San Mateo, CA, June 14th, 2024 – The WITH Foundation is awarding more than $3.1M across fourteen different organizations. Of the fourteen organizations, ten were applicants through the November 2023 Open Cycle and four are strategic partnerships of the WITH Foundation. These strategic partnerships are the first round of larger investments into some of the foundation’s existing partners and grantees. Additional strategic partnerships will be announced alongside the funding decisions in future cycles. All 14 grants will fund programs that support healthcare equity for adults with intellectual and developmental disabilities in the United States.
“WITH Foundation is excited to increase our investment in comprehensive healthcare for adults with intellectual and developmental disabilities through a larger Open Cycle grantee pool and supporting strategic partnerships. “In doing so, we are proud to support the work of these grantees and partners as their work fosters healthcare equity for adults with I/DD,” said Ryan Easterly, Executive Director of the WITH Foundation.
Open Cycle Grantees
The following ten organizations will receive funding as Open Cycle grantees:
Alzheimer’s Association Florida, Clearwater, FL
The Alzheimer’s Association is enhancing the capabilities of healthcare professionals in Florida with the project Bridging the Gaps: I/DD and Alzheimer’s. Through education and collaboration, the project aims to build a robust support network for adults with I/DD, improve diagnosis and support services for individuals with I/DD and dementia, and enhance patient care and quality of life.
American Association on Intellectual and Developmental Disabilities, Silver Spring, MD
The American Association on Intellectual and Developmental Disabilities (AAIDD) will convene a 1-day working meeting, National Goals in Health Access, Equity, and Outcomes, for approximately 125 invited established and emerging leaders in research, practice, training, and policy to review current knowledge; discuss possible approaches to reduce health outcome disparities for people with intellectual and developmental disabilities; and generate a list of research, practice, training, and policy goals that, if implemented nationally, would reduce health disparities and enhance quality of life for people with I/DD. The recommendations will be shared through issue briefs and journal articles and in book form.
Community Options, Inc., Princeton, NJ
Community Options, Inc. will develop Virtual Reality (VR) Training for Healthcare Professionals that prepares healthcare professionals to treat people with intellectual and developmental disabilities, especially those in crisis. Recognizing that VR is becoming a frequently used training tool in the medical field, we want to ensure that the unique perspectives and needs of people with I/DD are included. Training will aim to increase empathy, improve awareness of the unique experiences that people with I/DD have when they access medical or psychiatric care, and impart knowledge of crisis de-escalation and behavior support strategies that are trauma informed and population specific.
Kennedy Krieger Institute, Baltimore, MD
The Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute is expanding Project Health, Education, Advocacy, and Law (HEAL), a community-based program which provides advocacy and civil legal services to patients with intellectual and developmental disabilities and their families. The expansion supports legal services to adult guardianship (in limited cases), less restrictive alternatives to adult guardianship, and Supplemental Security Income and Social Security Disability Insurance matters. It will also add formal care coordination services to its offerings.
NewYork-Presbyterian, New York, NY
The Positive Behavior Support Program of NewYork-Presbyterian (NYP) Center for Autism and the Developing Brain (CADB) is Training Hospital Clinicians to Optimize Inpatient Care of Adults with Developmental Disorders.The Positive Behavior Support Program is a consultation service supporting adults with neurodevelopmental disorders (NDDs) during psychiatric hospitalization at NYP Westchester Behavioral Health (WBH). For the project, the team will develop multidisciplinary trainings for inpatient psychiatric hospital staff to become more adept at working with this patient population. Target staff include physicians, nurses, direct care workers, social workers, mental health trainees, and security officers.
Rutgers University Foundation, New Brunswick, NJ
Rutgers University’s Project ECHO (Extension for Community Healthcare Outcomes) addresses the unique and complex care needs, including physiological and mental health challenges, of aging adults with intellectual and developmental disabilities. In a new phase of the project, Project ECHO will incorporate a simulation-based model approach, enabling healthcare providers to participate in live role-playing scenarios to expand their skills to perform culturally appropriate assessments utilizing communication strategies that are supportive of individual cognitive and physical levels of function.
The Council on Quality and Leadership, Towson, MD
Examining the Intersection Between Ableism and Racism in Healthcare is a research-focused project from The Council on Quality and Leadership that will develop the Intersecting Disability and Race Attitudes Implicit Association Test (IDRA-IAT). The project will then use the IDRA-IAT to examine the intersecting implicit attitudes of healthcare professionals who work with people with intellectual and developmental disabilities and factors associated with improved attitudes. This will measure the unique ways ableism and racism intersect and impact the healthcare of people with intellectual and developmental disabilities. The research findings will be used to create educational and resource materials to help improve the attitudes of healthcare professionals that work with people with I/DD, and, by extension, improve healthcare delivery.
