web viewmessage, nakia matthews, or you may also e-mail me at [email protected] . and, i am...

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>> Good afternoon, everyone. I want to thank you for joining us today. My name is Katie Metz, I am with the National Disability Institute. You are joining us for our webinar, Prolonging Work Supports to Keep You on the Job. The webinar is sponsored by Acorda Theraputics. At this point, I will turn over to my colleague, Nakia Matthews, who will go over a few housekeeping tips for us. Nakia? >> Thank you, Katie. Good afternoon. The audio for the webinar is broadcast to your computer. Make sure your speakers are turned on or headphones are plugged in. You can control the audio podcast via the audio podcast panel which you see below. If you ask to close the panel or if the sound becomes unintelligible or stops, you can reopen the panel by going to the top menu item, communicate, join audio broadcast. >> If you don't have some capabilities on your persecutor -- computer or prefer to listen by your phone, dialed the number you see here. You do not need to enter an attendee ID. I will also share this information in the chat box so you can have it when I change the slides. >> Real-time captioning is provided during the webinar. Captions can be found in the media viewer panel in the lower right corner of your webinar platform. If you would like to make this panel larger, you may do so by minimizing the other panels, like chat, Q&A or participants. Conversely, if you do not need captions, you can minimize this panel.

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Page 1: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> Good afternoon, everyone. I want to thank you for joining us today. My name is Katie Metz,

I am with the National Disability Institute. You are joining us for our webinar, Prolonging Work

Supports to Keep You on the Job. The webinar is sponsored by Acorda Theraputics. At this

point, I will turn over to my colleague, Nakia Matthews, who will go over a few housekeeping

tips for us. Nakia?

>> Thank you, Katie. Good afternoon. The audio for the webinar is broadcast to your

computer. Make sure your speakers are turned on or headphones are plugged in. You can

control the audio podcast via the audio podcast panel which you see below. If you ask to close

the panel or if the sound becomes unintelligible or stops, you can reopen the panel by going to

the top menu item, communicate, join audio broadcast.

>> If you don't have some capabilities on your persecutor -- computer or prefer to listen by

your phone, dialed the number you see here. You do not need to enter an attendee ID. I will

also share this information in the chat box so you can have it when I change the slides.

>> Real-time captioning is provided during the webinar. Captions can be found in the media

viewer panel in the lower right corner of your webinar platform. If you would like to make this

panel larger, you may do so by minimizing the other panels, like chat, Q&A or participants.

Conversely, if you do not need captions, you can minimize this panel.

>> There will be a question and answer portion toward the end of the webinar. Please use the

chat or Q and a boxes to send any questions that you have turned the webinar to me, Nakia

Matthews, and I will conduct those questions accordingly. If you are listening by phone, not

locked into the web portion, you can also ask questions by e-mailing them directly to Katie at

[email protected].

>> Please note this webinar is ping recorded and that all materials and archives will be placed

on the NDI website at www.realeconomicimpact.org /financialwellness.

>> If you experience technical difficulties during the webinar, use the chat box to send me a

Page 2: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

message, Nakia Matthews, or you may also e-mail me at [email protected] . And, I am

going to turn it back over to Katie.

>> Thank you, Nakia. Again, my name is Katie Metz and him that manager for financial

empowerment and inclusion with National Disability Institute and I welcome you today. During

the webinar, we will talk about a few things. We will go over financial wellness and what it

means for individuals with MS specifically. Our presenter will talk about an overview of what

having a job means to financial wellness. The extension of support networks, and the

importance of providing structure in life activities. Considerations directed to knowing yourself

well in your capacity to work. We will talk about disclosure of disability, returning to or

remaining on the job as a person who has MS. As Nakia mentioned, please submit all of your

questions into the chat box , to Nakia or myself, and we will make sure that we get the

questions to our presenter toward the end of the webinar. Any questions not answered, we will

ensure to follow about you at a later time or you will receive contact information at the end to

follow up individually as well.

>> We will provide you with some resources and suggested next steps. We want to, once

again, thanks Acorda Theraputics for their sponsorship of today's webinar. They have had a

long-standing relationship with National Disability Institute and we thank them for their

sponsorship and the opportunity to provide today's webinar to each of you.

>> If you are unfamiliar with 25, we are national research and element organization out of

Washington DC. We have a mission to promote income preservation and asset, and for

persons with disabilities, to work on building a better economic future for Americans with

disabilities. You can find more information about National Disability Institute at

www.realeconomicimpact.org .

>> So, what is financial wellness? We define it as the state of a person's finances with the

intent of working towards financial behaviors that the mistrust and the impact of stress on one's

daily life. We know, as a whole, financial wellness has an effect on every aspect of an

individual's life.

Page 3: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> Specifically for individuals with MS, this can often cause of stress that can exasperate

individuals with MS. So, we like to talk about what are ways that we can work around ensuring

better financial wellness for all.

>> When we talk about financial wellness, we want to look at different aspects of an

individual's well-being and how we get to becoming financially fit. One of those is through

understanding public benefit worlds. We did have a webinar -- one of those is through

understanding webinar benefit worlds. We did have a webinar last month about this, and if

you're interested in seeing that, you can find it on our website at www.realeconomicimpact.org

or follow-up with questions at any time to a staff member.

