Ladies and gentlemen, thanks for standing by. Welcome to today''s conference titled "Disability Statistics: What are the ''real'' numbers and how do you make sense of them?" At this time all participants will be in a listen-only mode, later we will conduct a question and answer session. At that time, if you would like to ask a question you may do so by pressing the one on your touch-tone phone. As a reminder this conference is being recorded today August 15th. I would now like to turn the conference over to Mr. Peter Berg, Technical Assistance Coordinator. Please go ahead.
Thank you very much. Good afternoon everyone and welcome to the Americans with Disabilities Act (ADA) Audio Conference Series, a collaborative effort of the ten Disability and Business Technical Assistance Centers, Disability and Business Technical Assistance Center (DBTAC), also know as ADA and Accessible Information Technology (IT) Centers. The network of ADA Centers are regional resources on the Americans with Disabilities Act and you may contact the regional center that serves your state by calling 800-949-4232. As was just mentioned, today''s conference is being recorded and an audio file of the session as well as a written transcript will be posted to the ADA Audio website, which is www.ada-audio.org, about 7 to 10 days following the session so if you want to go back and reference any of the information that is presented today, that is how you can access that information as well as you can access past transcripts and audio archives of previous sessions at the www.ada-audio.org website. Today we are going to be looking at the topic of Disability Statistics. What are the numbers out there and how are they arrived at? Where do they come from? And to do that, we needed to bring in someone with a great deal of expertise, and as always with the Audio Conference Series we are very grateful for the time of the speakers that agree to join us. Today we are joined by Andrew Houtenville of Cornell University, who is a Senior Research Associate on Cornell''s Program on Employment and Disability. He is currently the Director of the Rehabilitation and Training Center on Disability and Demographic Statistics. That center is currently in the first year of a five year funding cycle through the National Institute on Disability and Rehabilitation Research, NIDRR, which is a division within the Federal Department of Education. Andrew is also the Principal Investigator on two other projects. The first is a NIDRR field initiated project to disseminate and analyze census 2000 data. And the other secondary data analysis project is funded through the National Center for Education. So with that, I will turn it over to Andrew and Andrew will give us his presentation and you can follow along with the PowerPoint materials. Once Andrew is done with his presentation, we will open it up to any questions that you have out there. So welcome, Andrew.
Okay, thank you Peter. I told Peter to interrupt me if my voice gets a little bit dim, sometimes I have the habit of dropping the phone to my chin. So, hopefully Peter can do that and we won''t have any issues. I have also asked Peter to give me some signs in terms of when 50 or so minutes is up, and I will probably take about 50 minutes. I hope you have all received the PowerPoint slides. If anything in the PowerPoint slides if you need alternative formats or more information about what is on the slides, please feel free to contact me and my contact information is at the end. I will repeat it at the end. Again, my name is Andrew Houtenville. I am the Director of the Rehabilitation Research and Training Center on Disability Statistics and Demographics funded by the National Institute on Disability and Rehabilitation Research, NIDRR. Let me give you one caveat before we start. The title of the session today is about the real numbers. There are lots of different real numbers. All the numbers are real. They have varying degrees of quality. And they are also very much dependent on how you use them. The objective of today''s presentation is to give you a flavor of the powerful statistics that can be generated from national surveys that have disability related information so these are large federal surveys. I am going to highlight the complexities of defining disability in the context of a survey and also discuss the role that definition of disability plays in defining different statistics. The format today is going to be kind of a question and answer. I am sure you will have many questions at the end. Let me go to Slide number 3 and get started. It is not surprising there is no single definition of disability among large surveys and polls and also with regard to programs around the United States that serve people with disabilities. There is no unified universally accepted definition of disability in surveys or programs. The population of disabilities is diverse with regard to the type of disabilities, the social environment context of the disability and the area of personal and social activities affected by the disability. Given this complexity and normative nature of disability why is it important to know the number of people with disabilities? Why would the federal government spend lots of money on trying to determine the number of people with disabilities in the United States? The answer I have to that question has something to do with money. So let us talk about some of the slides, let me present some of the data from one of the surveys, the Current Population Survey. Slide 4 shows a line chart with two lines on it. It is the number or percentage of people reporting work limiting health problems or disabilities among persons aged 25 to 61. All of what I will talk about today is for the working age population. I define that as 25 to 61. So what we have here and I am going to describe this chart. Because it is kind of interesting trying to this over the phone, is you have a line chart that goes from 1981 to 2003 and the blue line stays about steady around 8% so that suggests that 8% of the working age population in the United States reports a work limiting health problem or disability. As a total number of the population of the United States you see that rising and simply apply 8% to a growing population and you will see that that rises over time from 1981 to 2003 so this question do you have a condition that limits the amount of work you can do which is asked in the Current Population which is the Census Bureau Labor Statistics Survey shows a fairly constant rate of people reporting a work limiting health related disability. You can also look at that across states and if you turn to slide number five what you have is a bar chart with all 50 states. I can''t read off all 50 states but what you see is the percentage reporting this work limiting health problem among working age population and this is for 2003 ranges from about 5% to about 16% and that is a pretty large range and so at the bottom end, the bottom five states are Nevada, South Dakota, Maryland, New Hampshire, and North Dakota, a little under 6% and at the top range you have Alabama, Montana, Kentucky, Mississippi, and West Virginia. And the first four, Alabama, Montana, Kentucky, and Mississippi are all around 12% but West Virginia is the one that is around 16%. And West Virginia always shows up very high. My hunch is that has to do with lung and the difficulties of the mining industry which is dominant in West Virginia.
Andrew, can I ask you to speak up a little bit?
