1 1 This is a test of the system. 2 3 4 Utilization and analysis of Census2000 data 5 to inform disability advocacy and employment 6 policy 7 8 9 10 ANDREW: 11 MS. RICHARDS: Good afternoon. This is 12 Laurel Richards with ILRU in Houston and welcome 13 to today's webcast. Today we are talking about 14 employment and disability and examining the census 15 2000 data and how it will serve us in advocating 16 for greater employment opportunities for people 17 with disabilities. We're happy to present today 18 Andrew Houtenville from the Cornell program on 19 employment and disability who is a -- Andrew, do 20 we call you a secondary statistical studier? 21 ANDREW: I will describe what I do. 22 THE OPERATOR: We want to start by 23 acknowledging the support of NIDRR, the national 24 institute for disability and rehabilitation 25 research for these kinds of presentations. By 2 1 which the research findings that are being funded 2 by NIDRR and other research programs are presented 3 to those of us who are -- who have a stake in the 4 outcomes. Many of us are consumers, people with 5 disabilities, family members. Many of us are 6 service providers, working at independent living 7 centers or voc rehab departments and agencies, and 8 we may not be researchers but we have an interest 9 and a stake in what is found by our nation's 10 researchers. The issue that we will cover today 11 is employment. Prior to that, a couple things 12 just so you will understand the procedure. We 13 will have a Q and A period probably toward the 14 end. Andrew will call for that. But you will 15 notice on the webpage beneath where the real time 16 captioning is put in, there is a place that says, 17 I think it says click here to e-mail a question, 18 and when you click on that, it brings up your 19 e-mail software and some of you will be outlook 20 and those of you with others, it will be whatever 21 that is. It will be preaddressed and will be sent 22 directly to the ILRU office and Dawn Heinsohn will 23 be reading the questions, so at any time, submit 24 questions or submit comments and at the time 25 Andrew calls for it, we will build those in. 3 1 Following this presentation, and for about a 2 four-week period, we will have a discussion forum 3 on our website for this subjects. Things may 4 happen after this has happened and Andrew has 5 agreed to field questions off of this. So feel 6 free to come back to this page tomorrow and 7 subsequently to click on the link that will take 8 you to the archive and the discussion forum 9 section. 10 With that said, today we will, as we say, 11 talk about employment. For people with 12 disabilities, few issues are as important as 13 employment. It gets to the heart of ones, not 14 just self-esteem and purpose and the fact we are 15 doing something so worth while that someone would 16 pay us for it, but also it has to do with 17 contributing to the community. From the other 18 perspective, the perspective of the federal 19 government, it is folks who are contributing to 20 the tax program and are making contributions in a 21 physical way. But at the same time, few areas of 22 life for people with disabilities are so full of 23 Barriers from hiring discrimination and access and 24 accommodation, loss of benefits, it is a very 25 serious issue, as a consequence, the country has 4 1 committed significant resources to addressing it. 2 In fact, we have a -- I don't know how old -- 3 almost a century old rehabilitation program, 4 vocational rehabilitation program. And 5 researchers report extremely large numbers of 6 people who are not working now, people with 7 disabilities who are not employed, they want to 8 have jobs. They want to work. For those of us 9 who are advocates and those of us who are 10 working in the vocational rehabilitation fields, 11 independent living fields, who want to assist them 12 with disabilities in developing the skills or 13 redeveloping skills to become employed, it is 14 important to know, that, A, people with 15 disabilities want to work, and B, what are the -- 16 what is the state of the union as it were on 17 employment of people with disabilities? And the 18 census data is one of the primary sources of 19 information on this. And today, Andrew 20 Houtenville is going to present on his study. He 21 is the principle investigator of one of NIDRR's 22 projects to really analyze the census 2000 data in 23 terms of employability of people with disabilities 24 and lack of employment and nonemployment. With 25 this kind of information, those of us who are 5 1 advocates have add mow in addition we would need 2 to convince policy makers that there is this body 3 of people who are interested in employment. So, 4 Andrew, I would like to turn it over to you now to 5 talk to us about what this census data has to say 6 about employment. Welcome. 7 ANDREW: Thank you very much, Laurel, and 8 ILRU for asking me to participate. This is a 9 great forum, one or which participated on before 10 and we can count on feedback for this forum. Let 11 me introduce myself first. My name is Andrew 12 Houtenville. I'm from Cornell university. I'm a 13 assistant. An economist by training. I 14 specialize in secondary data sources, basically 15 surveys that the federal government produced. I 16 also work with administrative records that the 17 government produces and try to use those sources 18 of information to look at policy. And the impact 19 of policy on people with disabilities with regard 20 to employment primarily, but also with regard to 21 other forms of participation and economic 22 experiences, you know, income, property, wealth, 23 and things like marital relations, family 24 relations and things of that order. 25 So my specialty is really in looking at 6 1 national data sources to look at the preference of 2 disabilities and social participation in people 3 with disabilities and always to compare that to 4 people without disabilities. Secondary data 5 sources are really quite a challenge because many 6 times when there is good disability information, 7 there is terrible employment and income 8 information, and other times when there is good 9 employment and income information, there is often 10 insufficient disability information. So it really 11 poses a problem, and it really strikes the need to 12 -- a call for better data to look at people with 13 disabilities and their social participation. 14 Other parts of my interests are poverty 15 issues and returns to education for people with 16 disabilities. Basically in terms of earnings and 17 employability, what does a degree or a credential 18 -- how do those credentials increase the capacity 19 of a person to work? Also, I like looking at 20 personal and familiar family adjustments to people 21 with disabilities. With that said, that is kind 22 of my general interests and it is always to use 23 secondary data sources. I participate also to 24 some extent in the creation of the data sources 25 via consulting with agencies who collect the data. 7 1 One thing I would like to highlight and it 2 really struck me before I began my presentation 3 formally is what Laurel was talking about. 4 Really, I think there is an increasing shift away 5 from what would be called paternalistic support 6 programs, basically to give a certain degree of 7 income or replace earnings due to an accident or 8 loss, and then have people with disabilities just 9 kind of go away, either in an institution or in 10 their home, but just give them enough income to 11 survive and guarantee that they are not in 12 complete poverty, and then provide nothing after 13 that. Really, I think since the 80's and 14 certainty into the 90's and today, there is 15 certainly a push towards work. And I think that 16 that is really the value of the disability 17 community's push towards inclusion, inclusion in 18 work, inclusion in the labor work, inclusion in 19 social roles. At least the opportunity to pursue 20 those roles free of bare Barriers and signal. So 21 I appreciate Laurel's comments and that is how I 22 view a lot of the policy changes, whether it is to 23 work, work incentive programs, it is really to get 24 people back to work. Not necessarily back to work 25 in that negative connotation but to allow people 8 1 to go to work who want to go to work and to remove 2 Barriers, so I really think that that is something 3 that policy is struggling with, to understand how 4 to best do that. 5 Okay. I should first note that before I 6 start my formal presentation, there are materials 7 on the website, in particular, I want to focus 8 your attention to the Census2000 long form, I 9 don't know if people have had a chance to look at, 10 but there is a text version we produced and a PFD 11 version which we down loaded from the census bury. 12 I would like you to look at that, if you haven't 13 looked at it already, because we have a tremendous 14 compassion at this to generate statistics, or we 15 are developing that for people who want to do 16 advocacy work and to use statistics in their 17 advocacy, but we can't produce everything. What 18 we would like to do is find out what people would 19 like. We have a general idea of what we would 20 use, if we were out there in the field advocating 21 and when we go out and do some advocacy ourselves, 22 but we want to get a better sense of what people 23 out in the field would like, so what I'm asking 24 you to do is to look through the Census2000 long 25 form either today during the presentation or after 9 1 the presentation, and you can go through the 2 discussion board on ILRU's website to give me some 3 idea, what would be the top five statistics, you 4 know, for people with and without disabilities. 