>> Financial wellness is also about being financially literate and making sure that we

understand what it means to develop assets and utilize the income and assets we have two

ensure that we are becoming financially fit in the future. We talk about accessible affordable

financial services, building and maintaining assets, accessible -- excuse me, accessing

available health care subsidies.

>> For those that are interested, we will be doing a healthcare webinar series next month on

November 20, and that information is also available on our website, as part of this financial

wellness series. Once we talk about fitting right in with today's webinar, understanding work

and long-term options, going back to work once we are back on employment or continuing our

employment, and we have income, what are the different favorable tax provisions available.

And also, what does it mean to budget and be able to use income and resources that we have

two become financially fit?

>> National poverty estimates, as you can see, individuals between the ages of 18 and 64, for

those individuals without disabilities, the national average is 12.4% which had income below

the poverty level over the past 12 months. For individuals with disabilities, that rate jumped to

more than two times, at 27.8%, with income below the poverty level. These statistics come

Page 4: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

from us from the U.S. Census Bureau of 2011. As you can see, with these statistics, we know

that no group in America is more in need and more deserving of economic recovery.

>> For millions of working age adults with disabilities, we have, unfortunately, set up a system

of dependence for income, healthcare, food and housing. Becoming a trap that requires

individuals to stay poor in order to stay eligible for the benefits that they so need.

>> The Americans with Disabilities Act , many of you are familiar with, they state, would like to

point out, many of us think of the ADA as what it means to have accessible sidewalks, or to

have job accommodations. All very important things. But, when you look at the ADA, it also

says that the nation's proper goals regarding individuals with disabilities are too short equality

of opportunity, full participation, independent living, and most importantly for this scenario,

economic self-sufficiency for such individuals. It is so important that we recognize him as part

of the Americans with Disabilities Act, that we all see part of that, entering civil rights, is also

ensuring that individuals with disabilities have the right and access to economic self-

sufficiency. Just like anyone else.

>> Why is financial wellness so important? We know, through research and studies, that

financial wellness for all impacts mental and physical health. It positively impacts of self-

concept and changes status when other community stakeholders are involved. It also

absolutely directly impacts the quality of our everyday lives.

>> When it comes to financial wellness and MS, there was a study done recently , conducted

by MSAA and National Disability Institute involving individuals with MS. This recent research

indicated that 55.1% of households earn less than $35,000 annually, and 16.4% earn less than

50,000, but more than 35,000 annually. When asked about the ability to pay all of their bills in

a typical month, 32% reported that they had a very difficult time paying their bills in a typical

month. And 46.9% reported a somewhat difficult time paying their bills every month.

>> 43% of respondents reported that their financial status has affected their ability to access

Page 5: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

medical care at some point. So, we missed him but looking at financial wellness, especially

within the MS community, is extremely important and a dire need.

>> During the same survey conducted, individuals with MS, also indicated, that 71.1% of

respondents did not have enough savings to cover over three months of expenses, and 67.1%

reported their finances were worse since their MS diagnosis. 73.7% of respondents reported

that they were not aware of or have not use financial stability programs, such as the

EITC,Current Income TaxCredit, IDA, individual development accounts, FSS, family self-

sufficiency, and the PASS program, which you'll learn about him subsequent webinars or past

webinars which you can find about in our materials on our website.

>> I want to talk briefly, here we listed some financial wellness strategies. I cannot go over

them all but there are multiple strategies that are part of that comic empowerment. Part of

economic empowerment. First of all, it is important that we know how to save and that we have

appropriate channels to do so, such as creating a budget, credit repair and of course, having a

bank account which is part of our financial literacy.

>> I prefer like to highlight that start box, which talks about additional asset building strategies

that individuals can access. Such as, the family self-sufficiency program through HUD, which

provide support for persons who would potentially like to own a home, or individual

development accounts, which are matched savings programs allowing individuals to save for

homes, education or starting a business. For more information on these, you are welcome to

contact us directly or I can, visit our website.

>> Another strategy I would like to point out here is employment. What we will be talking about

today. We need employment and wages to build assets and once we have employment, it

allows us to pay taxes, and of course, access other potential credits, such as the earned

income tax credit, which has been called by some the largest antipoverty campaign of the US.

It is a dollar for dollar tax credit which reduces the amount of tax owed and may give an

individual a larger refund.

Page 6: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> Once again, in order to do many of these things, employment is such a vital part of staying

active and earning assets and income. I am so happy to welcome today our presenter, Karen

McCulloh, who is part of our national disability Institute. She is a graduate of grand hospital

nursing in Columbus, Ohio, and loyally -- Loyola University of Chicago. She is licensed to

practice as an RN in Illinois. She worked in health arenas for many years and in 1990, and

stylish her own for-profit private practice focused on community health disability education.

She is an entrepreneur and has owned her own business for 15 years and is also become --

cofounder of the national organization of nurses with disabilities.

