Independent Living Research Utilization (ILRU)
The National Survey on Health and Disability (NSHD): A Robust Dataset You Can Use
September 28, 2020

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>> MEGAN GILLESPIE: Good afternoon, and welcome, everybody. My name is Megan Gillespie with ILRU. This webinar is being recorded and will be available on demand within a few days. Today, you will have the opportunity to ask questions during the webinar and we do have a number of ways to do this. First of all, in the Zoom platform, one of the menu options is Q&A. You can click there to submit questions at any time during the presentation. We are going to wait until a Q&A break at the end of the presentation to address them, but please send your questions there. If you accidentally type a question in the chat, that's okay, we'll find it there and we will be able to address it, but please try to put them in the Q&A if you can. 
There is captioning available of this webinar. You can view the captioning by selecting the CC tab on the Zoom platform. You can make that box larger by clicking the arrow in the top right‑hand corner. If you need a larger font, check out the full screen captioning. You can find the URL in the chat on the webinar screen. If you're in the full screen CART captioning today, there's a chat option there, too. We will be logged into that chat, and you can ask your questions there as well. We will be sure to voice them during the Q&A break. 
When we finish the day, you'll see the evaluation form on your screen. When you close the webinar, that evaluation form will pop up and it's very easy to complete. I hope you will give us your thoughts on the webinar there. We use it frequently about how to operate and improve the CHRIL project. Thanks in advance for that. Now I'd like to introduce our presenters, Noelle Kurth is a research associate at the University of Kansas institute for healthy and disability policy studies lifespan institute. Her work has included state and federally funded research projects on improving health, employment, and post‑secondary education outcomes for people with disabilities. 
She has extensive experience conducting survey research including survey design and multi‑modal administration, data collection, management, and analyses. One specific interest is connecting primary data to administrative data sets to measure the longitudinal impact interventions public policy have on the health of people with disabilities. A caregiver and medical decisionmaker for relatives has given her a personal experience with a myriad of disabling factors associated with Huntington's disease and strengthens her commitment to the disability field. Our next presenter is Jean Hall, professor in applied behavioral sciences at the University of Kansas. Dr. Hall has published numerous scholarly articles in Inquiry, American Journal of Care, disability and health journal, and also disability of internal medicine journal of vocational rehabilitation, health care financing review, among others. 
Her research has been cited in numerous national media, including the "New York Times", "Washington Post", NPR, ABC news, business week and health affairs. Dr. Hall's research has included private, state, and federal projects related to health care and employment for people with disabilities or chronic illnesses in the employment, Medicaid, Medicare, and high risk systems. A priority of her research is to give voice to people with disabilities and their experience within the health care system. And with that introduction, I will turn it over to you, Noelle. 
>> NOELLE KURTH: Actually, Jean is going to go first. 
>> MEGAN GILLESPIE: Jean, I'll turn it over to you. 
>> NOELLE KURTH: Thanks, Megan. 
>> JEAN HALL: Thank you so much for being here today, this first slide is just an outline of what we hope to cover in today's webinar. First of all, an overview on the Collaborative on Health Reform and Independent Living, or CHRIL. We'll talk about CHRIL activities at the University of Kansas where Noelle and I work. We'll give you a description on the National Survey on Health and Disability or NSHD. Noelle is going to show you some descriptive NSHD data online that's available for anyone to look at. We're going to talk some about our data analysis team, some of the analyses that have been completed and in progress and published to date. And finally, how you can obtain the NSHD limited data set for your own research. And we really hope a lot of people will take us up on that offer, because it's a great source of data and we'd like to see other people work with it. Next slide, please. 
The Collaborative on Health Reform and Independent Living or CHRIL has as its admission to discover and share essential information about how health reforms affect working‑age adults with disabilities. This five‑year project was funded by NIDLIR. There are many institutions involved in the CHRIL project. It's administered through Washington State University. Other partners include the independent living George mason program, the American association on health and disability, the urban institute and we partner with NCIL, and APRIL. The CHRIL project had five subprojects and KU worked on project number one. Our hypothesis was whether coverage expansions under Affordable Care Act and other health reforms have an impact on the quality of life, community participation of working‑age adults with disabilities. 
We worked with the Urban Institute and used data from the HRMS, health reform monitoring survey. They had pre data and post data that continued after the health care reform was passed and we were able to look at data based on disability for that survey. In year two, we conducted a series of national interviews based on some of the findings from the HRMS and asked questions about people's experiences with and without health insurance across the country. So these are working‑age adults ages 18 to 64. Information from those interviews told us participants were faring better under the Affordable Care Act but had a lot of out of pocket costs for health care. That information helped us in year three when we formed the national survey on health and disability in 2018. We had 1,200 responses to that survey and learned a lot and continued our national surveys in year four. 
