>> John O'Neill: Good morning, everyone.
>> Good morning.
>> John O'Neill: We're going to get started. Sorry for the delay, but there are a lot of people that aren't here yet. We thought we would wait a little bit of time to give folks that were having a difficulty getting here to arrive.
Anyway, I'm John O'Neill, from the Kessler Foundation, and I'd like to welcome you all here on behalf of the foundation, as well as the Institute on Disability at the University of New Hampshire. I think we have two thoughtful and informative workshops today. Both are funded by grants from the National Institute for Disability and Rehabilitation Research.
This morning's workshop, which is the annual compendium rollout of disability statistics, is a project of the Disability Statistics and Demographics RRTC at the Kessler Foundation.
The afternoon's workshop, which is the third annual Research-to-Policy Roundtable, is a project of the Employment Policy and Measurement RRTC at the university -- at University of New Hampshire's Institute on Disability.
A couple of notes before we proceed. Today, Deb Brucker will be presenting for Andrew Houtenville, and in the morning's workshop, as well as Jennifer Sheehy will be presenting for Richard Horne. Otherwise, the agenda remains the same.
OK. Kind of just to review the agenda for the day, this morning we're going to have an overview of the compendium. We're going to start with that. We have -- Deb Brucker will be sitting in for Andrew Houtenville on that. And we will be receiving some comments from Mark Perriello from AAPD, and then we'll proceed into the data workshop, which will last about an hour, maybe an hour and a half with questions.
Then we're going to have a lunch. And then in the afternoon -- the lunch will last from about 11:30-1:00. Then in the afternoon we'll proceed with the Research-to-Policy Roundtable.
So thank you for coming. I'm sure there will be some additional people joining us as the day proceeds, and on that note I'd like to present Deb Brucker who will take the presentation from here. Thanks.
>> Debra Brucker: Good morning.
>> Good morning.
>> Debra Brucker: Is this working? Yes? OK. I'm Deb Brucker. I work at the University of New Hampshire with Andrew Houtenville, and I am presenting his slides on the disability compendium. He cannot be with us today, and this is like his most favorite day of the year, if you know Andrew; he loves the compendium. So I feel badly that he can't be here, but I will try to share the compendium information with you.
Just so you're aware, when you checked in you probably saw we have stacks and stacks of this compendium in a hard copy. We'd like you all to take as many as you can home with you so that we don't have to take them back to New Hampshire with us. Great Christmas presents.
Also, there are USB drives up at the registration that have not only this compendium, but past years' compendiums loaded onto them, as well as all of the presentations from today. You're welcome to take those as well.
So welcome, officially, to the fifth annual release of the compendium. As John mentioned, it's presented by the RRTC on Disability Statistics and Demographics that is led at the Kessler Foundation and funded by the National Institute on Disability and Rehabilitation Research.
The purpose of this presentation is to describe what the compendium is, discuss anything that's new this year, highlight some of the patterns and trends that we see when you go through the data in the compendium, solicit some input on additional topics that we might include in next year's compendium, talk about some ways you might use the compendium, and then mention how you can access the compendium and technical assistance that we provide at the University of New Hampshire.
So the purpose of the compendium is to provide the disability community, so advocates, researchers, service providers, with a comprehensive set of statistics in one place that they can access around different topics related to disability.
It's a guide to existing sources of data and statistics. We just pull the data from other sources that exist. We use both population or survey-based data as well as administrative data. And it's modeled after the statistical abstracts of the US, which I know Andrew always mentions is like something he loved to read as a kid.
His love of data. I have to mention that specifically.
So the compendium is designed to have a comprehensive set of tables with, first, a descriptive summary page in the hard copy document, then the tables will follow those descriptive pages. It's based on existing published statistics with references to the original sources. So if you need more information, we'll give you the links that you can click to get that original source information.
You can also access technical assistance via a toll-free number. So if you need help interpreting the statistics or if you need the statistics in a different way or format, you can contact us through that phone number or also on our website, and we will get back to you.
We do have a particular focus on state-level statistics and national trends. A lot of the technical assistance requests we do get are from people at the state level asking for state-specific information.
So the current compendium includes the topics that are listed on this slide, population size and prevalence of persons with disabilities, employment, poverty and wages/salary, veterans statistics, health insurance coverage, health behaviors, other health statistics. We use administrative data to provide information on the supplemental security income, Social Security disability insurance, Medicare and Medicaid. We also have information on special education, both vocational rehabilitation and federal government spending.
We are looking to expand the compendium for next year, so if you could think about some additional topics that we might cover next year and either find me at lunch or you can e-mail us afterwards, that would be helpful. We can get your input.
There are a couple of cautions we like to mention when people grab the compendium and zero in on one statistic, is that you need to pay attention that the data come from different sources that have different methods of identifying people with disabilities. Some may use a work limitation question. Some may use a series of six different questions that look at different limitations, for example. So we do include a glossary in the compendium that has a definition of all of the terms that are used in the tables. Similarly, with employment and unemployment, those can be defined in slightly different ways. Again, you should check the glossary if you're trying to interpret, or contact us for technical assistance.
Next I just wanted to provide some basic statistics from this year's compendium, just to set the stage for the rest of the morning. So this slide shows the number of people with disabilities in the US is 38.4 million, or 12.3% of the population. This is based on identifying people with a disability as someone that has either a seeing, hearing, cognitive, ambulatory, self-care or living limitation.
This slide shows since 2008 the percent of people that have a disability has increased from 36.1 in 2008 to 38.4 in 2012. But the actual percent of the population has stayed fairly steady, from 12.1 to 12.2. Even though the actual raw number has increased, the percentage is similar.
This slide shows the numbers of people by disability type, using those six questions that I mentioned earlier, in 2012, age 18-64 living in the community. People can identify more than one of these types of limitations. So that's important to note, that people can respond that they have both a vision and ambulatory type of limitation. You can see the ambulatory is the highest level. Something our office spends a lot of time working on is employment statistics for people with disabilities. So this next slide shows the employment rate by the disability types that were listed on the earlier slide.
The employment rate is people that worked over those that are in the labor force. You can see that it's highest for people with a hearing limitation, at 49%, but lowest for people that have a self-care independent living limitation, at 16, 15%. All of that is compared to people with no disability that have an employment rate of around 74%.
This next slide shows employment rates since 2008. So kind of spans over the time of the recession. So you can see in 2008 with the level of employment was, people without disabilities was about 78%, and people with disabilities was about 39%. Employment dropped for both of those groups in 2009, 2010, stayed pretty steady in 2011, and is creeping up a little bit in 2012, a little bit more so for people without disabilities. People with disabilities are still staying at a fairly low level of employment, around 33%, which is really where their employment rates are bottomed out in 2010.
So again, this is data that you can pull from the compendium. It's not displayed in this actual format in the compendium, but the tables and information is all in the compendium.
We also include some trends in labor force participation in the compendium. This is for people age 16-64 living in the community. You can see that the gap in participation in the labor force has remained fairly steady from 2008-2013. The labor force participation is different than the employment rate. Labor force participation includes people that not only are employed but also looking or wanting to work as a proportion of people that are working age.
This next slide just shows the level of the gap in the labor force participation between persons without and persons with disabilities since 2008. The gap has been around 42%, 45% from 2008-2013.
We also, as I mentioned before, include administrative data in the compendium. So for example, information on applications to SSDI. You can see how the raw number of applications has continued to increase over the last decade.
In addition, we have some information on federal expenditures tabulating the cost of disability to the federal government. We have 2008 information in the compendium right now, and in the next couple years we'll be updating that study, providing more recent data on the federal expenditures for persons with disabilities.
We did start something new this year in cooperation with John O'Neill's group at Kessler and UNH. We've started a national trends in disability employment report. We call it the TIDE report. It's a press release that comes out the first Friday of every month to coincide with the labor statistics that are released, and it focuses on employment for persons with disabilities.
We also, thanks to funding from NIDRR, we will be releasing the compendium for the next five years. We also will be enhancing it including an annual report on disability, sort of a higher level progress report, expanding topics, as I mentioned before, and adding some more detail and indicators.
So to access the compendium, in addition to the hard copy we provided and the USB drives, we also have a website, www.disabilitycompendium.org. There's accessible PDF and accessible HTML where you can download some of the tables. We do have more print versions back at our office in addition to the ones out at the table, and Penny Gould, our administrative person, asked if anyone wants a boxload mailed to them, we're glad to do that. Come see her or me during the break.
Then there's also the technical assistance phone number is 866-538-9521 that you can contact us for assistance in accessing any of the statistics.
So this is Andrew's contact information. If you want to send him a quick hello, you can use this information. My e-mail is firstname.lastname@example.org, if you have any follow-up questions.
Now I'd like to turn it over to Mark Perriello, President and CEO of American Association of People with Disabilities for his comments.
>> Mark Perriello: Hello, everyone. I'm going to stand behind the podium, if that's OK. Thank you, Deb.
First and foremost, thank you for joining us today. You know, it is a pretty exciting day in my book too, because I think doing statistics you need good data, you need good research in order for groups like AAPD to do all of the work that we do. It is so helpful and so needed to be able to walk into a room and have really intelligent conversations and have great data like this to back it all up.
