A Conversation about the Employment Concerns of American with Multiple Sclerosis Seeking Participants to Complete a National Survey

Join Delaney Wickert, Research Assistant and Dr. Phillip Rumrill, Director of Research at the University of Kentucky Human Development Institute, for a Conversation about the Employment Concerns of Americans with Multiple Sclerosis: Seeking Participants to Complete a National Survey. You can complete the survey by calling 859-257-3360 or visiting linktr.ee/nmsshdi. Contact prumrill@kent.edu if you have any questions.


Hello, everyone, my name is Delaney Wickert. I am here with Dr. Phil Rumrill and today we’re going to be having a conversation about the employment concerns of Americans with Multiple Sclerosis. As we are seeking participants to complete our national survey. Dr. Rumrill, if you’d like to introduce yourself and tell us a little bit about you, that would be great.

Yeah, good. Morning, afternoon or evening, whatever the case might be. And Delaney, thank you for joining me on this program. I’m Phil Rumrill. I’m a professor of counselor education, and director of research in the Human Development Institute at the University of Kentucky. I’m a Certified Rehabilitation Counselor by training. And for most of my career, I’ve worked training rehabilitation counselors to provide vocational and other counseling services to individuals with disabilities. My own research interests focus on the education and employment of people with disabilities. And this particular project we’re talking about today, a grant funded by the National Multiple Sclerosis Society is an outgrowth of many years of, of work and collaborative projects with the MS Society and working with people with MS in a variety of contexts over the years.

Thank you, Dr. Rumrill, it’s great to have you here with us today. Jumping right into our topic, would you be able to tell us a little more about the motive behind this survey in collaboration with the National Multiple Sclerosis Society?

Yes, well, for like I said, 30 years or so, we’ve had a fairly uninterrupted series of research projects related to the employment of people with multiple sclerosis or Ms. And we’ve learned a lot about the factors that are associated with whether people with MS stay in the workforce or disengage from work following their diagnosis. We know that the vast majority of people with MS about 98% of all Americans with MS have employment histories, that means they’ve worked at some point in the past, between 80 to 85% of Americans with Ms. Depending on the study, were still working at the time they were diagnosed with this disease. And yet as time in the illness progress, we find that there’s really a what we could only refer to as a mass exodus from the labor force, to the extent that only about 40% of Americans with MS are currently employed for pay. And that 40% rate of labor force participation holds even in international studies that we and others have been involved with. So, we’ve learned a lot also about the employment concerns and issues facing folks with Ms. Primarily how to accommodate their disabilities, their newfound limitations, while continuing their careers, to access, health insurance and health care, even while they cope with an intrusive disease like Ms. And we’ve also begun to understand that the employment experiences and concerns of people with MS vary somewhat based on one’s racial or ethnic status. And in this particular investigation, Delaney, what we’re trying to do is to examine the employment concerns and experiences during the COVID 19 pandemic, of people with MS in three groups, white or Caucasian. African American, or Black and Hispanic, Latino, or Latin X. Those are the three groups and there have been increasing numbers of African Americans and Hispanic and Latin X people with MS who, who have been diagnosed with MS. It was it was always thought of as primarily a disease of among people of European extraction of white lineage. And that’s still the case today but growing numbers of people of color are being diagnosed with MS particularly African Americans and Hispanic and Latin X people. And so, we wanted to dig in here into this study and find out what the how the concerns and experience says of people who identify as white are different from those of people who identify as African American/Black or Hispanic/Latinx. I will note that we do not include people of Asian extraction in this particular study, because MS is very rarely observed in people of Asian extraction, there’s a certainly a genetic component to the susceptibility for Ms. And MS does not occur very often among people of Asian lineage. So, we wanted to look at these two minoritized racial and ethnic groups who, whose incidence of MS has been increasing. And really just compare and contrast and find out how concerns reported employment concerns reported by people with MS vary as a function of race, and ethnicity.

Thank you so much. So, you talk about the abundance of research and background knowledge that goes into creating a survey like this with the ultimate goal of enhancing existing services or providing new services based on these survey responses. So, would you give us an idea of the potential services or impact that will result from these survey responses?