In year four, we used those interviews to find out in general about people's experiences with health reform and health insurance, but also to look at intersectional groups, for example people with disabilities who are also LGBTQ. While costs were a problem ‑‑ costs were a problem, there were also other barriers to health care and reason for unmet need. And we also found out there's a lot of loneliness among people with disabilities in the United States. So data from those interviews helps us form questions for the 2019‑2020 administration of the national survey on health and disability which was just completed this year. Based on those interviews, we added questions about loneliness and other reasons for unmet need. Next slide, please. 
Publications from years one and two based on those findings from the health reform monitoring survey and from our first round of interviews are listed here. The first publication affected Medicaid expansion on workforce expansion for people with disabilities. People with disabilities were more likely to be employed. In general, people with disabilities were more likely to have health insurance and were more likely to have a source of care showing that the Affordable Care Act was making a difference in their lives. We also looked specifically at people with mental health conditions and found also they were more likely to have health coverage after the Affordable Care Act was passed and less likely to have unmet need due to cost to get mental health care services. In 2018, we followed up on our first paper and found that people with disabilities living in Medicaid expansion states continue to show an upward trend in their employment over time. 
Medicaid expansion was really acting as an employment incentive for people with disabilities living those states. The last publication was based on our interview data and showed that while the Affordable Care Act had positive impacts on people with disabilities, there were also still problems accessing care due to cost and other issues like transportation. All of those links should work to get you to those papers if you're interested in learning more. 
>> NOELLE KURTH: Someone asked if the presentation would be available, because that's why we put the links in. ILRU will make it available on the website with the recording. Okay. So now I'm going to jump in and talk to you about the specifics of the National Survey on Health and Disability. As you see, reform is in parentheses there. As Jean mentioned, in 2018, it was called the NHSRD, national survey on health reform and disability. The survey remained the same, we took "reform" out of the title. The survey was developed by staff across the institutions that Jean mentioned that are part of the CHRIL. We had an advisory board of national experts and also people with disabilities weigh in. Many of our advisory board also has disabilities and so do those of us on the CHRIL. 
We also used measures from other surveys. Like Jean mentioned earlier, the HRMS was important in our first year. We did analysis with that data with the urban institute. Therefore in the surveys, we concluded quite a bit ‑‑ not quite a bit, but several of their questions as well with the idea of comparing over time what they were saying both among people with disabilities and without disabilities so that we could compare. The survey was administered online. There was a phone option. We had a toll‑free telephone number that went out with the recruitment materials and also was on the online survey pages so people could ‑‑ if they were more comfortable or that was more accessible for them. We did do it via Qualtrics, I believe the only completely accessible platform for screen readers. Trust me, I tested lots. I had switched to Qualtrics when I found out it was so much more accessible. 
Sometimes due to the sensitivity people feel with discussing health issues or insurance coverage. The way we were able to do it anonymously and also still be able to use it for research and link survey responses at the individual level over time was that we used to nonidentifying identifier questions and then we could take people's answers from those two questions over time along with selected demographics that were least likely to change and do probabilistic matching. I'll talk a little bit about that later, how we got a subset of survey respondents that completed it in 2018 and in 2019‑20. We field tested the survey multiple times. In 2018 and before the 2019 administration with people with all disability types. And we tested for readability, accessibility, and comprehension of the questions. 
Sometimes as you know questions about insurance confuse people. They confuse everyone, all the terms, so we made sure that terms were defined and that people understood some of the complex issues around insurance and understood what we wanted to know from the questions. The survey was first fielded in 2018 for five months between February and June. The valid number we got is ‑‑ for our sample was 1,246. We had quite a few more responses from that, but people were eliminated over 65, which I'll talk about later, or if they didn't complete the demographics questions or didn't answer a majority of the questions. That's why I have "valid" in there. The second was from October of 2019 through January of this year. And that sample ‑‑ we got a valid end of 2,175. I'll explain a little bit more why we got a higher sample the next year. We tried harder, but we also had additional recruitment methods. About 75% of the items remained the same. 
We found out a lot from our consumers when we interviewed consumers from across the country. That informed the survey changes, the findings in 2018. Like we had an over‑representation of people identifying as LGBTQ so we added questions with regard to what we found in that survey. We also had feedback from our advisory board on changing some of the questions or simplifying some of them. So these are the domains of the content of the National Survey on Health and Disability. Health status is one of the main categories and those types of questions were how many days of the last 30 was your mental health or physical health not good. We asked about the ‑‑ in 20 ‑‑ the most recent administration, we asked about hospital stays, overnight hospital stays and number of emergency department visits that people had just trying to get at how ‑‑ what their health care system utilization might be or how severe their conditions might be. We had a section on community participation. 
