educational programs

1. Women with Disabilities educational programs

2. Communication an introduction to barriers and solutions

3. "the transmission of information, thoughts, and feelings so that they are satisfactorily received or understood” What Is Communication? Gerteis M, Edgman-Levitan S, Daley J, et al. (eds). Through the Patient’s Eyes: Understanding and Promoting Patient Centered Care. 1993; San Francisco: Jossey-Bass. Available online: http://www.arhp.org/healthcareproviders/onlinepublications/QRGPACC.cfm

4. Communication and Quality Care “For me, quality care is knowing that the provider is really good technically and also willing to take the time to communicate with me and explain what's happening every step of the way. Sometimes you get one and not the other. If you get both together, that's perfect!” ~ Marta Redding

5. Goals of Communication in the Health Care Setting • Identify and respect preferences, needs, and values • Elicit complete information • Demonstrate compassion and understanding • Ensure therapeutic goals correspond with desires • Transmit technical information in lay terminology • Enhance overall comfort with health care experience

6. Communication with Women with Disabilities Often Falls Short • Indicate higher rates of dissatisfaction with health care • More than 13% do not discuss concerns Iezzoni LI, Davis RB, Soukup, O'Day B. (2003). Quality dimensions that most concern people with physical and sensory disabilities. Archives of Internal Medicine, 163:2085-2092.

7. How Can We Do Better? • Identify and examine roadblocks • Provider barriers • Patient barriers • Structural barriers • Develop and implement solutions • Attitude, knowledge, skills • Systems improvement

8. Communication Roadblocks • Provider barriers • Patient barriers • Structural barriers

9. Provider Barriers Attitude A provider’s attitudes about disability can negatively impact the woman’s health care experience Veltman A, Stewart D, Tardif G, Branifan, M. Perceptions of Primary Healthcare Services Among People with Physical Disabilities. Part 1: Access Issues. Medscape General Medicine 2001; Volume 3, Number 2.

10. AttitudeQuality of Life “The neurosurgeon told me that he was only interested in quality of life and that in no way would he be looking to prolong my life if he didn't feel the quality would be acceptable. However, neither he nor anyone else has asked me what criteria I would use in judging what was an acceptable quality of life. I am very worried that if I get admitted unconscious or without the power of speech, he will make a decision based on his judgment and his criteria about what is an acceptable quality of life.” Iezzoni L, O’Day, B. More than Ramps: Improving Health Care Quality for People with Disabilities. Oxford University Press, 2006. Chapter 6, page 99.

11. AttitudeAutonomy “One of my clinicians wouldn’t explain anything to me. To him everything's so visual and I’m blind. He couldn't understand how I could conceive of what he was trying to tell me. When I talked to him, he'd say, ‘Well, that's complicated.’ And I'd say, ‘You know, I'm pretty smart. You could try to explain it to me.’ After I convince him, he finally explains things to me, and it's fine.” Iezzoni L, O’Day, B. More than Ramps: Improving Health Care Quality for People with Disabilities. Oxford University Press, 2006. Chapter 8, page 144.

12. AttitudePain “I had a horrible experience when I needed to have a mole removed from my leg. The provider just went ahead and started the procedure without giving me any anesthetic. When I complained that it hurt, he said: “It can’t hurt– you’re paraplegic, you can’t feel anything below your waist.” Health professionals are often ignorant about this and treat me as though my pain isn’t real.” Miaskowski C. The Role of Sex and Gender in Pain Perception and Responses to Treatment,” in R.J. Gatchel and D.C. Turk, eds. Psychosocial Factors in Pain: Critical Perspectives (New York: The Guildford Press, 1999): 401–411, at 406.

13. AttitudePain “If there is a single experience shared by virtually all chronic pain patients it is that at some point those around them — chiefly practitioners, but also at times family members — come to question the authenticity of the patient's experiences of pain. This response contributes powerfully to patients' dissatisfaction with the professional treatment system and to their search for alternatives. ... Reciprocally, chronic pain patients are the bête noire of many health professionals, who come to find them excessively demanding, hostile, and undermining of care. A duet of escalating antagonism ensues, much to the detriment of the protagonists.” Kleinman A. The Illness Narratives. New York: Basic Books, 1988, page 57.