Yes, well, there’s a big emphasis in rehabilitation counseling and, and most other human services and health care fields, of course, in what we call evidence based practices. So, we want to make sure that the things we’re doing in the field to support people regardless of their needs, that those services and supports we’re delivering the interventions where we’re implementing with them, are known to be effective. And in order for them to be effective, we know they have to be based on the very best and most current available evidence, right. So we, in this particular study, what we’re wanting to do is to learn more from the perspectives and voices of people with MS across these racial and ethnic groups, of course, and then determining how services such as those in the state federal vocational rehabilitation program, such as those delivered by staff, members of the National Multiple Sclerosis Society, employment related consultation and information provided by healthcare professionals, including nurses, neurologists, psychologists, mental health counselors, etc., that those services all have the benefit of the perspectives of people with MS during the COVID 19 pandemic. We also want to determine what sorts of advocacy initiatives by might be required to make sure that federal disability policy, specifically legislation, such as the Family and Medical Leave Act, the Affordable Care Act, the Social Security Act, which includes the Social Security Disability Insurance Program, and the Supplemental Security Income program, which are programs to support people who have disabilities, and therefore apply to people with MS. And last, but certainly not least, the Americans with Disabilities Act, how these laws are being implemented, and how they, we can make sure that these laws that were developed to support and protect people with disabilities are actually having their intended purposes in the main of our communities. So, what we’re trying to do here is also to inform information to the National MS Society, to policymakers to legislators, and any other interested parties. And so, part of this survey, as you know, from being familiar with the instrument itself, Delaney focuses on how these policies are being articulated, and whether they benefit people with MS to the degree that those laws intended. And of course, we have the ultimate unique period of history before us right now, as we are still in the middle of the COVID 19 pandemic. And so, this isn’t really a survey. It’s not a COVID survey, necessarily, but because it’s being administered during COVID. We have to ask questions about people’s COVID exposure range if you’re immune compromised by MS, you’re at heightened risk for a more severe case of COVID. And for COVID, long COVID and long hauler syndrome. So, people with MS and people with other disabilities are especially vulnerable to bad outcomes of COVID. And we wanted to ask people questions about how their employment may or may not have been affected during the pandemic, the pandemic affected everyone’s employment situation so dramatically. And we know that, but we wanted to know the unique impact that COVID 19 may have had on the multiple sclerosis community. That’s a mouthful, but that’s what we’re trying to accomplish.

That’s great. It sounds like there are many different ways that this survey can be used to enhance the lives of individuals living with MS. Dr. Rumrill. You mentioned the abundance of research that goes into creating something like this. And since we know that this is a two phase examination, with the survey being the second phase, would you tell us some more about each part separately, and some more about the first phase of this examination?

Yes, the first phase was an investigation of the workplace discrimination experiences of people with MS from these three racial and ethnic groups. Under the title one of the Americans with Disabilities Act, Title, one of the Americans with Disabilities Act, or ADA is the employment section. And the aid and Title One of the ADEA provides that people with disabilities and MS is a presumptive disability under the ADEA. Meaning, if you have MS, you are a person with a disability under the law. And if you’re a person with a disability under the law, you cannot be discriminated against on the basis of your disability. And Title One of the ADEA has 41 specific discriminatory actions that it prohibits employers from engaging in with workers who have disabilities. And these range from harassment and intimidation on the job to unlawful termination, to decisions about hiring that are based on the existence or consequence of disability to access to including access to benefits and training related to one’s employment, advancement and promotion opportunities, discipline, layoff, terms and conditions of employment, how job information is posted the provision of reasonable accommodations. So, and what’s prohibited in the provision of accommodations as employers cannot deny a worker with a disability a reasonable accommodation that will help them to do their jobs. So, we have 41 specific behaviors that are prohibited. And the ADEA provides a list of do’s and don’ts things employers always have to do, things they never should do to support people with disabilities and make sure that our workforces are fully inclusive. So, we have access to the ADEA title one database from the United States Equal Employment Opportunity Commission. And we in the first phase, looked at the employment discrimination experiences, what types of discrimination, people with MS from these three racial ethnic groups alleged what the EEOC Equal Employment Opportunity Commission did to investigate and then adjudicate those complaints, the outcomes or resolutions of the complaints that people with MS make. So, we look at the types of discrimination that is alleged process variables within the EEOC, investigatory process, and then whether the complaint resulted in a decision that is as to whether discrimination did or did not occur, that favored the charging party, that’s the person with MS or the employer. And that’s known as the respondent. So, the EEOC then makes a determination as to whether discrimination likely occurred, and then can investigate further can get more involved at cetera centers that are so we have access to all the bad information in the ADA data, but the first phase was to look at those discrimination experiences. The second phase, which was informed by findings from the first phase is the National Survey of the employment concerns of people with MS from the three racial and ethnic groups that are under study for phase one looking at the phenomenon of workplace discrimination. We know from other research that this is a big problem facing the MS community. And then phase two is to develop the survey where we ask people specific questions about their experiences, not just their experience of discrimination, but their experiences of employment in general. And so that is the culminating phase of this study. That is phase two. So, a database study of discrimination and phase one, and an original data collection effort to identify employment concerns in phase two. Thank you, Dr. Rumrill. So, with the background research that has gone into the curation of this survey, we know that MS is more common in women. Since gender can also play a role in workplace experiences. do you predict this to impact the survey results? And if so, how?

