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Perspectives on Employment from Individuals with Multiple Sclerosis by Matthew Bogenschutz, Ph.D.

Perspectives on Employment from Individuals with Multiple Sclerosis by Matthew Bogenschutz, Ph.D.


>>DR. MATTHEW BOGENSCHUTZ: Hi everyone and
thank you very much for joining us for this webcast entitled the “Perspectives
on Employment for Individuals with Multiple Sclerosis”.
This webcast is sponsored by the RRTC on the Rehabilitation Research and Training Center
on Employment of People with Physical Disabilities and I’ll be taking you through this today
I’m Matthew Bogenschutz I’m from the CVU School
of Social work and an affiliate with the RRTC. I want to briefly begin by sharing some basic
facts about MS in the United States and employment of people with MS in the United
States. Programs vary but the best ones we can find
say there are about 450,000 people living with
MS in the United States the number has been steadily rising over the last 50 years or
so. So we’re seeing more and more people being diagnosed
with MS and living with MS and that makes employment for people with MS even more
important. About three-quarters of the people who have
MS are female which is quite a differential much more than we would see for most conditions.
We also know that about 59% of those people who are living with MS are unemployed very
large number and very interestingly it’s stable whether looking globally or in the U.S. so
59% of individuals with MS do not currently have
work. That’s in sharp contrast to how people with
MS see themselves. The vast majority of people with MS think they can be working,
think they have the skills to work and have a desire
to work. So we need to do something to get those numbers
better and we’re hoping this study can shed some light on how people think about
improving that. We also find that the majority of people with
MS when they ask for workplace accommodations are dissatisfied with how their
employers respond to their requests. So again, this goes kind of hand in hand with
that unemployment statistic. Many people get frustrated with how their employers respond
to their requests for accommodations and leave the workforce as a result.
We can also get clues from people with MS from the RSA 911 database that tracks
outcomes of people on a year-by-year basis. We know that of the 6865 cases that were
reported in the RSA 911 database in the period 2011 to 2013 that about 29% of them were
closed in Status 26 which means that there was a successful job outcome.
That means that 7 out of 10 leave the VR system without obtaining employment
successfully. Furthermore, we know that the average weekly
earnings for people who were closed out in Status 26 with a successful outcome, the average
weekly earnings is only about $440. So that’s not great money to live on. And
that is borne out in some of the comments that
we received from some of our participants in this study that if they do find employment
oftentimes it’s not enough to live on. So this study I’ll share today is part of
a larger study about what people with disabilities widely speaking find about their employment
experiences the study is called: Identifying What People with Physical Disabilities Want
and Need to Know About Employment. It’s a national focus group study. It’s been
ongoing for over a year now. We have different subgroups. So previously we did
a webcast about spinal cord injury. Today you’ll
hear about multiple sclerosis. Forthcoming you’ll hear about cerebral palsy. We had a
group of people with other disabilities, non-specific.
And we also have a group of transition-age youth.
So all together these compose the first part of our large three-part study.
And we definitely want to acknowledge our partners who have helped with recruitment
for the study those include the World Institute
on Disability, the National Council on Independent Living, united Spinal Cord Injury Association,
and the National Multiple Sclerosis Society. Which was particularly helpful as you might
imagine with recruitment for this particular study.
Okay. Hopefully you can see this okay. I know the text is very, very small. But we
wanted to share with you a little bit of information about our participants with MS. So these
are the participants specific to this portion of the study I’ll be sharing with you today.
In the last two columns, that’s our unemployed group.
The two columns in the middle are the employed group. And the columns on the left-hand
side are our demographic characters. So you can see here that in terms of age,
we’re pretty widely spread, which is good news.
Because we know that people with MS come from all different age ranges. It’s really
consistent with national trends, demographically. In the next category you can see we’re also
pretty consistent with national trends, in the
sex category we have far more women than men that’s consistent with the fact that
three-quarters of people with MS are women. In terms of race, the sample was fairly white.
That’s very typical in this kind of research. But we were happy to see that at least among
the unemployed group, we had good representation among African-Americans, as
well. People in this group were relatively more
educated than we would expect than the general — in the general population so that’s one
potential limitation to the study the fact that we were
overrepresented on folks who have advanced degrees.
Okay. I think that this next category is very important. The year since MS onset. This
is one spot we’re going to see differences between the employed group and unemployed
group. The unemployed group has had their MS active in their lives for relatively longer
than the employed group.
So that would suggest that as MS tends to have greater effects over time, the people
also tend to become unemployed over time.
