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HISTORY

Self Help for Hard of Hearing People, Inc.
Founded 1979

1979 November:
Self Help for Hard of Hearing People, Inc. (SHHH),is founded and incorporated as a non-profit educational membership organization by CIA retiree Howard E. “Rocky” Stone of Potomac, Maryland. The office of SHHH is the family room of the Stone home. Furnishings were donated by ASHA. Funding is donated by the Stone family and personal friends.

A brochure offers membership for $7.

The Wall Street Journal writes a story on Rocky Stone’s career and includes a small paragraph (5%) on the inception of SHHH. One hundred people from all over the world write for information and help with hearing loss.

A small article in Modern Maturity magazine about the new organization for hard of hearing people brings 2,500 letters of interest.

The induction loop is introduced by Rocky Stone in the Washington, D.C., Archdiocese leading to its introduction elsewhere in the metro capital area. Stone is chair of the Washington Committee on Ministry with Persons Who Are Handicapped.



1980
The first 12 page bimonthly Shhh Journal is published in July.
SHHH attracts members from 30 states, Puerto Rico and the District of Columbia and other countries.

SHHH welcomes its first chartered SHHH Chapter in Gainesville, GA.

Stone becomes advisor to the National Institute of Handicapped Research.

Stone testifies before congress on the problems of millions of Americans who are hard of hearing.


1981
Stone chairs a White House Conference on Aging and Hearing Loss (co-sponsored by ASHA, NAD, and A.G.Bell). The conference, the first of its kind, brings together a mix of consumers and representatives from government, industry, medicine and academia to identify hearing loss issues, reach conclusions, and make recommendations. Seven consumers attending return home committed to begin SHHH chapters in their states.


1982
SHHH adopts a goal: Make Hearing Loss an Issue of National Concern.

SHHH colors of green and white are adopted.

A Chapter Manual to assist organizers is completed by the first regular volunteer, Joan Kleinrock, who will become SHHH chapter coordinator. SHHH has 25 chapters.

July: SHHH News, a newsletter for leaders makes its debut.

Sisters Betty Bonvillian and Marjorie Boone begin what will be 17 years as weekly Wednesday volunteers at the SHHH National office.

Financed by Esso of Australia, Rocky Stone travels to Australia and SHHH gains international recognition with the establishment of a sister organization – SHHH Australia.

SHHH expands its National Advisory Board, its Professional Advisory Board, and gains a medical advisor, Dr. Howard House, president of the famed House Ear Institute.

ABC News features a three-part series of interviews with Rocky about SHHH.

SHHH joins with 27 organizations that make up the Council for Better Hearing and Speech Month (May).

October: SHHH is advisor to Bill Neill, producer of a three-part PBS TV series on hearing loss and noise, The Hurt That Does Not Show. Part I airs on 310 stations. Parts II and III air in 1984.

SHHH begins involvement with legislation to advocate for telephone compatibility.


1983
SHHH leases its first office at 4848 Battery Lane in Bethesda. With the addition of Carol Lingley and Pat Clickener, staff grows to four full-time volunteers. (Clickener has taken a one-and-a-half-year leave from a Chicago executive position in advertising.)

The official SHHH logo is designed and adopted (Fading SHHH letters represent fading hearing.)

SHHH is a featured story in a New York Times newspaper.

SHHH has 60 chapters and developing groups.

There are 10 members of the board of directors.

Stone is the keynote speaker at the First Canadian Conference of Hard of Hearing People.

SHHH launches campaign to conserve the hearing of youth with a project titled Operation SHHH and publishes a 15 page special report on noise pollution.

SHHH leaders Stone and Clickener represent hard of hearing people on a variety of national agencies and organizations.

The groundwork is laid for a 13th National Institutes of Health the National Institute on Deafness and Other Communication Disorders (NIDCD)… and supported by the SHHH membership.

A feature article about Stone in Modern Maturity, “For Your Eyes Only,” draws hundreds of inquiries about SHHH.

Stone is elected to the board of directors of the Deafness Research Foundation (DRF).


1984
The first National Convention is held in Chicago in May. 450 people attend. Here, Pat Clickener becomes the first elected president of SHHH (succeeding Rocky Stone). Columnist Ann Landers receives the first SHHH Walter T. Ridder Award. A large number of attendees go home committed to starting chapters, so that by November SHHH has 122 chapters.

SHHH moves to larger offices at 7800 Wisconsin Avenue in Bethesda.

SHHH publishes Self Help in Action, a special pictorial report of the first fours years of National and chapter progress.

An SHHH Pen Pal Club for children with hearing loss is initiated and overseen by a volunteer.

SHHH publication sales begin with an information series of six pamphlets on assistive listening devices (ALDs).

