Living By The Numbers

Living By The Numbers

The Braille Monitor_______December

1997

(next)

(contents)

Susan Spungin

Living by the

Numbers

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.