Health Equity for People with IDD
Pictured: Person in a wheelchair at the entrance of a hallway
By Donna Bainbridge, Sandra Block, David Jenkins and Mary Pittaway
Before we begin, let us define a few terms so that we’re all on the same page. Equity assumes fairness and justice, while inequity implies avoidable unfairness or injustice. A disparity is a noticeable and significant difference or dissimilarity. Inequities are viewed as the causes of health disparities.
The Global Report on Health Equity for Persons with Disabilities (Dec 2022) refers to disability as the interaction between individuals with a health condition (e.g., cerebral palsy, Down syndrome, and depression) and associated personal and environmental factors (e.g., negative attitudes, inaccessible transportation and public buildings, limited social supports). Over 1 billion people are estimated to experience disability, corresponding to approximately 15% of the world's population. Up to 190 million (3.8%) of people aged 15 years and older have significant difficulties in functioning, often requiring health care. The number of people experiencing disability is increasing secondary to an increase in chronic disease and population aging and improved diagnostic abilities e.g. autism.
Disability is extremely diverse. While some health conditions associated with disability result in poor health and extensive health care needs, others do not. However, all people with disabilities have the same general health care needs as everyone else, and therefore need access to mainstream health care services. Article 25 of the UN Convention on the Rights of Persons with Disabilities (CRPD) reinforces the right of persons with disabilities to attain the highest standard of health without discrimination. However, the reality is that few countries provide adequate quality services for people with disabilities.
“Disability is also a human rights issue. People with disabilities are subject to multiple violations of their rights, including acts of violence, abuse, prejudice, and disrespect. These intersect with other forms of discrimination based on age and gender, among other factors.”
Disability inclusion in the health sector
Disability is often not perceived as a health issue. Therefore, action is not taken towards disability inclusion in the health sector, which is also often overlooked in national disability strategies and action plans to attain the CRPD. Attaining the highest possible standard of health and well-being for all will only be possible if governments understand the need for a paradigm shift, recognizing that global health goals can only be achieved when disability inclusion is intrinsic to health sector priorities, including universal health coverage without financial hardship protection during health emergencies, and access to public health interventions, such as water, sanitation and hygiene services.
Disability inclusion is critical to achieving universal health coverage without financial hardship, because persons with disabilities are:
3 times more likely to be denied health care
4 times more likely to be treated badly in the health care system
50% more likely to suffer catastrophic health expenditure.
Disability inclusion is critical to achieving better protection from health emergencies because persons with disabilities are:
disproportionately affected by COVID-19 and other infectious diseases
at increased risk of infection indirectly due to necessary restrictions to reduce spread of virus (e.g., disruptions in support services).
presented with more barriers in accessing health care
Disability inclusion is critical to achieving better health and well-being because persons with disabilities are:
4–10 times more likely to experience violence
at higher risk of nonfatal injury from road traffic crashes
dying up to 20 years earlier than those without disabilities.
at 2 times the risk of developing other secondary conditions (depression, asthma, diabetes, stroke, obesity or poor oral health).
Children with disabilities are:
3 times more likely to experience sexual abuse
2 times more likely to be malnourished.
In summary, people with disabilities face many health inequities including stigma, discrimination, poverty, exclusion from education and employment, and barriers faced in the health system itself. These inequities are due to unfair conditions which affect persons with disabilities disproportionately, and they can be grouped into four interrelated categories.
Four categories of inequities
Pictured: Chart showing four categories: Structural factors, Social determinants, Risk factors and Health system factors
Structural factors: these relate to the very broad socioeconomic and political context, and the mechanisms that generate social stratification or the system of ranking people based on factors like wealth, income, education, and power.
Social determinants of health: these are the conditions in which people are born, grow, live, work and age.
Relative impact of factor categories
Research demonstrates the people with IDD have many risk factors for health disparities that are related to the social determinants of health, including social support, health behaviors, and socioeconomic status. For example, the health disparity of obesity isn’t only the result of unhealthy eating or inadequate knowledge of healthy eating, but also many additional factors that play a part in a person’s overall health or wellness.