First and foremost, though, I want to thank Andrew, who can't be with us today. Thank you, Deb, Penny, everyone from UNH for all of the work that you all have done to put this great research together.
I also want to thank the Kessler Foundation, John and your team for the work that you all are doing and the work that you are going to enable UNH and others to do for the next few years. Very, very important.
Also want to thank Senator Hatch, John Connelly, and the team from AAPD, Henry, who I don't believe is with us yet, but Henry Claypool, but also over there two folks that had a lot to do with making this day come together, Colin Schwartz and Brianna Gross. Thank you both.
The thing I wanted to talk a little bit about today, why are we here, what is it we're all doing here together and what is it that we hope to get. The thing that we need, right, is new and more powerful outcomes for people with disabilities. One of the things we were talking about just before we sat down today was that there's no surprises in here. Right? The stats don't really reflect a lot of new trends, a lot of new information. It's a little bit more of the same.
One of the things that I think is interesting, right, if you talk to employers, you really would get the impression that everything is rosy, everyone wants to hire people with disabilities. Everyone puts on a veneer that this is so important, they attend the ADA trainings, they check a bunch of boxes that show they're doing everything they're supposed to be doing in order to hire people with disabilities, but the outcomes aren't really there.
So even as the economy has started to pick up pace, we continue to lag behind. So we need to do some new things in order to produce some powerful outcomes for people with disabilities, so that one day when we're having the coffee conversation before we all sit down and look at the statistics, we get to talk about some great surprises, some great new trends in employment for people with disabilities or access to healthcare.
So that's what we're focused on at AAPD. I want to talk a little bit about some of the things we're doing to try to change those outcomes, then also look at some of the bright spots that are out there, right, things people are doing right, so that we can see more of that in the future. And ultimately, again, sit down here, right, at one point over the next five years and say, Look at that spike. Look how many more people are employed now than have been in the past.
A lot of that, as we all know, is dependent on the economy continuing to improve, but I think there are a lot of things that we can do to really yield positive outcomes. That's what we're about at AAPD, is really changing the paradigm for people with disabilities.
So some of the things that we're doing, and I think probably the one that is most relevant to a lot of folks in this room -- though before I make that assumption, it would be helpful just if you could give me a little bit of a show of sort of who you all are. Are there folks here in the research world?
All right. What about sort of the feds?
There can be overlap, right?
Folks on the Hill?
Folks from the community or advocacy world?
All right. So I'm going to try to talk to all of you, but that might be a bit of a challenge, because you come from all walks of life, but ultimately we're all here for the same purpose, I think. We want to really figure out how to drive some outcomes for people with disabilities.
First and foremost, Henry Claypool joined AAPD from HHS. He's our executive vice president. He is absolutely outstanding. He knows this, these subjects inside and out. One of of the things that, thanks to his leadership, we're really pushing is decoupling of benefits from employment through SSDI. That's the vehicle we've chosen to drive this.
Ultimately, so many people with disabilities face enormous decisions, really, about whether they're going to continue to get benefits or take a job, right, where their health coverage might not necessarily meet the needs that they have in terms of being able to live independently.
So what we're really sort of postulating is that there is a way to remove that question. Basically, by saying as people enter the workforce that what they can do is actually not have to give up that government benefit, but as they move through their career, as they start to make more money that more and more of the burden shifts to the individual. Right?
So rather than it being very black and white, you're either in that income category or not in that income category, it is more tiered. So that more people can enter the workforce. And I don't know if folks know, but this is such a real problem that there are schools, colleges and universities, dedicated to young people with disabilities, and I'm going to not use names here, but graduating seniors who actually train on how to apply for government benefits.
So they go through, right, get this tremendous education and, right, at the end, Oh, by the way, you need to know how to apply for some of these programs, because you're not going to work, because people aren't going to give you that opportunity.
So that is a very, very real challenge, and it's a real challenge for a lot of people, especially if they need those services and supports in order to live independent lives.
So this, right, would create something that allows them to start on the path to success, but then continue to shift more of that burden again to the individual and away from government. It could a very, very powerful game changer.
So Henry, I think, will talk a little more about that when he is here this afternoon. So I hope that you all can stay with us this afternoon when he is moderating the panel.
One of the things that we're doing, though, because I really believe that solutions don't just come from government, they come from the private sector, we are partnering with a group called the United States Business Leadership Network. I don't know how many of you are familiar with them, but they're an absolutely outstanding organization. They have affiliates throughout the country. They're really a business-to-business network of professionals working to try and hire, recruit, retain, build inclusive cultures in the workplace for people with disabilities.
What we're doing is we have launched and we're in the pilot phase of the disability quality index. From my point of view, this is one of the most exciting projects that AAPD is working on right now. So what is the DEI? The DEI is inspired by work at the Human Rights Campaign, corporate equality index, and what it is is going to be a rating system where we are actually out there providing a score to companies on how they're doing on disability practices, ranging from hiring and recruitment to retention, to leadership, to marketing, to accessibility, both infrastructure and online. Really, the whole gamut.
It takes, really, something very inclusive, something very broad, right, can't just be one piece here, one piece there, but what is the sort of total package that a company needs to be looking at in order to be doing right by people with disabilities.
As we often say, even though there is a rating, if a company is participating in this effort, from my perspective they're already doing the right thing. They're already stepping up to the plate, putting themselves out there, taking the risk, right, to learn how to do better for people with disabilities. It's really going to be a great educational tool.
As I mentioned, we have launched it. We're in the pilot phase right now. We had a goal of having 35 companies participate, and we're up to 50 companies right now that are in the pilot. Part of being in the pilot is they get to be anonymous, because they're helping us build a better tool, right.
We are giving them sort of free pass the first time out. But what is powerful is we're talking about leading companies in telecom, in entertainment, in retail. It really runs the gamut. So really great companies that are stepping up to the plate to help us refine this. It was actually built by people with disabilities and by people in the business community. Together we had a really powerful advisory board of folks from all various industries, community representatives to come up with the questionnaire.
One of the things that I will add is that going along the lines of that this is an educational tool, the first time people get a score that score isn't actually public. What will happen is we will work with companies for a period of 6-8 months to help them improve that score. To me that's the opportunity. That is the chance for us to actually get folks to really think hard about what their practices around disability are, to get them to make changes, so that on the tail end when that score comes out it's a higher score, but ultimately they're doing things differently to change outcomes for people with disabilities.
The second thing I'm particularly proud of is the work that happened recently to get 503, revised rules on 503 implemented. So 503, I'll just be very brief on this, because I think probably all of you know, is going to require federal contractors to set a hiring target for people with disabilities of about 7%. This effort had been going on for so long. So many people, community folks weighed in during the notice of proposed rulemaking, businesses weighed in. We finally have this final rule.
For folks who don't know, federal contractors represent 22% of the American workforce. 22%. This 7% aspirational goal has the power to be a huge game changer if implemented well.
There's a big "if" there, right? Lawsuits are already being filed. Day one is sometime in March, so it isn't quite in effect yet. But there are people out there in the construction industry, right, asking the same old questions: How on earth can someone with a disability work in construction?
Well, that's a very myopic view of disability. We all know that. So what we need to do, actually when I say myopic, is really educate employers, educate folks to let them know that there is a way to change these numbers, that it's good for business and good for people with disabilities as well.
So 503 is going to be a big focus for AAPD moving forward, and I know it's going to be a big focus for a lot of organizations in the disability space as well.
One of the things that we work on every year, and it's changing, becoming even more effective and more powerful, is Disability Mentoring Day. It was actually founded by the White House back in the 1990s, transferred over to AAPD in 1999-2000.
We this year brought together over 17,000 young people. I shouldn't say brought together, but engaged 17,000 young people from across the country in mentoring, job shadowing. On the third Wednesday of each October we do this program.
This year, we're changing it into a yearlong program. We have 111 coordinators from across the country. What we want to do is really take that one-day experience and turn it into something that lasts all year, because that's how we're going to change outcomes. The younger we engage folks in the conversation about their careers, the more likely they are to go on to successful careers.
I will never forget, I was at a Senate hearing once, and I forget the topic, I apologize, but the young woman testifying, she had cerebral palsy. One of the things she shared was that when she was growing up, not once, not once did anyone ever ask her what she wants to do when she grew up.
That is something that we take for granted, so many of us, right? You have those conversations, you want to be a firefighter or nurse or doctor. As you get older, it becomes more complex, but that question, right, that dream is something that so many of us just is a natural part of life, that for people with disabilities isn't necessarily always there.
So that's why PMD can be such a powerful tool, because you are talking to young people about their future, and saying that they have a future, and that future can be anything that they want if they put their mind to it.
So really, really powerful program, right, but as folks come out through the educational system those numbers are going to change over time. We aren't going to see that immediate impact, but it will have an impact. I think as we focus on young folks transitioning from education into the workforce, that is where there is so much tremendous opportunity as well.
One of the things that we're doing is trying to provide more opportunities for people in very specific career paths as well. So we just this year launched the NBC Universal scholarship for people studying media and communications work. We gave out four scholarships, $5,000 each. It's named after Tony Coelho. It was his brainchild.
