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…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.

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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

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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