The National Roadmap

The National Roadmap for Disability-Inclusive Healthcare (the Roadmap) is a plan created for clinicians to give the best healthcare possible to people with intellectual and/or developmental disabilities (IDD).

The Roadmap provides clear goals and commonsense actions that different groups can take to inspire change among both practicing clinicians and clinicians-in-training.

  • The Roadmap is a plan for clinicians to learn how to give the best healthcare possible to people with intellectual and developmental disabilities (IDD). Created by the Action to Build Clinical Confidence and Culture (ABC3) Coalition, the Roadmap included input from people with IDD, their care partners and caregivers, clinicians, and other healthcare leaders.

    IEC, a national nonprofit committed to making healthcare better and safer for people with IDD, formed the ABC3 Coalition.

  • We all deserve the best possible healthcare. However, approximately 60% of U.S. physicians say they don’t have the training and skills to properly care for people with disabilities.

    This is especially true for clinicians – individuals such as doctors, nurses, and dentists – who treat people with intellectual and/or developmental disabilities (IDD). IDD includes people with conditions such as autism, Down syndrome, intellectual disability, and more.

    Reasons for the lack of confidence include:

    • Medical students spend an average of just 11 minutes learning about IDD.

    • A number of misconceptions exist about how disability affects the length and quality of life for people with IDD.

    • Successfully serving people with IDD may mean using some tools and equipment that are not yet the standard for healthcare offices.

    • Clinicians may not know where to go to get the training and support they are seeking.

    • Clinicians may not know how to correctly charge insurance companies, so they can pay for any extra costs. For example, an appointment for a person with IDD can take extra time, which costs more.

    The Roadmap was created to address these and other challenges.

Goals

Nurse in blue scrubs standing beside woman wearing a red dress and hijab who uses a wheelchair, both are on a light blue curving pathway

The National Roadmap seeks to:

  • Give clinicians (such as doctors, nurses, and dentists) the skills and confidence to care for people with IDD

  • Help clinician offices to be welcoming and accessible for people with IDD

  • Offer clinicians a place to learn about caring for people with IDD

  • Make sure that schools and other places that teach new clinicians have classes about caring for people with IDD

  • Make sure the rules and guidelines for how clinicians do their jobs include how to best care for people with IDD

Roadmap Sector Goals & Actions

What can different groups (sectors) within healthcare and healthcare education do to improve care for people with IDD?

Round image of three hands of different skin tones coming together on a navy blue background with a light blue border

ABC3 Coalition & IEC

Goal 1

Use facts and stories about people with IDD to show the need for action

Actions

  • Gather health stories from people with IDD

  • Create videos that tell stories about people with IDD and their healthcare

  • Collect facts about IDD from books and papers in medical journals

  • Build a group of learning tools that help clinicians such as doctors, nurses, and physician associates improve their thinking and skills around serving people with IDD (culture change campaign)

  • Join with organizations from the other sectors in the Roadmap to work on culture change campaigns

  • Help lawmakers learn about the need for culture change and training

Goal 2

Ask organizations that teach or represent clinicians to include IDD as part of their coursework and continuing medical education (CME)

Actions

  • Find and gather leaders in those organizations to ask what they need to reach this goal

  • Help these organizations create learning goals and tools that include:

    • Training packages with step-by-step plans for using coursework, videos, case scenarios, and ways to work with people with IDD

    • A tool to help doctor’s offices, clinics, hospitals, and other healthcare offices decide if they are ready to serve people with IDD (audit tool)

    • Role play activities (case scenarios), created with help from people with IDD, for clinicians to see what healthcare is like for people with IDD

    • In-person and online trainings for clinicians

    • Programs that train clinicians to teach other clinicians about serving people with IDD (“train the trainer” programs)

    • Help organizations partner with people with IDD to create “train the trainer” programs (programs that train clinicians to teach other clinicians about serving people with IDD)

Goal 3

Ask organizations that create coursework and tests that clinicians use to get licensed, certified, recertified, and accredited (accrediting organizations) to include IDD content

Actions

  • Figure out which accrediting organizations are most important to partner with

  • Ask accrediting organizations what they need to reach this goal

  • Help accrediting organizations find people with IDD and healthcare experts who can work together to design coursework and tests about serving people with IDD

Illustration of three medical professionals with a red table in front of them. Person on the left wears their hair in locs and holds a clipboard. The center person has long wavy hair and a stethoscope. The person on the right wears blue scrubs.

