More details from the U.S. Census Bureau.

What do the numbers mean?

"Disability is not an outcome, it's an input," says the Center for Disease Control's Don Lollar. "Disability is a demographic variable --just like age, sex, racial ethnicity, socioeconomic status -- and it needs to be seen that way, as opposed to a negative health outcome.

"Disability is a way of identifying another risk factor that contributes to lessened participation" in common activities like going to school, working, voting, participating in community life.

"Disability is highly correlated with low education, poverty, low resources, communities and individuals with low resources," says Mitchell LaPlante, head of NIDRR's Disability Statistics Center. "It's very important to have a tool that can remind us of these things that are in part responsible for disability, and that need to be addressed." The Census is the only [national survey] that provides that."

"We can't tell whether low education and low socioeconomic status is a risk factor for the development of disability, or whether disability is a risk factor for poverty," adds Lollar. "This Census isn't going to tell us that. But," he adds, it's important to "have the visibility of disability as a variable in our national planning, and policy, and understanding." The numbers, he says, emphasize "what needs emphasis."

How do Census 2000 findings compare with those of previous years?

The Census Bureau conducts a number of surveys in which they measure disability. The primary one of these is the Survey of Income and Program Participation [SIPP]. The latest estimate [from SIPP] of the population of people with disabilities is for 1997 -- 53 million people. "That's 19.7 percent of the population, or roughly one in five people," says LaPlante. "Of that, 33 million people have severe disabilities -- they are unable to perform one or more physical or sensory or other functions." This, he says, "amounts to 12.3 percent of the population." That compares to their estimate of 54 million for the mid-1990s, he says.

The 2000 Census indicates a far lower number of 49.7 million.

"The Census measures disability by asking people about difficulties that they have in functioning, like seeing, hearing, getting around, and they use a relatively short list of functions," explains LaPlante.

People who may identify as "disabled" when asked one kind of question will say they're "not disabled" when replying to another kind of question. This is why different surveys result in different numbers.

"If the Census were really exhaustive about measuring people who have difficulty with functions, the number of people with disabilities would, in fact, be much higher than it is," he continues. "But the main problem with the functional approach is that there are a lot of people who have difficulty doing some things, but it really doesn't impact on their daily activities.

"One of the biggest categories is people who have some difficulty lifting 25 pounds, and that is a category that a lot of people have difficulties with. But because people don't have to lift 25 pounds in their day-to-day activities, it really doesn't affect what they do."

The 2000 Census questions did leave out some groups. "In particular I don't think they measure people who have mental health disabilities that don't involve cognitive impairments." LaPlante says. "People who have certain mental health disabilities -- they can remember, they can concentrate, they can learn, but they have difficulty dealing with other people, or they have periods of hallucinations and whatnot -- are probably not represented in the decennial Census."

The 2000 Census did not count children with disabilities under age five, either.

The 2000 Census may have undercounted deaf and hard of hearing people.

Jeffrey Rosen, general counsel for the National Council on Disability notes that the mechanics of gathering information for the 2000 Census was mostly inaccessible to deaf people. "When someone from the Census Bureau appeared at my door to take down information, I indicated that I was deaf, and he said, 'oh, never mind.'

"I said, 'Wait a minute!' I really had to grab the guy. I said, 'Look, you have a form, you have a pencil, I'll fill it out for you.'

"They also conducted surveys through the phone -- but they didn't know how to use the [deaf] relay. So obviously they didn't include a significant population -- if you put the deaf and hard of hearing community together, that's half of the disability population by any kind of definition."

How does the 2000 Census differ from prior years in terms of the disability data it collected?

Every Census has been different, notes LaPlante. "The 1970 Census asked persons if they had a transportation handicap. We're well beyond asking a question like that to identify people with disabilities these days. That's not something you have -- that's something the environmental causes: a transportation handicap."

The 1990 Census asked people:

• if they were prevented from working or limited in the amount or kind of work that they could do,
• if they had difficulties taking care of their personal needs, basically dressing, bathing, and so forth, and
• if they had a mobility problem.

The 2000 Census "asked whether people have blindness, deafness, or severe vision or hearing impairment," says LaPlante. "They also asked about substantial limitations in physical activities, such as getting around, and lifting things, difficulty learning, remembering, or concentrating, difficulty working at a job or business."

LaPlante says many questions have inherent problems. "If I asked each of you what you thought a severe vision impairment was, you'd probably have different perspectives on what a severe vision impairment is. So that's a term that doesn't have great validity, because it doesn't mean the same thing from one person to another.

"We have to strive to create questions that everybody knows exactly what that means -- that are on the same playing field."

The 2000 Census questions "are not ideal," says the Disability Statistics Center's Steven Kaye, "but they are better than those from the 1990 Census, and the Census is a better vehicle than the Survey of Income and Program Participation for getting accurate numbers.

"So a case could be made that these [numbers] are a reasonably accurate count of the population with disabilities."

Should the disability questions on the Census be changed?

"Generally, there are two approaches to defining disability," explains LaPlante. "One is by looking at how people function -- basic things human beings can do. The other one is activities -- the things that we do in going about our daily lives, the activities that we have difficulty doing, or have limitations in. And these are separate things. And when we try to measure these things, we come up with different estimates of what disability is."

"If you don't have some framework that's common -- and we did not have that until now -- then we run around like chickens with our heads cut off," says CDC's Don Lollar. "[The government is] working very hard to try to come up with some consolidated understanding of definitional issues."

"We need to look at different ways of defining disability," LaPlante adds. "Asking people about what they can't do is kind of an old approach that doesn't take into account what people actually do to resolve their functional issues, and it includes people taking advantage of environmental accommodations, and environmental barriers."

Robert Bernstein
Public Information Office
U.S. Census Bureau
Tel. 301-763-2603
Email: robert.b.bernstein@census.gov

Andrew J. Houtenville
Program on Employment and Disability
Rehabilitation Research and Training Center for Economic Research on Employment Policy for Persons with Disabilities
Cornell University
(607) 255-5702
Email: ajh29@cornell.edu

Mitchell LaPlante, Ph.D., Director
Disability Statistics Center
University of California/San Francisco
Email:laplant@itsa.ucsf.edu

Stephen Kaye, Ph.D
Disability Statistics Center
University of California/San Francisco
Email: skaye@itsa.ucsf.edu

Don Lollar, ED.D.
Chief, Disability and Health Branch
National Center for Environmental Health
Centers for Disease Control
770/488-7150
Email: dcl5@cdc.gov

TO SEE YOUR LOCAL CENSUS DATA ON DISABILITY:
Go to Census Profiles -- then select your your state and your town. On the resulting PDF file, look at Table DP-2 (bottom of second page). You may want to compare the statistics for your local area with other parts of the country, or with nearby towns.

Links

Expert sources

The 'new paradigm' of disability

One in 5 working-age people reports a disability

Read Deborah Kaplan on the definitions of disability

Research on disability definitions from NIDRR

Statistics on disability