OHL Questionnaire Results and Conclusions

OHL Questionnaire Results and Conclusions - Part 1

We've finally finished tabulating and analyzing the responses to our first OHL questionnaire (whew!), and have enough for our first article. We'll be presenting the rest of the results over the next few weeks.

We undertook this project because we sensed a growing dissatisfaction among the **Oral Hearing Loss** (OHL) population with the lack of services appropriate to them, and we wanted to get a sense of what services people want and how they should be provided.

(**We use the term "Oral Hearing Loss" to include people with hearing loss who prefer spoken language as their primary means of communications. This includes people who are hard of hearing, late-deafened, and oral deaf.**)

We received 42 responses to our questionnaire, which far exceeded our expectations! The fact that so many people took the time to complete the questionnaire, and to append so many insightful comments, indicates to us that our instincts were correct, that people are dissatisfied with the status quo and are willing to participate in efforts to change it.

We don't claim that this is a scientific survey, nor do we claim that the responses are indicative of the general OHL population. In fact, we know that the respondents are the "elite" of the OHL community and are anything but representative. Of the roughly 30 million OHL folks in the US, perhaps 20,000 are involved in one of the hearing loss organizations. This represents a participation rate of less than one-tenth of one percent. As you might expect, virtually all of the responses came from this small group.

We also didn't collect information on age, gender, hearing loss severity, age of hearing loss onset, education, employment status, family hearing loss history, or a hundred other variables that would allow us to characterize those who chose to respond.

Now the hard part begins - trying to extract meaning from a bunch of data! And we're hoping you will help. We'll provide some analysis and comments following each question or group of questions (where appropriate), but our intention is to provide objective analysis and reasonably obvious conclusions. We're hoping that YOU will spend some time thinking about these results and share your conclusions. What's behind some of the answers? What surprises you? What conclusions can you draw from this information? As always, we're anxious to hear what YOU think about this!

So with that, let's look at questions and responses

Question 1. What three services are most important to the Oral Hearing Loss (OHL) community? This can include services that are currently available, as well as services that you think should be provided, but are not currently available.

We grouped responses into three main categories: Support, Education, and Advocacy.

1a. Support

The largest number of respondents (38) mentioned various support services as being most important, and 36 of them included one or more service that enhances communications access.
- 21 people identified CART
- 12 people mentioned media (TV, movies, theater, web) captioning
- 8 people stated a need for the telecommunications relay service, with four of them specifically mentioning CapTel
- 7 people mentioned assistive listening devices (ALDs)
- 5 people identified state telephone distribution programs
- Other communications options included loop systems, oral interpreters, and user-independent voice recognition systems

A number of support services that do not directly enhance communications access were also identified.
- 8 people mentioned vocational rehabilitation or job services
- 4 people identified a need for psychological counseling specifically for hearing loss issues
- 3 people stated a need for classes on coping with hearing loss
- 2 people mentioned auditory rehabilitation

1b. Education

Education services was the number two category, with 12 respondents identifying needs in this area. Most of the needed education services were intended to educate OHL people.
- 5 people identified the need for lipreading (speechreading) classes
- 4 people want information on various technologies, including ALDs and phones
- Others mentioned classes on how to purchase a hearing aid, how to deal with HOH relatives, and sign language

The second category of education services is for people outside the OHL community.
- 4 people discussed the need to educate the general public, commercial interests, or government
- 2 people mentioned the need to teach audiologists that serving OHL people is about more than just hearing aids.

1c. Advocacy

Eight people mentioned advocacy in general or specific advocacy topics as important services.
- 4 people mentioned health insurance coverage/financial support for hearing aids, CIs, and/or auditory rehabilitation
- Other subjects included assuring that technology remains accessible and controlling background noise in malls, airports, etc.

Four people just couldn't wait for the next two questions, and included comments on characteristics of agencies serving OHL folks in this question. Two people identified a need for agencies that provide comprehensive OHL services, i.e., one-stop shopping. One person stated that existing agencies need to focus on the needs of OHL folks, and one maintained that agencies "of, by, and for" OHL folks are the only way to ensure appropriate services.

Analysis and Comments

The clear message here is that communications access is perceived as the overwhelming need of the OHL community, with widely available CART services as the number one priority.

Another message is that no single service or group of services represents a clear second priority! Once we get past communications access, we find a number of diverse services vying for second place. These include job services, lipreading classes, and psychological counseling. This need diversity may be what led a couple of people to identify the need for "one-stop" shopping. Here's how one respondent put it:

"AN EXAMPLE OF MY HOPES FOR THE FUTURE: When I was diagnosed with breast cancer at the UCLA Breast Center nine years ago, I was immediately pointed to the Rhonda Fleming Mann Resource Center for Women with Cancer in the same building. They offered free counseling and various support groups, and also had an entire library of materials for me to use and do research, there was also a store that sold items women with cancer might need (wigs, special bras, whatever). I was also assigned a nurse practitioner who could answer my questions over the phone. She also helped with insurance questions. Under bad circumstances they did everything possible to make life as easy as possible. This is what I wish we had available."