Sure. What actually is shown if you put this on a map is that you see the disability belt which ranges down the Appalachian Mountains and into the lower Mississippi Valley. This so called disability belt can be seen in national surveys and also seen in if you look at Social Security Disability Insurance and Supplemental Security Income you will see there is also the disability belt and this is first termed back in the 80s and may even go further than that. I haven''t seen any reference earlier. This is giving you an idea of what can be done with certain disability statistics. If we go to the next slide, Slide number 6, we have the poverty rate. So this is something that co-authors of mine are very interested in. Looking at this poverty rate by this work limitation status, people who report a work limiting condition and people who don''t. And what you see is the poverty rate for people who don''t report a work limiting condition is around 8% and it goes up and down with the business cycle. What you see for people who report work limitations, report a disability, you see this amount fluctuating with the business cycles and recessions and growth years but it is rising slowly over time and it is on average over the period from 1980 to 2003. You see that it actually ranges around 28% and sometimes higher, sometimes lower. So 28% poverty rate versus 8% poverty rate. Several colleagues of mine at Cornell are interested at looking at the poverty gap between people with and without disabilities. If you go to Slide number 7 you see another statistic ranging from 1980 to 2002 and this is the receipt of Supplemental Security Incomes, Social Security''s Anti-Poverty Program and this is by work limitation status for ages 25 to 61 for people reporting no work limitation is basically around zero. It should be SSI for that age range is for people with disabilities. For the group who reported work limitation, it starts out around 12 and then rises steadily over time. So what this shows is that, the populations with disability a greater percentage are on SSI going from 12% to about 24% currently. And this graph ends at 2002 if we did through 2005, this data just came out but if you went through 2004 you would see it continues to rise. If you go to the next slide, Slide number 8, we have question two. How many people with disabilities are there in the United States and what is the definition of disability? This is a question I receive a great deal of calls for either from the media or from other groups. And what do people usually hear and if we go to the next slide you will hear there are 58 million people and it is often cited there are 54 million people in the United States with disabilities and that is going to be based, that 54 million estimate corresponds to a 20% prevalence rate. So 20% of the population with disabilities and this is all ages that are referred to in this 54 million. It is based on a census bureau estimate using 1994 SIPP data. SIPP is the Survey of Income and Program Participation, it is another Census Bureau survey. Census Bureau is the place where a lot of disability statistics are developed. This 54 million number dates back to 1994. It also does not include people living in institutions. If we included people living in institutions, then it is roughly 2 million more people. The census 2000 reports about 2 million people living in disability related institutions. What is the definition of disability? You will be pretty shocked at what they consider disability in terms of this 54 million estimate. It is pretty much what I would call kitchen sink disability which includes activities of daily living and instrumental living activities like difficulties bathing, dressing, and so forth due to a disability. It also includes use of a wheelchair, cane or crutches. This has no reference to how long-term the disability is. It also includes the receipt of federal disability benefits such as Supplemental Security Income and Social Security Disability Insurance. You can get that source, the source of the 54 million number is reported at the Census Bureau''s website. There are lots of others. If we go to the next slide, you will see that there are other answers to how many people with disabilities. The National Health Interview Survey which is the CDC survey, says there are 34 million people or about 12% of the population of all ages that are limited in usual activities due to chronic health conditions. The American Community Survey which is yet another Census Bureau survey says there is about 41 million an the estimate of that, the re-estimate of that just came out today for the 2005 figure, it was just released. The population survey the data on the previous slide, the poverty rate and the time trends were presented on there are 22 million people, about 10% of the population in 2002 that report a work limitation as we look at the age. You can find that statistic on Census Bureau''s website. This raises the question if you turn to Slide number 11 what is the best definition of disability available in the surveys. Explain your answer. If this is an exam, how would you defend what is the best population. The answer is actually that there is no gold standard. It depends on why you are defining disability. It depends on the purpose for which you are doing and you should choose wisely whenever possible find documentation to do it. So, what are the real numbers? That is what the presentation was titled. Well, it depends on the purpose of what you are writing about and this isn''t too much of a surprise given that the environment is plays a great deal in the development of a disability and dictates a lot about how people identify themselves and if you are looking at the work environment then you are going to have a different definition of disability. If you are looking at the health care fields you are going to have a different definition of disability. If I had to be pinned down and said what is the one definition that I would go with and that would be the American Community Survey which is based on the census 2000 long form. The American Community Survey was just released. The 2005 version was just released today and it is the survey that is going to replace the census 2000, long form not the short form which is used to draw congressional districts. It is the long form which is used for poverty statistics at the local level. In the American Community Survey, it is replacing the Census''s long form. And we are lucky actually to have six disability related questions. I dropped a slide by accident. Let me read you the six questions that they have. Does this person have any long lasting condition, A, blindness, deafness, severe vision or hearing impairment. And then there is another statement, B, a condition that substantially limits one or more basic physical activities like walking, climbing, reaching lifting or carrying. Another set of questions that starts with because of physical or emotional condition lasting six months or more does this person have any of the difficult in doing the following activities: A learning, remembering, or concentrating. B dressing, bathing or getting around in the home and then there is actually another set of questions which I unintentionally dropped from the slide. C going outside the home alone to shop or visit a doctor''s office and B working at a job or business. And what the Census Bureau has done is revise these questions. They had some difficulty early on because of the long length that these questions it was always a concern that people would understand them. They have separated out the last two and restated because of physical or mental or emotional condition lasting 6 months or more, does this person have any other difficulties and it asked again going outside the home to shop or visit a doctor or work at a job or business. If we look at the 2002 American Community Survey, we go to the next slide. They call the first one, sensory disabilities so they actually combine blindness and deafness into 1 question. There was a prevalence rate of 2.7% that includes low vision and some hearing loss. The next category is physical disability at 7.5% of the population. The other one remembering, learning or concentrating is 4%. The difficulties bathing, dressing or getting around inside the home they call self care disability at 1.9% and the go out outside the home disabilities 4.1%. The difficulty working at a job or business call work limitation is around 7.6%. The corresponding number at the current populations are 7.8% for that particular age range for that year. If you have one or more of these disabilities it is a prevalence rate of 13.7%. So those are the numbers from