Individuals with disabilities often report feelings of loneliness and isolation, as well as less contact with friends and family than individuals without disabilities, and these measures of social support are known to be important determinants of long-term health and well-being. Individuals with disabilities are, on average, more likely to have a sedentary lifestyle and poorer nutrition leading to obesity. People with disability are more likely to have socioeconomic risk factors for poorer health, such as being unemployed, in poverty, exposed to violence, and having less than a high school education. Taken altogether, these factors constitute determinants of health status that are extremely important to keep in consideration when thinking about strategies for prevention and health promotion.
Risk factors: these are factors associated with noncommunicable diseases including tobacco use, diet, alcohol consumption and amount of exercise, as well as environmental factors such as air pollution. The increased exposure to risk factors for persons with disabilities is due to public health interventions that often are not inclusive.
Health system factors: these include barriers across the building blocks – in service delivery, the health and care workforce, health information systems, health systems, medical products and technologies, financing, and leadership.
Barriers to Equitable Health Care
People with disabilities also face many barriers when accessing health care and health-related services. Disability is a priority of development because its higher prevalence is higher in lower-income countries and disability and poverty reinforce and perpetuate one another.
Attitudinal barriers
People with disabilities commonly report experiences of prejudice, stigma and discrimination by health service providers and other staff at health facilities. Some practitioners have unconscious bias, or prejudice against people of a particular ethnicity, gender, or social group that influences one's actions or perception. Many service providers have limited knowledge and understanding of the rights and health needs of people with disabilities and have inadequate training and professional development about disability services.
Disability is defined differently across agencies, organizations, and countries. Many health services do not have policies such as longer and flexible appointment times, provision of outreach services and reducing costs for people with disabilities in place to accommodate their needs. People with disabilities are rarely asked for their opinion or involved in decision-making about the provision of health services to people with disability. Including people with disabilities in these discussions would be a good segue to providing actual changes that need to occur.
“Women with disabilities face specific barriers to sexual and reproductive health services and information. Health workers often make the inaccurate assumption that women with disabilities are asexual or are unfit to be mothers.”
The health of the population of people with IDD has been unrecognized for public health attention until recently. The intersection of race-ethnicity, low income and lower educational attainment with disability has exacerbated this lack of attention. Because the population of people with IDD is so diverse, it’s more difficult to get a handle on needs. Often, the assumption is made that health of people with IDD is poor because of the disability, while some have opinion that people with IDD get good health care.
Physical barriers
Health services and activities are often located far from where most people live or in an area not serviced by accessible transport options.
Structural obstacles in environment that preclude or make mobility or accessibility difficult or impossible:
Stairs at the entrance to buildings or services and activities located on floors without elevator access
Inaccessible toilets, passages, doorways and rooms that don’t accommodate wheelchair users, or are difficult to navigate for people with mobility impairments
Fixed-height furniture, including examination beds and chairs, can be difficult for people with disabilities to use.
Too bright or poorly lit health facilities and other activity venues without clear signage or confusing layouts
Inadjustable or inaccessible equipment
Transportation Barriers
Barriers in available transport can inhibit access to and utilization of health services:
No para-transport available
Extreme distances to the facilities, especially in rural areas.
Communication Barriers
Research informs us that all medical information should be presented at a 6th grade level to all people as it is usually complicated and uses foreign words. Yet health information is often presented in complicated ways or with a lot of jargon.
General points that are problematic:
1. Technical language
2. Long sentences with many syllables
Written messages not understandable:
Print is too small (<14 font)
Material may be too complicated,
Material may be all words with no graphics or pictures
Material may be all CAPS which is more difficult to read
Material may not effectively use color, bold or others methods to emphasize.
For those with visual impairments, auditory messages may not be unavailable, or videos may not have closed captioning (CC). Oral communications may be presented without sign language. Health information or prescriptions may not be provided in accessible formats, including Braille or large print, which presents a barrier for people with vision impairment. A key barrier to health services for people who have a hearing impairment is the limited availability of written material or sign language interpreters at health services.
The simple keys to making health information available in easy-to-follow formats includes:
Use of plain language and pictures or other visual cues can make it easier for people with cognitive impairments to follow
Use of caps only at appropriate places with no use of all caps
Use of 14 or larger font
Use of color, selective bold and underline to emphasize important points
Simple take-home cards with pertinent information only
Financial Barriers
Over half of all people with disabilities in low-income countries can’t afford proper health care.
