Disability Stigma and Your Patients | Rehabilitation Research and Training Center on Aging With Physical Disabilities

Source: Disability Stigma and Your Patients | Rehabilitation Research and Training Center on Aging With Physical Disabilities

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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

  • Do speak 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.
  • Do use 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.
  • Do ask 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.
  • Do use 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’t touch, 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.
  • Do introduce your patients to disability support groups. Organizations like the National Multiple Sclerosis Society(link is external) or the United Spinal Association may have local chapters in your area. Your local independent living center may also have resources.
  • 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.

Additional Resources

Society for Disability Studies: www.disstudies.org(link is external)

Disability law and accommodations in health care:  http://adata.org(link is external)

List of national disability advocacy and support organizations: www.ncdj.org/resources/organizations/(link is external)

Alliance for Disability in Health Care Education: www.adhce.org(link is external)

References

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.

Authorship:

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.

Disclaimer:

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.

Suggested Attribution:

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

Health Care for People with Intellectual and Developmental Disabilities across the Lifespan

Source: Health Care for People with Intellectual and Developmental | I. Leslie Rubin | Springer

  • Offers an unique lifespan approach on Health Care for People with Intellectual and Developmental Disabilities
  • Addresses the Clinical as well as the Systems of Delivery of Health Care
  • Provides a practical approach to dealing with health and well-being of people with intellectual and developmental disabilities

Health Promotion in Community Based Organizations: Understanding the Needs and Capacity
Jasmina Sisirak, PhD, MPH and Beth Marks, PhD, RN, FAAN
May 17th, 2018

Webinar 5: Health Promotion in Community Based Organizations: Understanding the Needs and Capacity

3:00 pm, Eastern Standard Time

Register for Webinar

Presenters: Jasmina Sisirak, PhD, MPH (jsisirak@uic.edu) and Beth Marks, PhD, RN (bmarks1@uic.edu)

Abstract: Focusing only on motivating individuals with intellectual disabilities (ID) to change their behaviors oftentimes results in many people returning to unhealthy behaviors because their environment does not recognize the influence and importance of organizational attitudes, policy, and “corporate cultures” on individual behavior change. We evaluated organizational health promotion programs and services, resources, organizational culture and employee’s perception of knowledge, skills and attitudes in over 70 community based organizations (CBOs) in seven states. We will share the results of our findings and recommendations for improving health promotion capacity within CBOs.

Presenter bios:

Jasmina Sisirak, PhD, MPH is an Associate Director of Training and Dissemination at the RRTCDD and the Research Assistant Professor at the Department of Disability and Human Development, University of Illinois at Chicago (UIC). Jasmina received her PhD in Public Health with emphasis in Epidemiology and Community Health. Her research interests consist of nutrition, health literacy, health promotion and curriculum development for people with intellectual and developmental disabilities and their caregivers. Jasmina is also Associate Director of the HealthMatters Program.

Beth Marks, RN, PhD, FAAN is a Research Associate Professor at the Department of Disability and Human Development, UIC and the Associate Director for Research in the RRTCDD. Her research interests include the empowerment and advancement of persons with disabilities through health promotion, health advocacy, and primary health care. She has published numerous articles and books related to health promotion, health advocacy, and primary health care for people with disabilities. Dr. Marks is also the Director of the HealthMatters Program.

Anxiety and Depression in Adults with IDD: Prevalence, Risk Factors, and Applications
Kelly Hsieh, PhD and Haleigh Scott, PhD
April 19th, 2018

Webinar 4: Anxiety and Depression in Adults with IDD: Prevalence, Risk Factors, and Applications

3:00 pm, Eastern Standard Time

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Presenters: Kelly Hsieh, PhD (hsieh@uic.edu) and Haleigh Scott, PhD (hscott8@uic.edu)

Abstract: Depression and anxiety are the most frequent mental disorders in adults with intellectual and developmental disabilities (IDD). People with IDD may experience more life events due to different living circumstances and limited coping skills. Dr. Hsieh will present current research on risk factors of depression and anxiety and Dr. Scott will provide clinical strategies to help adults with IDD to manage depression and anxiety by improving coping skills to reduce stressors.

Presenter bios:

Kelly Hsieh, PhD is a Research Associate Professor in the Department of Disability and Human Development, and Associate Director of Evaluation and Statistics for the RRTC on Developmental Disabilities and Health. Her research interests explore the relationship between health risk behaviors and health outcomes including obesity, falls, cardiovascular disease, mental health, and dementia across lifespan among individuals with intellectual and developmental disabilities using epidemiological approach. She is also interested in investigating efficacy of interventions to improve well-being and quality of life for adults with developmental disabilities.

Haleigh Scott, PhD (hscott8@uic.edu), is a Postdoctoral Fellow at the University of Illinois at Chicago in the Department of Disability and Human Development.  She is a graduate of The Ohio State University’s Intellectual and Developmental Disability Psychology program. Haleigh’s research focuses on the well-being of people with intellectual and developmental disabilities (IDD). Specifically, she is interested in how psychosocial factors influence mental and physical health outcomes and measurement issues in obtaining health related information from people with intellectual and developmental disabilities.