5 Look over the forms, think of the ones that are 6 the hot topics, whether it is income or housing, 7 so I really would appreciate that feedback and in 8 part, that is with why I like doing presentations 9 like this because it gives me a chance to solicit 10 that feedback. At the end of the presentation, 11 what I'll do is call on dawn to give me some 12 feedback that people might have been able to 13 submit while e-mail while I'm talking. So keep 14 your attention on the long form, but also on what 15 I'm about to say. 16 Let me first give you an overview of 17 disability statistics and research and 18 dissemination. I want to point out that a lot of 19 our efforts are involving around dissemination and 20 getting the statistics out into the hands of 21 people who can use them to advocate and to do 22 policy evaluation, program evaluation. As well as 23 research to look at the validity of data, to look 24 at patterns and to conduct research. So the 25 Cornell has -- Cornell university research and 10 1 rehabilitation station training center on 2 employment policy is funded by NIDRR. That is the 3 national institute on disability and 4 rehabilitation research, which funds this webcast, 5 but also funds our research, and we really looked 6 at national data sources to look at the impact of 7 employment policy on employment for people with 8 disabilities. So we have looked at trends in the 9 employment rates of people with disabilities and I 10 presented some of that research two years ago 11 which might be on archive if you are interested or 12 you can e-mail me and I will send you some stuff. 13 We are also funded by NIDRR to look at the 14 Census2000 with respect to demographics and other 15 outcomes so not just employment, but income, home 16 ownership and other characters that you can see in 17 the Census2000. We will also be doing an analysis 18 of that to see how the reporting of disability is 19 related to the local environment because what you 20 can do with the census is get very local data. 21 Also, at Cornell, we have been recently awarded 22 the statistics training center. 23 THE OPERATOR: I didn't know that was you 24 all. Congratulations, that was a tough one. 25 ANDREW: Yes, it was. We are excited because 11 1 we know the competition was quite good. There 2 were a lot of people in the mix. So what we have 3 been -- what we are funded for is basically -- I 4 believe I forwarded an abstract. Perhaps I can 5 share more information later, but basically what 6 we are doing is kind of mentioning the same model 7 and doing more training and outreach. Look at 8 different data sources, record, as well as 9 Census2000 and other surveys to do the same work, 10 to try to get it out into the hands of people who 11 can use it for decision making or advocacy or 12 research. And also to inform the creation of new 13 data sources, as they are proposed by the 14 government and other agencies, to kind of have a 15 say and to lead that development of new survey 16 instruments or modification of existing survey 17 instruments. 18 So, that is a great opportunity that is for 19 five years. So hopefully, we will be able to do 20 more of this stuff in the future. We will also be 21 doing a lot more training, in particular, focusing 22 on independent living organizations and try to -- 23 vocational rehabilitation organizations, advocacy 24 organizations, and others, to you are ban planners 25 and outreach to those groups and try to create 12 1 what we call temp plates where people can put 2 their statistics in templates and when you go to 3 our website, you can call up a template and plug 4 in the parameters that you want, your County, 5 gender, race, then the template will be filled in 6 with the number, so we will look forward to 7 building our website and our capacity to outreach 8 to people. 9 We are also funded in another smaller project 10 by the national center for educational statistics 11 to study the composition of students with 12 disabilities and their proficiency scores, the 13 nation's report card it is sometimes called. That 14 can give us some quite good information on 15 accommodations for students, and look at that 16 across the 50 states. 17 Okay. That is a brief introduction to 18 disability statistics and research at Cornell. 19 What I'm going to do is kind of tick through the 20 Census2000 and give you some introduction and give 21 you an idea of what can be done with the 22 Census2000. In terms of advocacy, I'm looking for 23 people to tell me what they want to do and to 24 facilitate their advocacy, rather than us sitting 25 up in New York telling people what numbers they 13 1 should use and what numbers they should see, what 2 they should do and how they should do it, but 3 really try to get people to use it and to let us 4 know how they are using it. So, is the 5 Census2000, many of you answered the short form, 6 which is basically used to delineate voting 7 districts and they ask basic questions of age, 8 race, gender. One in six households received the 9 Census2000 long form, the long form, which you 10 have a copy of, is used to create policy in the 11 United States, to allocate resources at the local 12 level, and it is really used a lot with regard to 13 housing funds, transportation funds and also to 14 some extent the ADA and support for outreach 15 around the ADA. It is widely used by community 16 development people and planners. It also contains 17 six disability questions, which is an upgrade from 18 the previous two questions that they asked in 19 1999. Unfortunately, they do change it every ten 20 years so it is hard to look at trends over time. 21 On the next slide, number five, I don't know 22 how many people are following the slides, but on 23 the next slide, number five, really the statistics 24 are quite powerful. You know, the Census2000 is 25 one of the only sources where you can get local 14 1 level information, such as the county, city, town, 2 reservation and even smaller census blocks, and 3 you can actually get a lot of this stuff off the 4 internet, which I will describe later. It also 5 provides statistics on a personal level and on a 6 personal level and also on the household level. 7 It provides a variety of different social 8 participation statistics, such as employment, 9 poverty, income, mass transit usage, educational 10 attainments and geographic mobilities and many 11 others. Statistics are available from the bureau, 12 they have generated a lot of these statistics 13 already and they are available on their website 14 and they have broken down statistics by gender, 15 age, race, and the type of disability. There are 16 six categories. I will describe them. And many 17 more -- they have pregenerated some of these, but 18 many more can be generated. In part, that is what 19 we are funded by NIDRR to do in the coming years. 20 Some of the participation statistics are provided 21 for the population with the disabilities, 22 currently provided by the census bureau, in 23 particular, poverty and employment, you can 24 already go and get off their website and compare 25 people with and without disabilities. 15 1 Next slide, slide number six, accessing 2 statistics. There are a number of ways you can 3 access statistics that are already pregenerated by 4 the census bureau. There is a census bureau 5 publication on disability, which is kind of the 6 brief, policy brief they have put out and I have 7 given you on the power point presentation and the 8 text version of the power point presentation, I 9 have given you the location. It is apparently 10 only available in PDF form, but I would imagine 11 they have a way to get anytime text form. There 12 are also some basic tools, profiles. I have given 13 you a document that will let you now how to do and 14 get the basic prevalence unemployment rates. 15 These are called the profiles. It will give you a 16 lot of other data about your locality. There is a 17 document off the ILRU web page Census2000. It is 18 a Microsoft word document, but there is also a 19 word document there. This will help you interpret 20 the statistic as little bit. I give some 21 statistics with my home town, using the data, the 22 statistics from my home town, it gives you a 23 couple sentences that you can feel free to use in 24 interpreting the statistics. 25 More detailed statistics, other than these 16 1 profiles, are available through the Census2000 2 website, which I have given on the presentation. 3 However, this is a really, really complex website. 4 I'm still trying to work my way through it half 5 the time and I have a hard time remembering which 6 way to turn next. We are trying to develop a 7 tutorial to put on our website to help people go 8 through the website. It is reasonably accessible 9 in terms of screen readers, but, again, that is 10 reasonably accessible. 