Professional Societies

Goal 1

Show clinicians that it’s more important to get to know a person than to focus on their IDD

Actions

  • Partner with ABC3 to create lists of skills that clinicians should have to better serve people with IDD (competencies). Then, ask professional societies and accrediting organizations to use these competencies in coursework and testing.

  • Partner with ABC3 to run culture change campaigns

    • Share ABC3’s culture change campaign tool kit with society members

  • Encourage professional society members to use the ABC3 training package and audit tool in their own organizations

  • Develop learning materials for clinicians who specialize in certain types of healthcare, such as care of the brain or heart

Goal 2

Create quality measures, which are tools to measure the quality and safety of healthcare for people with IDD, including methods, patient viewpoints, and health results

Actions

  • Partner with ABC3 to develop quality measures that support the Community-Led Standards for Improvement (a plan for learning what people with IDD, clinicians, and others think are the most important things about health and life)

  • Get support for (endorsement) IDD quality measures by Medicare and Medicaid

  • Promote use of IDD quality measures with clinicians, insurers, and government agencies

Goal 3

Motivate clinicians to get continuing clinical education (CCE) credits for learning about IDD

Actions

  • Partner with ABC3 to create IDD-related CCE

  • Offer free CCE credit for clinicians to attend IDD-related sessions at society conferences

  • Find ways for existing CCE test questions to include information about IDD

  • Spread the word about IDD CCE trainings

Goal 4

Promote healthcare settings that support people with IDD

Actions

  • Encourage organizations such as The Joint Commission to require healthcare (clinical practice) and community services sites be IDD-friendly

  • Create checklists to help healthcare sites build IDD-friendly environments

  • Teach clinicians about:

    • Meeting Americans with Disabilities Act (ADA) requirements

    • Legal risk for mistreating people with IDD

Illustration of a yellow educational building with pillars

Educational Associations

Goal 1

Sponsor culture change campaigns

Actions

  • Partner with ABC3 and people with IDD to build learning tools that help clinicians improve their thinking and skills around serving people with IDD (culture change campaigns)

  • Ask leaders from colleges and graduate training programs that teach and train new clinicians to help with culture change campaigns

Goal 2

Create courses (curricula) that teach and train clinicians how to support patients of diverse cultural backgrounds

Actions

  • Partner with ABC3 to decide what students must learn from curricula (standards)

  • Agree on a list of what clinicians need to know and do (competencies) and the ways these competencies will help people with IDD

  • Include IDD material into existing courses to train teachers and the students they teach

  • Encourage association members to use the ABC3 training curricula

  • Track who uses the curricula and get their ideas on how to make it better

  • Help teach standardized patients and real patients about the list of healthcare skills needed to care for people with IDD. (Standardized patients are people who play the role of real patients to help clinicians-in-training learn.)

  • Work with IDD educators and their networks

  • Host meetings with key education leaders and community members to share what the ABC3 Coalition has learned

Goal 3

Include information about IDD in training programs for both teachers and the students they teach

Actions

  • Use ABC3 training curricula

  • Include people with IDD in trainings so they can share their experiences

  • Focus on trainings for primary care doctors, nurses, and physician associates before reaching out to other specialties

  • Work with accrediting organizations to agree on the most important IDD learning and skill competencies for students training to be doctors, nurses, and physician associates

  • Include IDD information in coursework

Illustration of three peoples' busts in front of a green building with columns. Person on the left has long hair. Person in the center wears a blue suit and has facial hair. Person on the right has a green suit and no facial hair.

