Access two courses that are approved for continuing education by the Centers for Disease Control and Prevention for physicians, nurses, certified health education specialists and other health professionals.
The Ohio Disability and Health Program has developed online training modules that are designed to increase the capacity of health care providers to provide quality healthcare for persons with disabilities. The two courses are approved for continuing education by the Centers for Disease Control and Prevention for health professionals in multiple areas. For more information, please visit:
For people with disabilities, stigma can be a major barrier to participation. Stigmatizing attitudes about disabilities can also affect relationships between patients and providers. However, health care providers can be allies with their patients and help reduce the impact of stigma.
What Is Disability Stigma?
The word stigma comes from the Greek word for “mark.” Generally, stigma is a negative set of beliefs about people with specific characteristics. For example, ethnic or sexual minorities, or people with unusual facial appearance may encounter stigma.
People with disabilities have been stigmatized throughout history. In many cultures, disability has been associated with curses, disease, dependence, and helplessness. Disability stigma can play out in a number of ways, including:
Social Avoidance – People with disabilities may be left out of social activities, or they may find that friends become more distant after they develop a disability. People may be hesitant to make eye contact or start a conversation with someone who has a visible disability.
Stereotyping – People with disabilities may be presumed to be helpless, unable to care for themselves, or unable to make their own decisions. People with one disability, such as a speech impairment, may be presumed to have other disabilities they don’t have, such as an intellectual disability.
Discrimination – People with disabilities may be denied jobs, housing, or other opportunities due to false assumptions or stereotypes about disabilities. This still occurs today, despite disability rights laws such as the Americans with Disabilities Act (ADA).
Condescension – People with disabilities may be coddled or over-protected due to perceptions of their helplessness.
Blaming – People may be blamed for their disability, or accused of using their disability to gain unfair benefits.
Internalization – People with disabilities may themselves adopt negative beliefs about their disability and feel ashamed or embarrassed about it.
Hate Crimes and Violence – People with disabilities may be targeted in hate crimes. They are more likely to be victims of physical or sexual violence than people without disabilities.
How Can Disability Stigma Affect Your Relationship with Your Patients?
People with disabilities may manage their condition in ways that guard against being stigmatized. In addition, people with disabilities may be especially sensitive to signs of possible stigmatizing from their providers.
Some issues related to stigma that may arise include:
Concealment – If possible, some people may choose to conceal their disability in public in order to minimize stigma. As a result, they may be reluctant to use assistive devices, such as mobility devices or hearing aids, or to tell others about their diagnosis. They may also forgo some medical services.
Disability Pride – On the other hand, some people express pride and a positive identity around their disability as a way to counteract stigma. These individuals may wish to join groups of people who share their disability, where it is no longer stigmatized. They may also opt against medical treatment intended to “cure” their disability because they have developed a positive identity around the condition.
Social Integration – Stigma is social in nature and may interfere with social integration. In contrast to “concealment,” people may choose to make their disability more evident in order to improve their options for social participation. For example, a person with a mobility impairment may choose to use a wheelchair instead of a walker if the wheelchair would allow him or her to travel to work or family activities without fatigue.
Need for Respect – Your patients may be especially sensitive to your attitude about their disability. Building a collaborative partnership with your patient built on trust and respect communicates your support for the patient as a whole person.
Tips for Respectful, Stigma-free Interactions
Establish Respectful Communication
Dospeak directly to your patient, even if he or she has a companion or interpreter in the room. Make eye contact with the patient, not the companion.
Douse ordinary language. It’s OK to say “see you later” to a patient who is blind, or to talk about going for a walk with a patient who is non-ambulatory. Using ordinary expressions signals that you see your patients as full members of their community.
Doask patients with speech impairments how they prefer to communicate. Some patients may write or type to communicate if they have impaired speech, for example, or they may have established yes/no signals.
Douse age appropriate language and tone with adult patients, and assume that a patient with a disability will understand basic instructions unless you have a clear indication otherwise.
Don’t interrupt or rush a patient who communicates slowly because of a speech impairment.
Don’t guess what a patient is saying. If you don’t understand the communication, ask for clarification.
Respect Patient Privacy and Autonomy
Do provide written materials in an electronic format when possible, for patients with visual impairments and those who have difficulty with handwriting or manipulating print materials. A patient can independently fill out an electronic form in advance of an appointment. Provide medical record information, treatment plans, and instructions in a digital format when requested.