Many people with disabilities also report being unable to afford the costs associated with traveling to a health service and paying for medicine, let alone the cost of paying to see a health service provider.
Policy Barriers
Many inequities in the US are related to lack of awareness:
1. Denying qualified people with IDD the opportunity to participate in and benefit from federally funded programs.
2. Denying people with IDD access to programs, services, and benefits as a result of barriers.
3. Denying reasonable accommodation so that people with IDD can participate.
Positive signs of change
World Health Organization (WHO) response
To improve access to and coverage of health services for people with disability, WHO
guides and supports member states to increase awareness of disability issues in the following ways:
promotes the inclusion of disability as a component in national and sub-national health programs;
facilitates collection and dissemination of disability-related data and information;
develops normative tools, including guidelines to strengthen disability inclusion within health care services;
builds capacity among health policymakers and service providers;
promotes strategies to ensure that people with disability are knowledgeable about their own health conditions, and that health care personnel support and protect the rights and dignity of persons with disability;
contributes to the United Nations Disability Inclusion Strategy (UNDIS) to promote “sustainable and transformative progress on disability inclusion through all pillars of work of the United Nations”;
and provides Member States and development partners with updated evidence, analysis and recommendations related to disability inclusion in health sector.
The Roadmap
The Roadmap was developed by the Action to Build Clinical Confidence and Culture Coalition(ABC3), a diverse group that includes people with IDD, care partners, clinicians, and other health care leaders brought together by IEC.
“Most clinicians-in-training get very little instruction about IDD. So, it’s not surprising that approximately 60% of US physicians report feeling like they don’t have the training and skills to properly care for people with disabilities. Inadequate training and outdated assumptions contribute to health care disparities for people with IDD. The Roadmap tackles these challenges head-on.”
ABC3's inclusive approach ensures active participation from people with IDD and their caregivers, alongside clinicians and health care leaders, guaranteeing that the Roadmap aligns with community priorities and objectives. The Roadmap offers clear and commonsense goals and actions for clinicians and groups involved with health care for those with IDD; it is a plan for clinicians to learn how to give the best health care to people with IDD.
Specifically, it highlights goals and actions for five groups that are particularly influential in how clinicians are taught. These groups include educational associations, regulatory and accrediting bodies, and professional bodies. The Roadmap also illustrates the transformative journey a clinician may take from limited IDD understanding to clinician readiness, identifying key factors that foster motivation for equitable care. Connection of a clinician to a person with disability to discuss issues related to health care delivery, and practice with performance of history/physical and comprehensive examination with an actual person with a disability is a powerful method to teach method and communication.
HHS New Proposed Rule to Strengthen Prohibitions Against Discrimination on the Basis of a Disability in Health Care and Human Services Programs - Significant updates to Section 504 of the Rehabilitation Act rule
U.S. Department of Health and Human Services (HHS), through its Office for Civil Rights (OCR), announced a proposed rule that prohibits discrimination on the basis of disability. The rule, Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance, updates critical provisions that help persons with disabilities access health and human services under Section 504 of the Rehabilitation Act of 1973. The rule, originally published in 1977, advances the promise of the Rehabilitation Act and helps to ensure that people with disabilities are not subjected to discrimination in any program or activity receiving funding from HHS just because they have a disability.
Section 504 prohibits discrimination against otherwise qualified individuals based on disability in programs and activities that receive Federal financial assistance or are conducted by a Federal agency. Since the law was enacted, major legislative and judicial developments have shifted the legal landscape of disability discrimination under Section 504. HHS is proposing to amend the regulations to update them and clarify obligations in several crucial areas not explicitly addressed in the current regulations, and to improve consistency with the Americans with Disabilities Act, the Americans with Disabilities Amendments Act, amendments to the Rehabilitation Act, and significant case law.
This Notice of Proposed Rulemaking (NPRM) clarifies the application of Section 504 to several critical areas. The proposed rule:
ensures that medical treatment decisions are not based on biases or stereotypes about individuals with disabilities, judgments that an individual will be a burden on others, or beliefs that the life of an individual with a disability has less value than the life of a person without a disability;
clarifies obligations for web, mobile, and kiosk accessibility;
establishes enforceable standards for accessible medical equipment;
clarifies requirements in HHS-funded child welfare programs and activities;
prohibits the use of value assessment methods that place a lower value on life-extension for individuals with disabilities when that method is used to limit access or to deny aids, benefits, and services.
clarifies obligations to provide services in the most integrated setting appropriate to the needs of individuals with disabilities.