Regulatory Bodies for Clinicians

Goal 1

Make learning about IDD required for clinicians who are renewing their licensing

Actions

  • Set the level of IDD-related continuing clinical education (CCE) needed for clinicians who are renewing their professional licenses

  • Encourage creating and using more IDD information in CCE courses

Goal 2

Make learning about IDD required for clinicians who are getting board (re)certification (the tests they must pass to be able to see patients)

Actions

  • Partner with ABC3 to plan how certification exams and requirements can include IDD competencies

  • Agree on a set of skills-based competencies (things clinicians learn how to do) with accreditors of graduate training programs for each area of healthcare

  • Use the ABC3 training package

Illustration of three documents with writing and a yellow seal in the bottom right corner

Accrediting Bodies for Healthcare Facilities

Goal 1

Sponsor culture change campaigns among leaders of facilities

Actions

  • Partner with ABC3 and people with IDD on culture change campaigns

Goal 2

Include IDD-related tools and processes into requirements for facility accreditation

Actions

  • Partner with people with IDD and ABC3 to figure out how facilities should prepare to support people with IDD

  • Build off existing tools to certify facilities as IDD-inclusive

  • Include items for supporting people with IDD in the requirements for healthcare facilities

The Clinician Journey

How can clinicians become better at caring for people with Intellectual and Developmental Disabilities (IDD)?

Illustration of clinician with arms folded and confused

As the Journey Begins

A clinician:

  • May not know how to care for people with IDD

  • May not know where to go for help

Important steps (supporting factors) for clinicians as their journeys begin

    • Spend time with people with IDD

    • Learn about barriers they face

    • Get training on how clinicians’ thoughts and actions affect the care they give

    • Think about their own culture and learn to treat people from different cultures

    • Get training on how to use simple language

    • Learn different ways to communicate, such as through pictures

    • Know the standards & requirements for treating people with IDD

    • Get feedback on the care they give and how to improve

Illustration of clinician with hands of hips and happy face

During the Journey

A clinician will:

  • Learn how to care for people with IDD

  • Learn different cultures

  • Build empathy

Important steps for clinicians during their journey

    • Ask patients to explain information back to the clinician to check understanding

    • Use simple language

    • Make sure equipment and clinics are accessible to all people

    • Use tools to help all people communicate, such as visuals or mobile phone apps

    • Refer patients to services with IDD experts

    • Build strong relationships with people with IDD and their families to support their whole health

Clinician smiling and kneeling with arm on patient, who is wearing a red shirt and is seated in a wheelchair

At Journey’s End

A clinician and people with IDD can feel ready to act, which can lead to better health!

Important steps for clinicians at their journey’s end

  • Work together with nurses, social workers, and community groups to support people with IDD

  • Meet people where they are by finding ways to meet their unique needs

  • Keep practicing! Give excellent care to all patients, while recognizing it is an ongoing journey of learning

ABC3 Steering Group

The ABC3 Steering Group is a diverse coalition made up of people with IDD, care partners/caregivers, clinicians, and other healthcare leaders, all passionate about creating safer and better healthcare for people with IDD. The Steering Group worked collaboratively, prioritizing the perspectives of people with IDD, to develop the goals and actions put forth in the Roadmap.

  • Dena Gassner, IDD Self-Advocate

  • BJ Stasio, IDD Self-Advocate

  • Tyler Urias, IDD Self-Advocate

  • Accreditation Council for Graduate Medical Education (ACGME)

  • American Academy of Developmental Medicine and Dentistry (AADMD)

  • American Academy of Pediatrics (AAP)

  • American Academy of Physician Associates (AAPA)

  • American Association of Colleges of Nursing (AACN)

  • American Association on Intellectual and Developmental Disabilities (AAIDD)

  • American College of Physicians (ACP)

  • American Dental Education Association (ADEA)

  • Association of American Medical Colleges (AAMC)

  • Autistic Doctors International (ADI)

  • Developmental Disabilities Nurses Association (DDNA)

  • ECHO Autism

  • IntellectAbility

Supporters

The following individuals and groups have signed their support to the National Roadmap for Disability-Inclusive Healthcare.

Add your name as a Roadmap supporter.

Organizations

    • Abrazar, Inc.