Really, the goal is that for us to make change, one of the things we need to change is societal attitudes. So this scholarship, right, is helping put people in place in professional settings where they will eventually go on to make a difference in that dialogue, whether they are working for a television network or a small communications firm or polling firm. Having people with disabilities will make a big difference, because for so -- just across the board, you can think about it, in polling there's just a dearth of people who ask if someone has a disability when they're conducting their polls. Right? So having people that think about that is important, right? When you're looking at television networks and the stories being crafted for the American audiences, that is so critical that there are people with disabilities who are making sure there are more characters with disabilities who are on the screen.
That work is already happening in a big way. I was actually -- just, as a quick aside, one of my favorite shows is "Grimm." I will confess. They had a deaf character on one of the recent episodes.
You know what -- people don't do that. They just don't think about that, right? But disability is such a natural part of life. If you look at the -- if you're watching television or a movie, it's not something that you see very often. I was so impressed that -- it was one of the not main characters, but a significant character in that episode. What a great thing to see, but all too rare.
So that's one of the things that we want to change, because I think ultimately it's going to help change these statistics, because people when they are more comfortable with people with disabilities will, I think, make different decisions around hiring.
So one of the things that I have in front of me, really quickly, is what are some of the concerns that people have when hiring? I think we need to address those concerns in a real way in order to make change.
This was from a recent poll that was done with HR managers. 81% said that they were worried about the cost of providing reasonable accommodations. Well, we all know that the cost of an accommodation is not that significant. The average cost of an accommodation is $35.
80.9% said they don't know how to handle the needs of a worker with a disability on the job. That goes to why we need to change societal attitudes.
80.2% said they are afraid they won't be able to discipline or fire a worker with a disability for poor performance. Well, that goes to the educational piece. That's why things like the DEI and other tools out there are going to be so important for the community moving forward, because we need to educate folks and we need to educate folks in a new way, because as we sort of talked about there is this veneer that everything is rosy, but the outcomes aren't there yet.
This keeps going, but the last one I will share is 73% say they can't ask about a job applicant's disability, making it harder to assess whether the person can perform the job.
So again, that goes to the education piece, right? For federal contractors specifically, now they're actually going to have to ask the question and legally can ask the question. That is a pretty exciting game changer, I think, for a whole host of reasons.
So the other thing, those are some of the problems, but what are some of the bright spots? What are some of the places that we can look to that are really game changers for the community that can be replicated?
One of the first things I will say is, looking at government, the President's executive order, they're meeting a lot of success hiring people with disabilities at the federal level. They need to do more, but that could be replicated in all 50 states. It could be replicated in counties. It could be replicated in cities and towns across the country. So taking something that is an effective tool and replicating that.
Section 503, which we already talked about, I think is a tremendous bright spot, but something that also could be replicated. There are contractors who work with cities and towns and work with state governments. How can we take this model and take it to different places throughout the country in order to see even more change in the future, so again those stats start to move?
The NGA, National Governors' Association, had a huge workforce initiative this year around people with disabilities, called "A Better Bottom Line," where really from my perspective the dialogue started to change. It was with the right people. It was with the decision makers. That again can be replicated at state levels, replicated at the town level, it can be replicated around the country.
What we need to do, what AAPD is working to do, is trying to do just that, which is really see these models, see these bright spots expand, rather than just having them be one-offs.
Finally, I would say there are private sector companies doing right by us as well. If you look at the work around Walgreens, they started with a 7% hiring target in their distribution centers. Now they have a 10% hiring target for the entire company at all levels, and that is absolutely outstanding.
It was incremental, right? They started where they could. Randy Lewis, who was with Walgreens, sort of the brainchild of this effort, they started where they could. They started with the distribution centers. They got a lot of feedback for that. He was able to show the success there, then expand to the whole entire company. So taking a company like Walgreens, taking their model to other employers, I think, is something that you will see a lot more of in the future. Toys R Us recently followed suit. I think we will see other companies start to do the same as well.
But ultimately, what does this all mean? It means that we need more nuanced approaches to the work. We need to take a look at the bright spots and make them shine, make them shine wherever we can, because that is what it is going to take to make real change. We need more nuanced approaches, because black and white doesn't work. Black and white isn't getting us where we need to go, but a nuanced approach can.
So I think you will see really a changing tide around this work, because I think a lot of folks who have been working hard for a long time on these issues are starting to see results in a really profound way. AAPD is there, has been there as a part of that, and will continue to be. Ultimately, we will have great research to back up all that we're doing, and hopefully this research is really going to reflect a lot of positive change and a lot of positive change for disabilities in the future.
I thank you all for a really great workshop session. We're going to hash through these statistics. That will be a great dialogue as well. So enjoy yourselves. Hopefully we'll all learn quite a bit. Thanks.
>> Debra Brucker: We'll move on to the workshop portion of the morning. Are you going first, Matthew? OK. This is Matthew Brault. I need to get the slides from here.
>> Matthew Brault: My name is Matthew Brault. I'm with the health and disabilities statistics branch of the US Census Bureau. We're responsible for putting out a lot of the data that you find in this compendium. So I'm going to talk a little about some of the data releases in the last year, and talk about some things that you can expect in the near future.
In this past year we've put out a major tabulation called Disability Employment Tabulation. This was a joint effort between the US Census Bureau and Department of Labor, specifically Office of Disability Policy, Office of Federal Contract and Compliance Programs. What it was, it was a series of cables that used the 2008-2010 American Community Survey data. It's all on the Fact Finder.
The seven tables touched upon detailed applications, the EEO application, job categories, federal sector job groups, state and local government job groups, educational attainment and age crossing, then probably the biggest table out there in the package was looking at employment statuses and earnings for detailed occupations. Each one of these different tables were crossed by disability status, sex, race and ethnicity and citizenship.
So it's getting to a very fine detail at some small geographies as well. Looking at this as nations, states, CESAs, sometimes called core-based or metropolitan areas, public use and various county sets.
A lot of very detailed information if you ever wanted to look for a specific occupation type and look at how many people with disabilities versus those without disabilities, men with disabilities, white men with disabilities, and you can really get into a lot of very fine data in this table package. Basically, it was modeled after the EEO tabulation. The Equal Employment Opportunity Commission does a tabulation of Department of Labor, Justice, they contract with the Census Bureau to do tabulations both with their own use in doing compliance work making sure that companies are in compliance with various EEO laws.
So we took -- that is based off the five-year data set. I'll get into that later, but this is using three-year data and touches on a lot of the same crossings, but we've added that disability component to the tables that weren't there before.
Some of the interesting things we get from this is you can see -- it's a little bright. Some of the most common occupations for people with disabilities, and you find that janitors and building cleaners are the number one occupation for people with disabilities, with a little over 300,000 workers. Also near the top are drivers and sales workers and truckdrivers, cashiers, retail salespersons. You do find there's a lot of sort of in the same kind of area, so a lot of things in service industries, things like that.
Then we can look at what the occupations with high prevalence of disabilities. It may not be those that have the largest number of workers with disabilities, but within those occupations have the highest percentage of people with disabilities. We find that cutting workers had the highest -- of workers that there are at least 20,000 in the United States, cutting workers had a disability rate of a little over 16%. We also find that crossing guards had high disability rates, motor vehicle operators, dishwashers, things like that.
You could also break these out by the EEO occupation groups. This is where we see that those service workers were the number one group. But we also see administrative support workers as a very large number of workers with disabilities.
When you look at the earnings distributions, you can see that there is a definite shift where people with disabilities earn less than those without disabilities. One of the interesting things in this is how much does occupation play a role in that earnings distribution. You can see that even among certain occupation types you see that shift, but sometimes it's there, sometimes not. Among janitors, you find that janitors with disabilities earn less than janitors without disabilities. But the distribution for cashiers looks almost identical, that there really is almost no earnings differential between people with and without disabilities.
So in addition to other things from the American Community Survey, in this past fall we put out our one-year and three-year estimates for the 2012 data. These are all in the Fact Finder, so another year worth of data we put out.
I really was hoping for this event to be able to show you stuff from the five-year data. Because of the shutdown in October things got pushed back. Our release went from the week before this event to the week after this event. Just that two-week difference, but kind of affected what I can include in this presentation.
If you check the Census Bureau's website next week, we will be releasing the first five-year estimates of disability status. If you remember, the Census Bureau changed the questions on disability status in 2008, which caused the discontinuity in the disability series. As a result, the aggregate, we couldn't do the data from the multiple years to get smaller geographic areas.
This year with the 2012 data, this is our first five years of continuous collection on these questions. So we can now start putting out detailed information down to very small geographic areas.
So December 17 is when these data are being released. We will have information for all counties in the United States, all places, all census tracks. We have block group data. If you really wanted to get very, very, very small geographies, you can. The block group are not on American Fact Finder, but in summary format for researchers who want to get to that.
Just reiterating, because we know a lot of people are approaching this five-year data file, from conversation with people at the Department of Justice who want to use this information, just reminding people these are different from what was in Census 2000. Census 2000 being the last time we actually had a census track level data for disability. So they're really not prepared where you can take one and say that disability is increasing, it really is a different measurement.
