Teaching and learning Resources

NeuroAffirming Practice

Neuroaffirming practice (also known as neurodiversity-affirming practice) has been gaining momentum in recent years in healthcare in terms of working with neurodivergent individuals. It's the idea that individuals have differences in their abilities and how they interact with the world around them – differences which are not considered to be deficits that need to be “fixed”. Rather, those who view individuals in this light consider neurodiversity to be natural. In this talk, Bryden and Katherine will share ideas and examples on how neurodiversity-affirming practice can work. https://www.ted.com/talks/bryden_carlson_giving_katherine_mcginley_neuroaffirming_practice

ADHCE Core Competencies on Disability for Health Care Education

The Accreditation Council on Graduate Medical Education was urged to adopt the:
ADHCE Core Competencies on Disability for Health Care Education 

On July 14, 2021, The National Council on Disabilities wrote a letter to Accreditation Council on Graduate Medical Education (ACGME), urging "ACGME to require all of its accredited residency and fellowship programs adopt and implement disability cultural competency training to ensure that physicians are prepared to meet the health needs of people with disabilities. ACGME recommend that training incorporate the Core Competencies on Disability for Health Care Education drafted by the Alliance for Disability in Health Care Education. AGCME stated the core competencies present standards on social, environmental, and physical aspects of disability to inform future health professionals on how to provide effective, interprofessional team-based health care. Moreover, it is imperative that people with disabilities are involved in the development of that training."

• The Ohio State University Nisonger Center & Alliance for Disability Health Care Education utilized the Delphi Method to gain consensus from a broad, diverse and inclusive group to create the Core Competencies on Disabilities Standards to guide education on disabilities.
  
  
• American Inter-professional Health Collaborative.
  
  
• The CMS Data Element Library (DEL) is the centralized resource for CMS assessment instrument, data elements (assessment items) that measure patient ability status and level of need for assistance to complete activities.
  
  

• Nationally Implemented  Assessment Instruments by Centers for Medicare & Medicaid Services (CMS)
  

  https://del.cms.gov/DELWeb/pubSearch
  
  To search for rehabilitation setting items used nationally you need to “check” which healthcare setting you want displayed and further filtering possible by selecting a section within a chosen assessment (e.g. Functional Status Section GG) this will display other detailed choices from which to sort these assessment items
  
  
  
  

• The Center for Dignity in Healthcare for People with Disabilities  TOOLKIT (funded by the Administration for Community Living) is an interdisciplinary coalition of stakeholders, including medical providers, researchers, ethicists, individuals with disabilities, and their family members. The Center’s goal is to identify and reduce life-limiting healthcare inequities faced by people with intellectual and developmental (ID/DD) disabilities.
  
  
• Communication Disabilities Access Canada -Accessibility Includes Communication
  
  
• Communication-friendly Health Care Strategies- Six helpful strategies you can use in your day-to-day conversations in this five-minute Communication Access video. (Alberta Health Services – Canadian Organization)
  
  
• Council on Disability and Persons With Disabilities
  
  
• CSWE  provides a model of how to build a Disability Curriculum that can be used in part for all healthcare professions. This model uses its profession's core competencies to indicate each Disability Resource fulfills each of the competencies. Many of the resources would benfits many healthcare professional's education in disability and healthcare. Curriculum resources for SW Edu that is organized by SW Core Competencies - CSWE Disability Educational Resource Database
  
  
• Disability Equity Collaborative  (DEC) “supports individuals,  healthcare organizations, policy makers, advocates, researchers, and professional organizations working to address the health disparities experienced by patients with all types of disabilities.”
  
  EHR Documentation of Disability Status Guidelines - Resource
  
  
• Georgetown University Medical Center, Department of Family Medicine; Community-Based Learning in Medicine  During the Pandemic
  
  
• Georgetown University  University Centers for Excellence in Developmental
  Disabilities, Education, Research and Service (UCEDD).​​
  
  

• LEND (Leadership Education in Neurodevelopmental and Related DIsabilities
  

  Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs provide long-term, graduate level interdisciplinary training as well as interdisciplinary services and care. The purpose of the LEND training program is to improve the health of infants, children, and adolescents with disabilities. They accomplish this by preparing trainees from diverse professional disciplines to assume leadership roles in their respective fields and by ensuring high levels of interdisciplinary clinical competence. LEND programs operate within a university system, usually as part of a University Center for Excellence (UCEDD) or other larger entity, and collaborate with local university hospitals and/or health care centers. This set-up gives them the expert faculty, facilities, and other resources necessary to provide exceptional interdisciplinary training and services.
  
  

• Comprehensive and Practical Guide for Seniors with Disabilities: https://www.caring.com/senior-living/assisted-living/assisted-living-for-seniors-with-disabilities/
• MEDICARE ELIGIBILITY FOR PEOPLE WITH DISABILITIES
  Compare your Medicare options as a person with a disability.
  Disability healthcare resources and information
  
  
• Moving Healthcare Upstream
  Navigating the Health Care System "is a four-unit health literacy curriculum designed by Nemours Children’s Health for use with young adults. It is designed to prepare high school and college-age teens to be responsible for managing their own health care as they transition into adulthood. Materials are suitable for in-class, in-home, after-school, and community settings, and can be taught virtually.”
  