So that’s a fairly important thing to note. And the participants by and large, those who
are working, make pretty good money from work. We have very good representation there,
as you see, in the 50 to 75,000 category. So that’s in ways good news. That people can
continue to productively work. Make decent money. Even after the onset of MS.
So this was a focus group study which means we did group interviews with people with MS.
We divided groups into some groups of people who were employed at the time of the study
and some groups that were people who were unemployed at the time of the study.
The reason for this is we think they have different experiences. So we ask them different
questions, which I’ll share with you in just a moment.
So as with the focus group there were some very strict guidelines we had to follow. We
were very, very careful about confidentiality. We at the onset of each focus group made a
big point of making sure that the participants understood that whatever was said in the focus
group stayed in the focus group. And it was not to be taken outside.
This is a national study. So oftentimes we have people from all different regions of
the United States on the same call.
So the chances of people knowing each other were fairly slim. Nevertheless, we wanted
to do everything we could to make sure that people realized the importance of confidentiality.
They were conducted telephonically through a toll free access line. This is sometimes
controversial when I presented this research in the past. The best practice nowadays is
to do it via Skype or Google Hangouts or some other
video platform. Because the thinking is that will yield richer data.
However, we were concerned that that would exclude a lot of folks. We had some people
from very, very rural areas, where Internet access may be difficult. We heard from some
people that they had to travel 30 minutes to a library in order to access the Internet.
So in order to keep it as accessible as possible, we wanted to open it up via telephone
instead of making people rely on the Internet. Okay. I should also note that the same person
did all of the interviews for the study. Which was really good for consistency.
As I mentioned before, we had different questions for people who are employed versus
people who are unemployed. So I’ll start with the unemployed group because
that represents more than half of our sample.
So we had 12 core questions. I’m not going to go through all of them because that would
be relatively boring. I’ll just kind of hit the high points.
So we asked people what their ideal job would be. And this is a very telling question, that
most people were fairly realistic in their abilities. And sometimes said that their ideal
job before the onset of their MS would be different
than their ideal job now. We talked about what supports and services
that people, agencies, et cetera, were useful to them as they looked for a job.
We asked about job services for people who are particularly helpful in finding a job.
We talked about people who weren’t particularly helpful in ways in which they could be
more helpful. And we talked about what information a person
would really need in order to successful find a job.
Oftentimes people were lacking information. And that was a huge hindrance for them
finding work. So that’s for the unemployed folks.
For people who are employed, we had 13 core questions. Many of them the same as for
people who are unemployed. But we also focused in on some more specific
things about how they found employment. So we talked about what a person does and
what their typical day looks like. We talked about the steps that the person took to find
their job and was it successful in helping them
navigate through the workplace and the interview process.
We talked about key factors of getting into a job.
For example, if a person could really prove that they had the skills needed to do the
job, then they oftentimes got the job.
How the disability affected them in finding the job. And how a person overcame the
challenges of their MS to navigate through the workplace.
So we really focused on what worked for the person. For the people who are employed.
As kind of a how-to in terms of how to navigate through the workplace for other people to
learn from. So getting into our analysis procedure. In
qualitative research your analysis procedure is
very, very important. So I want to share a little bit of what we did in order to arrive
at our results.
So we did all of our analysis in NVivo 10 which is a software program specifically designed
for qualitative analysis. We used what’s called a conventional qualitative
content analysis approach. If you can say that three times fast, you’re doing better
than I am. So the content analysis approach is an offshoot
of grounded theory which you may have heard of. It allows the researcher to remain
very open to the text and multiple interpretations to the text.
So it’s very much reliant on data to emerge directly from the text. In this case the text
was transcriptions of the focus groups. So it’s considered to be fairly user friendly.
Although it’s still a very involved process. So we took basically three stages. In the
first stage, we used open coding. We remained completely open to the data. And coded anything
that emerged that seemed to be of interest. So this results within a ton of
codes and a ton of room for analysis. In the second round, we tried to organize
those codes into a hierarchy. So in the next slide you’ll see kind of our overall hierarchy
of themes. And this is what emerged from the data as
we analyzed. So you have very high themes and then subservient themes underneath them.
And then the final round, the third round, we really tried to define and refine those
themes a little bit. Not a little bit. A lot bit.
And so we really tried to bring that hierarchy to fruition. So it could be really real.
And so each one of these three phases of analysis was really important. And important
for different reasons. So we really could not do the analysis without
all three phases, which makes for a very arduous process. But also a very real and
grounded process. All right.