We're also focusing our report on working with the disability as a focus for using these data this year. We're looking at expanding stuff from the disability employment tabulation, looking at occupations and industries and levels of work, and using the very large sample that provides to very small groups and get a lot of very good detailed information about characteristics of workers with and without disabilities.
On that same topic of small area disability estimates, since we know that ACS definition of disability only captured very poor aspects of disability, it's not a very comprehensive measure of disability. The Census Bureau has been looking towards methods of combining information from the program participation with the American Community Survey in some kind of model-based estimate to look at state and county level estimates of disabilities for more comprehensive measure.
The Survey of Income and Program Participation that is the survey that produces the number 56.7 million people in the United States with a disability. It's also the survey that produced the number that the ADA cited in 1990.
So we looked at a couple of methods. One was the bivariate area level model. I won't get into details about how this works. This is the method being used by the small area income and poverty estimates program, small area program with the Census Bureau. Basically, relies on taking some survey-based estimators, combining with a whole array of auxiliary data, a lot of things from the programs to kind of help model them on variance on the estimate.
The other method we looked at is the regression projections method. It's almost like a method where you take things with high correlation, compute the information onto -- from the SIPP onto the ACS and use the ACS as a vehicle for tabulating the smaller area models.
We did a study of the regression projection methods for a paper presented at the joint statistical meetings this past summer, where we basically found that there were some problems with the method. We're looking into some ways to kind of get around those problems, just the fact that a lot of the variance reduction was model specific. So complicated way of just saying that we still have a lot of work to do trying to get something useful out of this.
We also have SIPP 2.0. They keep changing the name of what this is. It started with what they called the reengineered SIPP, then SIPP on the history calendar. I think it's just going to be called the SIPP again, even though it's a very, very different survey.
With this new SIPP the disability questions that were part of it kind of go away. In the past we were able to use a supplemental questionnaire. It was a topical module that focused on adult and child functional limitations. There are no topical modules in the new SIPP. It's all going to be one core survey. They tried to incorporate as much of the topical module content into the core survey, but they couldn't put the real wealth of information on disability status into that core instrument.
So the disability questions that are in this new survey include the core ACS questions, the six questions that you see in a lot of surveys. It includes some questions on developmental delays for kids under the age of 5, some questions about difficulty playing with other children and limitation in schoolwork for children, then looking at some of the employment difficulty questions that are also on the survey. This all goes into the field next year.
Now, I should say that the questions are -- there are no topical modules, but that doesn't mean they can't use the SIPP as a vehicle for other things. The Social Security Administration is currently paying Census Bureau to develop and field a supplement to the SIPP, and they're including a number of the topics from the topical modules that they use for a lot of their projection work and things that they need. That includes things like the pensions, stuff about marital histories, then the work disability history topical module and adult and child functional topical modules. These are coming back as a separate module, as a separate survey. It's a supplement.
It is going to be fielded slightly different. It will be a telephone-only survey. Because of that, we will have a few modifications and improvements to the survey. One of the things we're particularly proud of is we're changing the way in which people can report the type of conditions or conditions that are underlying the disability. Before, it was a list of about 29 topics and people tend to just ignore the 29 topics, mark "Other," write things in, which presented a problem because the Census Bureau didn't have money to do a coding operation. We just had "Other" as the number one group.
Yeah, which never looks good.
So with this one, we're doing almost like an auto coding operation, where similar to the way Census Bureau questions ask about place of birth. If you say what country were you born in, the person says Kazakhstan, the field rep will type in K, will will abbreviate to every country that begins with K. They can have a shorter list, click a button, that one country that will get filled in. It will be automatically coded right then and there in the instrument. We're doing that now in the list of over 400 conditions that are based from the ICE-10, the codes that accompany them is ICE-10 based. So if you were to write a -- let's say the underlying condition was cerebral palsy, start typing in c-e-r, shorten down to the list, you can see there, click the button, and this will get the ICE-10 code for cerebral palsy.
This involves minimal work for the Census Bureau's coding operations, because it's already been coded, and effectively we want to reclassify conditions in different ways we could. So after we can then say we want to group things this way, we want to say these ICE-10 codes get this classification, these get another classification. We can have one way to classify diseases or conditions. Then we can -- someone else can come in, they can say, Well, I need it broken down slightly different. You can then have multiple different types of classifications. We wouldn't have the problem where they were already grouped into one set of classifications and we wouldn't be able to break them out again. We're pretty proud of that particular improvement in the instrument, and it would be great to see that when we get the data back from that.
Here are links. I think these slides are all in the USB slide. If you get these presentations, which we can get all of the links from that, both the data in the American Fact Finder, go to the equipment tabulation, and basically our disability page on the Census Bureau where we have all of this information.
This is my contact information. You're welcome to give me a call anytime, send me an e-mail, I'll help you find anything you're looking for. Happy to take any of your questions.
>> Brian Armour: Good morning, everyone. My name is Brian Armour. I'm with CCD, Centers for Disease Control. I've been here -- if you've been here the last several years, I'm a regular fixture at these things, along with Matt, Terry. Matthew and Terry.
I always feel like they all go by because I'm here talking about health, everyone else is talking about employment. But as someone once said to me, health is key to employment. So I think there is room for me, and I'm glad Andrew continues to invite me.
In years past I've talked about disability and health surveillance systems, which we launched a couple of years ago. What it does, it provides data for every state. It is called for in the Institute of Medicine reports. We finally delivered on it a couple of years ago. For each state you can see, you can look at people with and without disabilities, and you can see disparities that exist.
What we've done this year is we've added a feature called Upstate Profile to that. Now you can go in for a particular state and look at a number of indicators across within that particular state, which is a new feature. That's DHDS, Disabilities and Health Data System. Dhds.cdc.gov.
This year I was asked to think about something different; I was asked to think about a problem of program this year, demonstrating program value. Let me move to the next slide. I'm not sure how well you can see these slides, so I may be reading them to you.
Basically, it's a conundrum many of us face. We have state programs. In our case, 18 states. Within these 18 states, they're doing terrific work trying to improve health and wellness for people with disabilities. What we get are a bunch of results. We don't get health icons, and it's difficult to show impact. So I've been asked to think about that problem. That's what I've been working on this last year. I think I have a proposed solution to that problem. It could be a little provocative, I hope it's not, because the intent is to improve health and wellness for people with disabilities. Thank you.
The intent is the improved health and wellness for people with disabilities. Keep that in mind. Also, these are my thoughts and opinions. CCD has not endorsed them as of yet. I'll remind you of that at the end also.
What we have is we have these 18 states, as I said, and they're doing great work, but how do we demonstrate the value of the work that we're doing? How do we tell our story? That's real difficult. Because we went to each state, said, Whatever your needs are, we want you to work on improving health and wellness for people with disabilities within your state based on what their needs are. Now we're coming back, saying, You need to demonstrate the value and impact of these programs, and that's quite difficult when the needs can vary across all of these states.
Also, we have prevention resource centers. You've heard of some, like Special Olympics and the MPD Coalition. I was also asked to think about how we can integrate what our states do with what these prevention, public health prevention resource centers do. Those are the questions I was asked to think about. What I did was I threw some other things in there also, as you will see during the course of the presentation.
So what do we know? If you go on to DHDS, you will know what people with disabilities are underserved in terms of their health. They're more likely to have behavioral risks, be obese, smoke cigarettes, be physically inactive. They're less likely to receive services like oral healthcare. Those visits are problematic especially for those with intellectual disability, and less likely to get mammograms, women 40 and over less likely to receive mammograms. That's what our website tells you at a state level. There are these gaps or disparities in health.
The question I have is are these generalizable? These findings that we see from a state level data, is it applicable to people with limb loss, intellectual disability and paralysis? The problem is we do not know about it at the population level. That's one of the problems we face here.
So that's challenging for me, because with the various programs, particularly at CCD, cancer program, smoking and health, I talk about people with disabilities and they always ask me, Who are you talking about? OK, so you work at Special Olympics, are you talking about people with intellectual disability, paralysis, limb loss? I'm like yes, but I just catch it when it happens. That's the problem that I have. The problem is what I have is not intuitive; I can't relate to any of these populations. That's a difficult sale, even within CCD.
So the problems, what we have with this data, this data are you limited in any way in using special equipment? I have like a 40,000-feet view. Flying over, looking out of the airplane, I can see it is white, I think there's snow on the ground, or green, there's grass, or yellow, I can't tell if it's wheat or what, but I have that type of view with these systems, these data that we have.
With the ACS questions that both Debra and Matt talked about, I think that those will get us a 30,000-foot view, but it's still problematic. It's still not rich enough to be able to articulate what these populations need.
So also, the challenges are many people in living conditions may not identify with disability. So when I get up and talk about disability, and folks from the hearing impaired community sometimes object; they don't see themselves as having a disability. So that's another challenge that we have in health.
We have a small budget, challenge for many of us. And access. This is one of my pet peeves. When you don't know what to do, you start talking about access, personal opinion. It's the belief here is that if you improve access it will float all boats. I guess the point I continue to make to my colleagues is that's a problem. When you don't define the population, you can't figure out where the waterline is, so you can't really say all boats are going to float.