>> In 2005, she founded a position for new initiative disability work located at the Chicagoland

Chamber of Commerce. The result of her task force on employment with people of disabilities.

The goal of the initiative is to remove barriers that keep people with disabilities from becoming

employed with a focus on both supply and demand of employment. She was instrumental in

moving the initiative statewide in 2007, while working with the Illinois Department of Commerce

and economic opportunity.

>> During that time, she was executive director, and taught a federal -- and serve on president

Obama's transition team in 2008. She resigned as executive director of disability works in 2010

to establish her own business and received a presidential appointment from President. Obama

in 2011 to serve on the ability One commission. In 2012, we were so gracious to have her

except the founding national disability Institute project director position, for a new TA center

funded by the Department of labors ODEP LEAD center. She served one year and -- before

retiring at the end of 2013 were she will continue her work to volunteer and other active

opportunities throughout the disability community. Karen has a long work history and we are so

glad that she has been able to present with us today. So, with that, I will turn it over to you.

>> I really appreciate it. I am very excited about having the opportunity today to present,

because not only am I speaking from a professional point of view, but I also am a person with

multiple sclerosis and I have had MS for quite a long time. Throughout my career.

Page 7: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> And so the purpose of my point today is to help out and help us look at ourselves. You can

see as we progressed through, it may seem like a silly question, but, what I want to ask about

is, what does it mean to have a job? And I am sure that if we had the opportunity to be face to

face and really have an interactive conversation, we could come up with a lot of other points.

But, I want to make the point that we know that having a job gives us a reason to get up out of

bed and show up for work.

>> There is a lot of other reasons why we want to get up and out, but this is a good reason. It

gives us reason to get up, have a shower, shave, put makeup on and have an opportunity to

go say good morning to our colleagues at work. It also helps to reduce the isolation of our life.

And extend our networks. It improves our sense of self-worth, because people rely on us for

the skills that we have. And acknowledge those skills.

>> It offers a sense of achievement and also, it develops a respect that comes from our

colleagues friends and families when we are working. It enhances our sense of purpose in life,

and it also gives us the opportunity, hopefully, to be financially able to help other people. And it

offers opportunities to extend our social and professional relationships with colleagues at work.

>> Now, one of the things I have not hit him, or I want -- that I have not hit on, or perhaps

some concerns about a job, and I want to acknowledge that having a job can be stressful but

can be less stressful in regard to how we develop our work supports. But, some of the

questions or concerns about returning for staying on the job have a lot to do with the concerns

about jeopardizing our public benefits, if we have them.

>> As Katie had said, the National Disability Institute recently did a webinar, and I urge you to

go back to that archived webinar to review it. Because, I think you'll find it helpful, because a

lot of information that passes on. Anyway, because new people are diagnosed with MS, some

people had not thought about going back to work, and are now. Then, they are beginning to

ask the question about their benefits, their Social Security disability income, they may be

Page 8: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

receiving SSI, Social Security income, not disability related. And, they can also be relating --

receiving long-term private disability insurance.

>> The concern is that we getting a Social Security disability income, you may work and

receive up to $1040, or if you are blind and have MS, you may receive up to $1740. If you

receive a combination of Social Security disability income and private long-term disability

insurance, you will probably need to check your plans before you return to work and see how

that will impact that long-term disability insurance.

>> But for sure, with Social Security disability income, you can return to work, still remain with

her benefits, as long as your income does not go over [ Indiscernible ].

>> If you are a recipient of Social Security income, the calculation for income is much different.

So, part of my message today is what we can do for ourselves, and many of those things are

that we need to do the research. We need to ask questions. We need to speak with a benefits

plan or. And by the way, you have questions about that, please submit that, because I know

that both Katie can answer questions in regard to that. But, you also need to review your long-

term disability insurance plan in order to make informed choices. And, that is what this is all

about. This making informed choices.

>> Identify your challenges. Now, I probably am going to be using the word challenges as the

same as disability. And so, we want to identify our challenges and create solutions that will

acknowledge our need to work supports, that some of the work supports the can provide for

ourselves in some we may need where we will have to have assistance from our employer.

>> Individuals with MS may have some similar challenges associated with their disability. But,

many do not. Every person with MS is different and each individual must evaluate their own

situation.

>> Having said that, some individuals become employed knowing that they have MS, but do

not disclose, because they do not have a disability that is requiring, or they don't think requires

Page 9: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

to have actual accommodations from their employer. Many people with MS, it is not apparent.

There is no way that anyone else would know.

>> Disclosing multiple sclerosis or any disability is a choice that is protected under the

Americans with Disabilities Act . So, disability status, however, when you have MS, may

change. Which may also require you to revisit your disclosure, if you are currently working, so

that you may need to request work supports when your employer, may in fact, not even know

that you have MS at this point.

>> If you do not disclose or disability, you are not legally eligible to receive accommodations of

work. But I want to preface this by saying to you, there are many companies now that are very

much into enhancing productivity, no matter whether the employee has a disability or not. So,

perhaps asking for accommodations or resistance -- or assistance is not that big of a deal. A

lot of companies want to help you perform your job at the highest productivity possible.

