Adele Crudden, B.J. LeJeune, Michele McDonnall, & Anne Steverson, NRTC Nancy O’Donnell, HKNC

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.

 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.

 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.

 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

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

 7.8%-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

 Persons Aging with Hearing and Vision Loss Disability Rehabilitation Research Project (DRRP) NIDRR Grant #H133A ( )  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.

 Psycho-Social Needs  Communication Issues and Systems (Interpreters, SSPs, ALDs, etc.)  Transportation  Housing  Employment  Services Received  Assistive Technology  Prevalence

 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

 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

 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

 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

DRRP  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 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

 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

 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%

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

 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

 Mild- 16.7%  Moderate- 39.8%  Severe- 21.3%  Profound/Deaf- 19.4%  Unknown- 2.8%

 Visually Impaired- 16.7%  Legally Blind- 47.2%  Totally Blind or Light Perception Only 34.3%  Unknown- 1.8%

 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%

 South- 37.4%  West- 25.2%  Midwest- 22.4%  Northeast- 14.9%

 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%

 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%

 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%

 Hearing aid sales/services- 12.5%  Service coordination (someone that coordinates or assists with medical treatment, benefits, finances, etc.)- 12.5%  Counseling- 10.4%

 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%

 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%

 “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.”

 “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.”

 “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.”

 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%

 “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.”

 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%

 “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…”.

 Awareness - 47%  Communication – 27%  Services 17%  Interaction 16%  Accessible info 8%

 “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.”

 Local community members- 58.2%  Family- 55.1%  Friends- 54.1%  Members of church or community of faith- 44.9%

 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%

 Online (text)- 53.8%  Print- 50.5%  Audio (tape, CD, digital)- 23.7%  Video- 23.7%  Braille- 19.3%  Online (audio)- 14%

 Self report  Convenience/volunteer sample  Difficulty finding participants, especially ones not involved in services or consumer groups

 Communication  Travel & Transportation  Social and Personal Interactions  Psycho-Social Needs related to isolation and lack of understanding  Print Access  Employment

 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.

 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

 Adele Crudden:  B.J. LeJeune:  Michele McDonnall:  Anne Steverson:  Nancy O’Donnell: