The Braille Monitor _______ December 1997
Living by the
by Susan J. Spungin, Ed.D.
From the Editor: Dr. Susan Spungin is Vice President, National Programs and Initiatives Group, American Foundation for the Blind. She is also knowledgeable and articulate about Braille and its importance to blind people. Dr. Spungin addressed the 1997 convention of the National Federation of the Blind on Friday, July 4. This is what she said:
A drunken researcher dropped a dime in the middle of a dark street late one night. His friend asked why he was looking for the dime under the street lamp, far from where it had landed. The answer: "Because it's too dark over there."
The image fits some people (most are neither researchers nor drunk) who seek to locate the effects of disability policy. Policy watchers, perhaps figuratively intoxicated by deep gulps of newfound power, are looking where the light is--that is, where data currently exist. A bit of sober thought should suggest that is not likely to work.
Living by the numbers. What does that mean? It means as many different things as the number of people you ask. Some examples are the lottery, gambling, accounting--well, you get my point. But today, in this presentation, it means accuracy of existing statistics and demographics. The term "statistics" refers to numbers as a way to describe something. It is to provide a detailed picture of the social situation of people who have difficulty seeing or who are unable to see. We use numbers (i.e., statistics) to develop that picture, like threads in a tapestry.
Now, before you tune me out of your consciousness, let me say that, unfortunately, in the blindness field demographics, identifying the number and characteristics of blind people in the United States, at times appears to be some kind of a gamble or lottery game because the numbers never really seem to add up. Yet policy is based on these numbers. Why should we care? Let me tell you why with a real life example, the results of which affect all children who are blind or visually impaired in this country.
Every year the Individuals with Disabilities Education Act (IDEA) and American Printing House for the Blind (APH) require counts of children who are blind or visually impaired. The major difference is that APH uses the restricted definition of legal blindness of 20/200 or less, etc., and IDEA requires the broader functional definition that can include those children that are totally blind or legally blind as well as those who often see as well as 20/60 or 20/70, frequently referred to as partially sighted or low vision. In summary, the APH federal quota registration requires legal blindness for eligibility, a more restrictive requirement than IDEA's requirement for a visual impairment that affects the ability to learn. Yet the annual count of students with visual impairment served under IDEA has totaled less than the federal quota registration since 1977.
In the 1994 APH census, the count for children was 53,576 using legal blindness for eligibility. In 1993-94 the OSEP or IDEA child find count was 24,892. The annual count of children with visual impairments served under IDEA for the 1993-94 school year comprised only 46.5 percent, or less than half, of the Federal Quota Registration maintained by the American Printing House for the Blind. For years the field has relied on the federal estimate of the population of children with visual impairments--that is, one-tenth of one percent of the school-age population--first articulated by Jones and Collins in 1966, some thirty years ago. There are now more recent estimates ranging from .2 percent to as high as 1 percent. Using these projections, Individuals with Disabilities Education Act's count fails to identify over 80 percent of students with severe visual impairment. Even APH's registry, using these more recent estimates, may fail to account for over 60 percent of students with severe visual impairment.
Why is this? Why is it that, since the implementation of IDEA in 1976 until 1994, IDEA's numbers--remember the broader definition--have gone from 38,000 down to 25,000 as compared to APH's count in the same time period going from 32,000 up to 55,000. What is wrong with this picture? Might it be that some blind children are classified as another disability, e.g., learning-disabled, because the district has no teacher for blind kids and doesn't wish to spend the money, or no teachers are available? Might it be that our multiply handicapped blind children are not classified blind but some other disability because they cannot be counted twice; e.g., a child with a physical handicap and blindness is seen as a child with only a physical handicap? Even with the multiply handicapped population, including the deaf-blind categories first reported in 1978, it still makes no sense. So what! Well, the so what is that, like it or not, we live by the numbers in order to justify funding for training programs, teachers, vocational rehabilitation, Social Security benefits, to mention just a few. We cannot continue to accept or ignore the lottery-like approach we have when describing the demographics of our field. We are gambling with the quality of life for blind people of all ages since this problem intensifies as one goes up the age range.
Again, I can't help but ask, why are there discrepancies? Shall I put my New York City paranoia hat on and suggest it is purposeful? Unfortunately, the answer is not that easy--it really comes down to how we and others define the blindness population. I'm sure you have heard the old joke that people are blinded more by definition than any other eye condition, or to continue the theme of a drunken researcher: he uses statistics as a drunken man uses a lamp post--for support rather than illumination.
Depending on who is counting--the blind person is defined differently from agency to agency--be the agency from the federal or private sector--or even two agencies in the same sector, such as, two federal agencies, namely the Bureau of the Census and the National Center on Health Statistics.
The Bureau of the Census in the Survey of Income & Program Participation asks the questions: with glasses do you have difficulty, or are you unable to see words and letters? Those who answer "difficulty" are 9.7 million people; those who answer "unable" are 1.6 million.