>> It is important that you think through your challenges that impact work capacity. He coming

aware of your challenges will assist you in developing strategies to problem solve for your self

or to seek assistance to help resolve any issues.

>> I want to address some things, and I want to say, I am a very strong disability rights

advocate. And I am very much directed to the independent living philosophy and the social

model the love disability. I am not the medical model view of disability, which means that we as

people with MS or any other kind of disability, we are broken and need to be fixed. That is

definitely not where I come from. The social model is, though, that we as people with

disabilities need to step up and move forward with our lives, despite the visibility, and hope to

figure out how we do that.

>> So, I want to address, and this is not always addressed frequently, but I want to address

some challenges that we may have very weak and actually put in some of our own work

supports to help resolve those challenges.

Page 10: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> One of the areas not talked about very often, sometimes physicians never even asked and

we may not be aware. But, some people with MS have some cognitive deficits that may go

unnoticed and does not necessarily impact intelligence, by any means. But, the cognitive

deficits experienced by people with MS are frequently not ever talked about and no one may

ever mentioned to them that those cognitive deficits may be present.

>> It is estimated that approximately 60% of people with MS experienced some degree of

cognitive deficits that may be associated with cognitive thinking processes. Some people with

MS have no difficulty whatsoever in processing information. So, it is important that we know

that we are not talking about everybody, all the time.

>> So the categories of cognitive dysfunction really are three areas that I want to discuss.

Because now, I want you to think about yourself. Because that is how you begin to develop a

strategy to approach to solve it in the work support arena. One of them is attention. In the

attention area, it has to do with concentration.

>> Many of us have a short term attention span that impacts our ability to stay focused on the

task. And multitasking requires attention to be divided richer processes we must move quickly

from one task to the other. And this may be difficult for some of us.

>> I am bringing this up because if you are thinking about returning to work, or you are at work

now, then this multitasking can be quite demanding. But, there are ways to deal with that.

Another area has to do with memory. We know that long-term memory for people who have

MS is not impacted. But at the same time, we also know that there is difficulty in remembering

short-term memory in regard to sequential information and recalling conversations.

>> Not everybody has this talent, but some people do. And we also have an area that is called

executive function. And I will have to say for young adults, the executive function in our area is

not fully developed, I think, until about age 21 or 24. But, it is an area in our brain that if it is

working well, and I have to say if you saw my office you would know that mine does not always

Page 11: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

work well, it is the ability to organize your schedules, organize your office in your home, be

involved in problem-solving and decision-making.

>> So in these areas of what I call cognitive sort of dysfunction, we need to be aware that

some people with MS, the thinking process may be a little bit slower. And, if you become too

tired, you cannot process information as well. Coexisting disabilities, such as depression or

dealing with chronic pain can also affect our ability to think and could make or worsen the

cognitive deficit.

>> It also is, cognitive deficits may improve, if it is associated with inflammation results of a

relapse of MS, and it goes away when we go into remission. Some medications can also

increase cognitive deficits. And, we know that increased stress and anxiety can negatively

impact our cognitive processing abilities. And I have to say that this is true for everyone.

>> I want to go back to the short-term MIPs, because there was a piece of research that was

done by, I believe it was Emory University, where they noted that executives, when we are

doing multitasking, we are beginning to lose the short-term memory. And what they found was

that those executives went on vacation, did not take their cell phone or laptops, and when

given a little bit of time to recoup, the short-term memory came back. I think that is something

that we need to be aware of.

>> If we are under stress, certainly having a job, and it's not just the job, but how we get to the

job and other things going on in our lives, that can impact short-term memory and everybody's

short-term memory is impacted, in fact, by stress and intense multitasking.

>> So, implementing strategies that may substitute for memory is an important thing that you

can think about in regard to what you can do to reduce the cognitive deficits that he may

experience. So, one of the biggest things is to reduce the distractions by working in a quieter

environment. I frequently have been in a situation, I telecommute, and so I am in an office by

myself. It's very quiet and so I have no distractions. The one I get into it work environment

Page 12: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

where there are people coming and going and talking and offering a variety of information and

design hello, I am totally distracted and it really cannot concentrate on what I do.

>> Working with a smaller number of people in order to follow a conversation offers us the

opportunity to process information with much greater ease. So, think about her work situation

and if you have a way to control that, that ability to provide your own work support. And, keep

socially and intellectually active.

>> I put this in here because I think that sometimes when we are newly diagnosed with MS, or

we have a relapse, we feel like we may not be in control of our lives. And, I think keeping

intellectually active is important. And I always say to people, put your self in a learning

experience. I don't care whether you are taking a course on bird calls or on how to speak

Italian. But, for some reason, learning something new, putting yourself in an educational

environment makes us feel as though we have better control of our lives.

>> And I cannot tell you, I have actually experienced that and found a much better attitude and

lighter heartedness about my life when I have been in an educational atmosphere. So, give

yourself more time, also, to accomplish a task. I don't know about you, but I will tell you, if I am

given a deadline and I have a very short time to try and produce a product that I have been

requested to do, I don't do really well.

