Transforming Healthcare for People With Intellectual and Developmental Disabilities
People with intellectual and developmental disabilities (IDD) deserve healthcare that is accessible, respectful, and responsive to their needs. But many healthcare providers receive little or no training on how to provide inclusive care for people with IDD.
The Arc’s Transforming Healthcare Project brings together people with IDD, healthcare professionals, medical educators, researchers, and The Arc chapters to help change that. Together, we are exploring what good healthcare looks like when people with disabilities are treated as partners in their own care and when lived experience helps shape how healthcare providers are trained.
The project’s Transforming Healthcare Training Framework provides a practical foundation for including disability-inclusive healthcare education in medical training and other healthcare settings.
Why the Transforming Healthcare Project Matters
Many medical students graduate without receiving training on intellectual and developmental disabilities. This can leave healthcare providers unprepared to communicate effectively with patients with IDD, recognize their individual needs, or address assumptions and biases that can affect care.
Better healthcare starts with better preparation. Healthcare providers need opportunities to learn from people with IDD, build cultural humility, and understand that patients are the experts on their own lives and bodies.
The Transforming Healthcare Project was created to help fill this training gap. The project brings together professional expertise and lived experience to develop approaches that can be adapted to different medical education and healthcare settings.
“Just because I have a disability, that doesn’t mean you should treat me differently or less. I like that [the Transforming Healthcare Project] involves all different types of disabilities because we need to make sure that we get the best treatment that’s possible for us and the best healthcare.”
– Fran Hladysz, Transforming Healthcare Project Advisory Board Member
A Framework for More Inclusive Healthcare Training
The Transforming Healthcare Training Framework helps medical schools, healthcare systems, and other organizations strengthen training on healthcare for people with IDD.
The framework is designed to be adapted to different settings. It’s organized around six core themes that can help healthcare providers build more respectful, accessible, and inclusive relationships with patients with IDD. The Transforming Healthcare Training Framework helps medical schools, healthcare systems, and other organizations strengthen training on healthcare for people with IDD.
The framework is designed to be adapted to different settings. It’s organized around six core themes that can help healthcare providers build more respectful, accessible, and inclusive relationships with patients with IDD.
- Cultural Humility: Patients are the experts on their own lives, experiences, and bodies. Learning about each patient and their needs is an ongoing process.
- Lived Experience Leading the Way: People with IDD help shape healthcare education. They can co-teach, help set learning goals, and share what healthcare providers need to know.
- Communication Support for People With IDD: Healthcare providers can make communication easier by using plain language, checking that patients understand, and offering communication support when needed. Providers should talk directly to the patient, even when a support person is in the room.
- Recognizing Bias and Diagnostic Overshadowing: Providers should recognize when assumptions about disability may affect a patient’s diagnosis or care. Diagnostic overshadowing happens when a health concern is incorrectly attributed to a person’s disability instead of being looked at on its own.
- Supported Decision-Making and Accessible Consent: People with disabilities should have the support they need to make their own healthcare decisions. Providers can offer communication and decision-making support so patients can understand their options and give informed consent.
- Sexual Violence Awareness: People with IDD experience sexual violence more often than people without disabilities. Providers should know how to recognize possible signs, respond in supportive ways, and understand their responsibilities when someone reports sexual violence.
Who Is the Framework For?
The Transforming Healthcare Training Framework can be adapted for a range of healthcare education and training settings.
- Medical schools and medical education programs: Strengthen training on healthcare for people with IDD and incorporate lived experience into medical education.
- Healthcare systems and providers: Support teams in providing more accessible, respectful, and disability-inclusive care.
- Chapters of The Arc: Bring this resource to medical schools, healthcare providers, and healthcare systems in your community.
Organizations can use the approaches and tools that fit their setting, learn from implementation, and share feedback to help strengthen the work over time.
What the Framework Includes
The Transforming Healthcare Training Framework provides practical approaches and tools to support healthcare education and patient care.
A co-training model: Guidance for working with people with IDD as co-trainers, including accessibility planning, plain-language adaptation, accommodations, preparation, and support during training.
Practical healthcare tools: Resources such as communication boards, one-page patient profiles, plain-language guides for before and after healthcare visits, and sensory accommodation guides.
Accessibility from the start: An approach that builds plain language, multiple formats, and appropriate accommodations into training from the beginning.
Trauma-informed safeguards: Practices that support the safety and well-being of people participating in training about sexual violence, including survivors who help lead the work.
About the Transforming Healthcare Project
The Transforming Healthcare Project was led by The Arc of the United States in partnership with the World Institute on Disability. It was guided by a national advisory board of 12 people with IDD, healthcare professionals, disability researchers, and survivors of sexual violence.
People with IDD and others with professional and lived experience helped shape the project from beginning to end. The advisory board identified gaps in existing resources, shaped the framework’s content and principles, tested the materials, and helped ensure that the framework reflected its commitment to inclusion and lived experience.
Elements of the framework were implemented by chapters of The Arc that work with medical students and instructors in medical education settings. Their feedback helped strengthen the framework, making it adaptable to different training environments.
If you have questions about adapting the framework for your organization or want to learn more about implementation, contact Tori Glaude at Glaude@TheArc.org.
“I truly value being part of a team bringing the healthcare challenges and concerns of a community that has historically been overlooked by the medical profession to the forefront. I leave each meeting knowing people like me with disabilities feel listened to, some for the first time in their lives.”
– Taylor Woodard, Co-Facilitator of the Transforming Healthcare Project
Frequently Asked Questions About the Transforming Healthcare Project
What is the Transforming Healthcare Project?
The Transforming Healthcare Project is an initiative led by The Arc in partnership with the World Institute on Disability. It focuses on improving healthcare for people with IDD by centering their lived experience and strengthening healthcare education.
What is the Transforming Healthcare Training Framework?
The Transforming Healthcare Training Framework is a resource developed through the Transforming Healthcare Project to help medical schools, healthcare systems, and other organizations strengthen training on healthcare for people with IDD.
Who can use the framework?
The framework is designed for medical schools and medical education programs, healthcare systems and providers, and chapters of The Arc. It can be adapted to different training settings and needs.
How were people with IDD involved in developing the framework?
People with IDD served on the national advisory board. They helped develop the framework and participated in co-training. Their lived experience informed the project’s goals, content, tools, and approach to healthcare education.
The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.