11 What you can do is to choose tables that are 12 pregenerated and get them down to your census 13 block level so you can get them to a very local 14 level. And you can get the disability statistics 15 at a very low level. However, these are 16 pregenerated so what you see, what you can find, 17 is what you get. 18 Now, another way of accessing the data so to 19 get the raw data, to actually get the individual 20 responses and household responses to the census 21 bureau to the survey, to the long form survey. 22 With these files, you can calculate cross tabs 23 that are not pregenerated by the census bureau, so 24 you can look at disability and occupation or 25 disability and industry. You can compare people 17 1 with and without disabilities with regard to the 2 value of their home, if they are home owners. You 3 can do all the possibilities that you see on the 4 long form. And that is really what we are fund 5 today do by NIDRR is to solicit from the field 6 what people would like to see, and then post it on 7 our website, do some of those calculations 8 ourselves with the 6 percent sub sample of raw 9 data, and disseminate those through our website. 10 In the future, one thing, you can go to 11 disability statistics.Org and that is really where 12 we will be posting a lot of our calculations and 13 our data, so that is WWW.disabilitystatistics.Org. 14 We will be using the files may crow use data 15 files. Another way to access -- I don't see it on 16 my slide -- is in the future, the census bureau 17 might. They never really kind of gave a release 18 date, but in the future T. census bureau might 19 allow you to access the raw data, not to down load 20 the raw data, but to access 100 percent of the raw 21 data from the long form and do cross tabs on the 22 web. Now my guess is they are still working out 23 the bugs at the inner face and they have not 24 commit today a release date for that. It always 25 seems like a wish, not necessarily a deliverable. 18 1 Some day, you may be able to work with the raw 2 data on the web and check off the boxes of, you 3 know, cross tabs that you want to do of statistics 4 you want to generate, and it will generate it for 5 you. 6 The next slide, the Census2000 long form 7 disability questions are on the next slide. Let 8 me read them out, just in case people are having 9 difficulty accessing the documents. Does this 10 person have any of the following long lasting 11 conditions? One category they put together, 12 blindness, deafness, or severe vision or hearing 13 impairment. They can answer yes or no. They want 14 those together and that automatically causes 15 problems because obviously these are quite 16 different impairments. 17 B, a condition that is substantially limits 18 one or more basic physical activities, such as 19 walking, claiming stairs, reaching, lifting, 20 carrying, yes/no to one that one. These are 21 trying to get sensory impairments and mobility 22 impairments and that is the interpretation they 23 give to them. The next question is because of a 24 physical, mental or emotional condition lasting 25 six months or more, does this person have any 19 1 difficulty doing any of the following activities: 2 A, learning, remembering or concentrating. That 3 is one group there. Yes or no. B, dressing, 4 bathing, or getting around inside the home? Yes 5 or no. 6 C, if people are over 16 years old, they will 7 ask this question: Going outside the home alone 8 to shop or visit a doctor's office, yes or so? 9 Then the last question is, working at a job or 10 business? 11 Now, so what they have done is they have 12 tried to capture in some sense a mental impairment 13 with the first one, learning, remembering, 14 concentrating, a self care activity restriction in 15 dressing, bathing or getting around inside the 16 home. Then they have tried to get some outside, 17 you know, going outside the home and working at a 18 job, so does the condition impact their ability to 19 go outside the home? These could be not 20 necessarily to the physical or mental or emotional 21 condition but due to environmental Barriers, in 22 some sense these questions still reflect a bit of 23 the old pair dime where the inability to perform 24 and function is due to a physical, mental or 25 emotional condition. They have left out, does 20 1 your environment prohibit you from performing. 2 These still fall within the realm of the medical, 3 what is the term the medical model, where it is 4 the condition that dictates the inability to 5 perform an activity. But they are moving in that 6 direction because what some of my research is 7 doing is looking at the questions on basic 8 impairments and seeing how local -- how local 9 characteristics influence people's responses to 10 the next set of questions, to see what percent, 11 what degree the local environment plays on 12 converting an impairment to an activity 13 restriction. 14 So, I hope that went well for you all out 15 there. 16 Now the Census2000 questions -- I will get to 17 that later. Some criticisms and concerns. That 18 is what I wanted to say. 19 If you look back at or read back on slide 20 seven, the six questions, one thing you look at 21 and can perceive is they are very long, and there 22 is a lot of concern initially that these are too 23 long and by the time somebody gets to working at a 24 job or a business, they might have not remembered 25 that it was, do you have any difficulty working at 21 1 a job or a business. And so they -- there is a 2 lot of concern that these things could be 3 misrepresented. So there was some concerns from 4 the very beginning. There are also some concerns 5 from the very beginning that these break downs are 6 very broad and put people that are very different 7 in the same category, and that is absolutely true. 8 That deafness, blindness, severe vision 9 impairment, those are quite different impairments 10 and lead to quite different disabilities and 11 activity restrictions. So, you know, having them 12 in one category -- also, everything is a yes/no. 13 There has been some research to look at the center 14 for disease control and prevention, CDC has funded 15 some researchers to look at what if we made these 16 -- gave them a five-point scale and looked at the 17 difficulty, you know, the severity of these 18 conditions and these activity restrictions? 19 So that was always a criticism is that it 20 really lumps people together in to broad 21 categories. I should say that just having six 22 questions regarding disability on the long form is 23 a real, real, all be it, limited question, it is a 24 good signal that disability is on the long form. 25 There may be some moves in the end to take 22 1 disability off the long form and we have to keep 2 people apprised of that. That is one of my jobs. 3 If I ever get wind of that, it is to report to 4 people that disability can be taken off the long 5 form, because there is no legislative man date to 6 have them on the long form. And what we want to 7 try to do is work towards making sure that there 8 is sufficient legislative mandates to have a 9 disability question or set of questions on the 10 long form. 11 I should say there also there is a lot of 12 research going into producing better disability 13 questions, not surprisingly, given the diversity 14 of the disability community and the fact that it 15 is both environmental and personal characteristics 16 that are involved that coming up with a short set 17 of questions is very difficult and requires a lot 18 of study and time unfortunately. 19 Also, in some analysis, coming back to the 20 Census2000 long form, there is some -- has been 21 some analysis, some preliminary evidence from the 22 census bureau that indeed the questions, the last 23 two questions going outside the home and 24 difficulty working, going to a job, that there has 25 been some misrepresentation of those numbers and 23 1 that these numbers actually might overestimate, 2 any number you see on disability as a whole, 3 coming out of the Census2000 could be an 4 overestimate of the population with disabilities, 5 in part because the questions were so long, but 6 also in part because there seems to have been some 7 typical on the part of interviewers, families that 8 did not send back the long form received a visit 9 from a census taker, and the census takers 10 apparently may have misrepresented the last two 11 questions, instead of saying, you know, implying 12 that -- the question is, do you have difficulty 13 going to work or difficulty going outside the 14 home, the answer ended up -- the question ended up 15 sounding like do you go outside the home or do you 16 go to work? So it ends up being catching 17 employment, rather than difficulty in going to 18 work. So, with that said, you know, we have -- 19 there has to be some careful work and there is 20 still preliminary stuff and people are working on 21 try to carry out -- remedy that issue, but the 22 first few questions seem to remain stable and 23 solid. 