Partnering to Transform Healthcare with People with IDD
Tamar Heller, PhD and Sarah Ailey, PhD, RN, CDDN, APHN-BC
March 15th, 2018

Webinar 3: Partnering to Transform Healthcare with People with Intellectual and Developmental Disabilities

Thursday, March 15, 2018

Play recording (1 hr 1 min)

Handout: Tackling Health Disparities

Video: Daphne Ron: Good and Bad Experiences with Health Care

Presenters: Tamar Heller, PhD (theller@uic.edu) and Sarah Ailey, PhD, RN, CDDN, APHN-BC (Sarah_H_Ailey@rush.edu)

Abstract: Disparities in treatment of people with intellectual disability in health care leads to increased morbidity and mortality and costs, and decreased quality of life. Proactive work for practical, implementable solutions is needed, as well as consensus and action plans on best practices and research and policy agendas. The Partnering to Transform Healthcare with People with Disabilities Conference provided an opportunity for self-advocates across disability communities (intellectual, physical, sensory and mental) to partner with national experts (providers and policy makers, executives, insurers, regulators and others) to synthesize current innovations and improvement efforts in health care with people with disabilities, reach consensus on best practices, propose needed research and policies, and develop action plans. We will report findings from the conference regarding currently implementable solutions, consensus on best practices and research, and policy agenda recommendations for people with intellectual disability. We invite participants to join the dialogue.

Presenter bios:

Tamar Heller, PhD, Distinguished Professor, heads the Department of Disability and Human Development, University of Illinois at Chicago (UIC) and its University Center of Excellence in Developmental Disabilities. She also directs the Rehabilitation Research and Training Center (RRTC) on Developmental Disabilities and Health, and is Co-PI of the RRTC on Community Living Disability Policy and the Family Support RTC. Her research focuses on health and long-term services and supports for individuals with disabilities and their families. She was President of the Association of University Centers on Disabilities (AUCD) board, and co-founder of the Sibling Leadership Network. Her awards include the 2009 Arc of Illinois Autism Ally for Public Policy Award; the 2008 Lifetime Research Achievement Award, International Association for the Scientific Study of Intellectual Disabilities, Interest Group on Aging; the 2009 Community Support Services Community Partner Award, the 2010 College of Applied Health Sciences, UIC Outstanding Researcher Award, and the AUCD 2012 International Award.

Sarah Ailey, PhD, RN, CDDN, APHN-BC, is a nurse researcher and clinician who works to improve the health and health care of people with disabilities, concentrating on intellectual disabilities. Her research and scholarly practice are concentrated on translating research to community and inpatient hospital settings to improve the lives of individuals with intellectual disabilities. She is investigating the effect of the Steps to Effective Problem-solving (STEPS) program in group homes, funded by an R01 grant from the Eunice Kennedy Shriver Institute. Ailey has been a member of the Americans with Disabilities Act Task Force at Rush University Medical Center since 2003. She also co-chairs (with Robyn Hart) the Adults with Intellectual and Developmental Disabilities Committee at Rush since 2007; the collective work at Rush to improve patient care for this population has been described as the “gold standard” in The Hospitalist, a publication of the American College of Physicians.

Beyond Care Coordination: Cross-Systems Care Integration for Adults with IDD
Betty Geer, DNP, RN, CPNP · Brystal Karber, BA · Nichole Guerra, DBA
February 15th, 2018

RRTCDD and The Arc 2018 Health and Wellness Webinar Series

Webinar 2: Beyond Care Coordination: Cross-Systems Care Integration for Adults with Intellectual and Developmental Disabilities

3:00 pm, Eastern Standard Time

PLAY RECORDING (1 hr 6 min)

Download Presentation Slides

Abstract:

This presentation will define a new experimental role known as the Care Integration Specialist and explain how this role functions within a clinical setting, coordinating care across healthcare and community support systems. Preliminary and anecdotal data will be shared showing how this role positively impacts healthcare and quality of life of individuals with intellectual and developmental disabilities.

Presenter bios:

Nichole Guerra is a Research Coordinator at The Resource Exchange Research Center. She will earn her Doctor of Business Administration in June 2017. Her educational background is in Health Science and Nonprofit Management in the Human Services industry. Mrs. Guerra’s career in the field of intellectual and developmental disabilities began in 2005. She has extensive experience in residential and day program settings, case management, and adapted physical activities.

Betty Geer became Research Center Director for The Resource Exchange in Colorado Springs in September 2016. Her background includes more than 30 years cumulative experience in a broad range of fields, including public health research, nursing, graphic design, economic development, and architecture. She holds five degrees from the University of Colorado: Bachelor of Fine Art, Bachelor of Science in Nursing, Master of Science in Nursing, Master of Architecture, and Doctor of Nursing Practice. Dr. Geer also completed a Postdoctoral LEND Fellowship at JFK Partners at the University of Colorado, Anschutz Medical Campus. She is currently PI for the Care Integration and Quality of Life study, the research portion of the collaborative project entitled Health Coordination for People with Intellectual and Developmental Disabilities (IDD).

Brystal Karber, Bachelor of Arts in Cultural Anthropology and a Teaching Assistant at University of Colorado.

Blind Spot: Understanding a disabled son’s vulnerability as a state of grace

American Journal of Nursing

Blind Spot: Understanding a disabled son’s vulnerability as a state of grace by Diane Stonecipher, BSN, RN

“His IQ may have been devastated, but his EQ has not. He has lived 25 years on this earth and his experiences are valuable and visceral to him.”

Diane Stonecipher is a nurse living and working in Texas. Contact author: bobcipher@yahoo.com. 

Congressional Testimony on Aging – Tamar Heller

Tamar Heller, RRTCDD director, gave testimony before the United States Senate Special Committee on Aging on October 25, 2017. Her testimony addressed a number of issues facing older adults with intellectual and developmental disabilities including changes in health and health promotion, support for family caregivers, and retirement options. Download Full Testimony.

For a video of the entire hearing titled “Working and Aging with Disabilities: From School to Retirement” see the following link: https://www.aging.senate.gov/hearings/working-and-aging-with-disabilities-from-school-to-retirement

XCEL Training

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.

 

Source: Florida Center for Inclusive Communities (FCIC)

XCEL Training

Accessible Hospitals and Medical Care Facilities – A Refresher Webinar

Source: Accessible Hospitals and Medical Care Facilities – A Refresher

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.