>> So, it is very helpful for me to be given a little bit more time, if I have that chance, so that I

can perform my job.

>> Follow up quickly at home or at work. By recording the items you want to remember in a

way that you know will help you. One of the issues is, we have to remember where we have

put that information so we can go back to review it. And some of the suggestions on this, to

substitute for memory, use your smart phone, a computer calendar, and iPad, to keep your

calendar updated. Use a spiral notebook. And I actually do this. I use a notebook to record in

hard copy information. When I am out of the home or the office, items that I know that I want to

remember.

Page 13: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> I usually list the date, the time and location at the top of the page so that when I come back

to it, it will remind me of when that conversation or when that item was written down. And what

it is I need to do. You can also leave yourself a message on your own voicemail. I have done

that many times. Just remind yourself of a task or an appointment that you need to keep.

>> You can also request people to e-mail you when there is permission, while you're listening

to details, while at the same time, there is an inability to simultaneously take note. Now, I have

multiple disabilities. I am visually impaired, I'm hearing-impaired, I have multiple sclerosis and

several other chronic health conditions. One of the things, because of my hearing impairment, I

have difficulty listening to details over the phone and simultaneously taking notes. I am never

quite sure I hear something correctly. And I'm not quite sure that I always processed it

properly.

>> So, it is very helpful for someone to send me an e-mail to just get immediate updates on the

discussion. Request a person to call you back and leave a message on your voicemail in order

to assist your comprehension and to process information to be reminded of your schedule and

commitments of other activities. And, review your calendar frequently.

>> I know for myself, I will go to my calendar on a Sunday night and review my schedule for

the week, particularly on Monday, to make sure I am on target with what I need to do the next

day. And it does help to review your calendar before work and for home, in order to keep your

memory up to date on what your commitments are.

>> Now, other challenges that may be present. That will help you think through some other

issues that you may be having to deal with that might improve your work support in your own

way. It is something that you have control of. And what is your physical strength ability? Are

you exercising regularly? And if not, speak to your physician and get a referral for a physical

therapist to help set up an exercise routine for you in order to enhance your physical

capabilities and improve your endurance.

Page 14: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> Because if you are thinking about going back to work, or you are at work, and you are

finding yourself really tired, if it is the [ Indiscernible ] factor, or simply that you have low

physical endurance. Research demonstrates that exercise enhances your energy level and

can improve your balance and walking.

>> I have a friend who has MS who uses a scooter and he actually does Pilates on his back.

I'm not quite sure how he does that. But, it sounds as though in exercising, if there is a will,

there is a way to do it. And, speaking of the fatigue factor, and I don't know that you're

impacted by that, but I know that I am. Many people with MS shared that they have a fatigue

factor that they must learn to live with in managing their time, while continuing to be effective

on the job or at home in taking care of their responsibilities.

>> And, an online survey that was filled out by college students that have MS, 85% of those

college students responded by saying that it was the fatigue concerns that was an educational

challenge, that was the number one issue. But, it was also followed by cognitive concerns.

>> So, many factors impact the onset of fatigue and reduced stamina, and clean living and

working in environments that are not tasks that are too hot with high humidity or too cold. And,

if you have the ability to control the temperature of your work environment, this will be very

helpful to you. I actually have a friend who has MS who said to me, I best temperature is 72. I

do very well at 72. And, that is the temperature I want to live in. And so I say, he needs to

probably move out of the cold winters of Chicago, Illinois.

>> So, ensure your work and home environments offer you the opportunity to control the

temperature that will work best for you to maximize your ability. What are your mobility

limitations Western Mark do you have walking up and down the stair issues? Do you have

standing for long periods of time issues? Walking long distances? Do you use a cane? Are you

using a wheelchair or scooter?

>> As far as thinking about work supports, is your work and home environment accessible?

Page 15: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

And if you are thinking about returning to work, you need to think about the accessible

environment that you want to return to work well. If you have to walk up a lot of stairs to get to

your job, that may not be the best job for you. However, you could also think about

telecommuting. If you are thinking about returning to work, what accessible transportation

options do you have in the area in which you live?

>> Now, many of you have probably figured all of this out and you are dealing with whether

you have access to good transportation or not. But, definitely, you have to be able to get to

work in order to have a job. And so, it is something that you can think through as you think

about the work supports that you need.

>> So, if your disability status has changed, what strategies do you need to implement to

address mobility constraints? I remembered just recently, the last year, although I had

disclosed that I was visually impaired and I had hearing impairments, several months later, I

went into my office desk by bosses office and I said, I don't do stairs, I don't stand for long

periods of time, and I can't walk long distances. I had not disclosed that I have MS. And my

boss came back and said, my goodness, you seem to have so much energy. But it had finally

gotten to me that I just definitely was not able to do, I may need some I'm -- I may need to

mobility assistance to move my chair.

>> So, having not disclosed MS, I can type whatever it needed to disclose the MS. And, we

solved the work support issue for me, actually by taking taxis, rather than trying to take the

Metro and put my luggage, because I travel so much. So, when you look at other issues, and

one of the ones I want to talk about our vision challenges.