24 With that said, this is also another source 25 of data that is called the American community 24 1 survey, and this is a census bureau survey. It is 2 called the ACS sometimes, as in apple, C as a 3 community, S as in survey. It is a survey by the 4 census bureau and it has the same questions as the 5 Census2000 long form but it doesn't suffer from 6 what is called the page-turn problem because there 7 is a different way, instead of sending out a 8 census taker, they have professional people call 9 up, professional callers call people up and ask 10 them about why -- ask them the questions, if they 11 haven't returned the form so it doesn't suffer 12 from the same problems. In part, this is how they 13 found out the problem. They compared the American 14 community survey results to the census bureau's 15 results. I should say that the American community 16 survey has several different names, so -- but the 17 census bureau is working on eliminating the 18 multiple names for the American community survey. 19 The American community survey is an annual survey, 20 so it will be more up to date than the census 21 2000. This is a real benefit. You are able to 22 get county level estimates and they will be up to 23 date year to year, and that is one of the things 24 we will be doing over the next five years with the 25 statistic center is to start reporting American 25 1 community survey as up to date as possible. And 2 so you are able to get local county level 3 estimates. 4 It is likely that the American community 5 survey will be used by local officials in the 6 areas of housing, transportation and community 7 development. We would like to add disability on 8 there, you know. That this is something that they 9 would pay attention to each year as they are 10 looking at the housing stock issues, 11 transportation issues in their local communities, 12 is to pay attention to disabilities. That is one 13 of the things we will be working on in the 14 statistic center is to educate city planners and 15 regional planners on data on disability issues 16 because they use the Census2000 data, they use the 17 American community survey data. What we want them 18 to do is look at that data and think about 19 disability and the disability statistics. 20 Statistics from the 2002 American community survey 21 are available through the census bureau website, 22 and, again, in the coming years we will be using 23 the American community survey extensively and 24 posting the results on our disability -- on 25 WWW.disabilitystatistics.Org. So, with that, you 26 1 know, I think I probably went very fast. About 40 2 minutes. 3 With that, why don't I open it up to 4 questions? I know someone has submitted questions 5 earlier. Let me say one thing before we turn to 6 questions. This is the first presentation that I 7 have never given a statistic, and you didn't hear 8 one statistic, and so me, that is such a radical 9 deviation from previous presentations. In one 10 way, one reason is that a lot of the census 11 numbers are reported in maps, as you know, maps 12 probably are very difficult to convert into 13 accessible formats. And so I have to -- we have 14 to find ways in which we can convey the 15 information in accessible formats. We are working 16 very hard to do that through our website, but in 17 terms of the presentation, where screen readers 18 aren't available, that is not necessarily optimal, 19 so we are working on ways in which we can provide 20 the same information to people who have various 21 impairments and people who don't. One thing we 22 have thought about is creating a lot of paintings 23 that are kind of fuzzy so people can't get the 24 specific information about their county, but can 25 kind of get the general scream. Then we describe 27 1 the general pattern that is seen on the mat. Why 2 don't I go ahead and answer -- open it up to 3 questions? Then I can other topics I can give as 4 necessary. 123-4679 dawn, do you have a question 5 for us? Yes. We tried to take affirmative action 6 to hire persons with disabilities into our work 7 force. Where can I find current and accurate data 8 by state for the rate of persons with disabilities 9 in the labor force? 10 ANDREW: Okay. In the labor force? Okay. 11 Well, there is some information if you go to our 12 website, disabilitystatistics.Org, there is an 13 extensive set of links and I believe the bureau 14 has labor force participation. I mean that is a 15 very succinct way. We have employment numbers, 16 but that is not the same as labor force 17 participation looks at the percentage of people 18 working or actively looking for work in the last 19 four weeks, whereas employment rates look at 20 everybody and ask them whether they are employed 21 or not. 22 So the census bureau has, I believe, labor 23 force participation on its list. And also we will 24 give you unemployment. Let me take a stand here 25 and say that people have to be very careful when 28 1 they site unemployment versus employment. They 2 are not exactly, you know, the inverse of each 3 other. Employment rates look at the number of 4 people who are working, divided by all people, 5 whether they are working or not. The unemployment 6 rate looks at people who are not working, divided 7 by the labor force. That means the denominator of 8 that statistic is only people who are working or 9 actively looking for work. People who haven't 10 been looking for work in four weeks are not 11 calculated in the calculation of the unemployment 12 rate. I'm in the process of producing a brief 13 that will describe this. Really, it might make a 14 great deal of difference in the unemployment rate 15 because people with disabilities, you know, maybe 16 due to lack of accommodation or quad quit training 17 may not be in the labor force and looking actively 18 for work. The question that the participant was 19 asking is really: How many people are available 20 to work? So if they go out and have an 21 affirmative policy, are they just going to be 22 reaching around for -- and nobody is there? 23 Because, you know, they are not actively looking 24 for work. So, what I would do is I would take a 25 look at that census bureau website. If they don't 29 1 have it, get back to me or if you would like to 2 discuss it further and need further clarification, 3 get back to me because I believe they have it at 4 the state level office census website N the 5 future, what we hope to do is the American 6 community survey will give labor force 7 participation surveys, so we hope to give those at 8 the state and county level in the future. 9 Okay? Dawn, anything else? 10 THE OPERATOR: What recommendations do you 11 have to guide employers who ask employees, 12 applicants to self report so that we can track 13 their progress in recruiting and retaining persons 14 with disabilities and yet protect the 15 confidentiality of the respondent? 16 ANDREW: Read that again? I just want to 17 make sure I understand it. 18 THE OPERATOR: Sure. What recommendations do 19 you have to guide employers who ask employee 20 applicants to self report so that we can track 21 their progress in recruiting and retraining 22 persons with disabilities and yet protect the 23 confidentiality of the respondent? 24 ANDREW: Well, there are a couple things in 25 there. Number one, when you say so that when the 30 1 person asked -- when the participant asked, how 2 can we, so that we can track, I assume that means 3 advocates and or researchers or policy in general, 4 the government, that is a really, really difficult 5 question. In so sense would I ever want to 6 mandate or encourage employers to solicit the 7 disability information or people with disabilities 8 to report disability. In some sense, by 9 university standards, I'm not allowed to do that 10 because of the subject's protection. I don't want 11 to put them at an advantage or disadvantage or in 12 an uncomfortable position. If they don't want to 13 report their disability, I certainly wouldn't -- 14 that would be up to them. And I wouldn't -- it 15 would be good to have that information for 16 tracking purposes, either come through the 17 employer or some other means, I really would shy 18 away from having employers seeking out information 19 about the disability of people at their firm. 20 With that said, there is an alternative method of 21 tracking progress and that would be to have -- 22 this is actually more political than you might 23 think -- the ability to link up employer records, 24 to be able to link together Census2000 or American 25 community survey records to employer records to 31 1 employer -- basically you would match it on social 2 security numbers, so what you could do and some of 3 this has been done already in pilot students, not 4 with disabilities but other reasons. Here at 5 Cornell is to match up employer information with 6 survey information from a large national survey. 7 What that will be able to do is to look at 8 characteristics of the firm, and then 9 characteristics of the people who work there. 