In terms of solving this, I'm an economist, I started thinking, well, it needs a dollar component. I'm an economist, so it's about costs, even though costs is a little of what economists do. It all boils down to the dollar, as you know. I'm really going to talk about populations and diagnoses.
I need to integrate states, our states, resource centers, especially, the coalition at a population level. We need to be talking about population level. That's how I have to think about this problem.
In terms of defining value, I defined that at the intersection of cost and quality. It's the cost incurred and value here. Off our defined populations, I'm thinking about three. Particularly the fourth population. ID, intellectual disability, LL, limb loss, DS, paralysis. I'm going to throw spina bifida, which can be a subset of paralysis, in there.
OK. I'm going to focus on Medicaid. That's what I decided for a few reasons. Each state has its own claims data. It's a big program. The claims data will give us the dollars and diagnosis. These are a population that is disproportionately poor, many have disabilities. What do I mean, many have disabilities? Well, this is some data taken off the Medical Statistical Information System, off the web. Basically CMS data off the web. These are four of our state programs here: Illinois, Montana, New York, South Carolina. I'm going -- you can do this for many states. I think all states, most states for 2010. I'm going to focus in on New York here. What this data appears to say is, for New York, in the Medicaid program you've got about 5 million people who are recipients. The numbers whose basis of eligibility is disability is about 735,000. So basis of that is building disability and Medicaid program in New York, about 15% of people in the program are in the program because of a disability.
So if you look at the expenditures then, the expenditures for the New York program are $42 billion a year. $42.7, $43 billion. The disabilities expenditures are 20 billion. 15% of the people account for almost half of the expenditures. That's true in many states. If you look at just the selected states there, Illinois, 12% of the population accounts for about 42% of the expenditures. Folks with disabilities are consuming lots of healthcare, Medicaid. I really want to figure out what that looks like.
So I've kind of -- as an economist, I'm playing with numbers. I'm just playing with the New York numbers that I have. So total number approximately 5 million, total expenditures 42 billion, average cost about 8,000 per recipient. When I look at the average cost for folks whose basis of eligibility is disability, it's about $27,000. I've gotten some supplemental information to look at ID. I am somewhat confident in the numbers I'm getting, but not confident enough to give you a precise number. The average cost is $100,000 plus.
I've talked to a couple of Medicaid directors, they say, yeah, that's in the ballpark. So the average cost for ID is $100,000 plus. If you think you know a little about this population, so what do I want to know? Well, before I get to what I want to know, I want to talk about money's worth, being an economist. The average cost of Medicaid disability is 100,000 plus. We have this terrific CCD program; it's a $200 million program, I think it's got an increase in budget. And that's about 400,000 women each year; it has them screened. If they're unfortunate enough to have cancer, Medicaid kicks in, covers the cost of treatment.
So the average cost for identification screening is about $500. In terms of our disability and health program, it's less than $5 million to describe some number of people, hopefully with ID, limb loss and paralysis, and now it improves the quality of their care.
Again, if we can do this, so our partner state receives $300,000, it identifies 30,000 people with ID, that's a tremendous value in my book.
That's how I get about this.
What are the needs? What am I trying to fill in? This is what I hope to fill in. If you look at those columns: Medicaid program number, demographics, age, gender, race, healthcare statistics, mammograms, oral health, hypertension, behavioral risk.
Some of the work I'm doing, I'm looking at the initiative, one of the things is hypertension. So if you look at people with hypertension that are treated but uncontrolled, there's 15 million people in the US who have treated hypertension that's uncontrolled; 10 million, 2/3, have a disability. These are the things I want to look at, the Medicaid, but not in general. I want to look within these ID, limb loss and paralysis populations, then a total at the end. I want to be able to fill in those blanks.
We don't know this number. Then, say for the limb loss example, I would like to know, well, is there a co-existing condition? Is your limb loss related to something, say, like diabetes? If yes, what's the diabetes? Are you getting good quality of care? Can you ascertain if the limb loss is due to diabetes? These are the types of questions I would like to answer.
The benefits of what I'm proposing integrates what our states do with resource centers like Special Olympics, MBT Coalition. It's data driven. You can get cost estimates and do money's worth analyses. I think it can help reduce the disability casualty issue. If you're obese, and you have an intellectual disability, we know that it's not the obesity causing disabilities.
Financially populations over time, within my unit, CCD, we have a hearing group, early hearing intervention group, visually impaired, children with disabilities. We have a CDS group. I think we can also with the Medicaid data look at these different type of populations perhaps at the time.
One of the things here, it won't be able to make groups if we use diagnosis that don't see themselves as having disability. Some, I guess, might be in terms of the social model of disability, but again I'm interested in folks with ID and muscle paralysis. Keep that in mind.
Nothing about us without us. I hear it all the time. It's important to have people with disabilities represented in different committees. I agree with that. I've always wondered can I have people with intellectual disabilities on the committee? I'm curious. Does anyone have an answer? My guess is very few.
Again, not trying to be provocative. These are just questions I'm interested in answering.
I think the approach that I'm kind of thinking about has a number of benefits. We asked a number of questions. What do you believe covers the disability? Does Medicaid cover it? That's more challenging. Lots of times when someone has a basis of eligibility disability, those records are not kept, so they're in Medicaid for seven years and no one can tell you what got them in in the first place. Then you have to start to look at the diagnosis to figure out what got them in. It's a guessing game. What are the costs associated with the leading causes of disability? Top 10 for Medicaid. I'd love to know. What are the hospitalization rates? What are the leading causes of use among people with intellectual disability? I hear in one state, Delaware, where Medicaid doesn't cover oral healthcare of people with intellectual disability it's treating in emergency rooms, that's where they get their oral healthcare. There might be a cost argument perhaps one can make, that again Medicaid should cover oral healthcare for people with intellectual disabilities.
These are the things that I hope to flesh out and think about in the future.
In summary, few understand what I do.
It's not integrated. There's no list of defined population. When I talk about disability, I think about it in terms of social model, are you limited in using special equipment? Nobody knows who the heck I'm talking about. So the definition's too broad.
We lack the disability conditions specific data and program efforts. I think the solution focuses on three populations I mentioned, also spina bifida, would help us to find value in the statement.
A lot of it integrates what states do with our resource centers. It's population and evidence based. It has the evidence the physicians, policymakers often want. Also has the ability to integrate across various CCD teams and programs. It includes people with disabilities. I can actually be specific.
Again, there's my contact information. My name is Brian Armour. I'd love to hear your thoughts on this. If you want to get it later. I'd love to hear your reaction. Again, there's a disclaimer here: This is me talking, not CCD.
Thank you so much.
>> Debra Brucker: Thank you, Brian. We now have Terry McMenamin. Then, following that, I believe we have a replacement for Jennifer Sheehy. Is someone --
>> Yes, I'm here.
>> Debra Brucker: Charise Hunter. She will be after you.
>> Terrence McMenamin: We'll probably leave extra time for questions, which I will probably confuse everyone and you'll have questions. Hi, I'm Terry. I'm also, along with Brian and Matt, one of those guys who shows up every year. You may know me.
I'm from the Bureau of Labor Statistics, and I guess about five years ago we added some questions to hopefully identify most people with disabilities. We had the same six questions as in the American Community Survey, several other surveys using those questions now.
We work closely with the Office of Disability Employment Programs to get these questions in, and to continue to. The Office of Disability Program Policy funds the questions in a lot of the work that we do.
These six questions, we want to identify people with disabilities. They went in June 2008. We were able to start releasing data in 2009. The data back to June 2008 are available now.
We have our data release monthly, and that includes all disability data. So data by sex, race, ethnicity, all employment, on employment, not in the labor force and so forth. All those categories are now available by disability. All of the data being shown today, they're all available on a monthly basis and have been back to June 2008.
Disability in noninstitutional basis, what we focus on in the CPS, and that includes all those who aren't in institutions, such as correctional facilities and residential nursing, mental health healthcare facility. I tried to narrow that down to exactly what that means a few years ago, and essentially what it means is if you can walk out on your own and come back, you're in the CPS. If you are not allowed to leave without supervision or someone's permission, then that group of people would not be included. If you're in the armed forces, we don't ask you if you're employed.
Here are disability rates by age, the annual data from 2012. So as you see here, a large portion of those are 75 and over have a disability, and much less for those 16-24 and younger ages.
This is something to keep in mind, as you will see, as you can see here -- well, everything kind of fades in there. A much larger portion of people with disabilities are 65 and over, 45.7% of that group, compared to 13.5%. That has a large impact on whether people participate in labor force. As we all know, 65 is the age we all want to retire, down to the Bahamas or whatever, in this country. At the age 65, people just naturally participate in labor force a lot less.
So a group like people with disabilities, that generally have a much higher portion who are that age or above, you're going to see naturally a much lower labor force participation rate. So we try to -- essentially, our tables try to include, for the most part, an age break that's not in any of our other tables on a regular basis, those 16-64. I mismarked this. This table here. I apologize. I was going to rush in the last two weeks. The bottom line should say with a disability, 65 and older. This is the number of people as measured by the CPS on a monthly basis of persons with a disability, which is the lower line; person with no disability, which is the red line in the middle, then the total overall. It's interesting to me, as the baby-boomers start to enter this 65 and over group, you can see a marked increase arise in the total of persons with no disabilities, but persons with a disability clearly is fairly flat. Even a slight rise, it starts there, kind of flattens out. As the baby-boomers start adding to those 65 and over, as of yet it hasn't shown a marked effect on those with a disability. That will be an interesting thing to watch as we see those people, the baby-boomers, flood into this age category.