14. AttitudePsychiatric Disability “Telling a clinician about my psychiatric disability is really important—for good communication, to guard against interactions between psychotropic and other medications, and other treatment. You need to be honest and not hide a fact because you’re embarrassed or too anxious. But once a provider finds out I have a psychiatric disability, he questions my judgment on all kinds of things and wonders whether I’m reporting things accurately. It’s not a relationship of trust, and that’s the thing that’s so frustrating is that you just have to go through people. It’s traumatic. It means having to shop again and having to shop again, and having to confront the clinician and say, ‘You’re not really listening.’” Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves. National Council on Disability January 20, 2000.

15. Provider Barriers Knowledge • Women with disabilities want providers with basic knowledge–and who are willing to admit when they don’t know • Medical schools offer little training Breaking Down Barriers to Health Care for Women with Disabilities: a White Paper from a National Summit, December 2004. U.S. Department of Health and Human Services, Office on Disability, Office on Women’s Health. Available online: http://www.hhs.gov/od/summit/whitepaper.doc

16. KnowledgeThe Disability Experience “I love my provider dearly, but she doesn't know a lot about spinal cord injury. One time my shoulders were really hurting. So she told me, ‘Don't use your arms so much.’ I'm a paraplegic, and all I have is my arms! I do everything with them. I told her she was absurd to say something like that to me.” Iezzoni L, O’Day B. More than Ramps: Improving Health Care Quality for People with Disabilities. Oxford University Press, 2006. Chapter 6 page 106-107.

17. KnowledgeSpecific Health Care Needs “I always have to keep reminding my provider about certain things that need to be checked because of my MS, like my thyroid. When I first went to my new primary care provider, I asked what he knew about MS and he said, ‘Well, not much, but I'll find out.’ I don't think he knows very much.”

18. KnowledgeSpecific Health Care Needs “I was born with my disabilities. I'm 25 years old. I've been going to the hospital for children my whole life, and I was nervous to switch over. A couple of appointments with adult providers didn't go so well, so I'm thinking, Why did I do this?...I felt the clinicians had very little knowledge. A couple of my concerns had to do with urological issues and catheterization. I needed to do a lot of explaining, but I didn't think it was necessary to explain things to the provider! That in itself made me uneasy. I've had excellent care my whole life. Now I'm throwing all my trust into people whom I don't know that I do trust. Now I go to each provider thinking, Do I have to educate them from day one about everything?" Iezzoni L, O’Day B. More than Ramps: Improving Health Care Quality for People with Disabilities. Oxford University Press, 2006. Chapter 8, page 140.

19. KnowledgeSpecific Communication Needs “In my work as an ASL interpreter in a health care setting, I often encounter health professionals who are unfamiliar with sign language interpreting. Some of them take the time to orient themselves and end up communicating well with the patient. Others barrel on ahead and make all kinds of mistakes that lead to misunderstandings, lack of completeness, and patient dissatisfaction.”

20. Provider Barriers Skill Issues specific to women with disabilities can get lost in the larger picture

21. Skills • Listening • Asking questions • Developing co-expert model of care • Use of proper etiquette • Incorporating communication aids • Handling frustration

22. Patient Barriers

23. Patient Barriers Negative Prior Experiences

24. Impact of Negative Experiences:Internalized Oppression Negative societal attitudes about disability Padilla M. “But You’re Not a Dirty Mexican": Internalized Oppression, Latinos & Law , 7 Texas Hispanic Journal of Law and Policy 61-113, 65-73 (Fall 2001) http://academic.udayton.edu/race/01race/latinos01.htm

25. “Flight” Response Distrust and disappointment Failure to disclose key information Poor adherence to treatment recommendations Avoidance of care altogether Incomplete or inappropriate care Poor health outcomes Steinberg AG, Wiggins EA, Barmada CH, Sullivan VJ. Deaf women: experiences and perceptions of healthcare system access. J Women's Health (Larchmt). 2002 Oct;11(8):729-741.

26. “Fight” Response Distrust and disappointment Demanding or angry manner Alienation of health care personnel Incomplete or inappropriate care Poor health outcomes

27. Ideal Model of Care • Provider and woman become co-experts: • Provider offers medical / technical expertise • Woman brings intimate knowledge about her body and its needs • Negotiate a shared agenda together: • Short-term goals (each visit) • Longer-term goals (future visits, roadmap for health) • Anticipate frustrations and lay a groundwork for working them out

28. Structural Barriers • Time • Cost • Provider gatekeeper role

29. Increased Time Is Needed… …To provide assistance …To communicate …To complete forms …To coordinate care …To research

30. Cost • More costly to care for women with disabilities, due to… • Interpreter fees • Equipment purchases • Additional staff costs • Decreased productivity

