Transcript Document
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
#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.
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 hearing18.9%
Better
ability to communicate with service
providers or other people in the community16.0%
Activities to participate in each day- 15.1%
Better ability to communicate with family14.1%
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.”
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%
Medical
“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
Formerly
training:
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: [email protected]
B.J. LeJeune: [email protected]
Michele McDonnall:
[email protected]
Anne Steverson: [email protected]
Nancy O’Donnell: [email protected]