by Monica Elaine Campbell Monique Dozois Christine Wilson

1. Doing It Right Every Time - Providing Accessible Services to the Deaf in Acute Care and Palliative Care by Monica Elaine Campbell Monique Dozois Christine Wilson

2. INTRODUCTION A replica of a presentation made at several National conferences and to numerous community organizations WHO ARE WE? Current or past members of Ottawa Deaf Health Care Team in palliative care, long term care and acute care Active volunteers in community Recipients of numerous awards

3. BIOGRAPHIES OF PRESENTERS Monica Elaine Campbell Deaf since birth Attended oral deaf class, then mainstream at high school and university in PEI BSc honours, mathematics Worked for prov/fed governments Has a college certificate in Multidiscipline Palliative Care

4. BIOGRAPHIES (cont’d) Monique Dozois Deaf since birth Attended oral deaf class in Ottawa and Sir James Whitney School for the Deaf, Belleville Worked in Toronto Deaf Community with HIV / AIDS clients and at Bob Rumball Centre of the Deaf as a Life Skills staff Teaches American Sign Language (ASL) at Algonquin College

5. BIOGRAPHIES (cont’d) • Christine Wilson • ASL/English interpreter. ASL is first language as parents were Deaf • Registered nurse by profession • Worked with special needs populations and established a non-profit organization for persons with multiple disabilities and Deafness

6. Biographical Introductions More Biographical details about us are provided at the Link above

7. QUESTIONS A Deaf patient asks: Who will take care of me? Will my caregivers be well prepared to accommodate my needs? How much do they know about deafness?

8. QUESTIONS (cont’d) Caregivers should ask themselves: Will we be ready if we have a Deaf patient or a family member of a patient is Deaf? How can we be sure to access qualified information to meet the patient’s needs? It is a right of a Deaf person to have access to qualified interpreting services.

9. DISTINCT GROUPS OF PEOPLE WITH HEARING LOSS Term “hearing impaired” is: used by some people to describe those with partial hearing loss a medical or audiology term considered by Deaf community to be politically incorrect because “impaired” implies that something is wrong with the person

10. DISTINCT GROUPS (cont’d) The more accepted terms used to identify distinct groups of people with hearing loss are: Deaf – use sign language; share a common sense of pride in language and culture; socialize and support each other Deafness is natural – a positive identity NOT a disability Deafblind – are persons who are part of the culturally Deaf group and are visually impaired

11. DISTINCT GROUPS (cont’d) Other groups use spoken language, speechreading, text and occasionally sign language: Hard of hearing - hearing losses range from mild to severe Deafened - most hearing lost as teens or adults Oral deaf - were born deaf or became deaf prelingually, do not use sign language as children but may when adults All groups, but more rarely the culturally Deaf, may use hearing aids, cochlear implants or other assistive devices Presentation mostly about the culturally Deaf; however, can apply most of the contents to the other groups

12. IS THE INTERPRETER QUALIFIED? NELSON MANDELA’S FUNERAL

13. IS THE INTERPRETER QUALIFIED? The interpreter at the memorial service for Nelson Mandela was not a professional, qualified sign language interpreter. Each spoken language has its own sign language. The Deaf community complained – no one listened. Ask yourself: Do I know if the interpreter is qualified? Ignorance is no excuse for using an unqualified interpreter. This could be a liability.

14. INTERPRETER (cont’d) Some providers of health care and police services in Ottawa use non-qualified interpreters. Providing knowledge about accessibility for the Deaf and where to go to get the answers about truly accessible services in places such as: Hospitals Hospices Medical Clinics Champlain LHIN Home and Community Care (formerly CCAC)

15. INTERPRETER (cont’d) Interpreters must be provided when a Deaf person receiving services requires accommodation. Excellent example of accessibility: Canadian Blood Services How can you be sure you have a qualified professional interpreter? Minimal requirement: be active members of AVLIC (CASLI), the professional body of sign language interpreters in Canada, and follow the strict AVLIC Code of Ethics Training and experience are very important.