I think Jean mentioned earlier we found out in 2019 that people were not satisfied with their level of participating in the community and social activities or recreation. And so we added in 2020 what's called the loneliness scale which was interesting. We had a section on transportation. We wanted to get an idea ‑‑ we were able to tell from people's ‑‑ where they lived exactly if they were ‑‑ how rural they were, but we wanted to really know from their perspective both how far they lived from a major hospital or how far people traveled to get health care services and the reliability and consistency of that transportation. So their items related to that. 
We asked about the benefits people received, SSI or SSDI. In 2020, we added why they applied or why they wanted to get SSI or SSDI if it was either about health care was their main motivation or cash assistance or both. And health insurance ‑‑ yeah, health insurance motivated disability eligibility is something our PIJ Kennedy has written about and is interested in. There were several questions related to Hindi. We asked about employment if people were employed part time, full time, how long they'd been at their job. The bulk of the survey is about insurance coverage because we wanted to hear about what types of coverage people had, those uninsured, maybe why they were uninsured and then we asked a series of questions on what types they had, but then also premiums, deductibles, copays so we could see the specifics of the types of insurance that people with disabilities currently have. 
We asked about out of pocket cost, not including things like copays, but just for prescriptions or basically any health care service, what people's out of pocket costs were. We were able to ask about income by basing ‑‑ we gave people ranges of income and it was based on their household size and percentage of federal poverty level. So we didn't write like you make over 100% of the federal poverty level, but we were able to put a range in there and they could select the range they fell into. Not quite as prying as asking how much they make in a month or how much per hour. We asked about unmet needs, both with and without insurance. 
All the different needs categories, prescription, specialist, prostheses, those. Jean is going to talk about the multiple measures of disability that we used. We had about 15% of the survey sample answered with a proxy, either with someone reading the questions, clicking on them, or answering for them. So I'm going to talk a little bit about our recruitment. In 2018, the first administration of the survey, we worked with about over ‑‑ all of our CHRIL partners, first of all, and then we reached out to around 80. I can't remember the exact number. Either disability or disease‑specific advocacy organizations and education groups. So people like spina bifida association, United Spinal, Foundation for the Blind, those types of groups worked with us. We gave organizations their choice how to distribute information about the survey. 
They put it in their newsletters, their social media, they ‑‑ some people sent out flyers, some printed flyers. It was a very wide variety of ways these groups helped us. We also had recruitment forms people could fill out saying they were interested in the study and doing the survey, and we had that online. And then we handed out recruitment forms and flyers at national conferences. So that was ‑‑ that was our effort. In 2019‑20, we did ‑‑ the second administration like I mentioned before and we used all the same partners. We actually got some additional partners to help us get the information out, and we used Amazon's mechanical Turk or M‑Turk. It's a platform that Amazon manages where you can query individuals, you can set up your criteria. Ours were U.S. citizens who were over 18. 
And then you use a screener question. People who pass that screener questionnaire, you pay everyone about 25 cents. That's what we did. People who passed the screener, they had disabilities, were then invited to take the full survey. We recently have ‑‑ it is available now actually in the pre‑print online only at the link here but we did an article that really explains our recruitment efforts specifically. So that link is there for you. We worked with Dr. Katherine Ipsen. It was focused on rural people because Kat ‑‑ Catherine is with the Rural Institute. We got more than just rural participants, as you saw from the sample size, our increase was not all people from rural areas, it was across the board. The reasons we did the recruitment this way, advantages as you can guess, it's low cost. 
Since we controlled the timing of everything, there's a quick turnaround in being able to open the survey and then close it and have the data. We can also monitor as the data was coming in if there were certain geographical locations, for example, we weren't hearing from, we could reach out to those areas. We worked with a lot of local CILs and asked them to recruit for us, for example, Georgia. The other reason is just, like I said, the low cost. As you know, grants only have so much money available to them. And if you went to a ‑‑ you know, there's lots of survey companies, but we found that they were cost prohibitive because they would charge hundreds of thousands of dollars for us to get a sample. And the other negatives, they don't always clearly ‑‑ clearly is not the right word. They don't see disability quite the same way as we do. They weren't measuring disability in the way that we wanted to, in a broad fashion. Of course there are limitations to online administration and to doing recruitment this way. Not everyone has access of course. 
And then also it's ‑‑ obviously it's a convenient sample, which cannot ‑‑ might not always be nationally representative, like when you have a telephone ‑‑ a company that does telephone phone bank surveying where they can survey tens of thousands of people or screen for that many, but we had ways to get around that. Like I said, internet access, and then we did find there was some bias obviously from introduced by recruitment this way, and that's because the respondents obviously would have had some sort of connection to the advocacy or education groups that we recruited through because that's how they would have heard about it. 
And so the respondents were very engaged in advocacy, et cetera, we found out with the first round. When we added the M‑Turk recruitment, that did help alleviate that. We asked those individuals who took it through M‑Turk if they had any connections to disability organizations or worked with them, and only ‑‑ it was under 10% ‑‑ I think it was around 6% of the M‑Turk recruitment group had any connections to those organizations. So that did help us balance out the sample. 