31. Gatekeeper RoleProviders Control Access to… • Medical services • Independent living and community services

32. Gatekeeper Role: Impact • Access to services affects ability to live independently • Restricted access results in lower level of functioning and lower quality of life • Women may feel angry and resentful when provider refuses requests • Women appreciate advocacy efforts on their behalf

33. Finding Solutions Strategies to Enhance Communication

34. Identify Personal Biases “It’s important to identify and address our beliefs so they don’t interfere with care. When I first started working with women with disabilities, I got called on use of language like ‘wheelchair-bound,’ instead of ‘using a wheelchair.’ This choice of language reflected an unconscious bias that people with disabilities lead lives that are limited and trapped. I also noticed that I dumbed down my language when talking with people who were blind or deaf, as though having a disability automatically meant they weren’t smart enough to understand normal conversation.”

35. Women with disabilities… Are angry and bitter Are unable to live independently Are passive and in need of care Are unable to speak on their own behalf or understand what is said Are unable to get exercise or eat properly Are not victims of domestic violence or rape Are disinterested in or unable to parent Do not have non-disability-related health problems Have no sexual feelings/arousal and are not sexually active Are promiscuous if their disability is psychiatric Are trouble makers if they speak out or complain Don’t know their own health needs if their disability is psychiatric Are dangerous if their disability is psychiatric Examine and Debunk Common Myths

36. Learn About the Disability Experience National Disability Council http://www.ncd.gov/brochure.htm Social Security Disability http://www.socialsecurity.gov/disability Federal Disability Web Portal http://www.disabilityinfo.gov Disability Resources http://www.disabilityresources.org Memoirs of the Disability Experience http://katrinadisability.info/disabilitybooks.html Academic journals and other media http://www.uic.edu/orgs/sds/links.html#media

37. Learn About Disability-Specific Health Needs • Ask! • Women with disabilities often know their bodies and are experts about their own needs • Research disease-specific needs • Read, consult, etc.

38. Learn About Disability-Specific Communication Needs and Methods • See module: Communicating Using Interpreters and Communication Aids

39. Attend to CommunicationConsciously and Continuously • Good communication increases patient satisfaction • Correlation between effective communication and improved health outcomes have been documented

40. Communication Begins Before a Woman Arrives at the Office and Continues After Her Visit • Smooth and successful communication must include discussion of: • Woman’s access to the office • Care while in the office • Continuity of follow-up care after leaving the office ASTHO (Association of State & Territorial Health Officials, Washington, DC) Fact Sheet: “Access to Preventive Health Care Services for Women with Disabilities.” Available online at: http://www.astho.org/pubs/WomenwithDisabilitiesFactSheet2.pdf

41. Before the Visit • Make sure office is in compliance with ADA requirements regarding accessibility • Review ADA requirements regarding availability of interpreter, etc. • Make sure office staff is adequately trained (etiquette, transfers, etc.) • Set up a protocol to communicate with the woman BEFORE the visit to determine needs and plan appropriate response

42. Transportation Needs • Directions from bus stop, etc. • Instructions re: accessible parking • Assistance with paratransit services

43. Communication Needs • Sign language interpreters • Use of other communication devices that require extra space or expertise American Medical Association, available online: http://www.ama-assn.org/ama/pub/category/4616.html

44. Other Needs • Appropriate area in waiting room to accommodate special equipment or needs • Transfers to and from examination equipment that require assistance • Need for larger exam room or accessible exam table • Assistance completing medical forms

45. During the Visit • Create a conducive atmosphere • Explicitly discuss each team member’s role in care • Use proper etiquette when working with interpreters or personal care assistants • Obtain a complete health history • Communicate appropriately during the examination • Provide pertinent counseling

46. Create a Conducive Atmosphere • Welcoming environment • Non-verbal cues • Posted non-discrimination policy • Appropriate educational materials on display

47. Explicitly Discuss Role of Each Team Member in Care • Provider • Woman • Office personnel • Interpreter • Personal care assistant

48. Office Staff • Help create and maintain a safe and efficient process of care: • Guide a woman who is blind or has low vision to the examination room • Ensure safe transfer on and off of examination equipment • Complete medical forms for those who do not read print • Provide other assistance as requested

49. Sign Language Interpreter • Facilitates communication with a woman who is deaf • Translates what you say word-for-word into sign language and what the woman who is deaf says back into spoken English • See Communicating Using Interpreters and Communication Aids for more information

50. Personal Care Assistant • Assists the woman to complete physical or cognitive tasks • Communicates directly to the woman • Does not speak for the woman