16. INTERPRETER (cont’d) www.blood.ca Blood Can I Donate American Sign Language Having a qualified professional interpreter is a right, not an extra Using a non-professional is a possible liability Need to budget for the cost of interpreting services

17. GOALS OF PRESENTATION To learn about: experiences of the Deaf; walk in our shoes the Deaf viewpoint if a patient or family member is Deaf how caregivers can communicate with the Deaf effectively the key role of interpreters, intervenors, Deaf interpreters and Deaf volunteers how to ensure accessible services for Deaf patients

18. DEAF VOLUNTEERS AND DEAF PATIENT

19. ACCESS TO CARE 2000: Senate report demanded better “Access for all Canadians” to hospice palliative care Senator Sharon Carstairs had the report interpreted into sign language versions. 1997: Supreme Court of Canada: Eldridge vs. British Columbia 2005: Ontarians with Disabilities Act was passed to be fully implemented in 2025

20. ACCESS TO CARE (cont’d) Barriers exist for many groups: Persons with disabilities, Aboriginals, visible minorities, marginalized groups, etc Barriers are compounded if there is intersectionality and more than 1 barrier exists

21. ACCESSIBILITY Ramps, automatic door openers, Braille on public elevator buttons and accessible washrooms are examples of accessibility. Professional, qualified interpreters define accessibility for many Deaf people.

22. Access to Interpreters is crucial “We had to argue with people at the hospital. It would have been so much easier to just bring in an interpreter so my mother could understand what was going on.”

23. THE DEAF COMMUNITY – WHAT’S DIFFERENT?? • Several factors influence how Deaf people cope with health care, illness, hospitalization, death and dying including: • Primary language • Schooling experiences • If parents are Deaf or hearing • Time of hearing loss • 90% of Deaf children are born to hearing parents of whom few are fluent in ASL or LSQ. • ASL is not the first language for many Deaf children.

24. THE DEAF COMMUNITY (cont’d) “Supper Table Syndrome” Deaf people feel left out of communication with family, friends and colleagues People sharing, discussing, joking Missed opportunity to learn language, social etiquette and behaviours Vital skills are not learned Conversation hard to follow, bounces from person to person Feel left out or gets short version of information Wonder who is talking, what the discussion is about Asks for information missed but hearing reluctant to repeat

25. THE DEAF COMMUNITY (cont’d) Stereotypesand negative views toward the Deaf Lack of knowledge or education by some professionals about Deaf culture and access needs Limited pool of interpreters, intervenors and Deaf interpreters Best lipreader believed to get only about 50% of what is spoken

26. Interpreters = Full access “It is hard to describe the feeling of having full access – it put me on a level playing field and helped me better deal with my grief.”

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28. DEAF FRIENDS / DEAF COMMUNITY These women are all Deaf and many were schoolmates at a School for the Deaf. They are celebrating a very special woman, who was ill. Betty-Ann is seated in the centre. After graduation – many stay in touch. Deaf friends have strong bonds and are more like family. Hearing people rarely stay in touch with early school friends.

29. AMERICAN SIGN LANGUAGE (ASL) ASL is the language of the culturally Deaf. ASL is not English. ASL has its own syntax and grammar. It is a combination of fascial expression, body language and signs. It is enhanced 3D! Hearing children learn language by picking up everything that is said around them. Deaf children learn language through what they see.

30. INTERDISCIPLINARY TEAM -Medical Staff -Nursing Staff -Social Workers -Family Members -Pharmacists -Deaf Volunteers -SLIAO -Hearing Volunteers -CHS -CNIB -Dieticians -PSWs -Interpreters/Intervenors -Caregivers -Rehab Therapists-Deaf interpreters -Physiotherapists -Spiritual Care Workers -Occupational Therapists -Deaf Team in Palliative Care / LTC / Acute Care How often are the Team members in red actually on the Team??

31. INTERDISCIPLINARY TEAM (cont’d) Many different professionals provide health care when a person is ill Deaf person looks for accessible services in Health Care Will there be an interpreter or intervenor? Do you have access to and include the professions represented in red text?

32. INTERDISCIPLINARY TEAM (cont’d) We encourage you to include them, so that when a Deaf person comes for help, he/she will be relieved to find you are accessible to everyone.

33. Support in Hospital “Volunteers stayed with her at the hospital and were with her when she died and supported her Deaf husband to help him understand what was going on.”

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35. CLAIRE’S FAMILY REUNION Claire, who was Deafblind and supported by our Deaf Palliative Care Team during her illness: lost contact with her daughter saw granddaughter occasionally wanted to be reunited with her family Our team located the family and organized a reunion, which was an emotional, beautiful time.

36. COMMUNICATION Important part of care delivery Discussion with medical professionals in person, in private, in own home, hospital, clinics, etc. Important to have simple, clear language, truth telling to fully impart a person’s medical information, treatment options, etc. whether you are Deaf or hearing For many Deaf people the information requires a sign language interpreter.