Ann Lander’s advises readers with hearing loss to contact SHHH. The National office, with the help of many volunteers from local chapters, answers over 8,000 letters and welcomes 900 new National members.


1985 January:
SHHH begins to pay staff (Stone remains a volunteer throughout his tenure).

A “Present at the Creation” birthday party is held in November honoring 30 people who helped SHHH begin and initiating the first annual Founder’s Day. Chapters join by raising funds for National.

SHHH has responded to more than 35,000 pieces of mail.

SHHH has 140 chapters in 33 states.

The board of directors approves the sale of advertising to support the SHHH Journal.

Publication sales rise. Dr. Sam Trychin’s videos and manuals on Coping Strategies for Hearing Impaired People are introduced along with the SHHH Information Series -(papers on a variety of subjects).

National office opens an Assistive Listening Devices Demonstration Center directed by Charles Mizell.

National Volunteer Nursing Home visitation Program begins: 160 members volunteer to execute the program.

SHHH and Gallaudet College hold a two-day symposium on contemporary Issues of Hard of Hearing Young Adults. From this, a SHHH/Gallaudet Task Force emerges.

Sam Trychin, Gallaudet psychology professor teaches Coping Strategies for Hard of Hearing People classes to SHHH staff and local members.

SHHH joins as a member of the worldwide International Federation of Hard of Hearing People (IFHOH).


1986
Stanford University in Palo Alto, CA, is the site of the second National Convention chaired by Bill Cutler who is elected SHHH President.

Following nine months preparation, a Report on Research and Service Priorities for SHHH was approved by the membership at the convention. Membership adopts 12 priorities, which become the basis for the SHHH priorities of awareness, access, education, and employment.

SHHH is structured into ten regions of 4 to 7 states each. Volunteer coordinators in states and coordinators of regions work to facilitate communication and strengthen the chapter network and SHHH National.

SHHH “board of directors is renames SHHH “board of trustees and expands to 27 members who pay all their expenses to attend 3 meetings annually. There are 14 National committees; i.e., Advocacy, ALDS, Chapter relations, Finance, Parent Involvement, Young Adults, and Hearing Loss in later years.

Staff now numbers seven full-time and one part time employees.

SHHH has 170 chapters and groups in 41 states.

SHHH begins PALS – a database of “places with assistive listening devices.” In one year there will be 5,700 sites.

Stone is keynote speaker for annual meeting of International Federation of Hard of Hearing People (IFHOH).

SHHH and ASHA convene the first workshop on ALDS at ASHA for more than 80 audiologists.



1987 January:
SHHH membership dues increase to $12 a year.

SHHH motto, “Make Hearing Loss an Issue of National Concern,” becomes the title of a regular column for Shhh.

Board votes to adopt the existing International Symbol for Hearing Loss. (NAD holds the U.S. Copyright.)

Board approved eight Chapter Standards as a guide for developing groups.

Symposium is held to examine and formalize SHHH philosophy.

Stone is appointed to the AT&T Special Needs Advisory Panel.

ASHA awards SHHH their 1987 Distinguished Service Award.

SHHH publicity is widespread as staff and members appear on television talk shows, and SHHH is written about in magazines such as U.S. News and World Report, Time, Family Circle, professional magazines and newspapers from New York City to Los Angeles.

Ann Landers references SHHH for the second time in her syndicated column and 8,000 inquiries are answered at the National office.

Rocky Stone presents a paper at an International Conference, University of Bristol, England, and addresses the British Parliament.

SHHH members visit all U.S. Congressional offices and each congressman is presented with SHHH materials.


1988
Rochester, NY, is the site of the third National convention chaired by Rochester member, Sue Miller. 900 people attend. Colby Chandler, chairman and CEO of Eastman Kodak Company, receives the Walter T. Ridder Award. (Also delivers a spell-binding banquet speech.)

Membership votes to increase dues to $15 per year.

Barbara (Harris) Kelley becomes Shhh Journal editor. The magazine is printed in 46,000 to 50,000 copies with an estimated 200,000 readers.

Board ratifies guidelines on the sale of materials in SHHH Chapters.

SHHH established a Development Office to raise funds to support the organization and ensure progress.

Fire strikes the National office in April. Temporary quarters are rented for eight months while renovation takes place. The membership of SHHH gives over $80,000 to the “Fire Rebuilding Fund.”

SHHH joins the Council of Organizations (COR), a strong voice of 17 National organizations concerned with hearing loss that provide a forum for issues of and for deaf and hard of hearing people.

SHHH and the network advocate on Capitol Hill for a National Institute on Deafness and other Communication Disorders (NIDCD). The bill is signed in October. The appropriations committee agrees to 96.1 million funding for the new institute. Stone is appointed to the advisory council.

SHHH, RSA (Rehabilitation Administration) and CSAVR (Council of State Administrators of Vocational Rehabilitation Research) sign a co-operative agreement to provide better employment services to hard of hearing people.