>> JEAN HALL: I will quickly throw in there, Noelle, that Qualtrics is also accessible via smartphone. 
>> NOELLE KURTH: I had that in my notes and I have completely obviously not looked at my notes the entire time I've been talking. Yes, it was accessible for tablets and smartphones and things. Thanks, Jean. So the sample for the NSHD was aged 18 to 64. We didn't limit people over 64 from taking the survey, and so we do have a subset of data for those who are over 64, but they aren't included in our analyses. We wanted to make sure during our five‑year CHRIL study period no one got onto Medicare because of their age. And so we didn't want anyone turning 65 while they were taking the survey. But we didn't limit them, like I said, from taking the survey, they are included. We ‑‑ we had three screening questions. 
We screen to make sure people were living in the U.S., so we just asked them if they were living in the U.S. not a resident, but living in the U.S. at the time of the survey. They were at least 18 years of age, and that they had a disability. The question we used for screening for disability is the question Jean evenings many ‑‑ Jean mentioned earlier. The question is: Do you have a physical or mental condition, impairment, or disability that affects your daily activities or that requires you to use special equipment or devices such as a wheelchair, walker, TDD, or communication device. It's just a simple yes/no answer. Those that answered yes, continued onto take the full survey. Those that answered no were out. You may think this is a very lengthy and complicated question, and yes, I will admit it is. 
When we were working with HRMS to add it to their survey, we wanted to make sure we were not under representing any groups or introducing any bias, that we were capturing everyone we considered to have a disability, to include health conditions, et cetera. As I mentioned before, we did have ‑‑ because our ‑‑ the way that we did our sampling, the convenient sampling, it wasn't a nationally representative sample in terms of ‑‑ sorry, I lost my train of thought. Being representative of the national population of people with disabilities. And so we worked with the Urban Institute and their experts there in weighting and we were able to weight our responses based on the population estimates from the American Community Survey or the ACS. For those 18 to 64 who did have internet access, so we did have weighting in the data and if there ‑‑ if anyone wants more information about the wait ‑‑ weighting, there's a much longer description that we wrote up. 
I won't share that with you here and bore some of you. We had an underrepresentation of males and people of color. In the second administration, we really focused on that. But urban was able to weight to make up for that difference. And we had an overrepresentation of employed individuals, and we think that's because a lot of the CILs worked with us, so a lot of people who work at CILs took the survey, so they weren't employed. People at higher education levels, we think also for the same reason they were employed and working in the field and an over representation of people who individuals who identified as LGBTQ. 
In 2020, we did again have an underrepresentation of males. We've heard that happens in other populations as well. And due to the M‑Turk recruiting, we had an overrepresentation of those with mental illness in the survey. And we had an overrepresentation again of LGBTQ. I'm going to let Jean talk a little bit about our disability measurement, our multiple measures. 
>> JEAN HALL: Yes, we are probably a little over the top on this, but we really want to make sure we know who's answering the survey. So we have the screening item that Noelle mentioned, that we used to screen for people taking the survey, but also in the course of taking the survey, people who respond to it get asked about their disability in multiple ways. We measure all six of the American Community Survey questions which asked do you have a difficulty seeing, hearing, walking or climbing stairs, things like that, that is used in most federal surveys so we can compare our data to data from other federal surveys. Do you currently have a health condition that lasted a year or more or is expected to last for a year or more, this could be a physical health condition such as arthritis, asthma, cancer, dementia, diabetes, heart disease, hypertension or stroke, a behavioral health or mental health condition, or a developmental disability. It gets at longevity of a disability. 
A lot of published literature on the ACS‑6 disability question shows that a lot of people that answer yes to those have a temporary disability, so it skews the sample. We wanted to be able to be sure that the people responding to our survey had permanent disabilities. 99 point something, 68 answered yes to that question. We also added the Washington Group Short Set of disability questions, the WGSS. They're now being used in the national health interview survey in the United States, but they're also used internationally. They're probably the international standard for asking disability questions. Those are a little bit different because they ask how much difficulty people have with a particular task like seeing or hearing or ambulating. They can have no difficulty, some difficulty, a lot of difficulty or cannot do. 
So it kind of gets at severity of a person's disability. We have an open‑ended question about what is your disability, if you have one, what's the main one first. And I'll talk about that. So we feel like we know pretty much everything there is to know about people's disabilities when they respond to the survey and they really do have a disabling condition that would qualify for them for potentially a federal disability program. And we feel pretty strongly about this because we feel like the questions moved now in the federal surveys don't necessarily get us what we consider a true disability sample because people have temporary disabilities. Or 20% of the sample that answers yes to our screening questions do not answer yes to any of the ACS questions. 
They're missing 20% of the people in the sample that answer the questions in the United States. This is something we want to get at in our research and with the survey. If people are interested in that measurement question, please contact us because we are looking into that carefully. I will stop here. If people want to talk about that more, I'm happy to answer questions at the end. 