the American Community Survey. If we go to the next slide, Slide 14, the question of how to conceptualized disability. These questions are based on a fairly long literature of trying to conceptualized disability as a demographical or as a process. In what is called the NAGI model and that is name after an author, a sociologist and epidemiologist in the 1960s who worked in this area, in not just in conceptualization of disability is that, first it starts with pathology or an accident. And you know so that is the very basis of disability. And then it converts itself into an impairment. And not all people who have a pathology would be impaired and then the impairment would lead to a functional limitation. So not everybody who is impaired would be functionally limited. A disability would come last and people with work limitations would report having a disability and that would come when it comes into the larger social context. In what NAGI''s innovation was, is that he was one of the first to recognize that the environment played a role in this progression from pathology to impairment to work limitation to disability. That the pathology itself wasn''t inherent to the process of disablement but it was the environmental context of which those things took place. And so functional limitations are things like, you will hear the term ADL, IDL, just this basic dressing, bathing, using the telephone. And then disability comes in when the person goes into the social context, going to work, to participate in large social roles and NAGI recognized that all steps these things in the environment could play a role. If you go back to the Census questions, Census 2000 of the American Community Survey questions, which you will see is that there is a real sense of trying to get at impairment. So basic visual and hearing impairments, and get at functional status of getting around inside the home, and then get at going outside the home in terms of a disability and larger social context of going outside the home and the social context of going to work. So, you will actually see this kind of underlying structure, so we go back to that slide and you will see, you know, the sensory, physical and mental questions, so Slide 15 has it, you will see NAGI impairment represented by the first three columns and then you will see functional limitation as self-care, and then you will actually see disability as represented by going outside the home and going to work. What time is it? 20 minutes into the presentation, this is the point I usually stop here to ask for questions, but this format doesn''t allow for it, so please feel free to ask questions, and get in the queue. The interesting about NAGI conceptualization is that if you had a perfectly accommodating environment, the perfect universal design you would have no disability in the NAGI conceptualization because people could perform social role with equal fluidity as anybody with any condition. One of the interesting thing that comes out of the data that I have been working with, is the National Health Interview Survey that actually asks the question are you blind in both eyes, that is their term, blind in both eyes. So I have looked at that question and how many people who report being blind in both eyes, report a condition that limits the kind or amount of work they can do. Well, about how many don''t report a work limitation? About 31% when I look at the National Health Interview Survey. So not everybody reported being blind in both eyes reports what would be a work disability, health problem or impairment that limits the kind and amount of work that they can do. So this kind of verifies the NAGI model that not everybody considers themselves limited. That there are the environment can remediate, can participate, and the person''s own actions and support systems can they don''t have to have a disability. And so this is one of the more interesting findings that you can do with statistics. If we look at next slide, Slide 17, this gives you the prevalence or percentage of reporting of specific conditions among the working age population. Here is that statistic. About 0.5% a very small fraction report being blind in both eyes, and only 69% of those people report a work limitation. If we look at "deaf in both ears" that is their term in the survey, about 0.37%, less than half a percent report being deaf in both ears. 38% reported work limitation. For people with cerebral palsy, about less than a tenth of a percent of the population and subject 4.5% reported that condition in the limited of kind and amount of work they can do, so this is data from the National Health Interview, unfortunately we can''t update those numbers because the CDC completely changed the way they did the survey, which is the point we will bring up later. One of the other things that you can do with statistics is look at the employment rate. So Slide 18 gives you the employment rate of people with disabilities, with disability being defined in various ways from 1981 to 2000. People have been long focused on employment as an issue for people with disabilities, as manifest in the Rehabilitation Act. Back in the 70s, 80s, in 90s the Ticket to Work, in the late 90s and continuing on today with lots of various efforts to address the employment rates. This slide shows from 1981 to 2000, shows the employment rates of people with disabilities. We have the Current Population Survey working with work limitation definition, we have the National Health Interview Survey the work limitation definition, and then we have an impairment definition defining the populations with those reporting various impairments, for the National Health Interview Survey. And generally what you find is the levels are different, so CPS work limitation is around 40%, National Health Interview Survey is around 50% for the work limited population and about 80% for the impaired population. However what you see is from the chart is that the employment rate has actually been declining over time for all three different trend lines. So we have done a lot of work at Cornell around this. If the employment of people with disabilities is dropping over time it is a pretty significant event and we have pulled out all the stops with regard to getting as much disability statistics, data, as you can, in everything we measure, every survey, no matter how you measure it, the employment of people with disabilities is declining in the last 20 or so years. Some of the estimates say that it started in the mid-80s. I have actually seen some recent stuff that says it might have even began in the 70s. So this employment decline is a pretty significant event and a lot of statisticians and economists have been really looking at this decline over time, and it continues, I am very anxious to get the 2005 data from the Census Bureau to see if 2005 also showed a drop. While I am at it, let us turn to Slide 19. The unemployment rate in the United States is generally around 5% to 6%, what is the unemployment rate of among people with disabilities, one possible answer from the I believe I estimated from the American Community Survey, is about 20%, depending on the definition. One thing that a lot of people will say, that the unemployment rate is around 60 to 70%. That is actually not true. The unemployment rate, if you go to slide 17, there is actually a typo I want to point out. The unemployment rate is the percentage of the work, the labor force who is not employed. The unemployment rate is percentage of labor force who are not employed, the labor force is defined as people are employed or are actively looking for work in the last 4 weeks. A lot of people think it is 100 minus the employment rate, the employment rate is the percentages of people working divided by the total population. Well, there are actually different denominators, you actually can''t subtract them. The unemployment rate is a measure of labor force tightness so how tight is the labor force market. It is not a good statistic, the unemployment rate is not a good statistic to identify the lack of employment among working age people with disabilities. The reason being is that it drops people who are not actively looking for work in the last four weeks, they are not even in the calculation of the official unemployment rate statistics. This will miss out on people that are discouraged in the job search process and it will also miss people are on DSSI who are not actively looking for work and who are not working, a population that has increased dramatically over the 90s. So the unemployment rate is not a great number, because people exit the labor force. There is actually a case during the last recession