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
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


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

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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]