10 That is an alternative way of tracking 11 progress towards either career advancement or 12 earnings or employment, what kind of firms are 13 doing better? What firms are doing worse? Maybe 14 not those terms, but what type firms are employing 15 people with disabilities and what are employing 16 less? That is the approach I would take is to go 17 through a political bureaucracy to match employer 18 data with employee data, whether it is through 19 social security numbers or some other means. So 20 that is a really difficult thing to do. 21 Politically, that should not happen and it takes 22 many, many years of political wrangling to get 23 those data merged together. 24 With that said, you know, self reporting of 25 disability, particularly for what are called 32 1 hidden or nonobvious disabilities, you know, it is 2 really up to the people involved. I should say 3 that, you know, with the previous question on 4 affirmative policy and the question on tracking 5 progress, one thing that I always remember, it is 6 an antidote told me to me by a German colleague, 7 they have a system where employers are required to 8 have a certain percentage, I think it is 9 167 percent, be represented by people with 10 disabilities. When that policy was instituted, 11 the prevalence of disability shot through the roof 12 because all of a sudden firms were going out and 13 soliciting. Do you have a disability? Can we 14 make our percentage? Without actually hiring more 15 people with disabilities. So there was some 16 researchers that studied that policy, and there 17 were people that obtained employment because of 18 that because there was a lot more self reporting 19 of disability based on solicitation of people to 20 say, do you have a disability? So that they can 21 meet the percentage target. So that is an 22 interesting antidote that I have heard. And, 23 again, it is only an antidote though. So, dawn, 24 there was there a third question? 25 THE OPERATOR: Yes. One from Kansas and one 33 1 from Iowa. Do you have any suggestions on how to 2 increase the number of employees who self report 3 so that we can evaluate our progress based on more 4 accurate responses? 5 ANDREW: That is somewhat the same question. 6 Could you read it again? I just want to make 7 sure. 8 THE OPERATOR: Sure. Do you have any 9 suggestions on how to increase the number of 10 employees who self report so that we can evaluate 11 our progress based on more accurate responses? 12 ANDREW: Yeah. In some sense that is a very 13 similar question. 14 Again, increasing self reporting is it is 15 tenuous. Obviously what we would really like to 16 do, maybe I can answer this more in a certain way. 17 There is always a question of self reporting and I 18 actually e-mailed somebody today about this same 19 question in the New York state government. 20 Surveys are always based on self reporting and 21 there is always a burning question, are we 22 capturing enough people or too many people because 23 there could be cases where people overreport 24 disabilities. And overreport health conditions. 25 Now without any more objective measure than self 34 1 report, it is hard to judge what is the -- how 2 accurate or inaccurate these numbers are. There 3 has been some research on this, and there are 4 efforts to compare self reporting to measurement, 5 but if you take the new disability as a function 6 of the environment and characteristic, not only 7 would you have to have external measures of the -- 8 objective measures of the person's impairment, but 9 also of the environment the person is operating 10 within. So it would be really hard to -- it is 11 very hard to know how to -- how much to trust self 12 reporting. But in some sense, that is the -- what 13 you have to do. In terms of tracking progress, as 14 long as people are reporting consistently over 15 time, at least you can say for those people who 16 are reporting, you know, this is the progress that 17 is being made. As long as that -- the propensity 18 to report disability remains constant over time, 19 this is not too much problem. The change in the 20 outcome you are looking at will be accurate to 21 that population. The problem gets into the mix 22 when the propensity to report disability changes 23 over time in particular in relation to the policy 24 being instituted. I know that is a very 25 complicated answer to it all, but, again, there is 35 1 just no way to know how much to trust self report 2 and how not to trust self report. There was 3 another question, dawn? 4 THE OPERATOR: Yes. For years the rule of 5 thumb I have heard is only 30% of working age 6 people with disabilities are employed. What I 7 have seen from the 2000 census indicates for many 8 states, approximately 60 percent or more of the 9 working age people with disabilities are employed. 10 How valid do you believe that data is? 11 ANDREW: That actually strikes to -- what I 12 would do is -- okay, first of all, yes, the rule 13 of thumb is 30%. It is probably more around 40% 14 these days. It always depends on which data 15 source you get the information from. 16 The issue that I raised -- I should stress 17 this again -- the issue that I raised with the 18 concern over the reading of the question, people 19 might have answered, instead of thinking of that 20 one question on work disability, do you have 21 difficulty going to work because of a condition, 22 they may have -- if you read that question and 23 kind of take a break between the questions, you 24 may actually think that it reads, do you go out -- 25 do you have a job? So people might have actually 36 1 answered that, if they were working, they might 2 have said yes to that question. Not if they have 3 difficulty, but if they actually went to work. In 4 some sense, there is a real fare and a degree to 5 which this is the case, there is a real fear that 6 there was over reporting of the work on the 7 definition of the last of the census questions. 8 And that it was just a matter of being related to 9 being employed so that employed people answered 10 that question more readily than not employed 11 people. So here is my answer to that question. 12 It is: Look at the impairment based questions. 13 There are employment numbers in the summary files. 14 There are employment rates for people who answered 15 the first four questions, the self care, the 16 mobility, the sensory, what is called the mental 17 health question. Those four questions, look at 18 the employment rates of those four and see what 19 you can get. With that said, different sure 20 surveys will get different results. There will be 21 different results, a range. There will always be 22 a range, because there are no standard set of 23 questions, because people can always pick apart a 24 question. To get these questions on national 25 surveys is a feet in and of itself. To get good 37 1 ones will be an even bigger feat. So what I would 2 do is I would, A, there is caution being used for 3 the statistics that are out of the census 2000, 4 but you can look at the American community survey 5 website from the census bureau. And the American 6 community survey does not have that same issue. 7 If you see upwards of 60 percent there for certain 8 states, that might be an issue. Look also to our 9 website. We have state estimates of the 10 employment rate on our website from a different 11 data source, current population survey, the CPS, 12 you can look there and get an idea of the range. 13 I'm trying to remember the data. I'm trying to 14 remember, the states who are up there in terms of 15 employment. Who have some good numbers. The 16 composition of those people are disabilities are 17 quite different than other states so that is also 18 something to keep in mind when looking at state 19 variation. 20 THE OPERATOR: Andrew, we received some 21 questions on this end. One has to do with the -- 22 let's see. It is not I'm not familiar with the 23 American community survey. If I'm read this 24 right, the question has to do with, do they ask 25 questions similar to the long form with regard to 38 1 six disabilities? 2 ANDREW: Yeah. It is exactly the same form 3 all together. There are slight changes. They are 4 the same questions, with regard to the disability 5 questions. And there are some other areas where 6 it might be a slight modification, but the idea 7 was to keep it the same. The American community 8 survey and sometimes the census supplemental 9 survey it is sometimes called, although they are 10 trying to get rid of that name -- 11 THE OPERATOR: It is so catchy. 12 ANDREW: American community survey is 13 probably better. They will get rid of the census 14 supplemental survey. 15 There is kind of a move within the census 16 bureau at least from my reading to move away from 17 the Census2000 long form, not the long form, but 18 the short form, in terms of giving it to one in 19 six households and to try to do it more cost 20 effectively. Also, to use that savings in money 21 and do it every year. Because the census, when 22 you start hearing 1990 census numbers and it is 23 the year 2001, you start getting -- it starts 24 getting pretty old. What they really want to do 25 is create an annual survey that is upwards of 39 1 3 million people and also to do institutionalized 2 populations, as well. The American community 3 survey has a push to do that, to get more current 4 date at a in the hands of local officials and to 5 replace the cumbersome process that the Census2000 6 long form has become. With that said, again, this 7 is actually congressional support for the American 8 community survey. It is always waxing and 9 Waining. They say it is part of the constitution 10 that they have to select certain information. 