where the unemployment rate went down, not because of more jobs, because a lot more people stopped looking for work. So we generally stick to the employment rate, which is the percentage employed divided by the total population. Back to the conceptualization in disability, there is another conceptualization of disability which is really being developed out of the World Health Organization, and it is called the International Classification of Function and Health and Disability or ICF for short. This is pretty similar to the NAGI model, you have both impairment and activity limitation and participation restriction. So it recognizes the role of the environment. The only real big difference is, there are many differences but probably the only big difference is that disability, the population''s disability is defined as everyone with impairment, whether it limits their ability to function in any way or limits their participation in any way. People with disabilities are all people that fall under the impaired population activity limitation, participation restrictions. If we go to the next one, next question, the NAGI framework acknowledges the role of disability in the transformation. The ICF recognizes the role of the environment in -- as a factor in disability. If you are not familiar with the ICF, it is really very interesting, it is almost a movement in and of itself, it is actually trying to codify the role the environment plays. It is not really a statistic or survey, it is actually a classification system, so people might be familiar with the ICD, International Classification Disease that is used in medical billing purposes, or the DSM, the big book with regards to the definition of mental illness. Well, the ICF is a classification system that is trying to look at the environment. For me it raises lots of interesting questions like, suppose you suggest to a health insurance company to use the ICF as the basis by which they do their billing rather than the ICD-9 which they currently use, or I am sorry the ICD-10 what do you think the insurance company would respond? What would a worker comp insurance company say? Well, would they want to take liability over the environment? Would they want this codified in any way? That would be really interesting, and it might force people to address environmental remediation more seriously. The next question, Slide 23, question 8, in what way does the social security administration elicit, explicitly incorporate the role of the environment in their disability determination process? It would be that, it is not very expansive or explicit. The answer is that, from my perspective at least, from my reading of the Social Security program is that, it is whether the job exists in the national economy for which the applicant can do with a reasonable amount of retraining. It acknowledges that the job plays a role in the person''s ability to earn a substantial gainful amount of money in order to survive, but the environment really doesn''t play a role in the way the Social Security Administration does it is business. In Slide 24, suppose the Social Security Administration codified the entire ICF within their disability determination process, what implications do you think this would have for the Social Security policy and recent efforts of Social Security to in the area of return to work. It might motivate Social Security to work, if they did so to work on addressing environment barriers to employment and other activities. There are some pretty neat innovative things going on at Social Security, they have what is called the Demonstration Projects, and so they are looking at how the way disability benefits are paid, that you lose a dollar every time you earn a dollar, they are looking at that, and trying to change that. They are also looking at Early Intervention Demonstration Project, which is to get Social Security benefits to people really quickly and try to keep them in the workforce, rather than having a long determination process that can last up to an average of two years from what people say, or having them wait two years to get Medicare, give them insurance right away, give them benefits, and in particular give them supports to return to work right away; recognizing that the longer people are out of work the more likely they will stay out of work. Continuing this ICF thing, what are the current -- if we go to question 10, Slide 25, what currently causes labor lawyers, at least to the ones I talk to, representing people with disabilities and employers a great deal of uncertainty? I would suggest that a possible answer would be, based on my discussions with labor lawyers lack of a clear definition of disabilities, especially with regard to mental and emotional disabilities. The definition of disability continually comes into the process. My gut feeling is that this is always going to be the case because disability is not the type of demographic characteristic like age or even race, or ethnicity, even though those questions race and ethnicity have been becoming increasingly complex with the recognition of multiple races and ethnicities. Disability, because of its environmental component is inherently diverse, complex, and related to how people, the activities people choose to do, and the environments in which they do them. The presentation was slated as what are the real numbers, how do we make use of them. A lot of my discussion so far has been about the definitions varies from time to time. As the Director of this disability statistics, the Stats RRTC, my kind of mission for myself and my center is to provide you not necessarily with the real numbers, because they are all estimates, all based on some survey. We don''t have a system in the United States that mandate reporting disability or go in for a screening. I am not advocating for that at all. But what we can do is to provide you with as many numbers as possible, and then provide you the ability to kind of look at what the statistics are. A lot of times it will be what you need. If you ask me, I want a state level or a county level estimate of the population with disabilities, my answer would be different if you are looking at I would like to see what happens to disability over time, I like to see the poverty rate over time. So these questions are, each question will lead to a different answer. And because we don''t have an overarching system of tracking people with disabilities in the United States. At Cornell we have put together several resources, one being a website, our website is www.disabilitystatistics.org. And you can find that site referenced at on my last slide, Slide 26. In that we have put together Census Bureau statistics, we have put together county-level statistics from the Census 2000, we have also put in time trend information from the current population survey at the state level, so we have state level time trends. We have, for small states, pooled them together for five-year blocks so that you can get an idea of a running average. We are about to put up statistics from the American Community Survey, but we also have a publication based on the American Community Survey, and that is what we call the Annual Disability Status Reports. You can find those on disabilitystatistics.org. The status report goes through and gives you lots of statistics at the state level. Currently the American Community Survey can do state level, eventually it will give us the capacity to do city level, and for some large counties we might be able to develop statistics. The purpose of disabilitystatistics.org in our Center is to try to get numbers that you can use. Also, on the other side we work with data collection agencies, one of the big issue that the Census Bureau has is they started to collect, the American Community Survey started to collect statistics and data on the population living in institutions, but they have a lot of confidentiality issues with how to report that. They don''t want to report for small areas or small states, because of confidentiality, the ability to link somebody to the responses. We work with those agencies to try to figure out how to identify the population with disabilities, and also how do you report that to the general public in a way that is useful. Again, you could go to disabilitystatistics.org, and you can get our Annual Status Report there, and that will give you poverty rates, employment rates, full time full year employment, it will give you some breakdowns by age, race and gender, and it will give you by type of disability, it will give you some state numbers, and trends over time. Let me close with one last statement. Probably the biggest frustration with disability