Several trustees attend the International Federation of Hard of Hearing Conference in Geneva, Switzerland (with many assistive listening devices).

SHHH influences major hotel/motel chains to provide alerting/alarm equipment for guests.


1989 July:
SHHH celebrates its first decade as 1,050 people attend Convention 1989 in Bethesda. Opening reception is held in the Caucus Room of the House of Representatives. U.S. Surgeon General C. Everett Koop (a hearing aid user) receives the 1989 “Walter T. Ridder Award.” Australia receives an “SHHH International Award.” SHHH begins an annual awards presentation reception for chapter and group awards. (This will expand to include National awards.) Convention chairs are Paul and Bonnie Hopler from the Nova One (VA) Chapter.

SHHH National returns to renovated and expanded offices and holds open house in March hosting some 300 visitors.

SHHH conducts a survey to reveal that over 150 members in the states are vocalizing the needs of hard of hearing people by serving on local and state commissions, councils, and boards.

SHHH membership approves a Five-Year Strategic Plan to focus on awareness, access, education and employment.

The paid staff numbers 10 with 10 volunteers.

SHHH lends expertise to the National Council on Self Help and Public Health.

SHHH joins with A.G.Bell, Gallaudet University, and NTID to initiate re-certification of oral interpreting through a series of training courses SHHH conducts.


1990
Little Rock, AR, hosts the 5th SHHH Convention where Warren Barnett of Tennessee is elected third president of SHHH. Sen. Tom Harkin of Iowa is awarded the “Walter T. Ridder Award” for his service to disabled people. John Centa of Idaho, retiring trustee, receives the first Howard E. “Rocky” Stone Humanitarian Award.

Brenda Battat becomes deputy executive director.

There are 230 chapters and groups in 48 states (exceptions are Alaska and N. Dakota). 25 states have volunteer state coordinators.

Rocky Stone is appointed by President Reagan to a three-year term on the Federal Access Board. (formerly ATBCB)

Staff increases to 14.

Publication Resource Materials/books approach the 100 count. Shhh (small letters) is dropped in favor of the use of all Caps at all times. The journal changes format and is titled SHHH Journal.

SHHH adopts February as “Family Month” and September as “SHHH National Month.”

Members make an impact in support of the ADA (Americans with Disabilities Act) signed into law in July.


1991
At the 6th SHHH Convention in Denver, Marjorie Boone, VA receives the second Rocky Stone Humanitarian Award. The SHHH Hospital Program, Access 2000, a joint project with Canada is launched. Over the next year 150 hospitals in 37 states will commit to the program implemented by 150 facilitators from local Chapters.

President Bush signs the Decoder Circuitry Act requiring all TVs 13” or larger to have built in captioning after July 1993. SHHH has been active in this legislation.

The World Federation of the Deaf and the International Federation of Hard of Hearing People issue a joint declaration to clarify the distinction between deaf and hard of hearing people and secure the terminology of each population.


1992
Convention is held in Cedar Rapids, Iowa. Dan Simmons of MA is elected SHHH president of the board of trustees. I. King Jordan, president of Gallaudet University, receives the “Walter T. Ridder Award.” Joan Kleinrock of MD receives the third Rocky Stone Humanitarian Award.

SHHH publishes its first Annual Report.

The board of trustees expands to 26 members from 17 states. (One slot on the board is always reserved for a Stone family member.)

Some SHHH programs have included a teen transition program, hospital services program, and implementation of the ADA, noise awareness, oral interpreting training, senior citizen program, teacher training, and research into genetics rehabilitation.

SHHH Journal wins first place in the 1991 Gold Circle Award for the most improved magazine from the American Society for Association Executives. Barbara (Harris) Kelley is editor.

SHHH has responded to inquiries and requests from approximately 300,000 individuals – an estimated ten times the number of persons (30,000) who have joined since 1979.

Paid staff numbers 19 + ten volunteers including a volunteer executive director. Office departments include accountant, editor/publications, chapter development, membership, development, meeting planner, and business manager/board liaison.

National office acquires a computer system. Customized membership database is installed.

There are 260 local affiliates in 48 states representing approximately 8,500 volunteers. There are state coordinators in 32 states.

Robert O’Connor of Denver wins a member contest to design a 1992 Holiday Card which is also used as the December Journal cover.

Board of trustees approves the formation of State Associations and model bylaws for them.

SHHH Chapters and Groups raise a $31,000 for Founder’s Day.


1993
During the 6th SHHH Convention in San Diego, CA, Founder Rocky Stone formally retires as SHHH executive director. Donna L. Sorkin of McLean, VA, becomes executive director. Sue Miller, NY State receives the Rocky Stone Humanitarian Award. The first Children’s Workshop during convention is sponsored by Oticon 4 Kids.

