value of every individual and ensures that no one is left behind.
For more information about the NTG’s work with the GUIDE Model, visit https://www.the-ntg.org/changingthinking. To learn more about the Special Olympics Inclusive Health Initiative, visit https://www.specialolympics.org/what-we-do/inclusive-health.
About the Authors
Dr. Matthew P. Janicki is an Associate Research Professor at the Institute for Disability and Human Development at the University of Illinois Chicago and Co-President of the National Task Group on Intellectual Disabilities and Dementia Practices.
Ms. Helen Stepowany, MS, is the Project Manager for the NTG’s Changing Thinking! Project, which covers the NTG’s GUIDE technical assistance effort.