So getting on to the findings. You can see here, this is the overall schematic of our
findings. And we’ll talk about these things individually, as well.
So we found that our employment of people with MS really came down to how they face
future uncertainty, how they experience a feeling of loss, and how they navigated the
workplace. So these are really complicated. And I think
mostly it will make more sense as we go through individually. But you’ll notice here
that feeling a sense of loss and facing uncertainty those are both very emotive things and that’s
one of the hallmarks I wanted to point out. Compared to other groups for example the SCI
group, we found that dealing with MS tends to
be a very emotional process and it takes a large emotional toll. So you can see here
that two of our categories are really kind of focused
on that part of MS. Okay. In terms of findings for facing future
uncertainty. Whether they are currently working or not, we found that most of the
participants in our study, they knew that their
disease was going to progress over time. And they knew that their disability was going
to become more acute over time.
So this created a lot of uncertainty. It led people to turn down promotions. It led
people to withdraw from the workplace. It was really a big thing. And it’s part of
the emotional toll that we’re talking about. So people made their career decisions not
only based on their current standing but based on what they thought their future ability
might be. And this was particularly acute for people
who were facing cognitive challenges. As we know, a large portion of people with
MS do face cognitive challenges as part of their
disability, and we found that those cognitive challenges were particularly salient as people
looked at decisions towards their future. Okay. Being that this is qualitative research,
we think that the participants’ words speak volumes so I have extracted three quotes here
to look at some ideas about facing future uncertainty and I’ll read them to you.
There were dream jobs within my company but they required 25% travel and being out of
town for extended periods of time and I didn’t think I would be able to handle something
like that so knowing that I had MS just prevented
me from pursuing my true passion. This quote really illustrates the way in which
people look towards the future in making their job decisions. They would turn down
promotional opportunities. They would turn down an opportunity to follow their passion.
Because they knew that in five years from now,
they would be unlikely to do the travel. At the bottom here, I have more issues in
how I think and process at times. not all the
time. Today I’m actually having a stellar day but the last job I had I would just screw
up so much stuff and people would be looking at
me so now I’m looking at me. So we can see here the person is questioning
their own ability to do the job. They are realizing that they are having some struggles.
They are making more and more mistakes as the cognitive issues become more salient and
they just realize they can’t do the work anymore. On the side, I feel unfortunately like I have
a career shelf life like I can only go so long
without being able to have to be home permanently. That’s always kind of in the back of my
mind. Again facing future uncertainty not knowing
what the future holds in terms of the individual’s abilities and that weighs very
heavily on how they think about their career in the
long term. Okay. Somewhat relatedly, many participants
felt a sense of loss. If you go back to the chart, this was the
middle section of our findings chart. So a lot of workers commented they felt a
sense of loss for who they used to be. And they knew they could not be that worker again.
And for a lot of people, they had their competency constantly questioned because their
co-workers also noticed the slide after MS became more acute.
So this is a big issue. It made a lot of people question their own self efficacy. It made
people withdraw to some extent. And it made some people actually quit their
job because they didn’t feel like they were the
worker they used to be. And they didn’t feel like it was worthwhile to go on.
A lot of them even considered jobs far outside their careers. We had one individual, for
example, who was a health care management professional. And she started looking for
jobs as a cashier even though she didn’t feel like
she was qualified for a cashier job because she had
never done it before she didn’t feel like she was qualified enough to do something health
care management so she was looking for a more entry
level work and that could be what results in
the $440 a week that we got from that RSA 911 database.
Okay. Again, here are some quotes. I mean, looking for a job is difficult enough
and I think people with MS put so much added pressure on ourselves because of the worker
we used to be. I think it’s a very difficult process
psychically because it can be very depressing, and it can be very frustrating.
We hear this theme over and over and over again that many of our participants had other
mental health issues, depression, anxiety, because they just could not reconcile the
fact that their job performance could not be what it
once was because of the declines based on their MS.
And also I would add because their employers were unable to accommodate their changing
needs. So we hear this a lot, that there’s a lot
of pressure with job seeking. And that pressure and the repeated failures can definitely result
in feelings of inadequacy and even depression sometimes.
That’s been the hardest part for me is the fact that employers don’t want to come out
and say it, but you can feel it. You can see it
when you go on interviews. You try real hard not to
show that your right leg carries itself, you know.
