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

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.”

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.

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