Labor force participation rates, I was mentioning before, that's the portion of the population that participate in labor force. Now, labor force includes people who are working and people who are considered unemployed. That would be people who are available for a job, they want a job and have been looking for a job actively the four weeks preceding the survey.
The sum of those two groups is labor force, and as you can see the lower lines, which are supposed to be blue, and the higher lines, which are red, the red lines are those with no disability, blue lines are those with a disability. We've, since we started measuring this on a monthly basis we've seen a consistent, much lower labor force participation rate for those with a disability. This is something that, among all the different characteristics that we measure in the CPS, we've never seen that type of characterization before.
So when we started measuring this group, that was something that really jumped out at us. As I mentioned before, it's something that clearly is something you would expect when a much larger group of persons of that characteristic are age 65 and over.
As I said, we try to break these data down by 64 -- 60-64 and 65 and over. As you can see, even among those 60-64, the labor force participation rate is consistently much lower than those with no disabilities.
Here's monthly data. You saw some earlier, the opening presentation. Here is persons with a disability, by sex and 60-64. As you can see, since June 2008, which was already into the recession, these lines have moved fairly closely together.
The overall rate of workforce participation has done about the same. It's been consistently dropping, and that's something that we haven't pointed to a reason for, but it's certainly something that people who study employment and so forth are concerned about.
Now, employment population ratios are simply those who are working divided by the total of that population, and as you can see this is much the same. You can see across race and ethnicity that's a fairly consistent story, that the employment population ratios are significantly lower for those with a disability than with no disability.
The employment population ratios by educational attainment shows the same story. There are a couple of interesting things here that I'd like to point out. One is that only 28.4% of people with disabilities who have completed a four-year degree or higher are employed. That's puzzling.
The good news here is that, as you can see on this chart, much like those with no disability persons with a disability their employment population ratio has climbed with their higher levels of education.
Employed persons by occupation, you saw that on Matt's presentation. You can clearly see the management professional categories, which are these are very large occupational categories. Management professional categories clearly show a higher portion of persons with no disabilities amongst that group employed in those categories, compared to those with a disability. And those with a disability, a higher portion of persons employed are employed in the service and production occupations than those with no disabilities.
Here's the percent distribution of employed persons by class of worker, and this shows in the government class the numbers are fairly close; persons with a disability and persons with no disability are equally likely to work in government.
In private wage and salary occupations, the persons with no disability are more likely to be employed in those groups. Persons with a disability are more likely to be self-employed.
Now, I'm not providing too many reasons here. That's something that BLS we tend to try to let the numbers speak for themselves. So as far as providing purpose and reason and so forth behind numbers, we leave that to other people as much as we can. But as you'll see, we do try to delve into some of the issues that, for example, have been brought up today. I'll get into that a little bit later. But I thought I'd give that disclaimer here.
We do look at also, within our survey, the persons who work part time for economic reasons. And to give a brief explanation of that, that's people who usually work part time, so their hours are below 35 hours, usually, per week. We ask them the reason that they work part time, usually. When people say that they would prefer to have full-time hours, but they can only get part-time hours, for reasons such as their hours were cut back or they can't find full-time work, we call those reasons economic reasons. So it's essentially beyond their -- out of their own influence to get full-time hours.
So you can see here, those with a disability show a slightly higher rate of working part time for economic reasons, among those who usually work part time.
Unemployment rates: We have a number that many of you should be fairly familiar with. The official unemployment rate comes out the first Friday of every month. In that news release that we put out, the sixth table on the news release focuses on those with a disability. Now, these are annual numbers here. The monthly numbers are something, as I said, comes out in the same press release as the official unemployment rate. The unemployment rate is consistently higher for those with a disability throughout the time that we've been collecting these data.
An interesting thing you will see, among those age 65 and over the unemployment rates are consistently much lower than amongst those 60-64, and as we discussed before the reasons for that are the high rate of unemployment -- or retirement and so forth, those types of reasons that go into being 65 and over.
Now, amongst those who are not employed or unemployed, if you consider that group to be not in the labor force, now, we do ask some questions of those not in the labor force to try to clarify how much of what we might call an attachment to labor force they have. For example, we ask persons if they want a job. This chart breaks down people who said that they did want a job, by disability as well as reasons of discouragement. Because we asked that additional question, if they say they do want a job, what the reasons are that they feel they haven't been able to find a job.
Now, this chart also breaks down these groups by 60-64 and 65 and over. As you can see, a very small portion of those not in the labor force say they do want a job in the first place. For those with no disability, it's around 5%. For persons with disability it's just under 2%. That's for persons 60-64. For those 65 and over it's around 1% or less for both groups.
Now, as I said, these are broken down further into those with discouragement and reasons of discouragement included, for those with no disability 60-64, a little less than 2%, and it's around 1% for those with disabilities 60-64.
This points to, these data, we didn't collect these data specifically to address the idea of persons with disabilities desiring to work or so forth, but clearly these speak to that theory, the idea that people with disabilities want to work a lot more than they currently do. Clearly, unfortunately, the data show that if you ask people with disabilities, "Do you want to work?," it's a clear result.
I'm not saying that the people with disabilities do not want to work. I'm saying that sometimes when we focus on the employer and try to change their attitude towards people with disabilities and increase employment that way, that maybe the lack of results there may be because we're focusing on the wrong end of the issue.
Now, we have in the CPS, since it is a monthly survey, we have the ability to add supplemental questions to the end of the survey on a monthly basis.
In May 2012, we did just that with disability questions. The supplements themselves follow the regular CPS questions. They can be linked to the questions that we asked earlier in the survey. So any categories, such as disability, age, employment status, those types of things can be a link to a specific question.
So we put a lot of work into, along with ODEP and other groups, putting together a set of questions that can be linked to and address issues that we found, such as desire to work or things like that, to say add to the information or clarify some of the information that we get in the regular CPS.
These supplements have to be planned and funded years in advance. As I pointed out, the ODEP group and other people work on this for several years before the supplement went into the CPS.
Questions are subject to a very detailed testing and approval process, and in May 2012 we added this supplement. We asked questions about, and I'm going to read through these quickly, barriers to employment, prior work experience, career assistance programs, participation in those, participation in financial assistance programs, difficulty completing work duties, requests of changes in the workplace, commute to work, work at home, flexible workhours, and temporary jobs.
Now, these questions, several of them, included follow-up questions. For example, participation in financial assistance programs was followed up by a question involving the likelihood of working if there were no limitation combined with that financial assistance program.
Just to show you a couple of slides of data from these supplemental questions, this first chart shows persons with a disability who are not employed, who reported having a barrier to employment.
Now, we didn't specifically limit persons to one barrier. People were asked about each of these barriers in order, and were able to say yes to each of them. Clearly, right around 10% or less reported lack of job counseling, lack of education or training, lack of transportation, loss of government assistance, need for special features and employee or co-worker attitudes.
80-81% reported that their own disability was a barrier to employment.
Another question we asked involved persons with disabilities and their receipt of career assistance, and we broke this down by employment status. We found that persons who were unemployed were -- a very large portion compared to the others, had received career assistance, a little over 25%. Those who were employed reported that they had received career assistance. This is within the past five years that we asked about this. Around 12%. Those not in the labor force were the least likely to have received career assistance, just over 5%.
Now, here are some links for the CPS data. We had a -- we have the disability news release. It's an annual product, and I guess the annual disability news release. I'm sorry, it's the second link, the May 2012 disability news release, which is the first link, that's the one that involves all the supplemental questions.
The third link is the monthly employment data. Table A-6 again focuses on disabilities data.
Recently, there was a visual essay in our monthly Labor Review magazine, the link there. Then disability frequently asked questions about the CPS data are the final link.
My contact information is on this last slide. I encourage you to contact me if anyone wants to talk about any of these data too. Thanks.
>> Hi. I'm Charise Hunter with the Department of Labor's Office of Disability Employment Policy, here for Jennifer Sheehy. I was going to speak a little bit about the tabulation mentioned earlier by Matthew, from the Census. Since it was mentioned, I wanted to add and emphasize that we really do encourage the use of that tabulation. It has one billion, that's billion with a b, estimates of disability status and labor force participation for individuals with disabilities ages 16 and over.
So we're very proud of our relationship with BLS to be responsible for the CPS disability data, and our relationship with Census and the federal compliance, contract compliance office.
I wanted to add that and really emphasize, if you do use it, we also would love to know about it. We have a central contact at ODEP, Dillon Orr. Reach him at orr.dol.gov, who coordinates the work with the Census Bureau. So please let us know if you do use this information.
>> Debra Brucker: So thank you to all of our data people. Everyone take a deep breath. I know that was a lot of information in a short amount of time. But any statistics need context and need continual evaluation. We're counting on you to keep us honest and keep pushing for better statistics.
