Collaborations NTG

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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 June 2025.

Project Summary

The NTG initiative will target 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 aims to engage with multiple systems effectively to ensure no group is overlooked.

During 2024-25, as the GUIDE Participant Sites are starting up, the NTG will develop and produce technical materials and training modules with content specifically on ID. The NTG will do 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.

To increase agency capabilities for caring for adults with ID, the NTG will provide technical assistance to GUIDE practitioners, program, and administrative personnel and will develop training packs on three critical areas of knowledge for GUIDE Care Navigators, Practitioners, and Participant key personnel, targeting increasing knowledge of the scope of caregiving in an ID context, screening and diagnostics for dementia, and connecting with 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 will be 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 participate in activities that help GUIDE Participant sites to address physical, and social, and- emotional well-being of adults with ID and dementia.

The NTG's work is aligned with the focus of Special Olympics, Inc. as part of its Inclusive Health Initiative underwritten by the Golisano Foundation in collaboration with the Centers for Disease Control and Prevention and designed to address the physical, social, and emotional well-being of people with ID by increasing their inclusion in healthcare, health promotion, and disease prevention systems.

More information is being posted as it becomes available.

Press release

FMI: Matthew Janicki, Project Principal

Helen Stepowany, Project Manager

Kathryn Pears, COO

Resources

CMS Blog on GUIDE - 7/8/24 --> GUIDE Model blog

GUIDE Model Frequently Asked Questions

List of GUIDE Participants by Track1/2

Map of GUIDE Participant Location

Update from CMS on Participants - Powerpoints

Overview of GUIDE and Autism

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 will supplement 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.

NTG Advisory on GUIDE and Intellectual Disability

Please Note: The Change Thinking! Project is an external initiative and is not a CMS endorsed or affiliated activity.

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.