>> I use a white cane with a red tape. I am way more than legally blind. And, I have a visual

impairment since, well, about 22 years now. So, some people with MS experience vision loss

due to scotomas, blind spots forming in their visual fields. And, this definitely requires a

physicians in prevention -- physicians intervention. Others may have optic neuritis, which is at

inflammation of the optic nerve which causes deficits in blindness. This is something definitely

be monitored by your physician and ophthalmologists. Double vision is a frequent issue for

Page 16: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

people with MS, and it occurs when the brain is unable to convert images from both eyes into

one image.

>> So, this can last for a few weeks, or a few months. And, maybe even longer, where there

may be more dramatic types of treatment. But frequently, it is associated with a relapse or a

flareup of the MS.

>> Strategies and treatments for double vision very. And all of these do need to be monitored

by a physician. I know that I warrant eyepatch for quite some time, to block the double vision.

And, it was very, very helpful. But, I was definitely directed by a physician to be using an

eyepatch. Another option is the prism lens, which fits into eyeglasses, which reinforces the way

the light enters the eye, and as it is prescribed and adjusted by an ophthalmologist. Some

people are quite fortunate that the prism lenses work. And also, it is helpful to reduce eye

fatigue by reducing computer use and reading. But, that is not an easy thing to do, if in fact, we

are at work, and we have a job to do. We are supposed to be using a computer, and we need

to read. So, some suggestions for that is to use audio books for research, but to also increase

the font size in the print on the computer to reduce the eyestrain. And also to improve the

lighting and decreased the glare. And, we do know that there are some medications that are

prescribed by a physician that can help as well.

>> But, there is assistive technology software that is available that can be downloaded onto

your computer that can provide large print and screen reading functions. And, that is one of the

best ways to reduce the eyestrain, to your software into the screen reading function so that you

can actually listen to what has been written on a page, something that you have written, or

even an e-mail, a screen reader will read the e-mail for you.

>> Another challenge that may be present that you need to think through, but many people

have already resulted. But, many people with MS do have slow or slurred speech. And, some

people have lost their ability to speak, due to the weakness in their larynx and muscles. And,

some people with speech impairments impacts their communication ability and they will use a

Page 17: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

voice synthesizer, what is often called an argumentative alternative communication device.

And, they will push keys on a little square rectangular piece of plastic with keys on it.

>> It looks similar to a small computer keyboard, and the voice synthesizer speaks the words

they want to say. So, that in itself is a work support. A communication device will help

someone stay on the job, be able to communicate, and just move on with their life. Now, I want

to talk about, if you think about the challenges we have in looking and thinking about returning

to work or staying on the job. There is an issue of disclosing your disability.

>> Now, the decision to disclose to your employer that you have MS is up to you. Disclosing

can be a challenging experience, so be knowledgeable of your disability. It is up to you to know

your disability well. You do not have to sell your disability to an employer. What you do is you

emphasize and sell your skills. Disclosing then you have MS does allow you protections under

the Americans with Disabilities Act .

>> What happens is, if you disclose to employer, the employer is knowledgeable of ADA, it

opens up an interactive process where the employer must follow through. People with MS are

not obligated to disclose their disabilities, I miss having MS is likely to affect their job

performance. And that is something you have to think through as well.

>> If work supports or accommodations are needed to meet the essential functions of the job

that you are applying for or your disability status has changed and you need to put into effect,

and your employer does not know that you have MS, it is very important that you disclose your

disability in order to be successful.

>> Accommodations that you may need are not meant to make up for a lack of skills,

knowledge or abilities. That is not what this is about. Essential functions that help you perform

the job that you have the skills for, but because of your disability, you're unable to quite apply

those skills in the direction that you want.

>> Some people fear that if they disclose that they have MS, they will be viewed by an

Page 18: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

employer with negative preconceptions that the employer may have about disability. And I

don't want to discount that. Because, that certainly is a possibility. But, as you are selling your

self and if you are known to work supports that you're going to need, that helps make it easy

for the employer to get past their perceptions. It does not mean there is not some bias always

present in the workplace. But, we do have a responsibility as a person with a disability to keep

moving forward. And do the job that we want to do and we are able to do with the supports that

we need. So, disclosure of a disability is confidential, if you disclose and only the personnel

that are most involved with you at the workplace should be aware that you have a disability,

unless you choose to disclose to your colleagues. Now, some of us with MS, our disability is

obvious. And, so that is not really in easy thing to keep it confidential. Although, we don't have

to talk about it if we don't want to.

>> So, disclosing that you have MS does open up the opportunity to be honest and discuss

work supports and accommodations that you need. And, it is more likely to send you to

succeed. One of the strategies that I used when I accepted the position as executive director

of disability Works, was that I knew at the Chicagoland Chamber of Commerce, where the

issue was located, I was going to be the first person with obvious disabilities that would have

ever been present at the worksite.

>> So, I prepared a list of written accommodations that requested the products and

accommodations that I needed. And, I also made suggestions on the products and adaptive

devices or assistive tech, G -- or assistive technology that would help me in my job. And, this is

an important piece that we have to remember. That, this is where our own research begins to

play an important role. Set yourself up to succeed.