Do ensure that your office building and toilets are accessible to people using mobility aids such as walkers and wheelchairs, so that they can navigate the space independently.
Do ensure that your office practice is accessible. For example, your patients with disabilities should be able to get weighed, use the exam tables, and access radiological exams.
Do ask a patient the best way to provide physical assistance if it is needed.
Don’ttouch, pull or grab a patient’s body without asking for consent. For patients with some physical conditions, inappropriate touch can cause pain or interfere with balance. For others, unwanted touch can cause anxiety. Asking for consent respects the patient’s bodily autonomy.
Don’t handle a patient’s mobility device without consent.
Respect Disability Identity and Culture
Do respect a patient’s choice to downplay or highlight their disability in particular settings.
Don’t use negative words to describe disabilities. Words such as “tragedy” or “suffering” can convey a stigmatizing view of disability to your patients. Patients are not “confined to wheel chairs,” but rather use wheelchairs.
Don’t fall into the trap of “golden rule thinking.” This is imagining how you would personally feel with a disability as a way to infer how your patients feel. Disability is a complex experience that differs from person to person and changes over time. Listen to your patients to discover how you can be their best ally.
Eddey, G. E. & Robey, K. L. (2005). Considering the culture of disability in cultural competence education. Academic Medicine, 80, 706-712.
Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. New York: Simon and Schuster.
Morris, M. A., Yorkston, K. & Clayman, M. L. (2014). Improving communication in the primary care setting: Perspectives of patients with speech disabilities. Patient, 7, 397-401.
Olkin, R. (1999). What Psychotherapists Should Know About Disability. New York: Guilford Press.
“Disability Stigma and Your Patients” was developed by Arielle Silverman, PhD, and published by the University of Washington Aging RRTC. Content is based on research evidence and/or professional consensus.
This information is not meant to replace the advice from a medical professional. You should consult your health care provider regarding specific medical concerns or treatment.
University of Washington. (2016). Disability Stigma and Your Patients [Factsheet]. Aging Well with a Physical Disability Factsheet Series. Healthy Aging & Physical Disability RRTC, http://agerrtc.washington.edu
XCEL is designed to give quick tips in an entertaining way to reception/support staff who interact with people with developmental disabilities in healthcare settings. It comprises of a 7 minute animated video, a fact sheet, and highlights other resources that are helpful.
This session will provide a refresher on the requirements in the ADA and ABA Accessibility standard for Hospitals and Long-Term Care facilities. The presenters will provide an in-depth review of the standards and design challenges in long-term care settings, including highlights from recent research. Additionally, strategies for success in the field that both comply with the standard and meet the needs of older adults and their caregivers will be discussed. This is a joint session presented by the Access Board and the AIA Codes and Standards Committee. Session participants are encouraged to submit questions in advance.
National Child Traumatic Stress Network (2017) – established to improve access to care, treatment, and services for traumatized children and adolescents exposed to traumatic events. This resource includes descriptions of each type of trauma and evidence-based treatments that work.
Caring for Children in a Disaster (2017) – This collection of resources from the Centers for Disease Control and Prevention offers simple steps to protect children in emergency situations and help meet their needs during and after a disaster.
As states transform their health systems many are turning to Community Health Workers (CHWs) to tackle some of the most challenging aspects of health improvement, such as facilitating care coordination, enhancing access to community-based services, and addressing social determinants of health.
While state definitions vary, CHWs are typically frontline workers who are trusted members of and/or have a unique and intimate understanding of the communities they serve. This map highlights state activity to integrate CHWs into evolving health care systems in key areas such as financing, education and training, certification, and state definitions, roles and scope of practice. The map includes enacted state CHW legislation and provides links to state CHW associations and other leading organizations working on CHW issues in states.
Background Transition to adulthood might be a risk period for poor health in people with intellectual disabilities. However, the present authors could find no synthesis of evidence on health and well-being outcomes during transition in this population. This review aimed to answer this question. MethodPRISMA/MOOSE guidelines were followed. Search terms were defined, electronic searches of six databases were conducted, reference lists and key journals were reviewed, and grey literature was searched. Papers were selected based on clear inclusion criteria. Data were extracted from the selected papers, and their quality was systematically reviewed. The review was prospectively registered on PROSPERO: CRD42015016905. Results A total of 15 985 articles were extracted; of these, 17 met the inclusion criteria. The results of these articles were mixed but suggested the presence of some health and well-being issues in this population during transition to adulthood, including obesity and sexual health issues. Conclusion This review reveals a gap in the literature on transition and health and points to the need for future work in this area.