statistics is that, not just that you can get multiple answers depending on where you go for your statistics. If you went to the CDC and asked them, and to the Census Bureau, Bureau of Labor Statistics. There are good things happening; there was a push during the Clinton years to get a better estimate of the unemployment rate of people with disabilities. We are actually lucky to have six questions on the American Community Survey. There will be seven questions on the current survey, which is the survey that does all the major employment statistics. You might even see monthly employment rates for the population with disabilities, which would be a tremendous advance. A lot of great things happening at the federal level. But the problem is that we still don''t have good county level estimates where a lot of independent living centers, where a lot of you may be interested in very useful statistics that could help you advocate or could help you make decisions or plan for the future. I think that that is always going to be an issue that we face, and there ways around, various ways around you can get some Social Security information, the number of beneficiaries. There is a lot of interesting things, but one of the biggest problem I have, it is constantly shifting. Each year, as they improve the data, so the American Community Survey, as I mentioned earlier was just released today, the 2005 numbers, they changed the definition of disability a little bit or they didn''t change the definition of disability, they changed the way they draw the sample to get federal rural statistics as they move to improve the American Community Survey. That changed the estimates, I can''t now compare 2005 to 2004 because they sample people living in rural areas are more heavily in that, and of course disability in rural and urban areas and geographical locations. And so with these improvements over time, it makes it difficult to compare time trends. For a lot of you, you may not be interested in time trends, but that is where my research is on. I have a lot of frustration with regards to that. The other frustration is very specific disabilities, another good thing about the American Community Survey, is that the new questions that they develop are going to separate out whether people, they are going to separate out visual impairment from hearing impairment. You have these great statistics at the local level from the Census 2000, but it lumped hearing and visual impairment together, there was no way to separate it because they were part of a single question around what they would call sensory, but that wasn''t useful for many people. So if you wanted to know how many people in your area might need a voting booth or need assistance in the voting booth because of a visual impairment, or have difficulty using a new touch screen monitor voting booth, you wouldn''t be able to get that information, and the information can be very useful. The good thing is that there are improvements happening, the frustration is that we are constantly revising the data. So if you ask me today what is the number of people with disability disabilities in the United States population, I would say probably over 50 million, and that is what the Census Bureau just said, they came out with an update of the 54 million number, it is now at about 50 million. How does that register with all the baby boomers aging, and disability being related to aging for a large number of people, why hasn''t it gone up from 54 million? Well, the answer is Census Bureau changed the way they define disability and they also radically made some changes to the way they asked the survey. Using the latest technology in telephone surveying and so there is a little bit different answer sometimes when they introduce new improvements. The 54 million number is the one that a lot of people will continue to go with and that is fine, it is based on an old survey. It is still a very large population and needs information about it. We hope at our Center to allow people to get access to disability statistics that they need to help make their case for their advocacy or policy need. So with that, I will turn it back to the moderator, Peter and I will field your questions.
Excellent. Thanks Andrew, a lot of information, a lot of great information, a lot of material. Let us give individuals an opportunity to ask questions as they digest some of the materials from the PowerPoint. If we could have the Operator come back on to give instructions on how people can ask questions now.
Ladies and gentlemen, we will now begin the Questions and Answers session. If you do have a question at this time, we ask that you please press the 1 on your touch tone phone. Please proceed.
Go ahead with your question.
What census, survey is it that is going to -- what survey is going to break out visual impairment and what definition are they going to use? Blind or visually impaired?
Let me see if I can call up the exact question. It will be something to the nature of and I can get the exact wording, it will be something like do you have difficulty reading news print? Even while wearing glasses. There will be more of a functional type definition, but it will be separated. And it will be both the American Community Survey is planning a question like that and also the Current Population Survey.
Thank you.
Sure.
Alright. Our next question please.
Our next question.
Go ahead with your question please.
Could you tell us how you become involve with the Community Survey since we are all sitting here and no one has ever been tested out of this group of disabled people?
How many people received the long form? That is a good question. So the long form, the Census 2000 long form, into one and six household. I have only met one person and all my talks that have ever answered that long form, and he received two versions, so he answered it twice. The key is that it is a sample, they will randomly select, not randomly, but they will systematic select households to participate in the survey. They actually don''t want people to call up and become participants because they want to get a good nationally representative sample of everyone in the United States. What they do is they draw your household. But you can get involved in that process, we actually are lucky to have a really good disability advocate sit on the overall census planning committee or some kind of planning committee, and I can put you in touch with that person if you want to give me a call. There a lot of ways to become active. The Census Bureau is actually quite open and so are the other agencies are too, quite open for input from the field.
Are you also monitoring the situation, with the military casualties that will be coming home, and counting how many of those there will be to add to your numbers?
Yeah, they do show up in my numbers. My numbers are based on these big surveys. The degree to which they sample those people, they wouldn''t necessarily show up. There is no way to tell them, they just, the Veteran status on these questions don''t reflect the current conflict. They just added the first Gulf War, so they are a little behind the time. But there are efforts both at the Veteran''s Administration and at NIDRR actually, because a large degree are traumatic brain injury, and also other NIDRR funded projects are addressing this issue. Will they show up in my statistics? The way these questions work for that population, will I be able to identify them and look at their employment or anything like that, probably not for a couple of years because it will take the Census Bureau time to change their veteran status questions. But there are a lot of work, we get a lot of questions. If you have any questions specific to that I can refer you to the agencies that are looking at the, another similar issue is was Katrina, and looking at the population disability that was displaced because of Katrina. And again there the statistics aren''t very good, they can no longer survey the city of New Orleans because the people are scattered everywhere. The Census Bureau really had to scrap to address that issue. I know I probably haven''t addressed your question, but if you are interested in specifics statistics, we can try to help you.
Ok, Andrew a question was e-mailed in prior to the session. Asked about somewhat on the topic here of how do researchers address or deal with the issue of populations that don''t view themselves or define themselves as being disabled or having a disability? Is that addressed through -- how surveys present questions? Anything in particular, individuals, elderly individual that is don''t view themselves as having a disability or being disabled.