>> NOELLE KURTH: We've recently written a publication we'll hopefully get out there soon from the administration that looks at the open‑ended question, the longevity and then how people actually ‑‑ the one I forgot to put on this disability measurement slide as we asked in 2019 and 2020, we asked people to choose one category of how they would categorize their main disability. And so that in combination with these questions is very interesting. We also ask at what age onset they acquired their disability. 
>> NOELLE KURTH: So Jean mentioned the open‑ended question. What is your disability and/or chronic health condition. If you have more than one, please list your main one first. Jean and I have been using this question for over 20 years, this open‑ended question. While it is labor intensive to then look at those responses because we really do let people type what they want and a lot of people talk about the history of the injuries they've received. That in mind, it's very helpful to have all the information first because we can get from their perspective what their primary disability is. 
So that one they listed first is the one when we report primary, that's what we report. We also can get a prevalence because we code all the conditions listed by the respondent in that open‑ended question. So far, consistently in the National Survey on Health and Disability and other surveys Jean and I have done, it's been at least 50% of the respondents have more than one disability type that they list. I'm going to talk a little bit about we take that open‑ended disability and we categorize. Oops. Sorry. I'm sorry. I got distracted by the Q&A. We take that open‑ended question. We categorize. We have six categories: They're mental illness or psychiatric, physical, chronic illness or disease, neurological, sensory, or intellectual developmental disability. 
Those ‑‑ I'll show you some conditions that go with those, but the nice thing is that we can, like I said, code all that people have written in there. So we can see not just the primary disability, but the prevalence of each of those types by a sample in population. So I'm going to click on this link here. We have some information ‑‑ oh, gosh. I have to make my screen share that so you can see it. Just a second. Okay. Is everyone ‑‑ are you able to so a graphic on your screen?
>> Yes. 
>> NOELLE KURTH: I don't know why it is splitting and being so ‑‑ it doesn't look like it normally does. Oh, my gosh. Maybe our tableau expert changed something. I'll talk a little bit more about this data. It doesn't normally look like this. It should fit on one screen, but in the notes section you'll see examples how we categorize what conditions are included in those six categories of disabilities. I'm sorry, this is really throwing me off because this looks totally different than it normally does every time I've seen the Tableau before. You can see here that we have mental illness, physical chronic illness, sensory, neurological, and intellectual disability. The lists of what those types are, but you can see the differences between the two administrations of the survey. Let me go back. 
Okay. So that descriptive data I was just talking about, I'm going to take you ‑‑ I just showed you the disability type, but I'm going to take you through it right now because anyone can go online and look at these and we're adding more all the time. If you go to the website on the screen, this is our page about the survey, and a lot of the information that I just presented about the survey is here. A list of the publications. Then if you scroll to the bottom, you can access the National Survey on Health and Disability data summary frequencies. If you click there, you'll get to a page here that lists by domain all the data. These as you see are coming soon. We've had issues with Tableau that our amazing programmer has been working out for us, so those will be coming in the next few weeks, the rest of them. I'm going to click through a few so you can see what's there now. As you can see, it's broken out by the demographics, first of all. I'll just click on age group. Again, this might not ‑‑ this is how they ‑‑ why is it doing that?
Normally, all of this information is to the right. You can see everything on one page. I'm not quite sure why it's not cooperating with me today. Of course this has not happened in the last few weeks, just right when I'm presenting live. We have the age group based on the census group. You can see each year who those ‑‑ what the respondent's age group was. We have race and ethnicity, gender identity, the primary disability type, like we talked about. Geographic region, which is also broken out by census regions. There we go. This is what it normally looks like. I don't know why that's changed. 
Just so everyone knows, all the data presented here has been weighted for our ‑‑ the under and over representation that we have. So it is weighted to be nationally representative. We have a couple on employment. We have full time or part time, number of hours people work per week, how long they've been employed. I guess the household income one has not been finished yet, so that will be coming soon. Insurance type. I mentioned earlier that we ask people if they ‑‑ what types of insurance they had and these obviously don't add to a hundred ‑‑ 100%, people can have multiple types of insurance, but these are the categories that we asked on the survey, whether or not they had employer‑sponsored insurance, marketplace‑purchased insurance, Medicaid, Medicare, TRICARE, if they got services from Indian Health Services or if they had no insurance. 
We had a fairly significant amount that had no insurance, and we did ask why they had no insurance, so that's another variable in the dataset. I'm going to go back over here. We have health status as well which I'm going to highlight. We'll be adding some cross‑tabulation data by gender, disability type, and insurance type. So all of these variables on health status or Medicare, Medicaid, personal assistance services, they'll also be broken out by these other variables. This one you'll see for gender. So these are people's health status that they reported by being female, male, or other which includes people who are gender nonconforming, transgender, agender, nonbinary individuals and then their health status is broken out. You can hover over any of these and see what those figures are. 