The National Center on Health Statistics asks the question this way: "Can you see to read ordinary newsprint?" getting a response of 4.3 million people. Now these questions sound similar, but if you look closely, the Bureau asks about seeing words and letters, and NCHS asks about reading newsprint, which could be interpreted as a measure of literacy. Hence different answers to seemingly similar questions. The difference between 9.7 million visually impaired people versus 4.3 million visually impaired people is more than double! The problem is in the details-details-details. However, may we never be so indifferent to believe what Joseph Stalin said: A single death is a tragedy-- a million deaths is a statistic. Let us never forget that these numbers represent people like you and potentially even me-- depending on how well I age in my sunset years.
Anyone advocating for funding for services for people who are blind or visually impaired, or anyone who tries to judge whether these services are successful needs timely, reliable statistics about the number, background characteristics, needs, and achievements of the visually impaired population in the U. S. The only plausible source for such statistics is the federal government, which is able to mount large-scale surveys and get respectably high response rates, ensuring that an accurate picture emerges.
Unfortunately, there are only two federal surveys looking at all the age ranges--one conducted by the Bureau of the Census and the other by the National Center for Health Statistics (NCHS)-- that even occasionally collect the kind of statistics that we seek about people who are blind or severely visually impaired. And, while they define the same concept of visual impairment-- print reading disability--these two surveys generate substantially different results because of differing methods used to collect data. We are getting beyond the point of advocacy in which we can ask for action simply because it's the right thing to do. We're being asked for information. We need to be sure the information is the right type--that it is what we need.
To address this problem, the National Library Service for the Blind and Physically Handicapped (NLS) requested the World Blind Union/North American-Caribbean Region to submit a proposal, partially funded by NLS, to deal with the problem of accurate counts and comparable data of blind people. A proposal was submitted to NLS entitled Federal Statistics About People Who Are Blind or Visually Impaired: A Project to Improve How Data Are Collected and Used.
The proposal suggested a way to improve how data about blindness and visual impairment are collected and used by asking both the Census Bureau and NCHS to work together. The goal is to develop recommendations for how federal surveys can better phrase survey questions on visual impairment so that respondents provide unambiguous answers--which should clear up many of the discrepancies. In addition, AFB plans to conduct workshops for a wide variety of blindness constituencies--agencies, schools, and consumers, for example--in order to make sure that we all make good use of the improved statistics coming out of this research.
Funding for this project reflects an innovative collaboration between consumers and service providers and public and private sectors. As mentioned earlier, major funding was provided by the National Library Service for the Blind and Physically Handicapped of the Library of Congress, which paid for the part of the project conducted by the Census Bureau and NCHS. Additional activities conducted by AFB are supported by a generous grant from the National Federation of the Blind, augmented by contributions from the National Industries for the Blind, the Association for Education and Rehabilitation of the Blind and Visually Impaired, the American Council of the Blind of Wisconsin, and AFB, with additional funds anticipated from other blindness organizations.
At the present time AFB is in the process of working with the research staff of the Bureau for the Census and the National Center for Health Statistics in order to get higher-ups in these two agencies, and possibly other agencies, to pay attention to the study recommendations and actually adopt their practice regarding the wording of the vision question. (If you are in a federal agency or have worked with one, you readily understand that such change is not automatic or easily achieved.)
The study approach is called "cognitive interviewing." After the respondent answers, the interviewer asks the respondent to explain in detail how he or she understood the question and what he or she was thinking while deciding on the answer. The objective is to gain insight into what people mean when they answer the two seemingly similar question wordings that the Census Bureau and the National Center for Health Statistics have used.
The main product will be a written report in which the federal researchers detail what they found and what implications they see for future questionnaire design. It is our hope that one or more questions will emerge that are easily understood and consistently answered to allow for more accurate and comparable statistics.
Would it not be wonderful to get the Bureau of Census and NCHS to agree on one preferred wording for the print-disability measure of visual impairment to use whenever and wherever disability measures are used? We would also want the Bureau of Labor Statistics or any other federal agency that may begin to include questions and measures on types of disabilities to use the same preferred wording as well. This means we all need to promote the outcomes of this project and strategies for its implementation.
I would like to thank the core working group which works with us in this project (with special recognition to the NLS and NFB). The group consists of the following organizations:
American Council of the Blind
Association for the Education & Rehabilitation of the Blind and Visually Impaired
American Foundation for the Blind
American Printing House for the Blind
Blinded Veterans Association
Canadian National Institute for the Blind
National Federation of the Blind
National Industries for the Blind
National Library Service for the Blind & Physically Handicapped
I would like to conclude with the hope that one, you're still awake; two, you have learned something of the demographic dilemma in our field; and three, I haven't confused you even more than you might have been before.
I have always found statistics hard to swallow and, on first hearing, impossible to digest. The only one I can ever remember is that, if all the people who go to sleep in church were laid end to end, they would be a lot more comfortable. Thank you.