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As printed in Hearing Health, volume 19:4,
Winter 2003
By Karyn Butts, Managing Editor, with Introduction
by Susan Greco, Executive Director of Deafness Research
Foundation (DRF)
Washington, D.C., the heart of American government,
is home to DRF and many of the other associations within
the hearing health community. One main reason that we
headquarter here is that our staff and/or members can
easily lobby federal decision makers on behalf of our
stakeholders.
There are currently several active hearing health
advocacy groups calling on elected and appointed officials,
each one asking for support on one main rallying point
or discussing a comprehensive list of concerns. As with
anything that has such a broad impact on the nation
and individual citizens, the hearing health “movement”
encompasses a wide variety of issues. Keeping up with
the hot topics and which groups are in favor of what
is not always easy.
One thing that is clear as we survey the current terrain,
2004 is sure to be a busy year. As a tool to help you
decide how you can be an effective voice for the issues
that most concern you, Managing Editor Karyn Butts compiled
the following overview of organizations, their constituencies
and current advocacy agendas.
You will note that there is a triad of advocate sectors.
Consumer organizations, professional associations and
industry/trade groups have niche issues where they focus
their energies. Rest assured, however, that all are
working toward improving the lives of people with hearing
loss as well as helping move hearing health toward the
top of the national agenda.
To strengthen our voice, we sometimes work together
through committees and coalitions, such as the Congressional
Hearing Health Caucus Advisory Committee, a DRF initiative,
and the Deaf and Hard of Hearing Alliance.
We all welcome your advocacy support. From writing
letters to your representatives to participating in
group lobbying days, your efforts go a long way toward
acquiring and protecting equal rights and opportunity
and ensuring broader access to healthcare and hearing
and adaptive technology.
As the year progresses, I plan to keep the following
summary handy. I hope it proves helpful to you too.
And as always, you can keep up with developments in
the hearing health movement – its challenges and
successes – by reading Hearing Health and visiting
www.hearinghealthmag.com.
Consumer Organizations
Definition: groups which represent deaf and hard-of-hearing
(D/HH) individuals
Consumer advocacy is a powerful component of our political
system. Brenda Battat, director of public policy and
state development for Self Help for Hard of Hearing
People (SHHH), says of the work of her organization,
“The advocacy we do makes a difference in the
everyday lives of people with hearing loss whether or
not they realize it. Just the fact that they can use
the phone or go to the theater is possible because of
the legwork SHHH has done. But the most important advocacy
that we do is self-advocacy, giving individuals the
information and skills to enable them to advocate for
themselves.”
Nancy J. Bloch is executive director of the National
Association of the Deaf, another group with a strong
track record. Of its accomplishments, she says, “The
result of our advocacy efforts is evident in our everyday
lives as we enjoy unprecedented rights and opportunities.
We must, however, continue to be vigilant on numerous
accessibility issues. Our collaboration with others
include areas such as captioning access across several
venues (i.e., broadcast television, the Internet and
movie theaters), emergency and security alert systems
and telecommunications/technology, to name a few.”
The highest priorities of advocates for consumers
are:
- Early hearing detection and intervention
- Public and private insurance coverage for hearing
aids, cochlear implants and other assistive hearing
technology
- Access to education, healthcare, public accommodations,
telecommunications, transportation, emergency services,
etc.
- Business ownership and empowerment and advancement
of employees
- Civil rights of D/HH individuals
- Implementation and enforcement of federal and state
telecommunications regulations
- Noise regulation
- Federal funds for hearing research
Contact the groups below to learn their positions
and advocacy goals. Many post action alerts on legislation
and progress reports on their initiatives on their website.
Professional Associations
Definition: member organizations representing hearing
healthcare providers (e.g., audiologists, otolaryngologists,
etc.)
While many of the groups actively support consumer
issues, top priorities are promoting and protecting
their profession, which often includes watchdogging
legislation or regulations on how members practice or
bill for services.
Of the increased collaboration on advocacy and public
policy efforts among hearing health organizations in
2003, Brad Stach, president of the American Academy
of Audiology, claims, "This is nothing but a positive
approach to elevating the visibility and awareness of
the importance of hearing healthcare in today's society.
It is mutually beneficial for groups to work together
as strength is often perceived in numbers and it is
imperative that a consistent message be sent to Capitol
Hill. The Academy looks forward to continued efforts
with other organizations on shared advocacy goals on
behalf of individuals with hearing loss."
Here is what’s currently on the advocacy agenda
of professional associations:
- Reimbursement, coding and billing policies of hearing
healthcare services through Medicare and Medicaid
- Delivery of hearing and balance diagnostic testing
for Medicare beneficiaries
- Assessment of state licensure laws to meet current
professional practice
- Implementation of the Health Insurance Portability
and Accountability Act (HIPAA) and its impact on providing
hearing healthcare services
- Medical error and patient safety
- Medical liability reform
- Federal funds for hearing research
Most of the groups listed here welcome consumer support.
To find out how their issues of concern may affect the
care you receive from your hearing healthcare team;
browse these websites or contact a representative.
Hearing Aid Industry
Definition: manufacturers of hearing aids Congress and
federal legislators listen carefully to the voice of
industry. Hearing aid companies have a trade association,
the Hearing Industries Association (www.hearing.org),
to help protect and/or expand the use and sale of hearing
aids. On the top of the industry’s issue list
are:
- Hearing aid purchase assistance
- FCC regulations on cellular phone interference
with hearing aids
- FDA regulations governing the use and sale of hearing
aids
Congressional Hearing Health
Caucus
While not a traditional advocacy group, the DRF-sponsored
Congressional Hearing Health Caucus (CHHC) raises the
profile of hearing health issues among federal legislators
literally from within. Members include Congressional
leaders committed to hearing health.
Of his role, Co-chair Rep. Jim Ryun, Kansas, states,
"Having lost 50 percent of my hearing in both ears
after contracting measles as a child, I know firsthand
the challenges of living with hearing loss. Because
of this experience, it is my honor to serve as CHHC
co-chair. This caucus provides an important educational
forum on Capitol Hill.” He adds that it is important
that Congress is aware of the needs of the 28 million
D/HH Americans and advancing technology available to
them.
The CHHC’s goals are to:
- Broaden support and knowledge of hearing health
issues throughout Congress
- Provide an educational forum for discussion and
exchange of ideas on issues involving hearing health
- Maintain America’s leadership in world markets
through audiological and otologic research and biotechnology
enterprises
- Monitor and evaluate federal programs to ensure
that adequate resources are directed toward the improvement
of services for all hearing health issues.
Visit www.hearinghealthcaucus.com
to look up caucus members, find out about events and
read transcripts from past CHHC briefings.
Related Articles:
Intro to Advocacy
Know Your Rights
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