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Resources

Essential Resources for IDD Advocates

Your go-to guide for understanding rights, navigating care, and driving change for people with intellectual and developmental disabilities.

About the Guide

Explore dozens of essential tools, guides, and reports curated to support IDD advocates, self-advocates, and families. This collection makes it easy to find exactly what you need, whether you’re preparing for a healthcare visit, learning your rights, advocating for better services, or supporting inclusive programs. 

This guide was organized by IEC’s Research & Learning Committee of the IDD Advocate Corps.

Updated May 2025

A photo of two people smiling and looking at each other. The person on the right wears a green shirt and is standing. The person on the right has a beard and glasses and uses a wheelchair.

The IDD Advocate Corps is a diverse coalition that includes people with IDD, care partners/givers, clinicians, researchers, and other healthcare leaders.

Learn More

Click on the categories below to see resources and links.

The goal of this guide is to help advocates of people with IDD support themselves and others.

Resources that explain healthcare policy, disability rights, and systems in plain language.

  1. Policy Terms in Plain Language [PDF]
    • Association of University Centers on Disabilities (AUCD)
  2. Autistic Patient Bill of Rights
    • Boston Medical Center
  3. A Self-Advocates Guide to Medicaid
    • Autistic Self Advocacy Network (ASAN)
  4. Healthcare Coverage Options for People with Disabilities
    • HealthCare.gov
  5. Coverage to Care (C2C)
    • Centers for Medicare & Medicaid Services
  6. Protection and Advocacy for People with Disabilities
    • National Disability Rights Network
  7. Medical Decision Making Options for Adults with Developmental Disabilities [PDF]
    • Spectrum Institute
  8. Everyday Words for Public Health Communication
    • U.S. Centers for Disease Control and Prevention (CDC)

Tools that help self-advocates and their caregivers communicate needs and navigate appointments effectively.

  1. Hospital Passport: About Me and My Health Needs [PDF]
    • Ambitious about Autism
  2. Transitioning to Adult Health Care with Confidence
    • LifeCourse Nexus
  3. The Interact Tool [PDF]
    • Disability Equity Collaborative
  4. ASSIST: Autism Sensory Strategies, Information, and Toolkit
    • The Autism Services, Education, Resources, and Training Collaborative (ASERT)
  5. Visual Supports and Resources
    • Children’s National
  6. Understanding Accommodations: Disability Accommodations in Healthcare [Video]
    • Stanford EdTech
  7. Autism Friendly Social Stories
    • Boston Medical Center
  8. Family Matters Toolkit
    • Health Care Access Research and Developmental Disabilities
  9. Developmental Disabilities & Oral Health
    • National Institute of Dental and Craniofacial Research
  10. Healthcare Toolkit for Patients & Supporters
    • Academic Autistic Spectrum Partnership in Research and Education (AASPIRE)
  11. Healthcare Information in Plain Language
    • Inclusive Healthcare Partnership Project

Tools to help advocates drive policy change at local, state, and national levels.

  1. National Roadmap for Disability-Inclusive Healthcare
    • Institute for Exceptional Care
  2. Advocacy Training Curriculum
    • Art of Advocacy
  3. Helping people with disabilities lead amazing lives through supported decision making
    • National Resource Center for Supported Decision-Making
  4. Improving Health Care Access for Black and Spanish-speaking People with Down Syndrome [Video]
    • University of California
  5. Resource List for Patients and Researchers
    • National Institute of Child Health and Human Development
  6. Guidelines for effective writing
    • Centers for Medicare & Medicaid Services
  7. Advancing Health Policy and Outcomes for People With Intellectual or Developmental Disabilities A Community-Led Agenda
    • JAMA Health Forum

Resources that address sexual health, relationships, and reproductive care for people with IDD.

  1. Your Sexual Health Toolkit
    • Project SHINE
  2. Getting Sexual and Reproductive Healthcare [PDF]
    • Autistic Self Advocacy Network (ASAN)
  3. Real Talk: Improving Quality of Sexual Health Care for Patients with Disabilities
    • Autistic Self Advocacy Network (ASAN)
  4. Proud and Supported Series
    • Autistic Self Advocacy Network (ASAN)

Tools for event planners, educators, and community leaders.

  1. Fantastic Facilitation: Leading Effective, Inclusive Meetings [PDF]
    • Autistic Self Advocacy Network (ASAN)
  2. A Guide to Accessible Event Planning [PDF]
    • Autistic Self Advocacy Network (ASAN)
  3. Toolkit for Serving Learners with Disabilities
    • Alive & Well Communities

Effective advocacy is grounded in research. In this section, see reports that explore healthcare and population health for people with IDD.

  1. Intellectual and Developmental Disabilities 2022-23 In-Person Survey Data At a Glance [PDF]
    • National Core Indicators
  2. Perceived Disability-Based Discrimination in Health Care for Children with Medical Complexity
    • American Academy of Pediatrics (AAP)
  3. Emergency Department Use Among Adults with Autism Spectrum Disorders [PDF]
    • Journal of Autism and Developmental Disorders
  4. Barriers to Care for People with Co-Occurring Mental Health Disorders and IDD
    • Healthy Minds Policy Initiative
  5. Health Care for Youth with Neurodevelopmental Disabilities
    • American Academy of Pediatrics (AAP)
  6. Mental Health Care Needs and Access to Care for Adults with Intellectual Disabilities
    • American Public Health Association
  7. Bridging the Gap Between Physical Health and Autism Spectrum Disorder
    • Journal of Neuropsychiatric Disease and Treatment
  8. Structural ableism in public health and healthcare: a definition and conceptual framework
    • The Lancet
  9. Physicians’ Perceptions of People With Disability and Their Health Care
    • Health Affairs
  10. Considerations for Alternative Decision-Making When Transitioning to Adulthood
    • American Academy of Pediatrics (AAP)
  11. A Systematic Review of IDD Curriculum in International Pre-Graduate Health Professional Education [PDF]
    • BMC Medical Education
  12. Synthesis: International Perspectives on Healthcare for People with IDD
    • Journal of Policy and Practice in Intellectual Disabilities

National Goals Public Comment Period: Open through September 30, 2024

We value our community’s input. Please submit your comments, suggestions, or questions using the form below. All comments received by September 30, 2024, will be reviewed and considered. We will summarize and respond to common themes across the comments received.

COMING SOON: ESSENTIAL RESOURCES FOR HEALTHCARE PROVIDERS

IEC and the IDD Advocate Corps are organizing our list of essential resources for clinicians to improve care for people with IDD. Subscribe to our newsletter for updates.

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