11 That is true for the short form and people, you 12 know, don't like spending a lot of money on data 13 for good reason. We had rather been doing 14 services. If we can't survey accurately, that is 15 another problem. 16 THE OPERATOR: The second part of that 17 question about the American community survey is 18 administration, like how are the people each year, 19 how are the people selected to receive it? Is it 20 representative, blah blah. 21 ANDREW: It is a complex sample design in 22 which samples are drawn to try to guarantee 23 coverage. I think it is places of 65,000 or more. 24 They are trying to get enough samples to make 25 accurate estimates for localities of 65,000 or 40 1 more. That number will go down over time. As 2 they expand the survey, they will eventually get 3 down to towns and cities of more than 30,000, they 4 are trying to get smaller and smaller areas. It 5 will never be as -- give the small area estimates 6 that the other censuses give, but, again, it will 7 serve local officials well and that is the way it 8 is designed. It is a stratified, complex 9 stratified sample where they try to guarantee 10 representation of small areas, but also 11 representation of African-Americans and Hispanics 12 so that there is attention paid to make sure that 13 the sample is sufficiently targeted towards those 14 groups. 15 THE OPERATOR: Okay. Dawn, if I can seep 16 asking a few more questions I received. 17 THE OPERATOR: I have two from Montana. 18 Let's go to a couple of yours. Andrew, let's see, 19 if I'm reading correctly, it has to do with your 20 mentioning briefly midway through the presentation 21 about survey forecasting. They just want a 22 clarification of what that means and what would be 23 included. 24 ANDREW: When you have trend data, you are 25 able to forecast out in the coming years, the 41 1 furthered away you get, harder it is to forecast. 2 But you try to predict how many people will be 3 calling for services and you try to predict how 4 many people with disabilities. There are people 5 trying to do that. It is not easy. But you can 6 also get -- from the census bureau, you can get 7 age. There is this projection of the baby boom, 8 as it moves through the population, what will the 9 population of the elderly be ten years from now, 10 20, 30 years from now. That is increasing error 11 in that forecast. It is only a guess. And so 12 that is the kind of thing that you can actually 13 do. Especially when the American community survey 14 comes into full swing because you'll have annual 15 estimates using the same measures over time and 16 you can actually look at the patterns and use 17 those patterns to predict out. 18 THE OPERATOR: Does the word humongous come 19 to mind when they start predicting the baby boomer 20 group? 21 ANDREW: Absolutely. Another thing to pay 22 attention to, as the retirement age shifts out and 23 as the earnings, when the earnings requirements -- 24 earnings limitations on elderly earnings were 25 carried out, that makes a big difference for the 42 1 work force, you know, for people like me who age 2 67 is going to be the year of retirement, that 3 means a lot more time that my ageing body has to 4 spend in the work place so those things are 5 crucial to remember when studying social security 6 reform. How is the labor force going to respond 7 to -- in terms of accommodation of people who want 8 to go back to work? 9 THE OPERATOR: It will be phenomenal. The 10 issue too of how long -- not just for -- well, let 11 me get back. The folks who are going to 12 experience disabilities related to age, the ageing 13 process will expand that group even more and so 14 many of us may not have started saving early 15 enough to have adequate retirement. I believe we 16 have read studies that say it wouldn't be 17 extraordinary to see folks in their 70's, maybe 18 80's working. 19 ANDREW: Absolutely. The good thing for 20 younger people with disabilities will be that a 21 lot of the accommodations, once the baby boomers 22 start realizing they need accommodations, that was 23 the -- the political momentum might start changing 24 for disabilities. I have been surprised with the 25 way the U.S. Supreme Court makes its decisions, 43 1 aren't they starting to feel the limits -- feel 2 the impairment of their bodies as they get older? 3 THE OPERATOR: I noticed on one of the 4 documents you provided on the website, the one 5 from your website on disability statistics was the 6 break down of folks under -- young people working, 7 rather young people disabled, nondisabled, for the 8 ones over 65, they didn't have work in there. Are 9 you imagining that soon -- 10 ANDREW: I don't see why they would. I think 11 they should. The CDC in its surveys collects for 12 70 and other. I'm surprised that the Census2000 13 selected it at 65 and under. 14 THE OPERATOR: Do you recollect con the 15 American community survey will retain that? 16 ANDREW: Yes. It will retain that for the 17 following -- until the next -- turn of the next 18 decade. Their idea is to keep the same survey, 19 regardless of -- keep it the whole time and fix 20 things every ten years. 21 THE OPERATOR: This next -- this decade and 22 the next will be very, very interesting. I hope 23 we get all the problems solved pretty fast. 24 ANDREW: The baby boomers will start voting 25 our way. 44 1 THE OPERATOR: Bless their hearts. Dawn, do 2 you have more? 3 THE OPERATOR: Yes. This question is related 4 to housing, affordability for the disability 5 community. We are interested in analyzing census 6 and ACS data nationally and by state for 7 nonelderly disabled to determine the number 8 percentage of persons below 30 percent of medium 9 -- median income, below 50 percent of median 10 income and below the housing wage in 2000 11 determined by the national low income housing 12 coalition for each state. The intent would be to 13 determine the number and percentage of disabled 14 persons that cannot afford either affordable 15 housing or market housing in each state. Is this 16 the type of housing questions that you may 17 consider analyzing our RRTC? 18 ANDREW: I should put that person -- if this 19 is -- I know someone who is very interested in 20 exactly the same question. And this might be a 21 plant out there. 22 THE OPERATOR: Do they live in Montana. 23 ANDREW: The one I'm thinking of lives in 24 California. Please give me a call to the person 25 or an e-mail because I know -- some of the people 45 1 in Montana are interested very much in the same 2 question. 3 THE OPERATOR: They have their contact 4 information here. Do you want me to forward it to 5 you. 6 ANDREW: Yes. 7 THE OPERATOR: I didn't understand the 8 question. 9 ANDREW: If I'm hearing the question and 10 interpreting it correctly, basically how many 11 people are left out of affordable housing. People 12 are disabilities and, you know, affordable housing 13 is an issue in many areas, or lack of affordable 14 housing and people with disabilities could be 15 disproportionally left out of the housing stock. 16 This may go a little bit beyond what the person 17 was asking, but a lot of the housing stock is so 18 old that it is not accessible so people are shut 19 into their homes, if they do find affordable 20 housing. Or it is -- one of the issues that my 21 friends in California are looking at is if the 22 housing is affordable -- if the housing is near to 23 mass transit and the center city, like in some of 24 the growing center cities, people with 25 disabilities are priced out. They need the 46 1 access, especially with mobility impairments, need 2 access to transportation but by virtue of being on 3 transportation, the prices are higher because -- 4 everybody that lives in DC knows the close you are 5 to a Metro stop, the higher the price. So the 6 people with disabilities who need transportation 7 assistance are shut out of markets because of the 8 price. I have a lot of interest, and there are a 9 lot of different things that can be done with the 10 Census2000 information. You know, I'm not 11 familiar with the housing wage, but some of it 12 depends. With the files, they might not give the 13 exact income but brackets of income, and you would 14 have to live with the information they give in the 15 files. But that is information. Housing is one 16 of our hot issues with the new statistic center 17 that we hope to pay attention to, especially with 18 homes, that brings up a whole set of problems. I 19 will be speaking in Boston next week on this 20 issue. I hope to be giving more succinct answers, 21 but I really like some of the statistics that the 22 person laid out in terms of the argument they want 23 to make and the advocacy they want to do. It is 24 reasonable to see how many people are below the 25 prevailing wage or a housing wage. And, also, you 47 1 know, part of what you can do with the Census2000 2 is look at people who are renters versus home 3 owners so you can automatically, even if they have 4 low income -- there are lots of things that can be 5 done. If the person wants to it is down and brain 6 storm with me on that, that would be great. We 7 could build a template and make it available to 8 other people. That is in a sense what we are 9 going to be doing. We are going to be looking at 10 housing issues. My friend in California -- local 11 area numbers into that template and either it is a 12 mass media store or has a piece of a letter to a 13 legislator, something like that. 14 THE OPERATOR: You are looking for the kinds 15 of -- like that kind of question that you can use 16 to kind of put a frame on a different set of 17 issues to address? 