37. COMMUNICATION (cont’d) Supreme Court of Canada: Eldridge decision (1997) 2 Deaf people were denied appropriate care. They were denied sign language interpreters in hospital in British Columbia and felt their rights had been violated. Supreme Court agreed that: Full access through a sign language interpreter should have been provided to give full access to all of the information needed in order to have full information for their care.

38. COMMUNICATION (cont’d) The absence of interpreters impaired their ability to communicate with doctors and health care providers. They were at increased risk of misdiagnosis and ineffective treatment. Supreme Court of Canada ruled sign language interpreters must be provided in the delivery of medical services where doing so is necessary to ensure effective communication. The implementation across Canada is disappointing - TWENTY years later!

39. COMMUNICATION (cont’d) Supreme Court also ruled that in many circumstances the government must take action or special measures to ensure disadvantaged groups are able to benefit equally from ALL government services Ontarians with Disabilities Act Ensures decision makers at all levels of service, provide appropriate services to the Deaf as a RIGHT

40. DEAF SHARING EDUCATION AND EXPERIENCES

41. ACUTE CARE VOLUNTEER SUPPORT Volunteers provide support and advocacy in acute health care settings such as: Emergencies In patient units Psychiatric units Medical clinics, etc. As well as palliative care and long term care

42. PARTNERSHIPS IN HEALTH CARE FOR THE DEAF • Effective services need partnerships. • Ottawa Deaf Health Care Team volunteers are ready to provide support. • Qualified sign language interpreters in ASL and LSQ are provided by: • - SLIAO, Sign Language Interpreting Associates • Ottawa • - Canadian Hearing Society (CHS) Ontario • Interpreting Services • Qualified intervenors for Deafblind are provided by CNIB.

43. PARTNERSHIPS (cont’d) We need: Qualified interpreters, intervenors and Deaf interpreters(DI) for full access to ASL / LSQ helping to ensure clear communication between consumer and health care professionals DI working with hearing interpreters when communication by a Deaf consumer is unique (e.g. limited communication skills, sign language from a foreign country, regional dialect of sign language, etc.) Cultural facilitation Trained Deaf workers and volunteers

44. CULTURAL SENSITIVITY Importance of qualified, professional interpreters cannot be underestimated to ensure clear communication. A conflict of interest may arise if family or friends are used as interpreters because the message may be very sensitive or devastating and may thus affect everyone deeply. EXAMPLE: A young woman was expected to interpret the results of her tests for a possible brain tumor for her Deaf parents who were denied access to a sign language interpreter.

45. DOPDEAF OUTREACH PROJECT A Deaf person, with HIV / AIDS, contacted ACT (AIDS Committee of Toronto) ACT consulted various parties: mental health services of the Canadian Hearing Society (CHS) Deaf persons with HIV/AIDS Interpreters Deaf community representatives 1987: ACT established the Deaf Outreach Program (DOP) 1998: DOP transferred to Ontario Association of the Deaf (OAD)

46. DEAF OUTREACH PROGRAM (DOP) Beneficial, part time Staff: 2 Deaf, 1 interpreter and 1 hearing, all can sign Role included: Supporting Deaf clients with HIV / AIDS to meet their needs Educating service providers (Long Term Care homes, cancer treatment centres, etc.) how to accommodate Deaf community and provide accessible services Facilitating information sharing between Deaf patient and professionals

47. DOP (cont’d) Recruit, train volunteers and interpreters Workshops: accessing interpreting, Deaf culture, communication needs, etc. Integral members of Interdisciplinary Team: partnerships, cooperative services with hearing Ensured programs ready to serve the Deaf

48. DOP (cont’d) Cooperative services involved educating, working with and sharing experiences with: Casey House Hospice ACT staff health care professionals in hospitals, cancer treatment centres other health care settings

49. DOP (cont’d) 3 Examples of Service A hearing person, deaf as a result of illness, contacted ACT staff, who contacted DOP for information about: how to communicate, make use of TTY where to get services etc. This action reduced patient’s anxiety and enabled provision of services to accommodate his/her needs.

50. DOP (cont’d) A Deaf person in hospital, seriously ill and with partial paralysis experienced difficulty communicating. Deaf person was signing “green” Deaf Interpreter (DI) asked “Do you want ginger ale (signed GA and in a green can)?” or “a green apple?” answered with a slight “no” head movement and a pointing “down” DI followed patient’s eye downwards and saw a green blanket, asked if that was what he wanted, he answered with a slight “yes” head movement and a smile