Again, we'll be sharing more of that data underneath all of these categories that are coming. So you can check back to that ‑‑ this website and see what's there. And again those will be broken out by gender, primary disability type, and insurance type. So you can see how health status or use of PAS varies by those other demographic variables. That's what this link is, but I just already showed you that. I'm going to jump over quickly and just look at the ‑‑ the Q&A. Before I move on, we have some questions about recruitment. Someone asked how we recruited participants, did CHRIL contact individually or did we use another organization. Other organizations like I talked about earlier for recruitment, those other organizations helped us distribute either the link that went to the Qualtrics survey or said, hey, the survey is going to be coming out, and people could fill out a form to be directly e‑mailed from us the survey link. 
We didn't individually recruit participants, we used organizations. We did have several CILs across the country at the local level that assisted people with using their computers to take the survey or having a proxy sponsor getting the word out for us. That's as close as we came to the individual level. And then someone asked about the role of disability organizations and helping to get the word out and recruit participants. That's what we use ‑‑ I'm sorry. If you want to clarify what your question is a little bit. The disability organizations could choose ‑‑ I mean, I contacted them all individuals for recruitment, and they could choose ‑‑ I would give them various ideas on if they agreed to help us, how they could get the word out for us and they all had varying levels of degrees of how much involvement they wanted to do. All of them shared them on social media or put it on their ‑‑ in their newsletters. 
Many disability organizations have actually a research section on their website. They would feature the survey there for us. I hope that helps with that question a little bit. 
>> JEAN HALL: And sometimes we, for example, in the first round of a survey, when we didn't have much rural participation, we reached out to individual centers in some states with rural populations and asked them to help. Can you please get some rural respondents for us. We could do pretty targeted recruitment with some of the disability organizations. 
>> NOELLE KURTH: Yes. And like I said earlier, as surveys were coming in, we could check and see geographical areas or certain disability types. In the first year, I was not finding very many individuals who were deaf or hard of hearing were responding. So then I went back to those particular organizations and they did another push so that we could increase the response from that group. Feel free to type in more questions if you have questions or I'm not being clear. 
Now I'm going to shift gears and talk a little bit about what we've been calls the NSHD data analysis team. About a year ago, a little over a year ago last summer, we formed this group because I hope you can tell from at least the domains that we've shared and some of the data figures that I brought up, it's an incredibly rich dataset. It took people an average about 20 minutes to take it, so it was a little lengthy, but it wasn't too long. Not too many people complained about the length. There was a lot of skip patterns that helped people not have to take certain sections of the survey. While Jean and I have been doing lots of analysis with it, we just feel there's so much data that could be helpful to the field, and we wanted to get it pushed out there so it would be available to policymakers, people with disabilities, other researchers, the information from the survey. 
So that's why we formed this group. So right now, the group consists of staff from the CHRIL institutions, like Jean mentioned earlier ‑‑ Washington state, the Urban Institute and George Mason. We added researchers that weren't a part of the CHRIL through networking, presenting at conferences, people have become interested in the data and wanted to do their own analysis. So we have fellow researchers from the University of North Carolina, NYU's public health ‑‑ population health department, the University of Montana, Oregon State University, and West Virginia University. It's multi‑disciplinary. So everyone is studying or researching disability or have disabilities themselves. 
They also have very specific areas of expertise, like personal attendant services or our colleague from West Virginia University that recently joined us is interested in access to service animals and how that affects access to care. Everyone has very diverse backgrounds and areas of expertise. It's been helpful to have everyone have the same dataset. We meet every three to four weeks to discuss analyses that's been done. We'll bring an analysis and someone will say, I don't understand, could someone explain why this is happening, I don't understand what we're seeing. Having the perspectives has been really helpful to discuss and collaborate and also to have publications across different universities and disciplines. We'll be able to keep doing this with the current data through September of next year. So that was one of the big goals of this webinar is we're trying to find more people to ‑‑ I'm sorry. To join our team.
And to analyze and look at the various aspects of the NSHD. So right now, this team has been doing these analyses, these are just some examples of what the group has been doing. We've published ‑‑ there's been five published articles, as you know with peer‑reviewed journals, that takes a while. Having data only a couple years, but still having five articles in the field is pretty good. We're looking more to get the information out there. Like Jean mentioned earlier about disability management, that's something we've been looking at. Our colleagues at WSU and University of Montana are going to be looking at differences in personal assistant services over time. Basically like Montana wants to look at the needs and the use among rural versus urban people with disabilities. And the personal assistant services that have been on the survey, they've quite extensive. 
