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Check out the Hearing Loss Association of America Inc. http://www.hearingloss.org It is a consumer based organization. This is a huge issue. HLAA is our advocate. If more people would get involved in HLAA, the organization could do much more than it has done.
We have seen change in this area, but it's slow going. The 'over the counter' hearing aids (OTC) that were recently approved should be on the market in mid to late October. While this type of hearing aid will not help people with severe/profound hearing loss, it will help many who have mild/moderate hearing loss.
One huge point in advocacy is awareness of research at major research bodies that now associates untreated hearing loss with cognitive decline. That has begun to get mental healthcare providers to start promoting hearing health.
The age-old, ridiculous stigmas about hearing loss have created barriers to treatment for millions of people. That has also kept people with hearing loss from becoming their own advocates.
It's the hard of hearing population that has to get on this. The culturally Deaf population chooses not to use personal technology, and while they are a tiny piece of the entire population with hearing loss, they are very vocal about discounting research in technology and medicine and promoting manual communication as a norm.
According to the National Institutes of Health, there are nearly 50 million Americans who experience hearing loss. Fewer than 2 million of that number are of Deaf culture. How can we get more people actively involved in advocacy?
Replies to "Check out the Hearing Loss Association of America Inc. www.hearingloss.org It is a consumer based organization...."
Hearing loss is so complicated and so diverse. It does take energy and commitment to get proper testing and diagnosis and then acquire workable hearing aids or surgery for CIs, getting adjusted to the new way of hearing. Thankfully there are additional assistive devices can improve hearing yet finding and trying them out is another major achievement. The technology can be challenging not to mention expensive. At this point audiologist practices are not really providing the counseling to bridge these gaps, but volunteers at HLAA can really help.
Advocacy is a huge issue that all of us with hearing loss need to take on because of its invisibility for most of us. Its not easy but it is gratifying to be able to speak out, ask for help and perhaps change ideas about hearing loss in the every day aspects of our lives like the library, the doctor's office, the supermarket, at social dinners and so on. People do want to help but first must to understand the problem. Advocacy can be an individual mission as well as shared as part of a group like HLAA. Given our huge numbers we can achieve greater understanding in the general public, and accommodation of hearing loss in public spaces. It is a big challenge to speed up the impact of advocacy but we can do it!
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I like your final question. How can we get more people involved in advocacy? For me, the hardest part of hearing loss has been finding myself thrust into a position of needing to self advocate for my new needs. I’m not the type of person who was comfortable taking a lead or speaking up before hearing loss, so this is a complete 180 for me. Thankfully, I became aware of this during my participation in aural rehab. Mind you, I had to fight for aural rehab after my CI surgery because it wasn’t the standard. I think part of the problem is we don’t even know what we need or what to ask for in the beginning stages. Slowly I’m beginning to learn what I need. I’m paying better attention to my body as I learn to befriend my hearing loss, integrating it into my new normal. And hopefully, in time, I’ll learn to better advocate. But honestly, I think the journey is slow. It can be overwhelming, especially after sudden hearing loss. Having moved through the grief part, I’m now in a better position to begin the task of advocacy. Thanks for the good information. Best to you.