Yeah, so all of this is based on self-report, within a household. The majority of these surveys are done at household level. And if a person doesn''t report these questions, they are not going to show up in the statistics. This is actually really interesting from a research perspective, question because the disability community and the disability research world has its very distinct ideas of what disability is. But they may not be related to how people view themselves. It is really difficult to say, if a person doesn''t view themselves as having a disability, then are they, do they have a disability or not? Who is to be the judge? The design of these survey questions is really actually quite an effort by these agencies. I will give you an example of -- what is the term -- a story I heard while I was on a panel. Someone said well, we were working with a population that is really high poverty population, and we wanted to ask about diabetes, and we asked the question do you have diabetes. Well, that question didn''t really work very well because a lot of people called it blood sugar, bad blood sugar, they didn''t call it diabetes, and so the phrasing of the question had a dramatic difference over the way in which services were delivered to a really needy population. There has actually been some work in this very area around diabetes, reporting diabetes in Canada. Canada has national health insurance, so we can get this information, the question would be easier to answer the person asked by e-mail if we had national health insurance or national healthcare, because we would have information on the specific health conditions that people have. You could -- actually looked in the Canadian data whether people reported diabetes accurately and a number of other conditions, diabetes was one that I just remembered. Actually people underreported diabetes, even though their medical record showed that they have been diagnosed with diabetes. And so, it is a pretty sticky issue because you are dealing with self report, but again in the United States we don''t have a system by which to track people with disabilities. We can barely do motor voter things like that. We don''t have a rigid system in the United States to identify the population. Other populations of interest are certainly the homeless population, the degree to which the Census Bureau is if we don''t do the long form during the census, are they going to pick up the population not living in traditional households. The answer is probably not. That is a tough situation that the Census Bureau faces. They will tell you that when they reached out to people living in non-traditional households such as the homeless, that they didn''t do a very good job of collecting that information back when they try to survey each individual. What we have is a problem of bad data versus better data.
Missing homeless individuals with disabilities as well and their information.
That is right.
Why don''t we go to our next question please.
Our next question is coming from the Captioner. One moment. Okay, please proceed.
The decennial census has been a 100% sample, am I right? Is the ACS also a 100% sample and if not, what level of confidence can be used to estimate numbers at the local tract and block levels? With disabilities as, there is actually a second question. To what degree are Acquired Immune Deficiency Syndrome (AIDS) statistics being incorporated into discussions of national disability rates, acknowledging as you have that impairment or condition is not equivalent to disability, necessarily. And I will pause there as there is another question.
Ok, well I apologize to the Captioner as I didn''t realize this was being captioned, I went quite quickly. Let me address the question. That is a really good question. 100% sample was for the short form, so that is basically age race gender and that is the short form. The long form, the first part of long form is short form, and that is used to draw congressional districts, and also used in school data. The American Community Survey is a sample of about 3 million households, so about 9 million people. They are also going to try to identify about two and a half percent of the population living in institutions. And so, 9 million from 200 million, you know, we are talking less than 5%, I believe, my quick in the head math is right. The coverage rates of the American Community Survey are no where near the strength of the long form. The long form you could get down to census track so even lower than zip codes, you know. You could get this information previously. Certainly at the county level you could get long form statistics. And to agree that whole world is changing anyway with regard to confidentiality. I am not that we will see the same statistics coming out that we see now that we have in the past because of confidentiality in the existence of this massive private data. It is becoming much more tighter with regard to the way it releases information. Because if you knew somebody in your census block that have a disability you might be able be able to identify and then also identify some characteristics such as employment and income based on that. So that world is probably going to change anyway. To answer your question more specifically, you know, probably the best we will get out of the Census Bureau is going to be county-level estimates, from the American Community Survey that is probably the best you could hope for. In terms of my ability to address the data, the data that they released to researchers they give us the raw data but it is scrubbed private identifiers. They might not even give us county level identifiers to allow us to generate general statistics such as percentage with high school degree, a lot of times they don''t give you all the statistics that they can possibly give from the data sources. So it is going to be much more strained. So, short answer is probably not going to get it, probably only get at the county level at best. The second question was, I believe, AIDS, Human Immunodeficiency Virus (HIV)/AIDS, did I hear that correct?
Correct.
AIDS, to the degree it is a disabling condition would be in this population, but if it is not disabling, if it is not causing difficulties in the way they phrase these questions that population is not going to be identified by any major survey. Now the Health Interview Survey out of the CDC might be the best hope if you are interested in disability related AIDS statistics. To get that information but I haven''t seen that survey in a longtime.
Why don''t we go to the next question the Captioner had.
Thank you, I need to scroll back to my text. The question is, what are your thoughts on the polling survey conducted by National Organization on Disability and the Harris Poll? The numbers produced by their poll are often cited by the media and disability organizations.
Ok. My take on the Harris poll is that it is a great vehicle for getting really topical information about the population with disabilities and getting really specific. It is great that a national organization has a)the resources and b)the interest and c) can really be flexible in the way they address the issues facing the populations with disability to a degree that the federal surveys and the statistics that I can generate could never touch. The last time the federal government did a disability related survey was back in 1994. There is no plans at all to do a follow-up to the there is a health interview survey on disability. The Harris poll gives us a great deal of information about the population with disabilities. One thing issue what it can''t do compare to say the Census Bureau and the Bureau of Statistics and the CDC, is get a really big representative sample. So, whenever I see the Harris result, I always take them with the idea that well, this might not be exactly what is going on but that it is probably pretty darn close. For me that poll is useful for generating ideas and hypotheses about what might be going on with the populations with disabilities. Although its national representativeness is I think, always have questions about how the sample is drawn and what was the response rate and all these kind of scientific terms that the Census Bureau has a lot more control over. So from my perspective they are very informational, but if I was going to change policy or call them the real numbers, I would need a lot more information on how the sample was drawn, and also need backup from other surveys. So I think the thing I have heard most about disability statistics is, if you really find something like the declining employment rate, you know you have to back it up with other statistics sources. That is my take on the Harris Poll. It is a good question. I hadn''t thought about how I would say that.
Tying into that Andrew, another question that was emailed in. We have a lot of organization, disability organization participating today, how can they most effectively use disability statistics to make a case for policy change? I think you touched on it a little bit there, that you can''t rely solely on one set of numbers.