>> So, when we need work supports, we also need to know what the work support her,

because we can't expect our employer to know everything that we know, or all the products or

technologies that are out there that might be helpful to us. So, I remember once talking to

someone who was an employee or who had gotten back to me and said, you know, I just can't

hire this person. I can't figure out how we can accommodate them. And I said to the employer,

have you asked the person? So, I think that the point here is that trying to obtain and identify

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work supports that you need to return to work or stay at work is a collaborative process that

you need to make sure that you are involved with, because you cannot expect the employer to

know all of the opportunities that are out there to provide accommodations for you.

>> An employer is not bound to purchase the exact product you suggest to them. In fact, that

has happened to me. And when I prepared my list, it was about a page and a quarter of

requests for accommodations. I have requested a Sony monitor because that is what I had in

my office, but my employer found a product made by a different company that was the same

size monitor that I have requested, but costed less.

>> So, if an employer is able to find a work support, a product that you need that will help you

perform your job, but it is not the product that you suggest, that's okay. It would still perform the

function that you needed to perform in the cost is less.

>> So, enhance your employment goals. You can enhance your employment goals by

combining your disability knowledge of yourself to build capacity to return to or stay at work by

identifying the work supports you need. Employers need assistance with this. You are the

knowledgeable person and work with them in collaboration.

>> So, questions to ask yourself. Are you able to define your work and help the situation? Only

you know best. Should I work full or part time? If you are currently a person who has MS and

you're working full-time, and you are considering requesting part-time or leaving your job, don't

leave your job until you think it through, on what exact kind of work supports could assist you

to remain in the job at the work level you are working, or to go to part time and still maintain

your job in some way.

>> Re-identify your skills and contributions you can make. If you are thinking about returning to

work, think about what it is that you did, now that perhaps you had an MS relapse. Your

disability status has changed. What other items do you need to put into effect? What other

skills do you need to develop in order to come back to work and be able to perform the job?

And ask yourself, what is your passion?

Page 20: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> I will tell you for myself, any job that I have had where I have felt passion, I will work my

heart out to do the job. So, it makes a big difference if you care about what it is you're doing.

And ask yourself, what is important to you? What is important to me? What solutions have you

identified to address your challenges? You are the driver. Remove the barriers.

>> Now, I have a different sauce of the -- I have a different philosophy in that what is is. I have

multiple sclerosis. That is what it is. I have had my car had been in denial and push myself way

too hard. I have denied symptoms, and I have to come to terms with, if this is the way it is, then

let me figure out how I can have MS and still work. Resolve the issues that I am confronted

with. Get the work supports I need, and do the job that I really like to do.

>> So, are you your own best self advocate? Are you able to ask for what it is that you need?

What is your career dream? Are you in a job that you want? So, I think that having a job is one

thing, financial wellness is a huge issue that is so important for all of us. But, having a job is

not just about a job. It is about figuring out how you get to the job. How do you get home from

the job? How do you still fulfill other responsibilities that may be part of your life in regard to

children or family? So, it is a whole package.

>> I look at each of us holistically and certainly having a job is extremely important in it impacts

our financial wellness. But, we also have to put into perspective all of the demands that are on

us, just like they are everyone else. And, how can we figure out how to do what we need to do

in the most effective way that requires less energy as possible? We only have so much energy

to do what we need to do.

>> So, let me give you an example. If that is coming to terms. I travel a lot. I have to make a

decision. Do I want to be strong and walked to the gate at O'Hare Airport? A big airport. No, I

have made a decision, I use disability services. Disability services, I use a wheelchair to get to

the gate. Right now, I will walk the ramp. But, I will make arrangements for a wheelchair to

reach me as soon as I get off of the airplane, wherever my destination is, and I will have

Page 21: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

someone push me in a wheelchair to get to baggage, to help me find my baggage, and then

get me out of a taxi.

>> Now, I take taxis a lot, because I have to make a decision in regard to the job. Do I want to

use of my energy by walking an airport or do I want to say that energy so that I can be

cognitively on target when I get to a meeting or to a place where I need to be on? In order to

present information at a conference or whatever it is I'm doing.

>> So, we have to make choices in the kinds of work support that we need, and we have some

control on that and where we are going to put our energy. Let's think about what is happening

now in the 21st century. I have worked both in the 20th and 21st centuries, and I can tell you

that in the 21st century, there are more opportunities open for people with all types of

disabilities to find a job. And remain employed.

>> That does not mean that in this economy, with the job market the way it is, it is an easy

task. But, it is possible, and there are more players that are more informed about hiring people

with disabilities and the benefits that we bring to the workplace.

>> Technology has opened up doors to careers where opportunities for people with abilities

have not been opened in the past. And I am one of those people. I am visually impaired, and.

For assistive technology on my computer, I could not do my job. More people with facilities are

enrolled in or return to colleges and universities that assist them in following an educational

career path to pursue their employment dreams. So, if you are not sure, you have not returned

to work yet, you are not sure if you are going to be able or want to return to a job that you had,

think about what kind of job you want, and think about even starting out with an online course.