  
• National Center for Interprofessional Practice and Education
  Myth Busting Health Professions and Interprofessional Education at the Crossroads

  Barbara Fifield Brandt, Founding Director

• Ohio State University Center Tool Kit Core Competencies Disability Health Care Education Toolkit (Nisonger Center)
  
  
• Patient Provider Communication Organization Website - includes Toolkits
  “The Patient Provider Communication Network is a national and international effort to promote information sharing, cooperation and collaboration among individuals who are committed to seeking improvements in patient-provider communication across the entire health care continuum--from a doctor's office, emergency room, clinic, ICU, acute care and rehabilitation hospital, home health service and hospice. We also address preparing individuals with communication challenges for future medical encounters. Patient Communication Access”
  
  
• Patient Provider Communication Organization Research and Presentations - Resources & Toolkits

• The Center for Dignity in Healthcare for People with Disabilities  (funded by the ACL Administration for Community Living) is an interdisciplinary coalition of stakeholders, including medical providers, researchers, ethicists, individuals with disabilities, and their family members. The Center’s goal is to identify and reduce life-limiting healthcare inequities faced by people with intellectual and developmental (ID/DD) disabilities.
  
  
• An Integrated Model for Disability Competent Care (RIC): Toolkit for providing disability competent care for eligible Medicare/Medicaid patients
  
  
• MEDICARE ELIGIBILITY FOR PEOPLE WITH DISABILITIES
  Compare your Medicare options as a person with a disability.
  Disability healthcare resources and information
  
  

• The Rehabilitation Measures Database (RMD)
  ASSESSMENTS - A go-to resource for benchmarks and outcomes, with more than 500 measures supported by some of the world's best doctors, clinicians, therapists, and physical medicine and rehabilitation researchers
  
  

• University of North Carolina site includes numerous links to US and International resources for IPE, interdisciplinary studies, interprofessional care and collaboration. https://guides.lib.unc.edu/interprofessional/organizations

(NEW resource with much more to come!)

• Amanda Krupa, MSc Director of Communications & Marketing AHIMA Foundation Joined Medan Morris PhD, Kori Eberle and Jill B. Roark, MPH presenters Addressing Unequal Access to Digital Healthcare for People with Disabilities
  
  “Addressing Unequal Access to Digital Healthcare for People with Disabilities”
  (Our Frontiers Health Global Conference presentation Oct. 21, 2022 )

Peppar Cyr's presentation/discussion at the NCMRR conference on Ableism in Medicine & Clinical Research are here! Day 1: https://videocast.nih.gov/watch=49317 Day 2 (includes Peppar Cyr's presentation/discussion): https://videocast.nih.gov/watch=49319

Dentists

• AADMD The American Academy of Developmental Medicine & Dentistry
• Dental Care for persons with disabilities​​

Medicine - Healthcare

• American Academy of Developmental Medicine & Dentistry (AADMD) is a non-profit, membership organization of interdisciplinary health professionals, including primary physicians, medical specialists, dentists, optometrists, nurses and other clinicians, committed to improving the quality of healthcare for people with intellectual & developmental disabilities (IDD). - National Curriculum Initiative in Developmental Medicine (NCIDM)
• Disability and Ableism in Medicine: A Curriculum for Medical Students 
• Health Care for Adults with IDD
• University of MI Medical School - “Working With People With Disabilities: An Interactive Video/Lecture Session for First-and Second-Year Medical Students,”
• University of Michigan Medicine
  Center for Disability Health and Wellness - Webinars & conferences
• Univ of MI - IDEAL RRTC Webinar Series: Reimagining Primary Health Care for Individuals with Disabilities  IDEAL RRTC’s goal is to promote the healthy aging of adults with long-term physical impairments and disabilities. This will be achieved by identifying factors at the intersection of the person and environment that impede or support positive health and function outcomes and creating solutions that improve the fit between the two.
• Washington Univ in St Louis - Med student fills the gap in disability training: Class Acts-Human Health: Gallin develops curriculum aimed at improving care for patients with disabilities

Nursing

• DDNA - Developmental Disabilities Nurses Association
• National League for Nursing - Advancing care excellence for persons with disabilities
• NOND- Nurses with Disabilities
• https://www.aacnnursing.org/AACN-Essentials

Healthcare Professionals with Disabilities - Accessibility

• Society for Healthcare Professionals with  Disabilities  https://www.disabilitysociety.org/
• National Organization of Nurses with Disabilities https://nond.org/
• Docs with Disabilities Podcast https://medicine.umich.edu/dept/family-medicine/programs/mdisability/transforming-medical-education/docs-disabilities-podcast
• The Coalition for Disability Access in Health Science Education https://www.hsmcoalition.org/
• Association on Higher Education and Disability  https://www.ahead.org/home

Autism

• AASPIRE (Academic Autism Spectrum Partnership in research and Education) Academic Autism Spectrum Partnership in Research and Education – Academic Autism Spectrum Partnership in Research and Education (aaspire.org)
• Autism Now
• Autism Self Advocacy Network
• Bilingual Autism Guide
• Education on non-speaker with Autism – short online book on lived experience
  
• Interactive Autism Network
• Interagency Autism Coordinating Committee
• National Autism Association
• National Joint Committee for the Communication Needs of Persons With Severe Disabilities

Dementia

• Academy of Neurologic Communication Disorders and Sciences
• Alzheimer's Association

• Alzheimer's Foundation of America​ - Fact Sheets and Information

• American Federation for Aging Research
• Dementia
• Dementia Research Center
• Gerontological Society of America
• Medline Plus: Dementia
• National Institute of Neurological Disorders and Stroke
• National Institute on Aging: Alzheimer's Disease Education and Referral Center
• Pioneer Network: Changing the Culture of Aging in the 21st Century

• 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 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