March: A retirement dinner (and fundraiser) for Rocky Stone is held in Bethesda with 100 people in attendance. Rocky speaks of the history of SHHH and 10 people talk of their experiences in the development of the organization including the first person to join Rocky full time, Joan Kleinrock, chapter coordinator.

AT&T presents an unrestricted check for $30,000 to SHHH.

A book, An Invisible Condition: The Human Side of Hearing Loss by Rocky Stone, is published by SHHH. It is a collection of editorials written by Stone for the SHHH magazine.

A corporate sponsorship program is initiated with 6 corporate members – each joining for $2,500.



1994
Convention is held in Baltimore, MD. Julie Olson of WI becomes SHHH president of the board of trustees. The first half-day research symposium is a new and popular offering led by eminent physicians and researchers.

SHHH receives the gift of a sculpture of a family affected with hearing loss created by artist member Jeannine Fletcher of Florida.

Board of Trustees finalizes SHHH mission statement, which is incorporated into the SHHH information and membership brochure.

SHHH moves to offices nearby in an accessible high rise building and holds open house in March.

Member survey is completed providing data about members, their needs, and how they use technology information.

SHHH is contracted by the Rehabilitation Research and Training Center set up at the California School of Professional Psychology to focus on psychological well being and adjustment issues of hard of hearing and late-deafened people.

Trustee Mark Ross, Ph.D., begins writing SHHH position/policy papers on issues relating to hearing loss. The first 3 are Cochlear Implants, Hearing Aids, and Residual Hearing and Inclusion of Hard of Hearing Children in Regular Classroom Settings.

With financial assistance from Oticon, SHHH launches a Better Hearing for Life program to increase awareness and understanding of SHHH and attract new members.

SHHH receives an Advance America Award from the American Society of Association Executives for the Hospital Access 2000 Program.

SHHH is mentioned in a Dear Abby column and receives 15,000 letters.

A booklet written by SHHH staff, Hearing Loss: How to Get Help, makes its debut. (Project is helped by a grant from ASHA)

Sorkin is appointed by President Clinton to the Access Board.

SHHH is advisor to American Airlines on improving air travel for people with disabilities. Also, joining other organizations with people with disabilities, SHHH submitted comments on airport access to the Dept. of Transportation.


1995
Dallas, TX is the convention site. Miss America of 1995, Heather Whitestone, the first winner with a disability of a profound hearing loss, gives the keynote address and receives the Walter Ridder Award. Bill Cutler, CA, receives the Rocky Stone Humanitarian Award.

Board of trustees agrees to decrease the number of trustees to 17.

Parade Magazine (Sunday’s paper) runs a feature story on hearing loss using an interview with Donna Sorkin – including a cover photo of her.

SHHH members and staff participate in Advocacy Day on Capitol Hill, a day of educating elected officials on the interests and needs of people with hearing loss.

SHHH begins working with the Cellular Telecommunications Industry Association to improve access to cellular phones for hearing aid wearers.


1996
Eleventh SHHH Convention is held in Orlando, Florida. Marcia Dugan of New York becomes SHHH president of the board of trustees. Mina “Sis” Lelewer receives the Rocky Stone Humanitarian Award. (The event includes an evening at Disney World, where with SHHH help, Disney World has begun communication access for hard of hearing people.)

For recognition, trustees vote to change the name of the SHHH Journal to, Hearing Loss: The Journal of Self Help for Hard of Hearing People.

SHHH has 12,000 members. The network of 250 groups and chapters involves some 9,500 members.

SHHH initiates a homepage on the World Wide Web.

SHHH launches the Library Lift-Off program in May – Better Hearing and Speech Month by distributing 300 packets of information to members who will work with their libraries to update/include materials on hard of hearing people and improve communication access.

North Carolina is sanctioned by the board of trustees as the first SHHH State Association.

SHHH joins other organizations to ensure the new Telecommunications Act of 1996 includes language requiring that services and equipment be accessible to people with disabilities. SHHH takes the lead in publicizing the interference problems of digital wireless phones and working with engineers/ manufacturers.

Produced by SHHH and the Johns Hopkins Center for Hearing and Balance, a video titled The Telecoil: Plugging into Sound with an attractive brochure, is distributed nationwide to increase awareness and benefits of telecoils in hearing aids primarily among hearing health professionals.



1997
Convention is held in Phoenix, AZ. The “Walter Ridder Award” is presented to keynote speaker Judith Heumann, assistant secretary, Office of Special Education and Rehabilitation Services. A new award bearing his name is presented to Dr. James Snow, NIDCD director for efforts to advance research. Dorothy Allen of NC receives the Rocky Stone Humanitarian award.

400th participant is enrolled in the SHHH Hospital Program for communication access.

