Seniors with Dual Sensory Loss: Service Provider Training Needs

1. Seniors with Dual Sensory Loss: Service Provider Training Needs Adele Crudden, B.J. LeJeune, Michele McDonnall, & Anne Steverson, NRTC Nancy O’Donnell, HKNC

2. Objectives Participants will be able to: • Recognize the changing demographics of persons with dual sensory loss. • Identify important service needs of seniors with dual sensory loss. • Understand seniors’ perspectives about what is most helpful to them.

3. Introduction • The mission of the Helen Keller National Center for Deaf-Blind Youths & Adults is to enable each person who is deaf-blind to live, work and thrive in the community of his or her choice. Authorized by an Act of Congress.

4. Introduction • Work with youths and adults who are “deaf-blind” including: hard of hearing/low vision, deaf/low vision, blind/hard of hearing, low vision/hard of hearing, combined vision/hearing loss, dual sensory loss • 11 regional offices for local information, support and advocacy • HKNC philosophy - person centered, leading to enriched independent life within their community.

5. Introduction • Training options: long term training, short term home based services, two week summer seminar for high school students, eight week summer evaluation for high school students, a one week Confident Living Program for individuals 55 and better. • Largest segment of the deaf-blind population is seniors. Many do not self identify. Those who do need resources. • Families and professionals looking for information and support

6. Introduction • Training model: • Historically “in person.” Effective, but numbers are small • Confident Living Program for consumers • What do people want/need? • Let’s research that!

7. Changing Demographics • 7.8%-21% of older adults have dual sensory loss • Depending on the source • According to Administration on Aging’s website (2013): • In 2012, 13.7% of the U.S. population was an older American • Expected to be 19% by 2030 • Hearing and Vision loss occurs with age

8. Building on Previous Work • Persons Aging with Hearing and Vision Loss Disability Rehabilitation Research Project (DRRP) NIDRR Grant #H133A020701 (2002-2007) • Participatory Action Grant with focus groups, and a nationally representative series of 5 surveys of over 400 individuals over age 55 with hearing and vision loss.

9. DRRP Areas of Exploration • Psycho-Social Needs • Communication Issues and Systems (Interpreters, SSPs, ALDs, etc.) • Transportation • Housing • Employment • Services Received • Assistive Technology • Prevalence

10. Implications for Practice • More intentional activities directed at psycho-social adjustment • Better accommodations at peer support groups for persons with dual sensory loss • Better collaborations between service providers in aging, blindness, deafness and deafblindness • More outreach to home bound seniors with dual sensory loss – friendly visitor programs or SSPs

11. Implications for Practice • Increased awareness and use of assistive listening devices and hearing aids • Attention to symptoms of depression and development of programs and services to address psycho-social adjustment • Improved awareness of dual loss in support groups • Opportunities for collaborations with other services providers

12. Implications for Improved Policies and Service • Need for rehabilitation programs for older Deaf adults • Increased funding for Older Blind programs to include special accommodations for persons with hearing loss • Increased funding for hearing aids, SSP’s and Communication Systems • Better training for Rehabilitation and Independent Living Professionals in issues related to dual sensory loss in seniors

13. Primary Objectives of this Study • To determine who older people with hearing and vision loss feel need additional training in order to work and interact more effectively with them. • To determine what types of training (content) those individuals need. • To determine what they feel might be the most effective format in which to provide training. • To determine their self-perceived needs and challenges

14. Current and Past DRRP HKNC All ages considered as one group Emphasis on training needs of those around them Still hard to find those who are withdrawn and isolated Mean age = 70 Focus on meeting their needs by better equipping those who interact with them – families and professionals • Impact of age of onset of sensory loss • Emphasis on personal needs • The under-represented group – onset after age 55 • Mean age = 72 • Focus on their needs and coping strategies

15. Survey Development • Initial development • Phone call with HKNC personnel • Interview & discussion with two people • Senior with DSL • Daughter of senior with DSL • Focus group with seven seniors with DSL • Pilot test with same seven seniors • Formal pilot test with different formats

16. Recruitment Strategies • Former DRRP Participants/ NRTC Registry 56% • HKNC Announcement 15% • Deaf-Blind listserv 12% • Good Cheer Magazine 2% • NFB/ACB Deaf-Blind Divisions 2% • Other 14%

17. Formats Used • Data Collection • January 17, 2014 – May 23, 2014 • Survey formats • Online 47% • Phone 16% • Large Print 14% • Regular Print 4% • Braille 4%

18. Demographics • Race/Ethnicity • White- 88.6% • Black- 4.8% • American Indian- 3.8 % • Hispanic- 0.9% • Multiracial- 1.9% • Age • Mean= 70 • Range= 53 to 99

19. Levels of Hearing Loss • Mild- 16.7% • Moderate- 39.8% • Severe- 21.3% • Profound/Deaf- 19.4% • Unknown- 2.8%

20. Levels of Vision Loss • Visually Impaired- 16.7% • Legally Blind- 47.2% • Totally Blind or Light Perception Only 34.3% • Unknown- 1.8%

21. Communication Methods • Expressive Communication • Verbally (speech)- 81.5% • Sign Language- 10.2% • Multiple- 5.6% • Other- 2.8% • Receptive Communication • Verbally (listening)- 65.7% • Sign Language (Visual/Tactual)- 10.2% • Multiple- 12.0% • Other- 12.0%