A fact sheet on the NPRM is available here.
The current regulation is in effect while the Department undertakes new rule-making. If you believe that you or another party has been discriminated against on the basis of race, color, national origin, sex, age, or disability, visit the OCR complaint portal to file a complaint online.
National Institutes of Health (NIH) advances landmark recommendations on disability inclusion and anti-ableism
Although 27% of U.S. adults live with a disability, only 10% of science, engineering, and health doctorate holders, and less than 2% of researchers funded by NIH, report having a disability. Inclusion is even lower among professionals with disabilities from underrepresented racial or ethnic groups in science, technology, engineering, mathematics, and medicine.
NIH has recently prioritized increasing diversity, equity, and inclusion in its workforce and its extensive activities. People with disabilities have not historically been featured in these initiatives, which have largely focused on expanding representation and inclusion of people from racial and ethnic groups.
“Inequities can occur at any step of the complex process of scientific research, including recruiting and training scientists, reviewing research grant applications, ensuring accessibility and inclusion within the research workplace, and promoting and supporting researchers and other personnel throughout their careers. We have served on research grant review panels where members refused to believe that obtaining informed consent is possible from deaf people, despite effective communication options.”
We have encountered inaccessible online grant portals that lock out blind and visually impaired scientists. We have been dissuaded by program officers from submitting grants supporting disabled trainees.
In 2021, NIH established a subgroup on individuals with disabilities within its Working Group on Diversity to explore ways to increase disability equity and inclusion. The nine recommendations from the subgroup’s report have the potential to tackle these disparities through the following actions:
updating NIH’s mission statement to eliminate ableist language about “reducing disability”;
establishing an NIH Office of Disability Research to coordinate research activities involving people with disabilities and to support disability inclusion within the scientific workforce;
ensuring that including people with disabilities and anti-ableism are core components of all NIH diversity, equity, inclusion, and accessibility efforts;
developing an internal NIH-wide effort to identify and address structural ableism and promote disability inclusion, similar to approaches used to tackle other forms of discrimination and promote inclusion, such as UNITE;
expanding efforts to include disability communities and the perspectives of individuals with disabilities in NIH efforts and help inform NIH’s approaches with these perspectives;
formally designating people with disabilities as a health disparity population, allowing for more funding of research addressing the health inequities disabled people face;
collecting data on disability wherever demographic information is collected within NIH data systems;
establishing structures of accountability around these efforts to promote progress and transparency.
Areas that still need to be addressed
Professional Medical Education
Many clinicians-in-training in a multitude of medical professions get very little if any instruction about people with IDD. This includes not only physicians, but also dentists, therapists, nutritionists, and social workers. So, it's not surprising that approximately 60% of US physicians report feeling like they don’t have the training and skills to properly care for people with disabilities. Likewise, clinicians feel general discomfort interacting with people with ID, spend reduced time and/or harbor implicit bias.
One study surveyed physicians across 7 specialties regarding their perceptions of people with disabilities. The results indicated that:
56.5% felt strongly that they welcomed people with disability into their practice.
Only 40.7% were confident that they could provide that same level of care for their patients with disability as they do for their patients without disability.
82.4% indicated that persons with disability have a poorer quality of life.
35.8% reported knowing little or nothing about their legal responsibilities under the ADA
18.1% strongly agreed that the health care system often treats persons with disability unfairly
Physicians reported that lack of formal education or training was a moderate or more significant barrier to appropriately care for persons with disability!
What does the Ideal Curricula Look Like?
Strong component for communication with the person with ID
Multi-disciplinary delivery
Section on medical conditions and associated conditions are tailored to the healthcare field of the students and to the conditions the students will most likely encounter in their clinical training.
Founded by AADMD in 2009, NICHE Medical originally started under the project name “National Curriculum Initiative in Developmental Medicine” (NCIDM). This program defines and integrates the concepts of Developmental Medicine into the medical school curriculum of medical schools in the United States. Through our partner, Positive Exposure, we incorporate images and educational films that change how medical information is presented to healthcare providers in training - clinicians see the person and not just a diagnosis - which is key to treating people with IDD.