18 ANDREW: Absolutely. Not just employment, 19 but being -- employment being an economist, 20 employment is really my primary focus for the 21 majority of my life. But we also want to look at 22 housing and transportation because they play such 23 a huge role. I have argued a lot for -- 24 transportation research often gets lumped with 25 employment. And people say this is an employment 48 1 issue. No. It isn't. Transportation crosses a 2 lot of boundaries, including employment. And a 3 lot of our services are revolving around making 4 sure people have driver's license or access to 5 accessible transportation, especially in rural 6 areas. So what we really want to do is build up a 7 set of templates that not only the person in 8 Massachusetts can use, but then make that template 9 available on the web so that other people can plug 10 in their state or plug in their congressional 11 district and lobby their congressman or their 12 county representative, plug in a county. We are 13 always trying to look at county information. We 14 are also going to be hopefully getting some 15 program statistics from social security and try to 16 get SSDI at the local level. That is what a lot 17 of independent living centers use. 18 All I can give them was social security 19 records, numbers of SSI recipients and a number of 20 DDI recipients and that ends being good because 21 that is a high -- it gives a number of people that 22 the IL might be serving potentially. Also for 23 housing, the same question goes to housing. If 24 you go -- if you have the same number of SSI 25 recipients, you have a pretty good idea of who is 49 1 going to be available for either section eight, 2 not perfect, but a good idea of how many people 3 will be available and below a certain income 4 level, so, you know, DI -- I'm sorry -- SSI 5 recipients might give you an idea of how pervasive 6 the problem is. That is something we might be 7 able to use in the survey. Because the survey 8 asked about whether people receive SSI. 9 THE OPERATOR: We are going to get to the 10 problem with all this information, devising ways 11 to apply it is just wonderful. 12 ANDREW: That is what we want to do is focus 13 on a few key -- a few key groups, IL's, VR's, 14 housing officials, transportation officials, 15 advocacy groups. We have a couple open-ended 16 projects that will -- if another constituency 17 comes up, we can go after that constituency and 18 build a template and work with them to figure out 19 how to use the data. That is really the model we 20 have for the stat center, it is work with the 21 existing data, get it into the hands of people, 22 and then work with them to develop arguments, you 23 know. And reports or letters to their congressman 24 or stories to the newspaper. That is really -- 25 THE OPERATOR: You are talking technical 50 1 assistance along with the utilization of technical 2 assistance? 3 ANDREW: Yes. That was something of concern 4 because this is research and training center. Our 5 worry was we weren't doing enough research. You 6 know, that people might go, oh, you are not doing 7 enough research. You are not telling us what the 8 questions on disability should be because a lot of 9 people want to know, what is the question -- what 10 survey questions should be used? Well, that is a 11 bigger issue than one can answer. It has to be a 12 consensus of a lot of different agencies and 13 people involved. I'm not confident -- I think 14 good numberless come up, but I'm not sure 15 everybody will say, oh, that is the gold standard. 16 People take pot shots at one measure or another. 17 It is hard to believe that a small set of 18 questions could actually capture the diversity of 19 people with disabilities, it is such a rich group. 20 THE OPERATOR: I think you pointed that out 21 with the questions. 22 ANDREW: This is a ton of questions. 23 THE OPERATOR: We still have two more. 24 THE OPERATOR: Are you ready? Can you 25 suggest a strategy for accessing rural versus 51 1 Urban data comparisons, for example by small town, 2 or by specific towns? 3 ANDREW: Without being force today go to the 4 microdata, you can get -- oh, boy, some other 5 people I know might be able to answer this 6 question. 7 There are two ways of being able to do it. 8 If you wanted to do rural areas, there are some 9 rural estimates divided by the census, but I think 10 I have only seen them for the United States, the 11 rural versus Urban. I believe what would be 12 necessary -- it is not easy, I should say. 13 Without going to the palm's files, you would have 14 to down load all of these SF3, the summary file 15 three files, the SF3 files, download them. And I 16 believe there is a crosswalk down there that will 17 tell you which small census blocks are in a rural 18 area are predominantly rural area and you would 19 start summing up from there. It is not the palm's 20 files. Not the individual records. But it is the 21 summary file three files. I don't know of any 22 other way to get the crosswalk to get the 23 disability by Urban/rural split. I will have to 24 take a look at that. I think there is a file out 25 there that you can get that will tell you the 52 1 urbanicity of a locale and you would have to 2 merge, whether it is an Urban area or rural area, 3 and sum up from there. That is not a good answer 4 because that is a real pain. But, again, if this 5 person can contact me and maybe we can figure 6 something out I can contact some friends and see 7 what they have done. 8 THE OPERATOR: This is another example of how 9 our friends who live in rural areas have it 10 tougher than we do. 11 ANDREW: No doubt about it. One thing about 12 the American community survey is it is not going 13 to be designed to give those rural estimates and 14 that is always going to be an issue with the 15 American community survey. Yeah. Okay. I don't 16 know if that is a good answer. I don't know of an 17 easy way to do it, let's put it that way. I don't 18 think there is any easy way, although the 19 Census2000 website is so complicated, there could 20 be something I haven't run across yet, but I'm 21 pretty sure there is not any way of collapsing 22 things by Urban and rural in an easy way. 23 THE OPERATOR: Darn. Dawn, do you have 24 another one? 25 THE OPERATOR: Yes. I'm interested in data 53 1 in the national health interview survey and the 2 behavioral risk factor surveillance system. Will 3 your RTC on disability and statistics be able to 4 assist researchers with these national data bases? 5 If not, can you suggest any other agencies that 6 would be able to help perform these types of 7 analysis? 8 ANDREW: Well, first off, we will be working 9 with the national health interview survey. At the 10 moment, we are not committed to working with the 11 behavioral risk factor surveillance surveys, as 12 they are termed. I don't know what your 13 transcriber just put down. Behavioral risk 14 factor. We are not working with them because the 15 disability questions are not uniformly asked 16 across state. The disability questions are not a 17 function of the core questions. They are a set of 18 questions that the state buy into and for that 19 reason we are not really focusing on the 20 behavioral risk factor surveys because we want to 21 try to give state level estimates. We want to be 22 able to feed into this data system that we are 23 creating at the county level so we have always 24 tried to do with the county or at least the state 25 level. Although with that being said, an 54 1 individual state, a BERTHA can be quite valuables. 2 And we shouldn't dismiss them so readily. We do 3 have projects in our RTC's because we knew that 4 new data sources might come up or other data 5 centers might become more prominent so we have 6 some more open ended times and funds to go after a 7 different data set and BERTHA is one of the ones 8 we will be considering. We will be working with 9 and part of our center will be to provide 10 technical assistance on how to access that data 11 and to help, you know, get the data files and get 12 the -- help down load the data and pull it up into 13 statistic call software program, but we won't be 14 doing analysis for people. We are not mandated, 15 that goes beyond the technical assistance, and we 16 would consider opening up a consulting 17 relationship perhaps. If you are a New York 18 state, because we are in New York state, we do a 19 lot of that for them for free, but for most states 20 we would enter into a contract with them because 21 analysis is one thing. With that being said, we 22 will provide as much technical assistance as we 23 can, but our resources are limited. 