Two books on hearing loss are written by SHHH members and published by major publishers (and sold by SHHH): Hear by Anne Pope and Keys to Living with Hearing Loss by Marcia Dugan.

SHHH joins the National Technical Institute for the Deaf (NTID) to address communication needs of hard of hearing college students by developing materials for educators.

SHHH provides input to the U.S. Department of Education on the proposed rules affecting children with hearing loss for the Individuals with Disabilities Education Act (IDEA).

SHHH begins a Heroes with Hearing Loss pilot mentoring program for adolescents ages 10 to 14 who will meet with young hard of hearing adult mentors (role models) ages 20 to 30.

SHHH opens a National Center of Assistive Technology, which operates on a grant from the Johns Hopkins Center for Hearing and Balance.

SHHH works with Microsoft Corporation to improve the quality and usability of accessible (captioned) software.



1998
Convention is held in Boston, MA. Marcia Finisdore of PA is elected SHHH president of the board of trustees. George Kosovich, MD receives the Rocky Stone Humanitarian award. Walt Disney World receives an Access Award. A 40-person delegation of Zennancho, the All Japan Association of Hard of Hearing People comes to the Convention, and invites Donna Sorkin to Japan in the fall. (Both organizations enter into a cooperative agreement.)

SHHH initiates drive to expand insurance coverage of hearing aids by members working through their employers.

February: First Leadership Training weekend is held in Bethesda for 44 affiliate leaders across the country. (This was sponsored by the AT&T Foundation with a gift of $25,000.)

SHHH has 250 chapters and groups. (150 of the affiliates are chartered chapters.) There are coordinators in 31 states. (Joan Kleinrock, the first SHHH Chapter Development Coordinator retires. She is replaced by Marilyn Finn of CA.)

The board of trustees has sanctioned 7 state associations: NC, CA, FL, NY, WI, NJ, & WA.

SHHH begins an Advocates Program with 150 volunteers forming the network.

SHHH supports National newborn hearing screening legislation.

SHHH completes 12 position policy statement papers.

Thanks to input from SHHH, people with hearing loss are a large consideration in the final guidelines published by the Access Board for Section 255 of the Telecommunications Act of 1996 (which has to do with accessible telecommunications and closed captioned TV).



1999
Convention is held in New Orleans, LA. Ahme Stone receives a 20th Century Woman Award. Clyde Black of TX receives the Rocky Stone Humanitarian award. The Opening Session features keynote speaker, Lord Ashley of Stoke, England, a member of the Upper House of Parliament, and the “only deaf member of any legislature in the world.”

SHHH Executive Director Donna Sorkin resigns to lead the A.G. Bell Association and Brenda Battat is named acting executive director.

Board of Trustee National Committees are: the Executive Committee, Finance, Long-Range Planning, Nominating, (ad hoc) Steering Committee for Strategic Planning, Children’s Issues, Support and Education, Government Affairs, Membership, State Association, and Election Procedures.

SHHH is contacted by the planning committee for the 2002 Winter Olympics to be in Salt Lake City regarding access to the games for people with hearing loss.

SHHH plays a significant role in helping pass Congressman James T. Walsh’s bill for the early detection, diagnosis, and intervention for newborms and infants with hearing loss.

SHHH celebrates its 20th Anniversary with a special November/December issue of Hearing Loss containing articles on 20 years of SHHH progress and achievements, technology history and conventions.

John Jaco, hired by the board of trustees,begins work in October as the 3rd Executive Director of SHHH.


2000
The 20th Anniversary of SHHH is celebrated in June at the 15th National Convention in St. Paul, Minnesota. Susan Matt from Washington State is elected SHHH President. Julie Olson of WI receives the Rocky Stone Humanitarian Award.

During the convention the SHHH Strategic Plan for 2001-2004, as presented by a team of diverse SHHH members and endorsed by the board of trustees, is introduced to the membership. It focuses on six areas, each with specific goals: Information and Education Services, Community Based Support, Advocacy, Marketing, Income Development and Financial Resources, and Organizational Unity. A Transition Team is formed to look at the SHHH structure with recommendations to the board of trustees.

The SHHH mission statement is simplified to read: “Our mission is to open the world of communication to people with hearing loss by providing information, education, support and advocacy.”

Better Hearing Australia hosts the sixth congress of the International Federation of Hard of Hearing (IFHOH) in July in Sidney, Australia. SHHH is a member of IFHOH along with 44 other worldwide organizations for people with hearing loss. Rocky Stone, SHHH Founder completes a term as IFHOH President. Marcia Dugan of SHHH becomes Vice President.

SHHH invites members to join an Action Alert to advocate for hearing aid coverage by health insurance for Federal Employees. (The Federal Employee Health Benefits insurance plan is a model adopted by other insurance plans.)