Oregon Health & Science University Foundation, Portland, OR
The University Center for Excellence in Developmental Disabilities (UCEDD) at Oregon Health & Science University (OHSU), in partnership with the Oregon Office on Disability and Health (OODH), will develop Time to Act: A Training Program to Address Critical Gaps in Mental Health Care for People with Intellectual and Developmental Disabilities. These continuing education courses for mental and behavioral health providers will advance the goal of improving their knowledge, skills, and confidence providing assessment, treatment, and service delivery to patients with intellectual and developmental disabilities. In partnership with self-advocates, care givers, and providers, the UCEDD and OODH will adapt existing training models to incorporate principles of disability justice and address the critical need for improvement in mental health care for people with I/DD.
University of Kentucky Human Development Institute, Lexington, KY
The Graphic Medicine Resource Lab from the University of Kentucky Human Development Institute will improve access to healthcare for people with developmental disabilities through the use of graphic medicine. People with developmental disabilities will work collaboratively with creatives and healthcare clinicians to create materials that communicate both the patient and the provider sides of the healthcare experience. People with developmental disabilities will develop the concept for each set of materials by drawing on their lived experiences, and creatives and clinicians will bring the concepts to fruition by using their own areas of expertise.
University of Minnesota – Institute on Community Integration, Minneapolis, MN
Best Practices for Health Communication for Adults with Intellectual Disabilities from the University of Minnesota’s Institute on Community Integration aims to identify best practices in providing health-related communication that supports the ability of adults with intellectual disabilities to gain knowledge about their chronic conditions, such as diabetes or high blood pressure, and learn skills to increase their ability to manage these conditions. The project’s activities include a scoping review of the literature related to knowledge translation, providing cognitive support, and improving health literacy. Guidelines for effective health communication will be developed and pilot-tested with adults with intellectual disabilities to determine effectiveness.
Strategic Partnerships
The following four organizations will receive funding as a Strategic Partner:
Association of University Centers on Disabilities, Silver Spring, MD
The Association of University Centers on Disabilities’ Project PECAN (People with Disabilities, Providers, and Providers Expanding Inclusive Healthcare Curricula Changes Across the Nation) will build upon and expand a framework of inclusive education, co-created by people with disabilities, as well as providers, to transform allied health and biomedical curricula that can be deployed at-scale to transform the extant learning ecosystem across the United States. The pecan tree represents adaptability, resilience, and sustainability–traits that exemplify Project PECAN.
University of New Hampshire Institute on Disability, Durham, NH
The Institute on Disability at the University of New Hampshire aims to develop and implement a strategic partnership between the I/DD-MH (Intellectual and Developmental Disability – Mental Health) research team and the New Hampshire Leadership Series team to create Inclusive Approaches to Effective Healthcare and Mental Healthcare for Adults with Intellectual and Developmental Disabilities. The project will expand national capacity and dissemination of health and mental healthcare information for adults with intellectual and developmental disabilities and treatment providers. Adults with lived experiences of intellectual disabilities will play an active role in the development, evaluation, and dissemination of all resources.
National Disability Rights Network, Washington, D.C.
The National Disability Rights Network, in collaboration with the Protection and Agency Network, is launching a new innovative initiative titled Empowering Access: Supported Decision-Making for Medicaid Recipients. The initiative will disseminate information to people with intellectual and developmental disabilities, healthcare stakeholders, legal advocates, and peer supporters to address recent Medicaid disenrollments and eligibility. Using the supported decision-making framework, Empowering Access will assist those who recently lost or are at risk of losing Medicaid coverage.
Virginia Commonwealth University Foundation, Richmond, VA
Combining Research, Engagement, and Art to Enhance – Communication and Health Equity (CREATE-CHA), a program from the Virginia Commonwealth University Partnership for People with Disabilities (PPD), will utilize theater, problem-solving, and self-determination to help people with intellectual and developmental disabilities gain control over their healthcare experiences. In doing so, the program will support people with I/DD in becoming stronger communicators and advocates in healthcare environments. CREATE-CHA will also implement a mentorship model that allows people with I/DD to directly train and collaborate with medical students, addressing professional healthcare bias and discomfort.
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WITH Foundation (WITH) promotes comprehensive healthcare for adults with developmental disabilities in the United States that is designed to address their unique and fundamental needs.
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Press Contact: Sofia Webster
Director of Communications, WITH