24 THE OPERATOR: Those of us who aren't 25 statisticians have this feeling that there is 55 1 almost nothing that you can't find out about that 2 you guys -- their surveys and data bases and data 3 sets out there. And I'm wondering if -- I was 4 part of a conversation the other day, really 5 listening to individuals who were talking about 6 the report that people with disabilities are 7 mostly, you know, at a lower income level, et 8 cetera, comp the question came up of, I wonder how 9 much -- naturally there are some folks with a lot 10 of money, where would you find information on 11 disposable income? 12 ANDREW: Yeah. Yeah. Disposable income is 13 harder because you have to estimate tax burden, 14 how much tax has the person paid, and that is not 15 easy. it can be done, but not easily. In terms of 16 the distribution of income, we have written some 17 papers that have looked at really what the 18 distribution looks at for people with disabilities 19 versus without disabilities and I don't know if 20 they are ever published or not. We did so much 21 early on. But it shows there are some rich people 22 with disabilities. In fact, when you look at the 23 household wealth, household income, and -- but the 24 majority are indeed at lower income levels. 25 THE OPERATOR: If one was interested, could 56 1 one break it down by income level with age of a 2 person? 3 ANDREW: Sure. 4 THE OPERATOR: So that data is available? 5 ANDREW: I don't know if it is available. I 6 don't know if the statistics are available, I know 7 the data is available to do it. 8 THE OPERATOR: Is this the kind of question 9 like a year from now when you all are up and 10 running and fielding questions, one can call up 11 and get aid vice on where to go look for this? 12 ANDREW: Yes. To some extent, we have some 13 money to do some stylized estimates, particularly 14 for NIDRR officials and NIDRR-funded projects. We 15 have some money to do stylized estimates. I have 16 helped people out and estimated when people can't 17 find the statistics, but I know they are possible 18 given the data sources that we have. We have some 19 money to do that, but, again, that is a limited 20 resource. But we always try to help out people as 21 much as we can. 22 THE OPERATOR: You are a bunch of good guys. 23 ANDREW: That is why we get the big money. 24 Seriously, we want to try to -- we were afraid 25 that this wasn't a research oriented enough grant 57 1 proposal, that we were doing too much technical 2 assistance and outreach, you know, and we felt we 3 might be hurt by that because we weren't, you 4 know, superscientific, but I think NIDRR of all 5 the places has the right motives compared to NIH, 6 national institutes on health. NIDRR has the 7 right heart. They really want the stuff to be 8 used. That is the mantra. It is kind of like 9 show how this is impacting, show how people are 10 using it. We are trying to design a program that 11 would use data because you will never find a 12 perfect data source. 13 THE OPERATOR: The offer you are making to us 14 in the field of asking for areas in which we have 15 a specific interest and a specific need. I wonder 16 if before we close you might -- I want to remind 17 folks we are going to have this discussion forum, 18 this bulletin board are comments can be posted. I 19 wonder, Andrew, if you would mind repeating that 20 request for information that you started with. 21 ANDREW: Sure, I would love to know what 22 people have to say in general, but also I would 23 like to see if you had the top five statistics 24 what would they be? Because there is so much 25 capacity, we wouldn't possibly do everything. 58 1 What would the five, and why? What would you use 2 them for? We are already starting to get a lot of 3 input through our website. Some of it we can't do 4 because we don't have finite information. But 5 tell me what you would like to see in terms of 6 statistics because, you know, the way I pitched it 7 to NIDRR is that the -- I'm sorry -- the census 8 bureau only has so much resources dedicated to 9 disability. If they don't do it, some other 10 agency has to put up the money and I thought that 11 that should be NIDRR and they did. 12 THE OPERATOR: Yes, they did. You are in the 13 receive mode now? You would like recommendations 14 and suggestions? 15 ANDREW: Absolutely. 16 THE OPERATOR: It wouldn't hurt to do a 17 sentence an application. Broader than employment? 18 ANDREW: Anything goes. 19 THE OPERATOR: Well, then, okay. And if time 20 passes and this discussion forum drys up, your 21 website will continue to receive? 22 ANDREW: You bet. You can always submit a 23 question or comments through the 24 disabilitystatistics.Org. 25 THE OPERATOR: This has been terrific. 59 1 ANDREW: The only thing I would leave people 2 with, one thing we have to do is never say that we 3 know exactly the answer. With disability, there 4 are always a range of answers and data sources 5 that are better at one good and not so good at 6 with others and the idea is to try to get several 7 sources. If you hear a statistic, get the source, 8 and then say, well, and don't be surprised if you 9 say another source has another answer. Our hope 10 is to create a body of knowledge that helps people 11 make choices and look at the various options. 12 THE OPERATOR: Great. Thank you very much. 13 It has been -- one would not expect time to fly so 14 fast with a statistician, but that is a bias and a 15 discrimination, isn't it? 16 ANDREW: It is. The Barrier to 17 statisticians. We are generally not very good at 18 conveying what they do. 19 THE OPERATOR: You must be the exception. 20 There was very useful and a challenge to us to 21 utilize this wonderful resource that you all are 22 offering. Thank you. I want to again invite 23 those of who are listening to participate in the 24 discussion forum. If you have any comments or 25 questions or things you would like to pose to 60 1 Andrew, post them there or as he says, at his own 2 website, the disabilitystatistics.Org. 3 ANDREW: If you do that, let me know where 4 you heard me so I can forward it back to ILRU. So 5 they can know how good their sources are. 6 THE OPERATOR: Also on this, you may have 7 seen the link to the evaluation. We would love to 8 have you evaluate the webcast format, the 9 accessible, the difficulty or ease of use, et 10 cetera, all those comments will be extremely 11 useful as we refine the process. Before we close, 12 again, I think it is important to acknowledge the 13 role that NIDRR plays in projects such as this 14 one, which is considered a dissemination project. 15 Part of its initiative was to promote the use of 16 research by those of us who are not primarily 17 researchers, and through this project we are able 18 to invite researchers who are active in the field 19 of disability and rehabilitation to present on 20 their findings. It has been -- today is just 21 another example of how committed these folks are 22 and how they talk like human beings, almost like 23 the rest of us. Andrew, thank you for that. 24 Also, this project is the RIIL project. We 25 at ILRU operate this in conjunction with our 61 1 partners at the research and training center on 2 independent living at the university of Kansas. 3 You all know that is Glenn buddy, and other 4 colleagues there, we are very appreciative of what 5 we do. We have at RIIL a data base, Andrew, we 6 call it a data base. It is a library of 7 documents, of abstracts of documents written on 8 various disability subjects. It is research 9 reports, book chapters, articles, journals, are 10 abstracted there and you can type in employment or 11 type in any term of use and a number of references 12 will come up for you. So please don't forget to 13 use that. Also again we are appreciative of the 14 folks at Cornell university for spending time with 15 us. Suzanne last year and Andrew this week. 16 These presentations are archived so that if folks 17 miss this one, they will be able to come to this 18 website where we are now and there will be a link 19 here that says webbed archive. You click on that. 20 There will be the audio portion of this 21 presentation. There will be the transcript, which 22 is based on the realtime captioning that is 23 occurring right now. There will be the same 24 handout materials and the link to the discussion 25 forum, so please take advantage of that. And 62 1 these will be in -- they go back to our first set 2 of webcasts. Take advantage of that. In closing, 3 we appreciate the effort, I appreciate the effort 4 of our team involved in these webcasts 5 presentations, they include Marge Gordon, Sharon 6 Finney, Mark Richards and today Dawn Heinsohn in 7 sponsoring and questions. i will have a 8 presentation soon on our website. There is a link 9 called webcasts. And you will see the upcoming 10 webcasts so please join us for ones coming up. 11 Some will be an ADA related issues, other issues, 12 some on independent living and other research 13 related issues, but please join us so you can take 14 advantage of the knowledge that is being generated 15 by people in the field. Meanwhile, here at ILRU, 16 all our best wishes and good afternoon. 17 18 19 20 21 22 23 24 25