In 2020, the second administration, we added questions about the number of hours and the number of days per week that people are getting services and we also ask about if they are not receiving personal assistant services, what they need. We continue to look at intersectionality, so experiences of LGBTQ individuals with ‑‑ during interactions with their health care providers, because we heard at interviews and on the 2018 survey that the disparities for people who not just have disabilities, but then also ‑‑ also experience disparities because of their LGBTQ status, those two things compound each other. So we've been interested in looking at why that might be and how interactions with health care providers could change that. The impact of inadequate provider networks on individuals' employment and their unmet health care needs. Insurance status and the related unmet need compared to those without disability. 
We can compare with HRMS, something that Urban Institute is interested in looking at. Underinsurance and insurance stability over time. I talked earlier about how we have a dataset that includes people that we know took the survey in 2018 and took it in 2020. It's not a large sample, but it's 295 people. One of our colleagues at WSU is looking at that stability and insurance over time and how that impacts people. Health care utilization and access among transgender and nonbinary individuals and comparisons of unmet need between people who have public, Medicare and Medicaid, versus private insurance through an employer or through the marketplace. And how experiences might be for those with an early onset versus a later onset of disability. 
Again, there's far more that could be looked at with this dataset. That's why we're encouraging others to reach out. Here's a list of the publications that have come out of analyses of the NSHD data. Jean and I looked at people with intellectual disabilities and/or autism spectrum disorder and compared them with people with other disabilities. Catherine Ipsen and Meredith Repke looked at social connectedness and perceived isolation among rural and urban adults with disabilities in the survey data. We had a large representation of people who are LGBTQ and an overlap of people identifying as LGBTQ and also had autism. 
So a group of us have been looking at that, and we've published and we'll have future publications on that as well. The fourth article here is it should be out any day, there's no link there because it has a DOI number, but when you click on it, it says it's not valid because they haven't put it out there yet. It's ‑‑ we ‑‑ there's a question on both in the interviews and on the surveys that we ask people at the end of the survey, it's just open ended and it's there anything you would like to tell policymakers about health care needs for people with disabilities. And so one of our doctoral students, Sarah, went through and coded all of those and really did a great job of synthesizing what those individual perspectives are from people with lots of quotes. 
Again, the inter ‑‑ paper that I mentioned earlier. We've also prisoned over the last few years at NCIL, APRIL, the APHA, academic health, AUCD, various places. We're trying to get the information out there, the findings from the survey, but again we need more minds, more eyes on the data. So the future of the survey. Unfortunately we don't have continued funding right at the moment to continue the survey, but because it's been so valuable, we really hope ‑‑ we're searching. We'd like ‑‑ tentatively pending some funding, we're hoping the third administration will be early in 2021 and that that will be have a COVID focus. I know everything is probably getting COVID survey fatigue, but the nice thing about if we were able to do this again is that the survey ‑‑ this last administration ended in January of 2020, and so it was right before COVID really started affecting people's lives. 
And so we have baseline measures. If we can reach out to the people who took it before again, I think we'll have nice comparisons pre and post‑COVID that won't be available in other surveys. We want to get the data into more people's hands. We really think this team we've formed is great because we've increased collaboration among researchers from across the country who all have varied interest, but we all have disability research in common. Being able to share those ideas with each other and the data has been very beneficial. I'm speaking for everyone on the team, but I think it's been very good. The limited data is deidentified. It does have individual identifiers so you could do longitudinal analysis, like I mentioned earlier. Those are nonidentifying identifiers. 
And like I mentioned earlier, too, there's a longitudinal subset that completed the survey both times of 295 people. If you wanted to look at anything between 2018 and 2020, it's available. All the members of the data analysis team currently have the limited data set and that's how they're doing analysis. There's no charge. We ask you complete a brief data use agreement. It's very basic. It basically lays out what we're going to give you and asks for your name and what you are thinking about using the dataset for. We ask that because another part of the data analysis team is being able to see what everyone is looking at so that there's not multiple people looking at the same thing. It's been a very good collaboration. If two researchers are interested in the same thing, I've been able to work together to publish or to do analyses with each other. We also include with the raw deidentified data a code book survey obviously and we have write‑ups of all the methodologies that I have spoken about today. Recruitment weighting, sampling, all the things we have set up. 
As we publish, everyone's coming from the same place even though you may not have been involved in the CHRIL the whole time. There's our ‑‑ oh, gosh, I'm missing a four from my phone number. Maybe you can get that posted online. Reach out to me. Complete the data use agreement. I will ask what types of files are best for you. What data analysis software you use so we can get you the files and the data to you in the format that you need. Participate as you're available in the meetings. We add you to the list of our 45‑minute to one‑hour meetings that happen every few weeks. Here's the website to explore the descriptive data and the hopes in that is that you'll look at the descriptive data and maybe look at things you'd like to do or analyses that are more complicated and you can get the data yourself and join us. 