I wanted to open it up for questions from the audience, for any of the presentations that happened this morning. I'll bring the mic over.
>> That's all right. The gentleman who just spoke --
>> Debra Brucker: Since we're webcasting it, it would be helpful.
>> The gentleman who just spoke, with the Bureau of Labor Statistics, why are the people that are institutionalized left out of the numbers? Probably a very stupid question. I just don't know the answer to it.
>> Matthew Brault: So, the civilian noninstitutionalized population is the typical survey frame for most federal surveys, unless the survey specifically is targeting a particular population. So you find that same civilian noninstitutionalized population used for the survey in program participation, the national interview survey.
The ACS is a little bit different. It actually goes to the larger population, but because of that there are, I'm going to say, more expensive efforts to reach those populations. So to get to survey people in prisons you need memorandums of understanding with the federal, state, and local jails, state prisons, federal detention centers; getting access to people in nursing homes is not always easy due to working with HIPAA information. There are a lot of other barriers to just data collection involving people who are institutionalized.
Probably the other side of it is, for a lot of data applications people are trying to apply these things to situations of people who are in the community, living in -- using transportation services, using local business services, and in that sense the civilian noninstitutionalized population tends to be the group who are actually in the community and using local services.
>> Thank you.
>> I don't know to whom this goes, but many of us struggle to kind of understand the trajectory of disability over the next 30 or 40 years. And we as novices often take the data that you gather and sort of project age cohorts into the future. Because we're novices I'm not sure we do that well, and I'm wondering whether there are efforts among your agencies to really look at that. The trajectories we see right now, your graphs are so gentle, disability basically staying the same within the US population. We know that's going to change dramatically over the next 30 years. I'm wondering if some of you with more sophistication are kind of approaching this either as total numbers of people with disabilities, persons with, say, self-care needs as a proportion of the working-age population, just things to help us understand what we're going to struggle with as a nation as we kind of meet the needs of people with disabilities.
>> Matthew Brault: I think I have two responses to that. One is the Census Bureau does do some projection work. They have not tried to do projecting of disability as a topic. I don't know if that's to say they won't do it in the future. I think it's currently something that's not on their agenda, but it's not my own expertise. It's not in the area of projections. But that's not to say we couldn't figure out something moving forward.
The second side of things, one of the things we do know is that within each age group disability was actually -- has been going down. So if you look at the disability rate amongst, let's say, 65 to 70-year-olds, the disability rate actually was lower in 2010 than it was in 2005. But what we actually see is that the decrease in each individual age group has been offset by the fact that the baby-boom population is aging into higher risk groups. That number, when you say disability rate is staying the same, that really is I think masking something that's going on with disability on the individual age level.
So I think that this is a push also for showing some things as age adjusted or age standardized estimates of disability. That might be also a useful statistic kind of moving forward, and that's something that I know the Census Bureau is looking to start providing in addition to whenever we produce a "proved" disability rate, but that's sometimes in addition to having an unadjusted statistic, to have an adjusted statistic. We added that to the Americans with Disability 2010 report.
The other thing that I think in order to do good projections in the future, we need to have better information about disability status longitudinally over the long term. I don't think there are any studies right now that really have examined the life course of people with disabilities over a 10, 20, 30-year period. I don't know of any source where that really you can get that information now, and the downside of that is if we were to start something right now we wouldn't get the information for 25 years or so.
So the -- I think there is a definite need for some longitudinal analysis. Maybe the cohort-based studies is what we have, but -- yeah.
>> Terrence McMenamin: One thing quick about BLS data. We try not to project, as much as possible. Like I said, we try to let the data speak for themselves. We do have an Office of Projections, and I highly doubt they'll have anything disability-specific, but disability rates and likelihoods and so forth are included in the projections. And I would encourage you to take a look if you're interested in employment, to take a look at their website in the BLS website just to see how those types of things are included. Obviously, the baby-boomers are going to have a big effect on the labor force participation rate, which we already kind of pointed out a little bit in my presentation. Quite simply, the employment projections office are the ones to talk to about that.
>> Brian Armour: As an economist, I'm really interested in forecasting, and we do it often. We usually do it wrong.
But I will say this, in terms of I think that it's defined population, so when you want a number like disability I think you really have to define your population. So I believe with Social Security, DEI, given issues around trust fund solvency, I'm pretty sure that Social Security Administration forecasts the DI population, and I believe they forecast up to 75 years out. If someone from Social Security is here, maybe they can answer the question for you. I'm pretty sure that information you're looking for exists for SSDI. I would be happy to try to help you find it.
>> My question is for Terrence. I was very interested in the slide that you had about the rates of persons not in the labor force currently who want a job, and it seemed interesting to me, not just the 2% statistic for persons with disabilities, but actually the 5% statistic for persons without a disability. To me that just seems low, given all the people that we happen to know are out there currently looking for work who don't have it. So I guess I'm curious how the question was asked or if you had any thoughts about why those rates are so low, both for persons with disabilities and for persons with no disability.
>> Terrence McMenamin: Hi. Good question. Unfortunately, like I said earlier, we try not to get into reasons behind the data. We try to let the data kind of speak for themselves. It's been pretty consistent over time that generally when you see, when we ask people about -- who are not in the labor force what we call their attachment to the labor force, what we do is focus on the first -- we ask them whether they want a job. We ask people who say that they do want a job, they're available for a job, but they haven't looked for a job within the last four weeks, that last part would be the reason that they wouldn't be included as unemployed.
We ask the affirmative question, say, Well, have you looked for work within the last year? We do have varying levels of looking at those who are not in the labor force and what their attachment might be, and so forth. It's been pretty consistent story that most people not in the labor force generally have a small portion of them are looking for a job, available for a job or have looked in the last year. We, like I said, we don't try to hypothesize what the reason behind that might be, but it's something that's been pretty consistent over time.
>> That holds true even during periods of high unemployment?
>> Terrence McMenamin: Yeah, you will see movement up and down with that. So for example, portion 60-64 shown here of persons with no disability it's around 5% that report that they want a job. Maybe you go back to 2007, before we really saw the recession kick in, that might have been down closer to 3%. But even so, still a very small portion of that group who are not in the labor force.
So right now, people are generally still struggling to find jobs. At least, that's what we understand to be the case, and it's around 5%. That's pretty much a height of that. So think about it that way, when things were better you see a lower number.
>> I just have a follow-up on that slide as well. So for both persons with disabilities and persons without disabilities, is there an initial measure whether they had ever participated in the labor force?
>> Terrence McMenamin: We don't have a question like that in the survey. We did ask a question like that in the supplement, and unfortunately we only asked that question of people with a disability.
We really regret now, in hindsight, not having asked that of everyone. We did ask that question of people not in the labor force with a disability. And an additional problem with that question was that we were unable to establish the onset of a disability. So to compare, to take a look at that for people whose onset was far in the past or recent, it's difficult to say, all right, Did you used to work before you had a disability or have you worked since? But we did ask that question in the supplement. So the supplemental questions we have that information for persons with disabilities.
The one thing I'll say about it is that it shows that among -- the higher the age of the person, the more likely that it was that they had worked in the past. So in reality it kind of, the amount of information that that question added to what we know is very minimal. The older you are, the more likely you worked at some point in your life, because at 65 you're much more likely to have had time to work at some point in those 65 years than someone who is 24 and has spent most of their life in school. So certainly, you can take a look at those, that information. I believe the fifth table in the press release, the supplemental press release that has information on that.
>> Could I also ask a follow-up on that? Then I have a Medicaid question to ask on utilization data.
Can you remind me, I'm sorry if you said this, who exactly is surveyed, what are the ends, how many people, and what is the response rate? You talked about being able to survey people monthly. Are you surveying the same people monthly, or are you surveying different people? Sorry if --
>> Terrence McMenamin: I didn't really go into the details on that. The CPS is a monthly survey of 60,000 households, about 60,000 households nationally.
We have a rotational, essentially each household is in the survey for eight total months. Your initial four months are four consecutive months, then that household is not surveyed for eight months, then they're surveyed for another four months. Each month you advance along that, the monthly survey. So each month we have 1/4 of the surveys is new to the survey. They may be reentering the survey or entering the survey for the first time.
So long story short, we don't interview the exact same households over a long-term basis. We do have a fresh set of households every month, and some of those are reentering after having been out of the survey for eight months, some of those are brand-new households.
Does that answer your question? It's a little confusing --
>> It's a random 60,000 households? They're selected?
>> Terrence McMenamin: Right.
>> That's helpful. Thank you. Then I had a question about your data, that you had said that you use state claims data to derive disabling condition. Is that right?
>> Brian Armour: No, I took information off the internet for the disability information of the Medicaid Statistical Information System. But also when your compendium, there's medical data in the compendium, in the booklet, and they were used in a different source. Well, similar source but slightly different time period, and the numbers are basically identical for people with disabilities. They're a little different for Medicaid population in general.
If you look within the compendium, you can find the information. But the exact information I used, I can provide you the website link to it, if that's what you need.