SHHH Deputy Director, Brenda Battat, represents passengers with hearing loss with the Department of Transportation and the airlines of America as they work to accommodate increased and better access to air travel for people with disabilities.

SHHH joins a coalition to push for accessible digital wireless telephones for hearing aid and cochlear implant users.

SHHH launches the first National Day of Hearing Screening on Saturday May 6. Eight national organizations collaborate with SHHH in this event sponsored by five hearing aid manufacturers. Chapters and groups across the U.S. set up 2,050 screening sites manned by local audiologists to provide free hearing screenings. A total of 75,850 people are screened.

Brenda Battat becomes acting executive director in November when John Jaco resigns.



2001
Beth Wilson, Ph.D of Rhode Island begins as executive director of SHHH in April. She had been an active SHHH member since 1986 and left Raytheon Corporation where for 18 years she was an electrical engineer.

Convention is held in Cherry Hill, New Jersey. Over 1100 people attend the 16th year of this event. The Keynote presenter is William Kennard, former chairman of the FCC. SHHH presents Mr. Kennard with the SHHH National Access Award. Dr. Mark Ross receives the Rocky Stone Humanitarian Award. (Over the years, SHHH has developed numerous oganizational awards, most of which are presented to individuals and chapters and groups at an Awards Ceremony during the convention.) The topic of the Eighth Annual Research Symposium is The Role of the Brain in Hearing.

A Town Meeting is held during the convention where the discussion focuses on the findings of the Strategic Planning Transition Committee and recommendations of the board of trustees. Several select committees study ways to facilitate the strategic plan with a focus on election procedures; transition funding that will unite the organization, and inter-organizational relationships.

As part of the Strategic Plan, SHHH initiates a State Office Pilot Program in 5 states. It will run for one year to test the feasibility of state offices. Brenda Battat, who has stepped aside as deputy executive director, serves as director of the project.

SHHH revises and updates the organization Web s ite adding many inter-active features and more news from and about SHHH National activity.


2002
Early in the year the board of trustees finds the financial health of SHHH to be in jeopardy. The executive director Beth Wilson resigns and several positions are eliminated including that of the chapter development coordinator and the off-site meeting planner. The remaining staff takes over the responsibilities of these positions. The membership is asked to make contributions to support the continued existence of SHHH.

The 17th National Convention attended by more than 1,000 people is held in June in Seattle, Washington. Ann Liming from Michigan becomes board president and past president Marcia Dugan receives the Rocky Stone Humanitarian award. The Research Symposium was sponsored and presented by The National Institute on Disability and Rehabilitation Research. Kathryn Stephens from the Maryland Association of Nonprofits is retained as interim executive director while the Board of SHHH focuses on the search for a new executive director.

The Board of Trustees institutes organizational changes: a) SHHH becomes an umbrella organization offering non-profit tax exempt status to all local affiliates. b) To achieve unity, there will be one membership dues to SHHH national. Local organizations may not ask for or require membership dues. c) Local entities will be SHHH chapters, eliminating group status. A chapter will be recognized as an SHHH entity when it identifies four members, agrees to support the SHHH mission and abide by the SHHH bylaws. d) Trustee slots will include representation from all ten regions. Members residing in each region will vote for board candidates from their region only as well as for the at-large candidates via electronic means and paper ballots.

The committee searching for a new executive director recommends four candidates. In December, the board of trustees hires Mr. Terry Portis as executive director.

SHHH has 13 state organizations. Eight are associations with elected officers and four are offices with an appointed director and a core group of volunteers. (The state office pilot program begun the previous year is very successful.) All are extensions of the national office carrying out the mission of SHHH in the states.

Thanks to the generosity of SHHH members, by the end of the year, the financial picture of SHHH is greatly improved.


2003
SHHH Executive Director Terry Portis sets organizational priorities for the year based on our strengths. He pledges support and resources for state organizations and local chapters. Attention will be give to expanding the SHHH interactive website – changed to www.hearingloss.org - unveiled in February as a tool to help members feel connected to SHHH and as a cost effective informational resource. The site receives 200,000 hits per week and will have 500 pages of information. Portis also wants to increase partnership with other organizations. He affirms the mission to make a difference in the lives of people affected by hearing loss. Issues this year are communication access in the community, health coverage for hearing aids and cochlear implants, and employment issues.

The 18th National Convention attended by 1,000 members (100 first-timers) is in Atlanta, Georgia. Heather Whitestone McCallum, Miss America 1995 and recent cochlear implant recipient, opens the Convention with an address “Overcoming Challenges to Attain Your Dreams.” SHHH Founder Rocky Stone presents Paul Hopler of Annandale, Virginia with the Rocky Stone Humanitarian Award. Numerous awards are presented to individuals, states, and chapters at an awards ceremony. The Annual Research Symposium sponsored by the National Institute on Deafness and Other Communication Disorders focuses on cochlear implant research.