Yes, the one thing that we try to do at our Center is to give statistics that you can cite, so, a lot of times when you hear the 54 million number, or the 60% to 70% unemployment rate, or there is another one that is running around without a citation and that is the 220 billion dollars in discretionary income. You know, these things that run around without citations can be really harmful, to the extent that when the 60% to 70% unemployment rate was put into a speech by Department of Labor Secretary Chow, she was like, that can''t be, or that somebody in her agency flagged that it can''t be true, and in fact it is not true. How can you can you use them? That is a really good question, because for me to answer that I have to know what that agency is looking for, what kind of statement are they looking to make? From my perspective, statistics are two things, they are part of science, so I use them to test hypothesis and try to draw characteristics about the population with disability and about policy impact. But they are also a part of rhetoric, and if you get them wrong, you can deflate your cause, if they are not credible or you don''t have a citation to back it up. So that is what I would do is look around for the information and back up your statistics. I will give you some examples, I work a lot with vocational rehabilitation agencies, state level agencies, and a lot of times they ask what statistics to should we use and which are the good statistics. And it actually takes part in a dialogue. I don''t know if I can put out statistics on my website that will satisfy everyone''s needs. You know you always have to have the basic population number or a percentage. That is where all statistics that are related to disability will start. Then usually they will break down into children''s issues, people over 65 issues and working age issues. And if it is working age then we usually go to employment first. And so to choose those statistics carefully, and when I work with the agencies what they really wanted to know were, the industries people with disabilities were working in, compare to people without disabilities. So one of the things that we do is we always compare the population, the statistics to the population without disabilities. People will ask me what percentage of people with disabilities want to work, right? Well, we can''t really get at want to work. Because at the right wage everybody would want to work. And so, what we do is we look at whether people are working or aren''t working or whether they are looking for work or not looking for work.
The discretionary spending figure is cited in the Department of Justice''s document, Expanding Your Market for Individuals with Disabilities.
They don''t give a cite for that.
Well, they actually referenced the Department of Labor.
Yeah, but if you keep digging, keep going, you won''t find it. If anybody finds it, please contact me. You keep going backwards, you will never find the survey. There is actually a push, now that the BLS is developing statistics for the current population survey is to get the same set of survey questions on the current expenditure survey, which is where you get a lot of the discretionary income and spending money statistics. There is a real question of people with disabilities because of their need and conditions, you know, is the poverty rate the right thing to look at? Because they have lots of other spending patterns for equipment and so forth.
Let us go to our next question please.
Our next question.
Two-part question about the way disability is defined. First, a comment on how the Americans With Disabilities Act attempts to define that for practical use and litigation, and then a comment on what I sense is forces moving in opposite directions in terms of the quantity of people, is the force that wants to justify more policies, federal policies, and litigation so forth by people within the disability community and politicians to make the numbers as large as possible, and then there is those people that want to benefit from the allocation of scarce resources limited to people with disabilities that want there to be a bright line around disabilities and those allocation of resources include things like handicapped parking permits, favored seating in sports and entertainment venues, the ability to bring an animal with them in a store or restaurant, those seem to be pushing to say that we have to be careful about who is certified to get those scarce resources. Thank you.
Yeah, it is an interesting comment. There is certainly, when I give the statistics out, if I talk to, it depends on when I talk to people, around their budget time or if it is around their needs assessment time. If it is around their needs assessment they want a large population that needs their services. If it is around evaluation time, they want to show well, the employment rates went up in your state, so that they could possibly tag onto that to show improvements in their states. And so the citations of statistics it really depends on what people are using them for. Sometimes they want large numbers, sometimes they want declining numbers, sometimes they want improving numbers and a lot of times I will try to stay out of that and just try to give them what they ask for. In terms of the allocation and drawing the line, I can see that on the local level with the examples you cited that they would want to draw the line and say disability is this and not this. And not have to accommodate additional people with varying different conditions. I will take you on your word that that is going on. I can certainly imagine it. That doesn''t really happen, when I talk to Census Bureau employees, or Bureau Labor Statistics employees, they just want to get the number right. They want to focus on the survey questions and whether people understand these questions and whether this is an appropriate way to identify the population. Kind of outside of the realm of policy, you know, if we ask the ADA question, if we really base it on how the ADA describes disability, you know that might not do well for Social Security who has a vested interest in how the population with disabilities, not a vested interest but has specific needs for how disability is defined. The fact the United States takes lots of different approaches at the governmental level to define disability is not surprising that the surveys reflect it. I bet you people will -- that is a part of their life in certain venues because it is environmentally determined. They may consider themselves a person with a disability when doing a particular activity, but not another activity. So and that might depend on the type of disability. That kind of addresses your comment. Interesting comment. I think people are interested and they want an answer to what the population is, but the second you start scratching the surface there is a lot of different reasons why they want that definition.
True with the use of any type of statistics.
It is true, it is true, there is a big issue with race, and the acknowledgement that there are now, that probably always was a large population, but now there is a real recognition of that, that the Offices of Management and Budget (Office of Management and Budget (OMB)) actually mandated that all federal surveys and federal documents collect race in the same fashion, and so there is this kind of a real drive to get consistent statistics for race.
Ok, can we have our next question please.
Our next question.
Regarding slide 18, where you note that regardless of which survey was used, the employment rate is declining over time, and I was kind of stunned by that, because that is despite the ADA, despite Ticket to Work. So, I am wondering do you have any observations or thoughts about why that is happening?