>> The reason why I'm asking is because it's really difficult to rely on a claim to provide you with the information about a disability, particularly for people with IDD, because those IC-9 claims do not land on a claim. The easiest is the home or community-based waiver populations, so the other folks on Medicaid that may not be in a waiver, so that, just to qualify that $100,000 figure, that may be a subset of the population and it may be the high-cost one. So it could be skewing the data.
>> Brian Armour: I agree with you. We don't know. To your point, why claims data, I also agree that it's not ideal to use diagnosis to figure out who has ID. I much prefer to use the basis of eligibility, what gets you into Medicaid. If disability is your basis of eligibility and ID is the primary disabling condition that qualifies you for your basis in order to be insured under Medicaid, that would be ideal.
What I did, we're doing a pilot project to see if we can figure this out, and the pilot project I made the comment where I discovered that in one state, I won't name the state right now because the work is ongoing, what we figured out was that if disability -- I was talking to physician qualified folks for Medicaid disability, it's his determination qualifies folks, and then that record disappears and you're in for seven years. It was impossible to go back and figure out what got people in, hence we're using diagnosis codes and it's not ideal.
Hopefully one of the policy changes, at least within that state, is when you qualify someone where their basis of eligibility is disability please keep that information on file or somewhere so folks like me can go back and figure out what was the primary disabling condition and all of the conditions that qualified you.
>> Having come from a Medicaid program, it's either disability yes, disability no, not what type of disability. Now, it would be ideal if that were the case, and then oftentimes the eligibility system doesn't talk to the claims system. There's just no way to cross-block. Maybe in the future that is something --
>> Brian Armour: No, it's not easy. The physician I talked to, when I asked about ID specifically, he talked about IQ, often used in defining ID, he basically said if your IQ is above this stage threshold, and you clearly need it to be insured, he would figure out how to qualify you based on some other criteria. I think there's no real easy answer to the question you're asking, and that's what we do. We make compromises all the time. You're asking a great question, which --
>> When I heard that, I thought --
>> Brian Armour: What we're doing is reaching out to our resource centers and asking Special O and Arc to help us define people with ID. So it's not us doing it, it's folks that actually work with folks in ID that are doing it. I feel a little bitter -- a little better about that, but again, it's not --
>> Bitter too, probably.
>> Brian Armour: Again, it's not ideal. I get your point. Thank you.
>> Terry, I'm curious, going back to your chart there, I was thinking that the question regarding discouraged workers was only asked of people who had -- I didn't realize it was asked of all people not in the labor force. Is that correct? I thought it was limited to only people who had not been in -- or had been in the labor force in the past 12 months, something like that.
>> Terrence McMenamin: Persons who haven't looked for work in the last four weeks, but have in the last 12 months. We asked why they stopped looking for work.
>> OK. This wouldn't include people who had been not employed or only includes people who have -- long-term discouraged workers wouldn't necessarily show up on this?
>> Terrence McMenamin: If someone stopped looking for work over 12 months ago --
>> Right, they wouldn't have been asked.
>> Terrence McMenamin: Right.
>> OK. One of my thoughts in terms of people with disabilities that may have gotten discouraged longer ago than that, therefore they're not --
>> Terrence McMenamin: People 10 years ago, pick them up.
>> Right. I was curious about that. OK. Thanks. Actually, Matt, I also had a question, maybe more for Charice, the tables that you developed, they're based on 2008-2012 data. I wonder, is there plans to update them to more current data at some point?
>> Matthew Brault: 2008-2010, three-year data. It's the matter that the money has to be there. I think that's just it.
>> At this point, it's that's the years --
>> We can do that.
>> OK. Thank you.
>> Thank you. I wanted to follow up on the projection question. Really, thinking about this at the community or county or state level, where the barrier of 64 or, not or employment policy, may not be as important as mobility and need for services and concerns about isolation in suburbs and other kind of things that clearly we can see happening. I know a number of communities are looking at the questions of the implications physically and programatically in terms of aging population.
So there must be more around in terms of those kinds of projections or those kinds of thinking, than something as specific as trying to project a particular health condition, which sounded like part of the response. Mobility itself is pretty correlated to age.
>> Matthew Brault: Yeah, so the American Community Survey actually does have a question on difficulty walking and climbing stairs. Which can add a large component to mobility. With the five-year data coming out next week, we'll be able to get that at the very localized geographic area.
I think in terms of projecting that information forward for small areas, you need to have multiple points of time to begin with. This is really one of the first times we're going to have that information. I think that there are a lot of factors going into trying to build a good projection model, and I think that if we just start assuming that the rate of disability at a certain age is going to stay the same, I think they're highly correlated. But there's highly correlated and then what the actual level that people at different ages experience mobility restrictions or mobility limitations; if that changes over time then that's going to change the projections.
In addition to just the changing of the aging of the population, which is relatively easy to adjust for because it's births and migrations, effectively, births, deaths and migrations. So I think that it would be possible. I think we just have to know, get a better idea what we think is going to be happening, then essentially being more explicit, I guess, with some of the assumptions we used.
I think it's a worthwhile task for someone to undertake. Again, I don't know if this is something for National Statistical Health Statistics, or the Census Bureau, or BLS, CCD or who should take the lead on it, but yeah.
>> Thank you. Because it seemed important, at least in terms of local planning, and sometimes I think disability statistics as a field has kind of, in terms of trying to be precise or trying to fix exact measures, a lot of people out there also a lot broader questions.
>> Matthew Brault: Yeah.
>> I don't know what the allowable variance is for really getting somebody to see the world is changing, but there must be some language for that.
>> Matthew Brault: Yeah. The other side of that, I'll mention this, the allowable variance, I guess, for the small areas we see something like we do see a lot of variation from one year to the next, potentially, in statistics, especially in small areas. And we know some of that's just sampling. It's the effect of sampling.
When you're trying to build something that's going to look what is a trend going on and the data is looking like this, it's just this up and down, bouncing back and forth, it's hard to really say what's going on, and that's got to make trying to project that information going forward even harder.
>> I don't want to belabor the point on that 5% again, but some of my personal experience of working with people mainly with intellectual disabilities, a job and issues around those lines, their biggest fear, one of the calculations that we had to sit and do is if I do take this job, whether part time or full time, how does that affect my benefits? I think we originally started out about that mindset of graduating people from schools that then they're taught how to apply for benefits.
The biggest fear that the population I was dealing with is if they go over that number they're going to lose their benefits, then if they lose that job they're at least six months, nine months, a year possibly without anything coming in. So I don't know how that affects that area, but that's kind of an observation I have on that.
>> Terrence McMenamin: I am very familiar with that, with that type of scenario. A lot of people that I've encountered in these meetings and others have a lot of experience with people who tie their likelihood of working into whether they lose their benefits or not.
As I said, that's something that we attempted to try to put some kind of number to with the supplement that we did in May. As I said, we asked a question about receiving assistance, and we asked about specific types of assistance, and then we asked the follow-up question about whether the idea that you might lose that assistance if you started working affected your either likelihood of working at all or increasing your hours.
So there's some data there that tries to quantify the scenario you're describing there. But as far as talking to persons not in the labor force, persons in the labor force and unemployed, so forth, these data can only really measure directly whether you're working or not working and whether you're looking for work and want to work. Whether someone under the circumstances you're talking about they may -- the answer to that question would be complicated by the factors that are included in losing their assistance, and so forth.
So that type of thing would be very difficult to measure for people with disabilities in a way that when you say, "Do you want a job? Are you looking for a job?," those types of things, well, do they say yes or do they say no based on their perceived limitations that are tied in with their assistance and whether they'll lose that, how much they really rely on that in order to survive if they lose their job that goes away and then they have to reapply and take years to get it?
Like I said, it's just a difficult thing to measure. We did our best to try to measure that, or at least put some numbers to that in the supplement. So that might be something you take a look at there. We wouldn't, I wouldn't hold this number up and say, All right, this speaks directly to that type of circumstance.
>> Debra Brucker: Time for one last question before lunch.
>> This is a question for Brian. You talked about value, it was the intersection of cost and quality. How did you quantify quality? Go into a little more detail about that.
>> Brian Armour: Yeah, I mean, that's a really good question. You know, in the past when I've been asked to answer that, I said it's like beauty is in the eye of the beholder. >> Debra Brucker: Thank you, everyone, for your great questions this morning. Lunch is being served around the corner, so help yourselves. We will reconvene at 1:00 promptly. Thanks.
I think in terms of healthcare, we know we have a few quality measures, like case sensitive conditions, UTIs. If you have good ambulatory care, it should reduce the need for hospitalization. Folks with spina bifida are being seen in emergency rooms and being hospitalized a lot for UTIs, then the urologists I work with who work with folks with spina bifida, it's an occupational failure.
Quality can't be defined, to answer your question, and I kind of got to it with diabetes, so one of the questions I have, if diabetes is linked to limb loss and we know we can look at the quality of diabetes care, I'm no physician, I'm told you can look at the quality of diabetes care with things like A1Cs, things of that nature.
There are process measures out there that we can use to kind of get equality, but something like, so a quality issue for me, something that I think it will be pretty intuitive for everyone in the room, if you're a woman with disability 40 years or older and haven't received a mammogram in the last two years, I think that's a quality issue.
Hopefully that answers your question.