Okay. That's the end of what I have to say. We kind of are opening it up now for questions. I think there are some questions in the Q&A. If you have any questions about anything we've presented and specifically if you can think of ways maybe that you would want to use the data, you could ask us certain ‑‑ oh, I have this question, would your survey answer that. Feel free to answer any of those. I also think that graduate students, if they needed data for a dissertation, this is a perfect place to get it. If anyone knows how to continue administration, we're open to that as well. Collaborating. Sorry, Jean. 
>> JEAN HALL: I was going to say there was a question out there how can we use this data to expand Medicaid in our states. 
>> NOELLE KURTH: Oh. 
>> JEAN HALL: I would say first of all we did publish two articles out there using the HRMS. Kansas is one of 12 states that haven't expanded yet. I send it every year, if you expanded Medicaid, more people with disabilities would be able to work. I hope that works in other states better than Kansas. Those two articles in the earlier slides, I would encourage you to look at them. You can see the data that we used. If you think after looking online at the data we have posted there, there's another way to get at that argument, we would love to work with you on it. I don't know who asked that question. 
>> NOELLE KURTH: I'm going to go ahead ‑‑ these are here. But I'm going to paste these three in case it helps anyone in the chat window. Here's the links to those papers that we wrote on health reform that Jean was talking about ‑‑ not health reform, Medicaid expansion, sorry. 
>> JEAN HALL: If you live at a state where you don't have to go through an onerous disability process, there's a good chance you can work and will earn more. We would love to talk to anyone that's interested in that, because we do think that's one of the things that we can show with our data. 
>> NOELLE KURTH: And there's ‑‑ yeah, there is a ‑‑ I didn't mention this, but there are variables in the dataset that tell you whether or not the individual is from, for example, an expansion state, whether or not they were from a state who has Medicaid managed care. Some of those type of policy variables are also included in the dataset. Thank you, Jay, for our comment. 
>> JEAN HALL: Yeah, we really hope so, too. 
>> NOELLE KURTH: Let me go back to our list of questions, sorry. Do we have anyone on the call that's a ‑‑ looking to do a dissertation or wants access to any data for that?
That's ‑‑ could be excellent or do you have any pressing research questions that you wonder if this dataset could answer, feel free to ask us. Or if you want to call or e‑mail Jean and I after the fact to discuss, that's understandable as well. 
>> JEAN HALL: Just personally looking at it, we've looked at intersection groups, I think there's a lot more that could be done there. 
>> NOELLE KURTH: I'd agree. We do have another ‑‑ oh, wait, never mind. That's one I already answered. I'm getting confused. 
>> JEAN HALL: There's one. Once you begin collecting data in the 2021 administration of the NSHD how long will it take for the data to be finalized, added, and used with the other datasets?

>> NOELLE KURTH: We'd leave the survey open for five months. That would put us at the end of the spring, like May or June, when the data collection is done. It doesn't take too long for it to be cleaned, but I will say that we clean it up and then merge together to see how the people that have taken it pre and post. I would say end of the summer of next year for sure the dataset could be ready. I hope that answers your question. I'd hope we could do it sooner, but I don't want to make any progresses. Someone asked: When do you plan to send out the next survey wave?
We don't have funding, but we're looking into the 2021 administration we're trying to get funding for and looking at alternate ways to get it out there, to get it funded, sorry. Our optimistic plan would be January of 2021 if we can get everything in place. If our PI Jay Kennedy from Washington State University has any other way to answer that question, feel free to type it in, Jay. If you were interested in the 2021 administration, using that, you might want to get the data now so that you could start doing analyses and then help us weigh in on what should be included in ‑‑ what should be concluded or eliminated for the 2021 administration because that's the stage we're at now. Jay wants to add that we welcome any funding suggestions. 
So this project was funded by NIDLER before. We're open to anything. Even ‑‑ we have all this ‑‑ not just data, but all these contacts and all this legwork done for the survey. If anyone wants to, you know, pay us to be able to do it again for your project that already exists, that's another thing we're more than willing to talk through. There was something in the chat, but I thought I lost it. It was Sharon telling us to put questions in the Q&A, okay. Thanks to everyone for joining us today. Like I said before, if you think about this and you have questions or if the data is something that you'd like to explore getting or ask questions before you obtain it, feel free to contact Jean or I at any time. I'm going to try to go back. There we go. Go ahead. 
>> MEGAN GILLESPIE: So Jean and Noelle, would you guy say that you've answered the question or would you like to wrap this up?

>> JEAN HALL: I don't see any more questions out there, so I don't think there's anything else to answer at this point. 
>> MEGAN GILLESPIE: Okay. Great, then!
It looks like we don't have any other questions at this time, so I think we can begin wrapping this up. As I mentioned before, directly following the webinar, you will see an evaluation survey come up on the screen. We do take your feedback seriously in order to improve the programs. I think that's it, guys. A big thanks to all of you for joining us today and for attending this webinar. Bye, everybody. It was good having you here.