Yes, I have lots to say. I have to remember that this is being recorded so I have to be very precise. I would reference you to a book that is published by the Upjohn Institute that discusses this time trend at great length, it is called The Decline in Employment of People with Disabilities: A Policy Puzzle. It is by David Stapleton and Richard Burkhauser, two colleagues of mine, actually they didn''t write the books, they are editors of the book. And I have a number of articles that I participated in. There is quite a lengthy exposition of the on going hypothesis and I would say that term very strongly, that from my perspective nobody really knows why this decline is occurring. Some of the original lines of inquiry were well, it is the data. The current population survey is the survey that a lot of people are using early on in these discussions, and the work limitation variable as the single question. What is question of how good a quality that question was or whether it was appropriate to use. So that is when we started doing a lot of our research that said okay, let us look at all these other definitions and let us look at all these other different surveys. And so, we kind of concluded from all the basic, from all the statistics that we did, that it is not the data source. A lot of people originally pointed on the ADA actually. A number of researchers focused on the ADA as the possible link, that there is a particular paper by some MIT professors that started this literature, and I would have to say that their research pointed to hiring as the problem, not dismissal. The ADA slowed the rate at which people left their job but also slowed the pace at which people with disabilities entered a job. But again, we have looked at a lot of that research and replicated that research, and actually some of the statistics that we showed that the decline actually began before the ADA, so back to 1987 depending on age and gender. And so that is not, the evidence on the ADA as being the cause is weak. Now, there is one other big hypothesis that is out there, that there are several others smaller ones, like the cost of healthcare, the lack of privately provided health insurance, the decline in employer provided health insurance and the quality of that insurance is going down. But there is one big hypothesis that is out there which is the focus of a lot of attention, that is the Social Security Disability Insurance and SSI, and you mentioned the Ticket to Work. It has long been recognized that it is difficult to get people, it has long been recognized that SSI and SSDI present a negative incentive to going back to work. You know, a lot of times when I talk to people alright, suppose you were someone who the onset of disability is relatively new, you spend two years getting onto, on average of two years getting on to Disability Insurance or SSI, are you just going to run back to work and potentially lose your benefits? The way private health insurance is paid for in the United States, and also the income support that the SSI provides you know, you would almost be nuts to go back to work. It would almost be such a major decision to try to go back to work. Those disincentives have long been recognized. The Ticket to Work as you mentioned was one possible way of addressing that. There are some new Demonstration Programs, and I think I mentioned them earlier. The earlier intervention program and the what is called the Two-For-One Offset, where you for every two dollars you earn you only lose one dollar of your benefit. So those are innovative approaches. Ticket to Work was innovative approach for funding VR services, but there hasn''t been much to support that that is actually working.
Excellent. Do we have additional questions from the Captioner at this time?
I don''t believe so, we do have some more people on the queue.
Ok, let us go to the next question on the queue please.
Our next question.
Go ahead with your question please.
I have a question about institutionalized statistics in particular I think you mentioned the 2 million. What method do they calculate that? Go to institutions, have them give their estimates or?
Yeah, ok, so that is a great question. To actually pin this down, and get the documentation of this is not easy and this is my best information that I have. There are two papers out there and you can find them at Cornell, and I will be happy to send you the electronic versions of a brief one, on defining the institutionalized population. This is how I understand the Census Bureau goes about it so, it is actually the biggest thing starts with what is call the Master File. The Master File contains all household addresses and also addresses of what are considered institutions. And so from the Master File of institutions a sample is drawn. A sample of institutions now previously would have been a census of them. But now they are doing a sample of institutions. It is very important that that File be up-to-date, how group homes are categorized is, I think an opened questions. I still have never really seen it documented. It probably is there, in a very large report, but what happens is they send, they used to send a census taker out, now they would send a survey out, and there is a special form for them to report on people living in their institutions, so it would be a proxy report from the institution administration themselves. So there is lots of -- the second you - I think that this is a really interesting area to explore is, how well do the administrators respond for people? Right, we already know that some in households, a lot of times it is a proxy response by design, it is a proxy response that one person answers for the household, but what about an institution? Are the people responding appropriately? There is also the question of -- for me there is just so many questions raised with how you ask the question. Is going outside, is the work disability relevant, because they are in an institution. Is going outside the home disability relevant? Because they are in an institution. Should we be capturing other questions once we recognize these people are living within the institutions, whether they are confined to that institution or not confined in that institution, that is another question. I think there more questions than answers with regard to how that population is identified and what is the best way to identify the population with a disability living in an institution. That probably raises more questions than I answer questions but that is the best way I know of the area.
Alright, I think we have time to take one more question before we get to the bottom of the hour.
Our next question.
Go ahead with your question.
Thank you. On Slide 3, Question 1, you refer to the normative nature of disability. Can you expand on what you mean by that?
Yes, actually when I read that sentence I was like wait normative, that is a really strong statement. For me, disability is to idiosyncratic to the person, that it is a personal characteristic that would be difficult to identify in a survey. It is not just complex, I mean we could talk about complexity, you know that there are different environments by which people operate their different ways in which the person''s body and mind interact with that environment. And for me the reason why I would say it is normative, is because it is a lot of it has to do with history, of how that person perceived their disability. A long time ago you know, when the questions were being raised around the CPS work limitation questions, I had the opportunity to talk with some people, and their answers were quite different even though their conditions were exactly the same. You know, they all had the same condition and if somebody was doing an external evaluation of who should say they have work limitation, they would have say all of them but not all of them said they had work limitation. And so for me, the concept of disability is normative, it is value weight to that person''s personal values and the experiences they hold. And I don''t mean that you know, what I mean in essence why I would use such a strong word is that, this idea of a positive or an objective truth to the number of people with disabilities I don''t think we will ever know for sure, it is not because it is just a complex. It is because it is a normative belief that people have. Does that make sense?
Yes, thanks.
Thank you very much for the question. We have gotten down to the bottom of the hour. For those of you who were in the line to ask questions, did not have an opportunity to do so, I would encourage you to go ahead and forward those questions through the ADA-Audio website, and we will try to get you the information, answers to those questions you may have had. You may also contact your regional ADA and IT Center by calling 800-949-4232 to get additional information. I want to thank Andrew for joining us today, a whole host of great information, and as always we truly appreciate the speakers that join us on the Audio Conference Series. I want to remind everyone that next month on September 19, the session for September will be Accessible Travel Options by Land, by Air and by Sea. This session will take a look at issues still facing accessibility in hotels, airplanes, and cruise liners. So please join us for that session, you can get information at the www.ada-audio.org website or by calling your regional ADA and IT Center at 800-949-4232. I want to thank everyone for joining us today and hope that everyone enjoys the rest of their afternoon. Thank you.
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