Oh, no doubt. And of course, we don’t know till we get the results. But we know from other studies over the years, that the employment experiences of people with MS are significantly affected by gender. We know that. Men, for example, are less likely to request workplace accommodations from their employers, they are women, we know that women are more likely to be unemployed at any given time than our men with Ms. So, women are more likely to disengage from the workforce. sooner, sooner after diagnosis than our men, we know that men will tend to file discrimination complaints related to unlawful termination to a higher degree than women do. And women are more likely to file allegations related to harassment and intimidation. We also see that women with MS also report what they call a double discrimination. So, if someone’s treating you badly, in employment, you’re not always sure which protected characteristic that is your gender, or your MS. That is the object or object of that discrimination. So if somebody is treating you badly in the workplace, you don’t always stopped to think about whether it’s because of your gender, or whether it’s because of your disability. But there’s certainly an interactive effect of having a minoritized gender status, and a minoritized disability status. And we see that in MS as well. We see gender differences in people’s willingness to ask for help in their responses to issues with coworkers. You know, and employers. Certainly, there are gender differences in the types of occupations that men and women perform that’s changing a little bit, you know, in the last 10 years or so, and hopefully, we’ll continue to see those changes, but there still are occupations that are dominated primarily by men, and those are dominated by women. So yes, of course, gender is really the ultimate differentiator, right, of any process or outcome in our society. And so, we always look at gender differences and their possible interaction effects. As we look at what’s happening with folks with Ms. And here, we have, we have sometimes three characteristics that we need to be considerate of and thinking about employment concerns. We look at gender, we look at race and ethnicity, and we look at people’s MS status. Well, in our study, everybody has MS. But we need to look at the interactive effects of race, culture and gender. And there are many, of course, and we need to be sensitive to that as well. So, we can look at subgroups in this study of women who are African American, or men who are Caucasian, or white, we can look at women of Hispanic, who are Hispanic or Latina. And we can compare men and women have different racial and ethnic groups. So, we can cut these subgroups for analysis in any number of ways and so we hope to gain insight into the issue of gender but about three quarters of all people with MS worldwide are women. So, gender issues are always tied up in anything having to do with Ms. I appreciate you bringing that point here to our discussion, Delaney.

Thank you Dr. Rumrill that information is very fascinating. I know. I’d love to hear more about that. And it sounds like the survey results will allow us to learn some more about that. So finally, will you tell us about the different ways that participants can complete the survey?

Yes, we will provide some links here that we’ll talk about, you have a telephone number, if you’d like to call us, and we would be happy to administer the telephone. administer the survey over the telephone, we will be also glad to send a paper and pencil version of the instrument in either English or Spanish. Depending on your preference. We can mail that along with instructions and a self-addressed stamped envelope. If you call us we can have people available in either English or Spanish to complete it as well. There’s also the Online link that you see there. And we very much would appreciate any and all perspectives, but we don’t limit this to people who have access to the internet. There are two other options for completing the survey. And we’d be happy to provide any assistance to make sure that the instrument and the entire survey is as is as accessible as possible. To everyone who might be dealing with MS, and who qualifies for this study on the basis of their racial or ethnic status.

Awesome, thank you that information is all listed on the screen right now. Dr. Rumrill, is there anything you would like to add to tell viewers about the survey or their participation in the survey?

Well, we just appreciate everyone’s willingness to help us out in completing the survey. There’s a tremendous self-help. And community oriented movement within the population of people with MS. people with MS help one another. And we’ve always enjoyed working with the National MS Society because of that. And so, if you’d like an opportunity to help others, by providing information about your own experiences, we would be very grateful to know what your employment concerns have been. We can also make available survey results to any interested parties. We will be publishing these results in the aggregate form that is not with your name or any identifying information associated with them. But we will make survey results available to all survey respondents and to the National MS Society as well. So, we really appreciate people’s time and willingness to participate in this study. We also want to assure you that this study is fully endorsed and approved by the University of Kentucky’s Institutional Review Board. So, all proper human subject protections that guard your privacy, not only of the information you share with us, but in the way we disseminate that information. We have assurances from the University of Kentucky and can share those with you as well. That’s available in the cover letter that Delaney will post as well, all the preliminary and introductory materials, but this is fully as project is funded by the National MS Society and endorsed by the University of Kentucky’s human subjects review policies. It’s always important to let folks know about that. So, your privacy is protected. And the information you provide is safe with us and we appreciate your willingness to entrust us with that. In addition,

thank you so much Dr. Rumrill for providing us with some great information today. It’s always great to talk to you.

Always a pleasure, Delaney. Thank you. Thank you, everyone.

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