So we heard this a couple of times, too. That interviews are particularly difficult for
our participants. They felt that they could get
in the door with strong employment history. And
with really good resumes. And experience. But they felt that when they got to the
interview, that’s where the door shut. Because it’s hard to get through an interview without
showing some of your physical symptoms. If you’re a person with MS who has cognitive
difficulties, as well, it’s very, very hard to sit through an interview without showing
some of those cognitive difficulties, with processing
questions, that sort of thing. So many, many of our participants, especially
those who are unemployed, felt like their job
prospects always ended at the interview stage. And then finally here, I’m looking for more
entry-level jobs, maybe like a cashier or something like that. And I can’t get hired
for that because of my past experiences unless I lie
and say I did that before. So this is the conundrum that many people
face. A lot of our participants, especially those who are employed, but some of those
who are unemployed, as well, had previous careers as professionals. They had advanced
degrees, they worked in accounting or journalism. And reconciling that with taking
an entry-level job as a cashier or something like
that, was both emotionally taxing for them but also presented many, many barriers because
they had worked their whole career in higher level work. And employers tend not to take
you seriously if you’re used to higher level work
and then apply for an entry level job. So this is a
big, big barrier, as well. So finally, our last major code of the three
codes is probably more in line with what is experienced by people with other physical
disabilities based on our larger research project, our
findings so far. Whereas the first two were really quite unique
to MS, and very unique in their rooting in kind of dealing with the emotional toll of
physical disability, the stuff about navigating the
workplace is fairly common to many other physical disabilities.
So a lot of what we heard from participants was about their ability to ask for
accommodations. This was a huge, huge issue. These were largely people who had worked
their entire careers very independently. And had been very successful in their careers.
Without what they considered to be special treatment.
So having to ask for accommodations even though that’s your right in the workplace, was
very, very difficult for them. A lot of them considered it to be getting special treatment
or some of them considered it to be kind of admitting
defeat in a way. So we’ll have some quotes to illustrate that in a moment.
And really they saw it as a form of stigma. I don’t think I’m sharing the quotes with
you on the next slide but there was one person
who was talking about her visual impairments as a
result of MS and that she needed a larger computer monitor and she really found that
asking for that created some stigma because not everyone
in her office gets the big monitor. That was really a special thing. For her, it was
necessary to work. For most people it was just
something that they wanted. Also this is really common to many other forms
of disability that we have found. Many people with MS were very, very concerned about
losing their benefits. Whether that be SSDI or home health or what have you.
And that made several of the participants especially who were unemployed make the
choice to not work so they could be assured of their benefits.
So a few quotes. This top one I think is really quite good and really provides some food
for thought for employers and the VR counselors as well as people with MS. So this
participate, I was a journalist and so I worked in TV and radio and newspapers and the best
was being able to get out there and find the story.
I just can’t do that anymore. I can’t really get
out but over time I became sort of the editor and I could sit at my desk and read the stories
written by other people. So this is a great example of how you can
carve out specific job duties for people with MS
in this case. That really work for them. And that work for the employer, as well. I’m sure
the employer loves having someone who will just sit and edit. So it keeps the person
in their chosen field where they can be most valuable
and it works for the employer, too. And we need a lot more solutions like this.
Another example that’s not so positive. I was at a job once at a luxury car dealership
and got a new site and I was so excited. We’re going to go over there and we did. It
was all stairs and I couldn’t stay. I tried. I
always try. But it didn’t work out for that reason.
So here is an example of where accommodations just couldn’t work. If a car dealership
has tons of stairs and you cannot handle the stairs, it’s going to be really hard to be
accommodated in that. Even with barrier-free access laws and that
sort of thing, we all know that sometimes those
entrances are on the side or kind of out of the way. And that’s just not conducive to
selling a luxury vehicle.
So this individual had to pass up one of their dream jobs because they just couldn’t handle
the physical environment. And then finally over here on the right, right
now I can’t give up my disability benefits. I
can’t take that risk. That’s very simple, to the point. Very, very
indicative of the feelings of many of our participants.
Okay. So I want to help put some of this in context quickly. There’s a lot of other
potential implications that I won’t go over. But I want to start to put everything in context
for you so you can start to think about how you
might apply this to your own work or your own life.
So first, quickly on study limitations, as with any research we do have some limitations
to this study. First of all, on our recruitment
limitations, we really don’t know where our people
came from. We have several potential referral sources. But we didn’t track who sent which
participant. So we actually don’t exactly know who our participants really are. And
how representative they are of the national population
in terms of their overall placement within advocacy organizations and the like.
We do know that most of the participants in the MS studies did have some connection to
advocacy organizations. They talked a lot about how important the MS Society was in
their life. Mostly the local chapters.
