adele crudden, b.j. lejeune, michele mcdonnall, & anne steverson, nrtc nancy o’donnell, hknc
TRANSCRIPT
Seniors with Dual Sensory Loss: Service Provider Training Needs
Adele Crudden, B.J. LeJeune, Michele McDonnall, & Anne Steverson, NRTC
Nancy O’Donnell, HKNC
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.
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.
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.
Introduction
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
Training model:• Historically “in person.” Effective, but numbers
are small• Confident Living Program for consumers
What do people want/need? Let’s research that!
Introduction
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
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.
DRRP Areas of Exploration Psycho-Social Needs Communication Issues and Systems (Interpreters,
SSPs, ALDs, etc.) Transportation Housing Employment Services Received Assistive Technology Prevalence
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
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
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
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
Current and Past
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
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
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%
Formats Used
Data Collection• January 17, 2014 – May 23, 2014
Survey formats• Online 47%• Phone 16%• Large Print 14%• Regular Print 4%• Braille 4%
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
Levels of Vision Loss
Visually Impaired- 16.7% Legally Blind- 47.2% Totally Blind or Light Perception Only 34.3% Unknown- 1.8%
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%
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%
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%
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%
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%
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%
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%
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.”
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.”
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.”
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%
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.”
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%
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…”.
Information for Service Providers
Awareness - 47% Communication – 27% Services 17% Interaction 16% Accessible info 8%
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.”
Who else needs education?
Local community members- 58.2% Family- 55.1% Friends- 54.1% Members of church or community of
faith- 44.9%
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%
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%
Limitations
Self report Convenience/volunteer sample Difficulty finding participants, especially
ones not involved in services or consumer groups
Discussion: Needs and Challenges
Communication Travel & Transportation Social and Personal Interactions Psycho-Social Needs related to
isolation and lack of understanding Print Access Employment
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.
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
Contact Information
Adele Crudden: [email protected] B.J. LeJeune: [email protected] Michele McDonnall:
[email protected] Anne Steverson: [email protected] Nancy O’Donnell: [email protected]