…Who We Are…
What HLAA Leaders Should
Know About HLAA History
Webinar Presentation 03/12/2014
Prepared and Facilitated by
Julie M Olson MS, Past HLAA Board
President & HLAA Advocate/Educator
This presentation was originally shared with delegates
at the 2013 HLAA Convention in Portland OR
Howard E. ‘Rocky’ Stone
1925 - 2004
In 1979…
There were no organizations for people
who are ‘partially deaf’.
The hard of hearing population was
lumped in with the deaf population.
Organizations in existence were not
interested in Rocky’s ideas because he
focused on remaining in the hearing
mainstream.
We are PEOPLE first…
 Our hearing loss does not
define who we are.
 Our hearing loss is only one
of many unique traits that
make us who we are.
PREAMBLE to the SHHH Constitution
We are people who do not hear well,
but are not deaf. We tend, increasingly,
to be isolated. The existing pattern of
community life lacks both means of
communication and institutions for us
to solve our special problems and live
normal lives. For too long, too many of
us have accepted a loneliness we are
unable to explain to our friends or even
to our families. (1979)
 KEY WORDS
 Isolation
 Loneliness
 No Support from Existing
Institutions
 We have Accepted This
 Nobody Understands Us!
We can’t
communicate easily
and
We Don’t Know How
to Help Ourselves!
We are living with a
Hurt that Doesn’t Show!
GOAL: Make Hearing Loss an
Issue of National Concern.
In the Beginning… 1979 - 1984
• The SHHH Office is in Stone’s
home.
• Funding comes from family &
friends.
• Membership promoted for $7
annually.
• PR in media draws interest.
1980
Rocky introduces induction loops
at a D.C. Archdiocese Event.
The first Shhh
Journal is
published.
The cover: “Would
You Believe an
Induction Loop?
1980 – Gainesville GA is home of the
1st chartered SHHH chapter!
1982
 Chapters start developing.
 A ‘sister’ organization forms in
Australia.
 SHHH gets its ‘feet wet’ in
advocacy related to telephone
compatibility with hearing aids.
1983
SHHH leases its first office.
The volunteer board has 10
members.
Publishes report on noise
pollution.
Talks of need for NIH to establish
NIDCD
1983
SHHH has
60 chapters
and several
developing
groups.
1984
First national convention is held in
Chicago. 400 People attend.
400 people are exposed to the
wonders of hearing assistive
technology! ~ Audio Loops
A 24 member volunteer board is
elected at the convention.
National Board Struggles with
Barriers to Communication at its
Meetings even with loop technology.
Initiates a Note-taking System
 Handwritten summary on board
 Handwritten summary on overheads
 Computer Assisted Note-taking by staff
Ultimately leads to…
CART
Communication Access Realtime Translation
1985
Self Help for
Hard of Hearing
PEOPLE, Inc
1980-1985
Estimate 10 million ‘HEARING
IMPAIRED’ in USA
===
Two million of that number are
“deaf”.
WHAT are WE?
Gallaudet College students
demand ‘Deaf President Now’!
The term ‘hearing impaired’
becomes politically incorrect
So WHO are WE?
1988
The National Institutes of
Health adds NIDCD.
(National Institute for the
Study of Deafness & other
Communication Disorders.)
1988
SHHH is invited to
participate in the writing
of legislation that would
become…
THE AMERICANS WITH
DISABILITIES ACT.
(Signed into law in 1990)
Communication Access
is Defined by ADA.
 FM frequencies are released for use outside Schools for
the Deaf.
 Caption capability is required in larger TVs.
 Public venues must provide access on request with 24
hours notice. (Too few people ask for it.)
CART is recognized as an accommodation.
1
9
9
3
Terminology becomes
more clearly defined.
 Deaf
 deaf
 late deafened
 hard of hearing
 Hearing impaired
1993
The internet is here to stay
* E-mail streamlines Board
communication
* SHHH starts to consider a
website
Huge changes are about to occur
in the telephone industry.
SHHH is on the alert.
1993 – 1996 - Estimate: 24 – 28
million people in U.S. have
hearing loss.
2 Million of that number are deaf.
Of that 2 million; 600,000 are
culturally Deaf users of ASL.
1995-1996 – To Present
SHHH further defines itself
with a series of Policy Papers.
Mark Ross PhD authors them.
 We believe cochlear implants
are a positive development for
both adults and children.
 We view the sense of hearing as
a birthright.
 Hard of hearing children’s
educational needs are different
from those of deaf children.
 Vocational Rehabilitation is equally
as important to hard of hearing
people as it is to deaf people.
 We believe infants should be
screened for hearing loss at birth.
 Telecoils should be promoted by
those who sell hearing aids.