So I think that’s important. But it’s also a limitation. Because many people with MS
don’t have those connections. And it means that our participants were somewhat different
most likely than the population of people with MS at large.
On the side of strengths, we did have a very, very wide array of participants. And I think
that speaks very, very well to the quality of our findings. I think we were very representative.
This kind of study is never, ever generalizable. This kind of study is never, ever generalizable.
But we do feel like this is a relatively honest and representative group of participants.
Which is a very difficult thing to do in qualitative research.
We also feel that given that we did the interviews telephonically, that our participants
particularly, the participants with MS, were extremely, extremely open to us.
They shared some very difficult things to talk about with us.
They were very open. They played off of each others’ comments and didn’t rely on the
facilitator to drive the conversation. We had very, very rich conversations. And I think
that also contributes to the strength of our findings.
In terms of future research, we do have a survey coming out. The main objective of this
qualitative study was to inform the questions that go into our quantitative study our survey.
And I will talk about that a little bit more in just a couple of minutes.
Okay. So some food for thought that’s coming out of this for us. The first thing is that
we really need to — for people with MS, address their changing needs. MS is constantly
changing for many, many people. And that means that our approach to helping people with
MS find employment needs to constantly change with them.
As I mentioned several times, the emotional toll of MS is relatively unique compared to
other disability groups that we have studied. So we really feel like we need to embrace
the emotional things that people with MS struggle
with sometimes. And we need to understand some of those emotional
— how those emotional challenges play into their employment outcomes and their
potential for employment. So I think it was particularly important for
professionals, perhaps especially voc rehab professionals, is that we really need to understand
the entire person in their environment as they are today. And how they perceive they
will be tomorrow. And how they perceive themselves ten years ago.
All these things play in to how we can help a person with MS find successful employment.
So we really need to understand the whole person if we’re to come up with successful
job outcomes.
This may be particularly important for MS compared to other disability groups. So it’s
something really to take to heart. Next, people with MS as we know have very
individualized needs. And we know that sometimes they felt big challenges for the
sense of self confidence and they have had their
competency challenged by their peers. So one of our jobs as an employer, as a person
with MS, as a voc rehab counselor needs to be finding competency. Even after some decline
people with MS still have many, many strengths and those strengths are very individualized
to the person. And if we can find ways to harness those strengths within the workplace,
then we can come to much better employment outcomes.
So the example with the jobs that I shared earlier on the quotes of the journalist that’s
a perfect example. And those sorts of things
can happen in most any workplace. And I think we need to challenge ourselves to be much
more progressive and much more thoughtful about
how we can make that happen so it’s a win-win both for the employer and the employee.
So finally for people with MS it’s a big transition to go from as we heard from some of our
participants the worker that you were to the worker that you will be.
It’s a major, major transition and oftentimes that transition takes a good bit of advocacy
in the workplace. And this is new to most people.
As I alluded to before, requests to telework, to use assistive devices to get a larger monitor,
to get a restroom retrofit all of these things are difficult to ask for, they are new things
to advocate on behalf of yourself but they are
not special favors. They are your rights. Under
the Americans With Disabilities Act you’re entitled to reasonable accommodations.
And your employer is required to make reasonable accommodations.
In most cases. So we would really advocate for people with
MS to connect with advocates, the MS Society gets great reviews. Connect with them. And
learn how to advocate for yourself in the workplace. Learn how to request accommodations.
Learn what your rights are. It’s not special treatment, it’s your right.
So we would really recommend that you connect with great advocacy organizations
such as the MS Society so you can really optimize your skills in the workplace.
All right. That brings us towards the end. This is the most exciting slide on the
presentation. This is our funding note. Our study was funded by NIDILRR. There’s the
funding number if you would like it. And one other very important thing. We are
now embarking on a national survey study of employment for people with physical disabilities
and we would cordially invite you to participate in it. And we would very much
like you to encourage people you know to participate in it.
So it’s a national survey along the very same lines, very similar lines of questioning as
what we saw in today’s presentation. It’s open
to anyone with physical disabilities. Doesn’t matter. MS, cerebral palsy, SCI, arthritis,
any other physical disability. And you can reach more information on it via
this link, which is also linked through this web page directly. So we really hope you’ll
take the time to follow up on that. We’re hoping
to get a very good response rate so we can really say that we’re representing people
with physical disabilities and their needs for
employment supports as thoroughly as possible. So please encourage people to take part. Take
part yourself. If you have a physical disability. And thank you very much for your
time in watching this. Thank you very much for
your support. And checking out the survey. And we hope to see you again on another one
of these webcasts soon. Thank you.

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