SHHH initiates an Annual Fund Drive to raise $235,000 through appeals, challenges, and other activities. Sue Miller of Rochester, New York chairs the drive. (This goal is realized by year’s end.)

With Cochlear Americas as sponsor, SHHH prints and distributes to 150,000 professionals and consumers a booklet: Cochlear Implants and Seniors: When Hearing Aids Aren’t Enough. SHHH also meets with Medicare to urge Medicare conform to the FDA in eligibility criteria for cochlear implants in adults.

SHHH begins to target those states with poor Medicaid reimbursement rates for cochlear implants in children.

SHHH establishes the National Information and Training Center for Hearing Assistive Technology. Support for the Center comes from manufacturers of hearing products.

The Cochlear Implant Association Inc. (CIAI) ends operation and negotiations are begun to integrate CIAI into SHHH.

Hearing Loss is redesigned and makes its debut with the Sept/Oct issue. The membership brochure is also redesigned.

SHHH E-News – a twice monthly newsletter for leaders and members grows to 1,200 subscribers.

The first state leadership training, made possible by a grant from Sprint, is held in Pennsylvania. The SHHH goal is to have leadership trainings in every state.

SHHH is a pilot on a bill introduced by Representative Jim Ryun, the Hearing Aid Assistance Tax Credit Act, which provides a tax credit of up to $500 per device toward the cost of hearing aids.

A few of the issues/organizations SHHH works with are: the Coalition for Movie Captioning, the Deaf and Hard of Hearing Accessibility Working Group (assistance on access under Section 508 of the Rehabilitation Act), the Federal Communications Commission (as regards rules/regulations relevant to people with hearing loss) the Deaf and Hard of Hearing Alliance (formerly COR) urging congress to fund infant hearing screening programs. New is ITEM - Independence Through Enhancement of Medicare/Medicaid - a coalition of 65 consumer organizations that forms to ensure that hearing related needs be part of policy changes and increased coverage for people with disabilities and chronic conditions.

The letters sent by SHHH members helps the action that defeats the withdrawal of the American Standards Institute classroom acoustics standards.

SHHH has a lead role in an FCC order to modify the Hearing Aid Compatibility Act of 1988 mandating that digital wireless telephones be compatible with hearing aids.

SHHH joins the Congressional Hearing Health Caucus Advisory Committee.

CapTel - a phone that provides simultaneous voice hearing and text reading - are tested by SHHH members and prove to be very popular.

As part of a Forum on Interactive Voice Response Systems, SHHH brings over 200 member responses on voice mail barriers to the Forum.

2004 The year’s advocacy focus is on improving access to hearing aids, cochlear implants and other technology. SHHH actively supports the hearing aid tax credit bill, and works to increase reimbursement for cochlear implants and to harmonize the Medicare criteria for implantation with those of the FDA.

The 19th National Convention is in Omaha, Nebraska. The keynote is an entertaining presentation by Jim Fowler (and some of his wildlife), one of the world’s best-known naturalists and former host of Mutual of Omaha’s Wild Kingdom and other television shows. Mr. Fowler stressed that we must “realize we are part of the earth’s ecosystem, and learn to respect and live according to the basic biological laws of nature.”

The Annual Research Symposium sponsored by the National Institute on Deafness and Other communication Disorders is titled The Inner Ear: the 21st Century Frontier. Seven distinguished researchers present their studies that go beyond gene recognition of hearing loss to the next step which includes gene therapies. SHHH Founder Rocky Stone presents Jerry Hohnbaum of North Platte, Nebraska with the Rocky Stone Humanitarian Award. Richard H. Meyer of Illinois becomes the new SHHH President.

The National Center for Hearing Assistive Technology (NCHAT) receives equipment and financial donations from several manufacturers. During the Convention, on behalf of Cochlear Americas, Donna Sorkin, Vice President, Consumer Affairs, former Executive Director of SHHH presents a check for $10,000 to SHHH for NCHAT. Cochlear Americas also sponsors the production of a booklet: Cochlear Implants and Seniors: When Hearing Aids Aren’t Enough. This is distributed to 150,000 professionals and consumers.

SHHH has 13 state organizations in the states of CA, NC, NJ, NY, FL, WI, OR, GA, TX, MI, and PA. Six states hold state or regional conferences. PA and NJ hold leadership trainings. The conferences generate revenue for the state organization, raise awareness of SHHH in each state and bring in new members. Rather than conferences on general hearing loss information, some states chose to focus on specific topics such as assistive technology, employment and leadership. State organizations are building coalitions with other state agencies; representation on state advisory boards is at an all-time high and states are involved in advocacy efforts especially legislation to get hearing aid insurance coverage.