I was born profoundly deaf in both ears, which means I could only hear sound above 95 decibels. Without hearing aids, I could hear extremely loud sounds, such as a plane taking off or a train going by, only if I was near them. With hearing aids, I could hear sound at 40 decibels and up, so I could understand one-on-one conversations as long as there was no background noise, the person didn’t mumble and I could see his or her mouth clearly.
Before starting medical school, I got a cochlear implant, which helps me hear so much more than I could before. When I listen to music now, I can hear all the different sounds rather than one static sound, and it’s much easier to differentiate between the instruments. Understanding speech has also become much easier. I now communicate orally with hearing people and via sign language with deaf people. However, I am still deaf, and there are still times when I am unable to understand what people are saying, such as group settings where there’s a lot of ambient noise.
I chose osteopathic medicine because I heard from many patients who spoke highly of DOs, and the osteopathic philosophy resonated with me as well. I strongly believe in treating the person as a whole and that lifestyle factors can dramatically affect a person’s health. Ultimately, I hope to become an obstetrician-gynecologist. I’d like my practice to include caring for deaf patients—some deaf people have very little health literacy due to communication barriers growing up, which is something I hope to combat.
Culture and communication
Growing up as a deaf person has given me insights I hope to incorporate in my future practice as a physician. The first is the importance of maintaining eye contact during conversations. That’s not only because it helps me lip-read and understand what’s being said; eye contact shows that you are truly listening to the other person. It shows respect.
Secondly, because of growing up in the deaf culture, I’m very aware that all cultures are different. Physicians may not encounter deaf patients frequently, but they will definitely care for patients who have special needs when receiving medical care, such as a disability or an interpreter if English isn’t their primary language. As a patient, I’ve learned that I need to speak up about my needs, because sometimes people just are not aware. As a physician, I’ll know to ask patients what they need.
Tips for physicians
Physicians should keep in mind that American Sign Language is its own language, so written English doesn’t automatically translate to ASL. A deaf person who uses exclusively ASL and is not fluent in English might have trouble understanding written text, which is why some patients prefer to use an interpreter.
At the end of the visit, I appreciate being asked to repeat back my treatment plan so my physician can be sure I fully understand what was said. Receiving a written copy of my doctor’s recommendations is also very helpful—that’s probably true for any patient, not only those who are deaf.
If you’re unsure how to communicate with a patient who is deaf, or anyone with a disability, just ask! I suggest language such as, “I believe in offering top-notch accessible care. Do you need any special accommodations?” Then let the patients explain to you what they need, because they are the experts on themselves.
Healthcare access is important for all individuals, especially for people with disabilities. However, people with disabilities don’t always receive the healthcare they need. Several barriers can make it harder for them to access critical healthcare services or build optimal working relationships with their providers. Fortunately, by being aware of these barriers, we can overcome them with changes in design, training, and policy.
Rafat Hussain , Matthew P. Janicki , Marie Knox, Stuart Wark & Trevor Parmenter (2017): Perspectives about support challenges facing health workers assisting older adults with and without intellectual disability in rural versus urban settings in Australia, Journal of Intellectual & Developmental Disability, DOI: 10.3109/13668250.2017.1326589
Aims: Life expectancy for both sexes in Australia exceeds 80 years, with individuals with intellectual disability also increasingly living into older age. This research aimed to comparatively examine perceptions of staff supporting either older adults or age peers with lifelong intellectual disability.
Methods: This project asked 420 medical, health, and support workers about training adequacy, health services access, and trigger points for premature institutionalisation. This paper is based on a subsample of 196 respondents who provided quantitative and qualitative responses.
Results: There was considerable variation in confidence in supporting ageing individuals, while only 23.7% of doctors reported their training was adequate to support adults ageing with intellectual disability. A lack of services and poor carer health were identified as triggers for premature institutionalisation.
Conclusions: The study revealed key differences in staff perceptions of support provision and training adequacy when comparing ageing individuals with intellectual disability to the general ageing population.