    • All Florida Podiatry

    • Alliance for Academic Internal Medicine (AAIM)

    • Alliance for Disability in Health Care Education

    • AHRC NYC

    • Association of American Medical Colleges

    • American Academy of Family Physicians

    • American Medical Women's Association

    • ANCOR American Network of Community Options and Resources

    • Autistic Doctors International

    • Autistic People of Color Fund

    • Autistic Self Advocacy Network

    • Autistic Women & Nonbinary Network

    • Capital District DDSO/ OPWDD

    • Catalight

    • Center for Self Advocacy Inc.

    • Community Services for Every1

    • Community Services, Incorporated

    • Delta Dental Foundation of Michigan, Ohio, Indiana, and North Carolina (DDF)

    • Delta Dental of New Jersey Foundation (serving NJ and CT)

    • Disability Voices United

    • Down Syndrome Association of Northeast Ohio

    • Dravet Syndrome Foundation

    • Fitzmaurice Community Services

    • Goldstein Schippits and Malloy Media LLC

    • HeartWell Services LLC

    • Inclusive Healthcare Partnership Project (IHPP)

    • IntellectAbility

    • LISTEN

    • Our Stomping Ground - Inclusive Communities

    • Person Centered Services

    • Progressive Evaluation & Referral Center (PERC)

    • Rowan Virtua RISN Center

    • Special Care Dentistry Association (SCDA)

    • The Association for Successful Parenting (TASP)

    • The Circle of Vietnamese Parents

    • University of the Pacific Arthur A. Dugoni School of Dentistry

Individuals

    • A. Milazzo, MD

    • Ahmet Uluer

    • Allen Wong, DDS, EdD

    • Allison P. Edwards, DrPH, MS, RN, CNE, CDDN, FAAN

    • Andie Iannuzzelli, DO

    • Andrea Spatarella

    • Andrew Levitas, MD

    • Annette Lammon-Belcher

    • Arethusa Kirk

    • Bernie Rosof

    • Blase Brown

    • Brendan Crow, MD

    • Britney Burkart, MSW, LCSW

    • Casey Blake

    • Casey Guthrie

    • Cathy Farmer

    • Cathy Lazarus, MD

    • Cristina Macasaet

    • Cuong Do

    • Deborah Picker

    • Donna Perlin, MD

    • Eddie Conerly

    • Eleith Brown, DDS

    • Dr. Elisabeth Glatz

    • Eric Fox

    • Erin Potts, DDS

    • Fred Malkin

    • Frederick Wetzel, Ph.D.

    • Hakan Tuncer

    • Heather Gomez-Bendana

    • Jason Lehmbeck

    • K. Burke

    • Kelli Atkinson

    • Kevin Bettis

    • Dr. Kitty O’Hare

    • Kristen Birkelbach

    • Kristen Scholl

    • Laura Cifra-Bean, MD

    • Laura Hall

    • Lisa Buck

    • Marisa C. Brown, MSN, RN

    • Mark Friedman

    • Marta Reeger

    • MaryEllen Mayo

    • Max Donatelli

    • Meelin Dian Chin Kit-Wells

    • Meg Nero RN

    • Melanie T. Malabanan, RN

    • Michael K. Sowell, MD

    • Michelle E. Ziegler

    • MJ Karimi

    • Nannetta Gail Manning

    • Neera Jain

    • Nicole LeBlanc

    • Patience White, MD, MA, MACP, FAAP

    • Richard Chung

    • Robert Galvin, MD

    • Sarah Kenny

    • Shirley McMillan

    • Shyla McKinley

    • Stacy Anderson

    • Stephen Sulkes, MD

    • Steve Gonyea

    • Susan Hingle

    • Susan Shanske

    • Susan Wiley

    • Suzen Riley

    • Tammie Alexander, MHL BSN, RN

    • Vick Hirani

    • Viola Sanchez

    • Wendy Aita, PhD

Get Involved

IEC’s ABC3 Coalition seeks additional support for the National Roadmap for Disability-Inclusive Healthcare from individuals, healthcare and disability organizations, and other healthcare leaders.