“In 2023, we launched NICHE Dental as an initiative in the oral health education space. We need to continue to expand the use of the principles and content of NICHE into other professional health care curricula.”
Interdisciplinary Public Health Management
An INTERDISCIPLINARY TEAM is a broad group of professionals, distinct from medicine and nursing, who use science and evidence-based practice for prevention, diagnosis, evaluation and treatment of acute and chronic diseases. Six out of ten health care professionals are in allied health.
Great minds may think alike, but delivery may be different.
An interdisciplinary team has the potential to collect more complete information, compared to an individual provider.
An individual clinician uses his or her own intuition and views.
A group with a variety of perspectives will offer a variety of approaches that result in better care.
Their goals in public health are to:
to promote disease prevention and wellness for optimum health,
to apply program management skills to support health care systems in multiple settings.
Effective Communication and Coaching for Compliance
One of the major barriers to an effective health management for a person with ID, is poor communication on the part of the medical provider—some examples of poor communication include but are not limited to:
General discomfort interacting with people with IDD.
Directing queries to the caregiver, parent, coach rather than the person with IdD. And
Unaware that persons with IDD want their medical concerns dealt with directly.
Insufficient time with a patient with IDD.
Lack of respect. Poor or no eye contact.
Difficulty understanding responses if individual with IDD has issues with aphasia/dysphagia/speech impediments.
Literature for patient education is inappropriate level and devoid of pictures.
No plan for encouragement or adherence in the home environment
Reduction of Discrimination and Education about Ability in Employment
Employment provides both mental and physical benefits for the worker. Work can provide friendships and enhance positive identity and self-worth. It might also present an intellectual challenge, and help understanding of the larger world. Although work can cause physical risks, it can also increase physical activity and endurance. Coupled with stress reduction, it can be a deterrent to many conditions like stroke, heart disease and fracture. Additionally, the option of benefits including health insurance are present.
Special Olympics commissioned a study of adults with IDD in the labor force. The study found that only 44% of adults with IDD aged 21-64 are in the labor force compared to 83% of working-age adults without disabilities. The unemployment rate for adults with IDD is more than twice as high as those without disabilities, and 21% of working age adults with IDD are unemployed compared to less than 8% of adults without disabilities. Fully 28% of working age adults with IDD have never held a job.
The US Department of Labor supports several initiatives to assist employers interested in hiring people with disabilities while the Department’s Office of Disability Employment Policy runs Employer Assistance and Resource Network on Disability Inclusion (EARN) to provide resources to recruit, hire and retain people with disabilities
Several specific organizations are specifically addressing addresses the discrimination and employment of persons with ID. One example is the H.E.A.R.T. Program in Houston.
Another is Opportunity Resources which offers many services including employment opportunities in the area. National companies that actively hire and provide speciality training for people with IDD include Home Depot, Walgreens, Microsoft, Best Buy and AMC Theatres. But we need to do more about promoting employment and the abilities of people with IDD in the workplace.
References and Resources
Action to Build Clinical Confidence and Culture (ABC3) Coalition of Institute for Exceptional Care, 2024. “The National Roadmap for Disability-Inclusive Healthcare.” https://www.inclusivecareroadmap.org/
Boyes, Alice, 2019. “What Psychological Benefits Do You Get From Work?” Psychology Today online. https://www.psychologytoday.com/us/blog/in-practice/201908/what-psychological-benefits-do-you-get-work
Brooks, J, 2023. “Businesses that Hire People with IDD (Intellectual and Developmental Disabilities).” https://blog.ongig.com/diversity-and-inclusion/businesses-that-hire-people-with-idd/.
Healthy People 2030. “Employment”. https://health.gov/healthypeople/priority-areas/social-determinants-health/literature-summaries/employment
Iezzoni L.I., Rao S.R., Ressalam J., Bolcic-Jankovic D., Agaronnik N.D., Lagu T., Pendo E., Campbell E.G.. 2022. “US Physicians' Knowledge About The Americans With Disabilities Act And Accommodation Of Patients With Disability”. Health Aff (Millwood) 41(1):96-104. doi: 10.1377/hlthaff.2021.01136. PMID: 34982624; PMCID: PMC8740697.
Kasey, Rebecca, 2024. “Moving From Community Participation to Inclusion and Ingegration.”
