In 1979, when CIA retiree Howard E. “Rocky” Stone founded the Self Help for Hard of Hearing People (SHHH) in the family room of his Potomac, Maryland house, he probably could not envision what a major force the homespun group would become in the hearing health arena.
It is good to remember that in those days, hearing technology we enjoy today was still in nascent stages - in-the-ear hearing aids had just become available in the United States - and the rights of hearing-impaired people were not protected by the full extent of the law.
By 2006, when the SHHH name was changed to the Hearing Loss Association of America (HLAA), the organization had been instrumental in helping develop awareness of hearing loss among the public, as well as many advocacy efforts (see below).
This year, the Bethesda, MD-based non-profit association, which has 14 state organizations and 200 local chapters, is celebrating 30 years of opening “the world of communication through information, education, advocacy, and support that has helped hundreds of thousands of people live and work successfully with their hearing loss,” its website, says.
Great strides forward
Since its inception, the HLAAA saw “explosion in technology that works - cochlear implants, hearing aids and other implantable devices,” notes HLAA Executive Director Brenda Battat, also pointing out at a much better communication access, such as captioning, more functionally equivalent relay services, Blue Tooth and FMs built into hearing devices.
“Other improvements include screening of newborns for hearing loss, and information more readily available via the Internet,” she says. “Email, Instant Messaging and texting are examples of mainstream technology that greatly benefits people with hearing loss and allows them freer communication with family, friends and in the workplace.”
Advocacy throughout the years
Today, the organization has numerous accomplishments to its credit. These achievements include (but are not limited to) help in the formation of the National Institute on Deafness and other Communication Disorders; ensuring that Americans with Disabilities Act encompassed people with hearing impairments; and getting Aetna insurance to cover bilateral cochlear implants and Baha (a surgically implantable system for treatment of hearing loss) for single-sided deafness.
These tangible and meaningful accomplishments are just the tip of the iceberg. HLAA not only talks the talk but also, literally, walks the walk. Launched in 2006, the Walk4Hearing™ has brought together thousands of people nationwide to raise awareness, support and funding for hearing loss prevention and education at the local and national level.
This year, a number of walks are scheduled around the country for spring and fall, with an ambitious goal of raising $1 million.
Addressing remaining challenges
Although much progress has been made in hearing health advocacy since the HLAA’s beginnings, a long list of challenges remains, Battat says.
“There is still very limited insurance coverage of hearing aids,” she says, pointing out that only 20 percent of people who could benefit from hearing aids actually get them.
Also, Battat notes, there is still a stigma in our society about hearing loss. “It is not taken seriously by the media, the public, government and the medical establishment, keeping many people from disclosing their hearing loss, especially in the workplace,” she says. “Many people do not know how to accommodate their hearing loss to stay employed.”
Along with other hearing health advocacy groups, the HLAA is actively involved in not only raising awareness but also a much-needed political action, Battat says.
“We are pushing hard for the Hearing Aid Tax Credit and have held meetings with the Obama transition team to spell out what is needed in education, employment and health care for people with hearing loss,” she says. “Our goal is to have hearing loss recognized as a health issue that requires regular checkups and treatment as any other medical condition. Hearing aids are not discretionary items; they are medically necessary as a part of rehabilitation for the loss of a sense. No one should hesitate or feel shame about seeking help for hearing loss.”