Social Security Criteria Issues

November 1, 2002

Michelle Hungerman
Senior Medical Policy Analyst
ODISP/Office of Disability Programs
Office of Medical Policy
Social Security Administration
4420 Annex Building
6401 Security Blvd.
Baltimore, MD 21235-6401

Dear Ms. Hungerman,

Self Help for Hard of Hearing People (SHHH) very much appreciates the opportunity to comment on the current SSA criteria used to evaluate people with hearing loss.

SHHH, based in Bethesda, Maryland, is the largest consumer organization for people with hearing loss in the United States. With thirteen state organizations and 250 chapters, SHHH's mission is to open the world of communication for people with hearing loss through education, advocacy, and support.

SHHH has hosted annual research symposiums related to hearing science since 1994. We have had extensive communication and experience with thousands of people with varying hearing loss conditions that inform our comments to you today.

The Alexander Graham Bell Association for the Deaf and Hard of Hearing (AGBell) is also signing onto this letter. AG Bell is the world's largest membership organization focusing on the use of spoken language by individuals who are deaf and hard of hearing. AG Bell supports using hearing technology (e.g., hearing aids, cochlear implants, and assistive listening devices) to maximize the use of residual hearing. Members of AG Bell include parents of children with hearing loss, individuals who are deaf and hard of hearing, and professionals (e.g., audiologists, speech-language pathologists, physicians, psychologists, and researchers).

(AG Bell has expertise in the issues of children who are hard of hearing or deaf from birth; SHHH has complementary expertise in the issues of people who lost hearing postlingually. We encourage the SSA to contact both organizations about matters such as this.)

We do have concerns about the current criteria, and thank you for asking us for our input.

In general, we recommend that a panel of experts in hearing loss be formed to review the current criteria and to update them to reflect what is now understood about hearing loss. The panel of experts should include audiologists, speech-language pathologists, experts in vocational rehabilitation or employment issues, and educated consumers with a broad base of knowledge about hearing loss (to be recommended by consumer organizations such as SHHH and AG Bell).

Following is a discussion of concerns about specific issues that illustrate the need for a review of the current criteria by experts in hearing loss:

1. Speech discrimination tests. We believe that more specific guidance needs to be provided about speech discrimination tests, which vary greatly in how well they evaluate a person's ability to discriminate speech. We request that the proposed panel search for speech discrimination tests that have better predictive value in gauging the person's ability to understand speech in various situations.
   
   We are concerned that many variables such as the following can affect the ability of speech discrimination tests to assess widespread functional impairment:

   a. whether the speech used in the test is low-pitched or high-pitched

   Many people with hearing loss have great difficulty understanding high-pitched speech; using low-pitched speech to test their speech discrimination could overestimate their ability to discriminate speech from people without low-pitched speech.

   b. whether the test is recorded or spoken live by the audiologist

   Live testing allows subjective testing rather than objective testing.

   c. whether two-syllable words are used rather than monosyllabic words

   Two-syllable words tend to be easier to guess, using cognitive processes in addition to hearing. The cognitive processing used to guess at an isolated sound may not translate to meeting the demand of deciphering continuous speech in more difficult situations.

   d. whether the tests use words or nonsense syllables

   Certain words may be guessed accurately because they don't sound like any other word; nonsense syllable testing emphasizes discriminating all sounds accurately

   e. whether the words are spoken in noise or with an absence of background noise

   Some people with hearing loss may have much lower speech discrimination in noise than their speech discrimination scores in quiet situations would indicate. This would be particularly true of people who can only use one ear, or of people whose hearing loss is such that they tend to hear low-frequency noise better than the full spectrum of speech.

   We would appreciate the panel evaluating these and other variables in the process of recommending speech discrimination tests and how they are administered.
   

2. Specified Hearing Thresholds Levels. The specified levels currently ignore the presence of hearing loss over 2000 hertz for adults and over 3000 hertz for children, but hearing loss over these frequencies has a significant impact on speech discrimination. The 1990 Mueller and Killion "Count-the-Dots audiogram form for calculation of the Articulation Index" indicates that 35% of speech cues occur over 2000 hertz and 24% over 3000 hertz. The current SSA criteria for adults from 500 hertz to 2000 hertz only evaluate the person's ability to hear a mere 55% of the speech cues. We recommend expanding the hearing threshold levels for both adults and children to be more representative of the person's disability across the spectrum of speech frequencies.
   
