In particular, the MMW coalition is seeking to provide more services to the hard-of-hearing and deaf communities, she explained.
“We tell how we reach certain groups.” Gerdes said. “We had JulieAnn Chavez, [former Make Medicare Work project coordinator for the Progress Center for Independent Living and the volunteer management coordinator/Medicare benefits specialist for the state of Arkansas]. She said [some of the members of the] deaf [community] are not getting Medicare benefits. There was misinformation. They did not know what to do.”
She referred to research by the Hearing Loss Association of America (HLA) and the National Institute on Deafness and Other Communication Disorders (NIDOCD) finding that over 30 million individuals nationwide suffer some level of hearing loss. Specifically, this means one in 10 persons, including 1 in 3 over the age of 65, and 1 in 14 aged 29 to 40 already have hearing loss.
Research from the HLA and NIDOCD further demonstrated that, among seniors, hearing loss is the third most dominant but treatable condition. Roughly 95 percent could be treated with hearing aids but only 22 percent actually use them, data showed.
In studying the hearing-impaired, Gerdes said she learned that there were different levels of hearing loss: mild hearing loss, moderate hearing loss, severe hearing loss and profound hearing loss. Descriptions for the levels of hearing loss can be found at the Centers for Disease Control’s website at http://www.cdc.gov/NCBDDD/hearingloss/types.html.
With mild hearing loss, a sufferer hears some speech sounds but soft sounds are hard to hear. Under moderate hearing loss, a person may hear almost no speech when another person speaks at a normal level. Severe hearing loss means a person will hear no speech when a person is talking at a normal level and only some sounds. Profound hearing loss consists of not hearing any speech but only very loud sounds.
In studying and reaching out to the hard-of-hearing and deaf communities, Gerdes found many felt left out of the social services continuum, were acutely aware of their isolation and experienced anxiety over this, found their needs not being met by mainstream outreach, and discovered programmatic information delivered in group presentations to be inaccessible. At meetings and hearings aimed at serving them or through e-mail correspondence or mobile phone texts, some reported growing up deaf, developing deafness in later life or being hard-of-hearing.
“They said they could not get information from written materials,” she said, citing limited speech, reading skills and a lack of language interpreters or usable formats for potential deaf clients. “They go to workshops and sat in the back and were afraid to ask questions. They were tight-knit. Some grew up deaf. The type of materials [were] varied for need. Some can’t speak
English. They cannot gain access to material. Some of the vocabulary [in the material they do access] may be overwhelming. Some [of their] texts had monikers or unique names.”
As a result of the coalition’s discoveries about the deaf community, its service providers felt unprepared and under-resourced to address their needs, Gerdes explained. Namely, communication with the deaf would be difficult.
The typical outreach and counseling methods used on other disadvantaged, disabled or underserved populations would not work on them. Many caseworkers, social workers and other certified white-collar professionals were not familiar enough with assistive technology to serve the deaf and most materials are not available in accessible formats.
“One-on-one counseling was more effective,” Gerdes said. “[There were] challenges [for the] deaf [and] for several providers. They don’t know how to approach [the] deaf. [The] typical outreach, counseling and use of doctors [would] not work. TTY [telephone typewriter] is a thing of the past. A lot of [members of the deaf community] lack video relay service or VRS.
“What would happen if a deaf person came in [our offices]? They would panic. How to use video relay or VRI? How to communicate with client? You can get them to write down questions. It’s not rude.”
The best approach she said was for the MMW coalition to develop a Deaf Work Group. Created in 2009 by the coalition to reach out to members of the deaf and hard-of-hearing communities, the work group consisted of diverse deaf, hard-of-hearing and hearing professionals in education, law, social services, advocacy and religion.
“We created [the] MWW Deaf Work Group,” Gerdes said. “JulieAnn worked with [the] deaf community. [We were seeking to learn] how can we reach the deaf community in an effective way. [This means using] accessible formats. That does not mean taking out flyers. You will get into translational issues. You can’t do it word for word. We came up with videos in sign language [and other media formats]. [The] materials come from trusted sources.]”
Aside from learning about accessibility and trust, Gerdes said that the coalition also discovered that visuals worked best in reaching out to the deaf.
“The CMS [Centers for Medicare and Medicaid] posted [our materials] on video. There, we bonded,” she said. “JulieAnn placed [our materials] on [a] Facebook page. Success came from that. You’d be surprised. You see a flyer and it’s all words. If you are not used to working with [the] deaf, you may make mistakes.”
Gerdes said the coalition also found that, in serving the deaf and hard-of-hearing communities overall, it pays to utilize best policy and advocacy practices such as maintaining a physical presence to establish credibility, collaborating with stakeholding partners and staff fluent in American Sign Language (ASL) – which does not translate word for word – advertising that
accommodations will be provided, and using materials in ASL or languages other than standard American English.
Additionally, she said entities serving the deaf and hard-of-hearing communities must connect with their local Aging and Disability Resource Network, the Center for Independent Living resources and their state’s Commissions Office of Deafness for resources.
Eventually, the MMW Deaf Work Group created a MMW Universal Toolkit to assist groups throughout the state that do not serve deaf or hard-of-hearing communities. The toolkit consists of descriptions of the different levels of hearing loss, tips for those working with the deaf or hard-of-hearing, details about the types of technologies available to assist their clients and information about planning disabled-accessible meetings and events.
“We talked about the toolkit,” Gerdes said. “Some agencies did not have it. It was important to create a toolkit. It was straightforward, not difficult or daunting. The agencies can use them.”
She added that the MMW coalition worked with DeafMd to translate Medicare factsheets to ASL and post them to the network’s website at http://www.Deafmd.org.
“We created Medicare factsheets and we translated [them] into sign language,” Gerdes said. “We worked with [U.S. Rep.] Jan Schakowsky (D-Ill.). We created official videos in sign language. They are videos on the basics of Medicare. We heard they had difficulty in communicating language. We are working on glossary for ASL interpreters since there are no standard signs for Medicare terms.”
The Medicare videos are available on YouTube and received 16,000 hits or views, she added.
“There was a lot of feedback on what is a good resource,” Gerdes said, citing the Center for Independent Living at http://www.ilru.org/html/publications/directory/index.html, ADA National Network, http://adata.org, the National Association of the Deaf (NAD), http://www.nad.org, Communication Access Real-Time Translation (CART) at http://www.jan.wvu.edu/soar/hearing/commgroup.html and Registry of Interpreters for the Deaf (Sign Language Interpreters) at http://www.rid.org as her best examples.
“These can be used for the deaf, [individuals studying English as a Second Language] ESL, [people with] low vision or [the] blind. It is not just communication for the deaf. When we are advertising, we always include accommodation. If you put these out there, people will come.”
This article was originally published Feb. 8, 2014 on the website of PharmPsych.com, one of seven websites that comprise The Pharm Psych Network, a medical communications and education company.