• American Association of People with Disabilities
• Center for American Progress Disability Justice Initiative
• CSWE 
• Disability Identity
  Use the following notation when writing about a person with a disability/disabled person. Consider adding this notation to educate the public about the two ways of identifying disability and of course, better yet asking the person what their preference is.  Notation: * Identity-first language (“disabled person”) is preferred over person-first language (“person with a disability”) by many, but not all, disabled people. When referring to specific individuals, it’s best to ask what they prefer.
• Disability rights advocate Judy Heumann

• Disability Lead - Disability Lead increases civic engagement and diverse leadership in the Chicago region by developing and building a network of leaders with disabilities.

• Disability Rights Education & Defense Fund (DREDF)
• Dot Nary - “Disabled” vs “Special Needs”
• Going to the doctor - Tips for Self Advocacy https://vkc.vumc.org/assets/files/tipsheets/goingdrtips.pdf

• In a Different Key - film/book on Autism lived experience

• National Council on Disabilities NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of Presidential and Congressional appointees, an Executive Director appointed by the Chair, Andrés J. Gallegos and a full-time professional staff.​

  • Multiple Healthcare Policy resources can be found in the numerous official NCD chair written advocacy correspondences found under https://www.ncd.gov/policy/health-care​

  • “Findings and recommendations contained in the publications in this section come from analyses of applicable laws, regulations, policy guidance, barriers, promising practices, and health care models.

  • Publications focus on reform initiatives and consumer directed physical and mental health care. Publications consider a variety of stakeholder groups, including people on tribal lands and members of other diverse cultural groups, people in need of long-term services and supports, youth, and veterans.”

• National Council on Aging NCOA Adviser.
  Understanding Wandering Risks With Older Adults (ncoa.org)
• National Council on Independent Living

• Project DOCC - Delivery of Chronic Care is the pediatric residency training curriculum -Self-Advocates (IDD), family members, U Maine staff and medical providers are in our initial stages of learning what are the lessons people with disabilities want professionals to know, and what are the most effective ways to teach providers-in-training so that their future practice includes these lessons.

• Raw Beauty Project Health LEARN HOW WOMEN AND ARTISTS WITH DISABILITIES ARE CHANGING HEALTHCARE! Highlighted by the remarkable talent of artists with disabilities, we are showcasing powerful women with limited mobility who are unstoppable in their lives; however, do experience stops in accessing basic healthcare. Our vision is for all to be ABLE to obtain equal and accessible healthcare.
• Stanford Medicine Abilities Coalition
• The Institute for Exceptional Care the National Roadmap for Disability-Inclusive Healthcare
• The Spectrum Institute - The following resources will: (1) help adult patients with developmental disabilities assert their right to medical self-determination, (2) help families effectively advocate for their loved ones, and (3) help health care providers fulfill their ethical and legal obligations to this patient population.
  

  These materials were produced by Spectrum Institute for the Missouri Medical Rights Workgroup.https://alternativestoguardianship.com/medical-rights.htm Although most of these publications focus on Missouri, much of the information contained in them would be relevant to any state.  Please contact Thomas F. Coleman if you are interested in forming a Medical Rights Workgroup in your state.  Email: tomcoleman@spectruminstitute.org  

  Reports:
  Basics of Medical Decision Making:  Demographics, Ethics, Law, and Process
  https://alternativestoguardianship.com/consensus-basics.pdf

  Medical Decision-Making by Adults with Developmental Disabilities:  Guidance for Patients, Families, Providers, State Agencies and Professional Associations
  https://alternativestoguardianship.com/medical-guidance.pdf
  
  Medical Decision-Making Options for Adults with Developmental Disabilities:  A Summary of Legal and Medical References for Health Care Providers, Patients and Families
  https://spectruminstitute.org/medical-decisions.pdf

   Discrimination on the Basis of Disability by Federally Funded Health Care Providers: Excerpts from Proposed Rule 0945-AA15 of the U.S. Department of Health and Human Services with Commentary on Health Care Services for Adult Patients with Developmental Disabilities
  https://alternativestoguardianship.com/hhs-rule-report.pdf

   Commentaries

  Helen Magazine:  Medical Decision-Making Rights: What You (Patients, Families, Providers) Should Know (12 pages)
  https://alternativestoguardianship.com/helen-article.pdf

  Helen Magazine:  How Dentists are Prohibited from Disability Discrimination (5 pages)
  https://helenjournal.org/january-2024/xxvil80d4fswrjpqim1as5l8hdubhl

  Transitioning to Adulthood:  Medical Decision-Making Rights Should be Part of IEP and ISP Transition Planning (9 pages)
  https://alternativestoguardianship.com/iep-isp-transition-plan-medical.pdf

  Guidance

  Health Care and Developmental Disabilities:  A Message to Patients (5 pages)
  https://alternativestoguardianship.com/how-to-patients.pdf

  Health Care and Developmental Disabilities:  A Message to Families (4 pages)
  https://alternativestoguardianship.com/how-to-families.pdf

  Health Care and Developmental Disabilities:  A Message to Providers (8 pages)
  https://alternativestoguardianship.com/how-to-providers.pdf

  Health Care and Developmental Disabilities:  Tips for Providers (1 page)
  https://alternativestoguardianship.com/tips-for-providers.pdf

  Health Care and Developmental Disabilities: References for Patients, Families, and Providers (17 pages)
  https://alternativestoguardianship.com/how-to-references.pdf

  List of Sample Medical Authorization Forms with Links (1 page)
  https://alternativestoguardianship.com/sample-medical-authorization-forms.pdf

  Transitioning to Adulthood: Resources for Patients, Families, and Providers (7 pages)
  https://alternativestoguardianship.com/iep-isp-transition-plan-medical.pdf

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