22. Geographic Area • South- 37.4% • West- 25.2% • Midwest- 22.4% • Northeast- 14.9%

23. Most Important Needs • Transportation- 35.8% • Training to use technology (computer, iPad, cell phone, etc.)- 32.1% • Assistance with errands (grocery shopping, medical appointments)- 28.3% • Better ability to communicate with healthcare providers (doctors, nurses)- 18.9% • Information about devices to improve hearing- 18.9%

24. Most Important Needs Cont’d. • Better ability to communicate with service providers or other people in the community- 16.0% • Activities to participate in each day- 15.1% • Better ability to communicate with family- 14.1% • Others who have vision and hearing loss to talk to (peer support group)- 14.1%

25. Services Needed But Not Received • Transportation- 30.2% • Rehabilitation/Independent Living- 25% • Volunteers to assist with daily activities or errands- 19.8% • Senior Center- 17.7% • Community of Faith (church, synagogue, temple, etc.)- 13.5%

26. Services Needed But Not Received • Hearing aid sales/services- 12.5% • Service coordination (someone that coordinates or assists with medical treatment, benefits, finances, etc.)- 12.5% • Counseling- 10.4%

27. Greatest Challenges • Communication • Understanding and being understood 32% • In public/crowded places 12% • Travel • Transportation/inability to drive 23% • Mobility 14% • Interaction • In community – shopping, services 13% • Problems with socializing 7% • Attitudes of others 6% • Isolation (includes people not wanting to talk) 5% • Inability to recognize faces 4%

28. Greatest Challenges • Inability to access print 15% • Personal • Lack of independence/feeling like burden 7% • Coping/Acceptance 6% • Hearing or vision problems 6% • Employment 6% • Getting help when needed 6% • Costs of hearing aids 3%

29. Challenges: Senior Perspective • “I do not like to go to public places cause I do not hear very well. I always go with someone that can help me to see.” • “I think that people that deal with me and others like me … seem to have a lack of knowledge of how to communicate.”

30. Challenges… • “Mobility and getting to places, must depend on others due to hearing loss.” • “Finding a job. I look quite normal and sometimes I have a hard time making my family understand the extent of my hearing and vision loss; sometimes they expect me to perform activities that I am unable to do.”

31. Challenges… • “One of my challenges is getting any information for any topic. I live alone, so getting information is a challenge. I have to personally have someone tell me what I need to know through tactiling.”

32. Most Valuable Services • Transportation 24% • Rehabilitation services 18% • Personal assistance 18% • Good medical services 16% • Library services 12% • Communication facilitators 9% • Support groups 4% *communication devices 5%, media 18%, friends and family 5%, faith system 4%

33. Most Valuable Services • “The hearing services. Home maker services and Meals on Wheels. Support Group for the Blind - Senior people adjusting.” • “Talking books from the Library for the Blind.” • “Home care, and help with going to the grocery store.”

34. Service providers who need training • Medical providers – 33% • General public and community members -18% • Vocational Rehabilitation (general and blind agencies and deaf services) - 11% • Other service providers - 6% • Family and friends - 6% • Other – 9%

35. Comments about Service Providers • “Doctors and nurses seem to have the least practical approach to deaf-blind.” • “Counselors of vocational rehabilitation need more training on dual sensory loss.” • “Employers should be educated so that they would not be intimidated to hire someone who is deaf and blind. Also, all service providers, like doctors, nurses, and social workers…”.

36. Information for Service Providers • Awareness - 47% • Communication – 27% • Services 17% • Interaction 16% • Accessible info 8%

37. Comments about Information for Service Providers • “Personal bonding, sensitivities to one’s needs (meaning no pushing beyond consumers’ boundaries if not wanted).” • “To understand deaf/blind issues and the five main stressors that can overwhelm a deaf/blind person.” • “For the deaf blind person who is English and verbal speaking, the SSP must be more than just a compensated volunteer. They should have keen awareness of the deaf blind person’s need for voice over and using other phonics techniques when necessary for cognitive understanding.”

38. Who else needs education? • Local community members- 58.2% • Family- 55.1% • Friends- 54.1% • Members of church or community of faith- 44.9%

39. Need information to educate others • Yes, would like information about how to do this- 46.5% • Yes, would like training (instruction on how to do this)- 22.2% • No- 31.3%

40. Preferred Format for Information • Online (text)- 53.8% • Print- 50.5% • Audio (tape, CD, digital)- 23.7% • Video- 23.7% • Braille- 19.3% • Online (audio)- 14%

41. Limitations • Self report • Convenience/volunteer sample • Difficulty finding participants, especially ones not involved in services or consumer groups

42. Discussion: Needs and Challenges • Communication • Travel & Transportation • Social and Personal Interactions • Psycho-Social Needs related to isolation and lack of understanding • Print Access • Employment

43. Training Plans • HKNC’s training: • Formerly known as National Training Team (NTT) • Renamed – “Professional Learning” • Meet our new coordinators! • Include information on our new website to become the ‘go to” site for information and training.

44. Training Plans • HKNC’s training: • Consumer driven • Available in multiple modalities – voice, sign, visual description, full text • Research based – survey results will guide us as we create new materials to address needs • Will continue to update according to the expressed needs of the community

45. Questions?

46. Contact Information • Adele Crudden: crudden@ra.msstate.edu • B.J. LeJeune: bjlejeune@colled.msstate.edu • Michele McDonnall: mmcdonnall@colled.msstate.edu • Anne Steverson: acarter@colled.msstate.edu • Nancy O’Donnell: nancy.odonnell@hknc.org