 We encourage dispensing
professionals to provide group
orientation programs to new
hearing aid users.
 We are open to exploring different
hearing aid delivery systems. (2012)
The more you know about HLAA’s
positions on issues, the more
effectively you can advocate.
Advocacy begins at the grassroots
level and moves upward to state
and national levels.
YOU…
….are the key to effecting change!
1995 – 2002
• Research symposium is added
to convention format.
• SHHH addresses cell phone
compatibility
• SHHH collaborates with NTID &
US Dept. of Education on
proposed rules for IDEA
• Starts pushing for newborn
screening.
• Establishes umbrella
organization for chapter
affiliates for 501©3 status.
• Solidifies mission statement
2003
• Hearing Aid Tax Credit Bill is
introduced in HR with SHHH
support.
• SHHH begins urging Medicare
& Medicaid to cover cochlear
implants.
• Captioned phones are introduced.
2006
SHHH
becomes
HLAA
2006
Walk4Hearing
is launched.
(2009 Cover)
2009
HLAA
partners with
NTID & RIT to
benefit
veterans of
recent
conflicts
2010
HLAA & The American
Academy of Audiology initiate
2012
• Tax Credit Bill still not passed.
• HLAA stops tax proposed on
hearing aids in Healthcare bill.
• HLAA launches campaign to
make hearing aids affordable
for more people.
Data Update – 2013-14
36 – 48 million people with
hearing loss in U.S.
Numbers for Deaf/deaf
remain constant.
.
Why is this ‘stuff’
important to
HLAA Leaders?
Who are we?
Who we Are!
Why do PEOPLE come to HLAA?
Most PEOPLE arrive with ‘needs’
If those needs are met they:
• Disappear
• Continue to attend meetings
• Decide to work towards ‘wants’
• Become involved in some way
Those who keep coming have:
IDEAS





Some of which:
Have been tried before
May or may not be doable
Are difficult to implement
Are worth exploring
All are worth discussing
An Effective Leader:
1. Recognizes the diversity of
PEOPLE’S gifts, talents &
skills.
“No one can know or do
everything; but everyone
can do something”.
2. Works with other PEOPLE who
will grow into future leaders.
Encourages ‘roving leadership’
by letting others with special gifts
lead in specific situations.
“Shares the microphone.”
“Asks for help & then accepts it”.
3. Values the ‘tribal
storytellers’; those who have
been involved for a long time.
“Failing to listen risks losing
the historical context of the
organization & the values that
bind the organization to the
PEOPLE it represents.”
4. Understands & accepts the
broader mission of HLAA.
• Position/Policy Papers
• Communicates with
National Staff
• Follows the affiliate bylaws
• Is not propelled by an
unrelated personal agenda
5. Accepts the need for change;
& uses wisdom & tact when
making changes.
“We may not be able to become
what we need to be by
remaining what we are.”
6. Embraces the concept of
“OWNERSHIP” with the
members of the chapter.
• Do the members get a vote?
• Does the ‘Board’ make all
decisions?
7. Values the organization’s
traditions and rituals; and
allows time & space to keep
them going.
•
•
•
•
•
Annual social events
Fund raisers
Founder’s Day Recognition
Chapter Awards
Convention representation
What does a Chapter Need?
1.
2.
3.
4.
PEOPLE
Energy
Ideas
Money
5. TIME
}
Resources
How does a chapter get these
things?
•
•
•
•
•
•
•
PR
Newsletters
Meeting notices
Word of mouth
Outside support
Active participation
Quality programs
Education
Information
Sharing
Advocacy
Peer Support
There is a wealth of
information right at your
finger tips….
Guess Where?
www.hearingloss.org
“Problems are best solved when
PEOPLE who are concerned about
them become part of the solution.”
…Howard E. ‘Rocky’ Stone
The Nation’s Voice for PEOPLE
with Hearing Loss
We are the PEOPLE of HLAA
Credits….
Rocky Stone* - Founder of SHHH/HLAA
Marcia Dugan* – For inspiration, including her president’s
column on leadership in May/June issue of Hearing Loss Magazine
1998
Quotes from “Leadership is an Art” by Max Depree
HLAA National Staff – Logos, suggestions, etc.
Joan Kleinrock, Chapter Development Advisor
Colleen Julia Cline – Computer graphics support
John Olson – Support system for 47 years!
Julie Olson, Facilitator , program author
* Deceased
Copyright © Julie M Olson 2014 This presentation may be used by
HLAA affiliates to promote HLAA as long as credits are given.
Thank You!
Julie M Olson MS
Founder of HLAA Fox Valley Chapter
Co-Founder of HLAA-Wisconsin
Past Chair HLAA National Board