On August 13, just a few months short of our 25th anniversary, SHHH Founder and Executive Director emeritus Howard E. “Rocky” Stone dies following complications from pneumonia. Hundreds of tributes from all around the world are expressed reflective of his distinguished 25-year CIA career and his humanitarian work for people with hearing loss and other disabilities. He was 79 years old. An endowment fund is initiated in his name.

The November/December issue of Hearing Loss is a 25th anniversary tribute to SHHH and its founder Rocky Stone. It includes an article by past President Patricia Clickener: SHHH 25 years and Still Growing, A Flashback to 1979, and Earlier. Ms. Clickener reflects on the growth of SHHH along with the amazing advances made for people with hearing loss.

In November SHHH launches a promising trial run of a new Patron Membership which gives people the option of sending in an additional $10 with their membership dues which is reimbursed to their local chapter. SHHH hopes this will promote membership among chapter participants who are not SHHH members, and further promote the concept of “one SHHH membership.”

Dr. Portis, Executive Director announces that the last few months of the year show the greatest membership renewal in our history. We now have over 10,000 active, paid national members. This is a five year high for membership. (The highest membership count was in 1997, with just over 11,000.) In addition there are another 4-5,000 participating only at the local level.

The SHHH website averages over 1 million hits per month and is generating revenue for the first time. It contains nearly 500 pages of information including a new online bookstore.

SHHH meets the $250,000 Annual Fund goal with 3,000 people – a record number of donors - giving to SHHH.

2005 In February, SHHH Deputy Executive Director Brenda Battat received a 2005 Oticon Focus on People Award for her outstanding advocacy work on behalf of people with hearing loss. Oticon awards honor hard-of-hearing people who prove that hearing loss does not limit a person's ability to live a full, productive, and even, inspiring life.

In March, two booklets for consumers about cochlear implants: When Hearing aids Aren’t Enough (revised) and Questions to Ask Your Surgeon are mailed to 25,000 professionals and 10,000 randomly chosen consumers. Bulk mailings of the publications are also sent to other groups such as BHI, AARP, cochlear implant clinics and all SHHH chapters and state organizations. The project is sponsored Cochlear Americas.

Prior to the July 4th celebration, the 20th International Convention is held in Washington DC. It commemorates the 25th anniversary of the founding of SHHH. During the Convention, the Stone family holds a Memorial Celebration of the Life of Rocky Stone. At the organization’s banquet, the Howard E. “Rocky” Stone Humanitarian is awarded to Alice Marie (Ahme) Stone, the beloved wife of the founder. Award-winning singer songwriter Mary Sue Twohey performed a lovely “Ode to Rocky Stone.”

A 2005 SHHH Telecommunications Access Award is presented to FCC Commissioner Michael Copps following his presentation on the progress in telecommunications accessibility for people with hearing loss. At the 12th Annual Research Symposium, leading scientists shared the results of their research into the developments in stem cell research and hearing loss.

With the integration of the Cochlear Implant Association Inc. (CIAI) into SHHH, Hearing Loss magazine introduces “Cochlear Implants: Today and Tomorrow”, a section of each issue of magazine devoted to cochlear implants.

In September SHHH responds to the devastation caused Hurricane Katrina by establishing the hear2care project. SHHH serves as a depot for donations of money, batteries, hearing aids and assistive devices to be distributed to victims. Several hearing health related businesses and organizations provide services along with donations.

During the year, membership is enhanced with the addition of several benefits to including discounts with car rental agencies, Best Western Hotels, and Costco stores.

In the fall, the first class of the American Academy of Hearing Loss Support Specialists launches. The Academy is a self-paced online, distance learning certificate program designed to build knowledge about hearing loss, increase understanding, improve services and enhance the professionalism and credibility of people in diverse professions who provide support services to people with hearing loss and their families.

During the November 2005 Board of Trustees meeting, the board votes to change the name of Self Help for Hard of Hearing People to the Hearing Loss Association of American. Richard Meyer, president of the SHHH Board of Trustees stated, “This strategic decision is a significant milestone in SHHH’s 25--year history. While remaining committed to the vision of founder Rocky Stone, SHHH is evolving to best meet the needs of people with hearing loss today and in the future, continuing to be a pioneer in advocacy and support for consumers with hearing loss.”

Terry D. Portis, Ed. D., executive director of SHHH stated, “SHHH needs to position itself to meet the needs of a new generation of people with hearing loss while continuing to serve the constituents who rely on us today. I believe that by updating our name and image we will be better able to communicate our message and fulfill our mission. SHHH expects to complete the transition to the Hearing Loss Association of America in March 2006.”

Editor’s Note: This history of SHHH is not a complete account of all data or a complete listing of all pieces of legislation SHHH had input to. However, it is an informative sketch of some of the major highlights of the organization.

August 1999 (updated February 2006)
By Joan Kleinrock



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