Council on Quality and Leadership. https://www.c-q-l.org/resources/newsletters/moving-from-community-participation-to-inclusion-and-integration/
Nancarrow, Susan, A., Booth, Andrew, Ariss, Steven, Smith, Tony, Enderby. Pam, and Roots, Alison, 2013. “Ten principles of good interdisciplinary team work”. Human Resources for Health 11, 19. doi: 10.1186/1478-4491-11-19 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3662612/#:~:text=Ten%20characteristics%20underpinning%20effective%20interdisciplinary%20team%20work%20were,outcomes%20of%20care%3B%20and%20respecting%20and%20understanding%20roles.
National Institutes of Health, 2023. “NIH designates people with disabilities as a population with health disparities.” https://www.nih.gov/news-events/news-releases/nih-designates-people-disabilities-population-health-disparities
National Institutes of Health, 2023. “Reducing Abelism in Medicine and Research”. https://www.nichd.nih.gov/about/org/od/directors_corner/prev_updates/reducing-ableism-november2023
Siperstein, Gary N., Parker, Robin C., and Drascher, Max. 2013. “National Snapshot of Adults with Intellectual Disabilities in the Labor Force”. J Vocational Rehab 39: 157-165. DOI:10.3233/JVR-130658 siperstein-parker-drascher-jvr-national-snapshot.pdf
Steffens, Liändrie , and Felix, Lambert. 2022. “Evidence Brief: What is the current evidence around employment interventions that specifically focus on people with intellectual and development disabilities? “ Disability Evidence Portal. https://www.disabilityevidence.org/sites/default/files/content/question_brief/files/2021-09/DEP_Evidence_Brief_Employment_Livelihood_Final.pdf
World Health Organization. “Health Equity”. https://www.who.int/health-topics/health-equity#tab=tab_1
World Health Organization, December, 2022. “Global report on health equity for persons with disabilities”. https://www.who.int/publications/i/item/9789240063600
World Health Organization. September, 2022. “Mental Health at Work.” https://www.who.int/news-room/fact-sheets/detail/mental-health-at-work
About the Authors
DONNA B BAINBRIDGE, PT, EdD, AT-RET, CIFT
Dr. Bainbridge received Bachelor and Doctoral degrees from Boston University, master’s from UNC. As a physical therapist, she has worked in patient care and program development. A national/international presenter, she also researched wellness for persons with IDD. Donna founded and was Special Olympics Global Advisor for FUNfitness (2001-2022), coordinating global fitness assessment/programming. She coordinates World Physiotherapy Community for IDD. She is Adjunct Faculty at University of Montana. Current research is validation of balance programs in people with ID.
SANDRA BLOCK
Dr. Sandra Block is Professor Emeritus, Illinois College of Optometry; President, World Council of Optometry; past Global Clinical Advisor, Special Olympics Lions Clubs International Opening Eyes. She completed her Doctor of Optometry (1981), Pediatric Residency (1982), Master of Education, Master of Public Health, and received Doctor of Ocular Science h.c.. She is a Diplomate of the American Academy of Optometry and a Fellow of the National Academies of Practice, ARVO, and EAOO.
DAVID W JENKINS, DPM, FAAPSM
Pre-professional Education
University of California at Davis, Davis, California. B.S., Physiology.
Professional Education
California College of Podiatric Medicine, San Francisco, California. Received Doctor of Podiatric Medicine
Post-doctoral Education
Surgical Residency, Mesa General Hospital, Mesa, Arizona
Board Certification/Fellowship
Fellow, American College of Foot and Ankle Surgeons,
Fellow, Past President and Board Member, American Academy of Podiatric Sports Medicine,
Current Positions
Professor, Arizona College of Podiatric Medicine, Midwestern University
Global Faculty Advisor Special Olympics International
MARY PITTAWAY, MA, RDN
Mary Pittaway worked in public health in state and county governments, non-profit and private organizations. She’s initiated and managed state and local public health programs including WIC, community sustainable agriculture, osteoporosis prevention, population-based breastfeeding, health department accreditation, obesity prevention, community-based vitamin D, farmer’s market development and population-based health promotion for people with IDD. Mary provides Public Health consultation services for Special Olympics. She is an affiliate faculty at the University of Montana HHP Department.