3. Children: Age cut off of 5 years for children with 40 db average hearing loss. Currently a child with a hearing loss which averages between 40 db and 70 db could lose eligibility for benefits upon turning five years of age. Hearing loss between 40 db and 70 db is highly likely to have a profound impact on the speech, language, vocabulary and social development of young children. These criteria should be re-evaluated. Children with such severe hearing loss need continual access to hearing aids. It should be noted that there could be a significant delay in access to funding for a hearing aid between age five and the time at which the child enrolls in school and qualifies for an IEP (that may then stipulate the provision of hearing aids and assistive technology.
   
4. Other considerations not noted in current criteria. Some people with hearing loss will have much greater difficulty functioning if they have other medical conditions affecting their ability to compensate for the hearing loss, but these medical conditions may not rise to the level of disability by themselves. For example, visual acuity and certain cognitive processes are needed for speechreading. People with hearing loss who are also impaired in these capabilities could be significantly more impaired in their ability to understand communication than someone who performs more poorly than they do on hearing tests but who has the capacity to speechread. Cognitive impairment can also disrupt a person's ability to quickly and fluidly utilize multiple environmental cues to deduce what is being communicated. Thus a person with hearing loss and additional impairments may be able to score over 40% on a carefully administered speech discrimination test, but the person could be extremely disabled in responding flexibly to the communication challenges of everyday life.
   

   We are additionally concerned that many people with severe hearing loss may be unable to support themselves financially due to the impact of their hearing loss, but they could still be deemed ineligible for benefits due to the eligibility criteria being too restrictive. A person’s audiological status does not necessarily predict their level of functioning. Hearing loss can be an extremely challenging disability on many levels but inner and outer resources may not be available to help the person compensate successfully for the hearing loss. If a person does not meet the pure tone average or the initial speech discrimination criterion, the person may still be profoundly disabled and should be evaluated further, especially if there has been a sustained inability to maintain substantial gainful employment.

   Unfortunately, the current Blue Book does not appear to allow physicians and audiologists to consider additional factors for determining that a person is disabled. The current Blue Book requirements pertaining to pure tone averages for adults and children need to be made less restrictive partly to accommodate people with multiple impairments or weaknesses which do not meet the eligibility criteria for a single disability. Alternatively, we ask that the SSA allow the use of other supporting evidence to determine disability due to hearing loss.

5. Adult and children: Pure Tone Averages (PTA). We would appreciate re-evaluation of the current criteria for PTA, particularly for very young children who cannot be assessed with speech discrimination tests. Currently, the PTA cutoff levels may be too restrictive in excluding large numbers of people who are still unable to engage in substantial gainful activity due to the severity of their hearing loss and other exacerbating factors.
   
6. Language. We suggest a review of all the language used. Certain phrases appear erroneous or confusing, such as: "Improvement by a hearing aid, as predicted by the testing procedure, must be demonstrated to be feasible in that child, since younger children may be unable to use a hearing aid effectively" and "2.08 Hearing impairments (hearing not restorable by a hearing aid)" (Emphasis added.)

In order to meet the comment deadline, time does not permit us to provide a comprehensive analysis of all the criteria. The above concerns should not be considered the only issues we would support reviewing. It is our expectation that the proposed panel of experts would be able to identify other relevant issues and to make recommendations for any new criteria that should be added.

In summary, we request that the Social Security Administration to convene a panel of experts in hearing loss to re-evaluate and update all current SSA criteria and language for evaluating hearing loss. As said previously, the panel of experts should include audiologists, speech - language pathologists, persons with expertise in vocational rehabilitation or employment issues, and educated consumers with a broad base of knowledge about hearing loss (to be recommended by consumer organizations such as SHHH and AG Bell). We would appreciate our specific concerns being forwarded to this panel.

Sincerely,

Brenda Battat
Director of Public Policy and State Development
Self Help for Hard of Hearing People
www.shhh.org

K. Todd Houston, Ph.D.
Executive Director/CEO
A.G. Bell Association for the Deaf and Hard of Hearing
www.agbell.org