You are never too old to go back to school. And, keep that as an option. Because again,

putting ourselves in an educational arena offers you a sense of control in your life that you may

not feel as they have any control anywhere else.

>> So, what are your options? If not work, try volunteer work. I will tell you that when I speak to

people who are thinking about going back to work but may not feel that they are quite ready, I

Page 22: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

always suggest that they get involved in volunteer work, because it does help build new skills

and extends the social networks. Consider taking the online course in the area of employment

issues -- interest and create a Facebook page to familiarize your self to virtual social networks.

And I have to admit, I am doing one of the last persons that finally got on Facebook. Because

my time is limited, and I just really issues with it.

>> But without question, it did give me the opportunity to explore Facebook pages for

information on employers, and I suggest if you do that, click on "like" for organizations that

you're interested in. Join LinkedIn, and I have to tell you that that has been very productive for

me in regard to exploring the members and making connections with former colleagues and

their friends to extend your professional network. Get your name out there and start getting

involved. If you can do that to social networking.

>> Join online groups of interest, and enter into discussion with -- discussions. If you're

interested in getting into discussions directed towards disabilities, there are a whole variety of

options. And, LinkedIn is a good connection to do that with. Consider working from home by

telecommuting. Now, that is definitely an option, but, if you are a person who needs work

support, because the accessibility of the work environment, if you went into work, is not viable

for you, you also go need to think about what other kinds of work support you may need.

>> If you work in an office by yourself at home, will you be able to provide those work support

your self? So, telecommuting is a solution, but it may not be the means to the end of the job

unless you can figure out how else you can accomplish the job and perform the job, the

essential functions of the job.

>> For instance, if you impact you need assistive technology on your computer, your employer

can make that available. That certainly has been done for me. And, that makes it possible for

me to be able to telecommute with the office in Washington.

>> Consider starting your own business and being self-employed. One of the things I liked

about being an entrepreneur and having my own business for 15 years was that I could set up

Page 23: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

my own schedule. So that I was not working five, six, seven days a week. But, I could pick and

choose when I had appointments. And what I really liked about having a home office was that I

would prepare all of the information that I needed if I was going to be doing or implementing a

program for a company or a nonprofit that had hired me. But, I would then leave my home

office and go on site to do a presentation or present a weekly course or whatever I was doing,

>> So, I like the fact that I had the leisure of being at home and if I needed to work on program

development, I could do it, you know, at midnight, and it did not impact anybody and I could

produce all of the materials I needed and arrive on site. With all of the information I wanted to

disseminate on what I was presented.

>> So, having your own business gives you a lot of opportunity to be creative. And, I know a lot

of people who are actually -- who actually have websites and sell products online who are

entrepreneurs and have MS. So, I also want to suggest that you be involved in investigating

Social Security return to work work incentives.

>> I have been through that, I have done that, I did the trial work period when I was on SSDI. I

was scared to death, did not know if I could do it. Any day was a new ballgame. But, I did it.

And, I have been working off and on ever since. There are certain things, though, that I think

we need to be aware of. And, one of them is that we need to pace ourselves. It is very exciting

to be working, but, we also need to have common sense approaches about returning and

staying at work.

>> If you feel as though you have to reduce your work amount from full-time to part-time, think

about why you have to do that and what kind of work incentives you could put in that will help

you do your best and stable time.

>> Having a job helps pay the bills. It helps pay the bills and helps reduce stress. Reducing

distress gives us a better quality of life and a better opportunity to pursue our interests and

hobbies and develop other activities in our lives, the quality of life is beyond work.

Page 24: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> And again, looking at ourselves holistically as a total person that is not just working, but

also functioning out there in a whole variety of ways.

>> We need to be looking at our fatigue level, our mobility abilities, our cognitive processing,

and to move ourselves forward, taking those into consideration. Stepping in and be in -- being

creative and writing some of our own work supports is a great first step to resolving a lot of the

issues which impact, our employers are not going to be able to do. We need to do that. So,

what I would like to do is to send this over to Katie to pick up on questions and answers in

regard to work and resources.

>> Katie, can you pick up in present that for us?

>> Absolutely. We do have a couple of questions, Karen. And first of all, I want to thank you.

What a wonderful wealth of resources and information that you gave us. Thank you so much

for all of that.

>> You're welcome.

>> Let's start off with, are there any good resources to find assistive technology which you

could recommend which might be helpful for individuals with low vision?

>> Let me say this. I am always hesitant to actually recommend specific products, because I

realized there is a whole lot of products that are available. What I can tell you is what I have

used and have been using assistive technology since 1989. And I have gone through a variety

of products. I use two different products. One of them is called ZoomText, which magnifies the

print on a screen. I happen to use the team that's between 10 and 12 point power, which is

pretty big.

>> But, it also has a screen reader in that. And I use that. But, with my vision, and I only have

lower left peripheral vision now, I am blind in one eye and I have that lower left peripheral

Page 25: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

vision. I also now have the screen reader on ZoomText which is not asking Peter has a

program called JAWS, which is a product called JAWS access [ Indiscernible ]. It does not

enlarge the print whatsoever, but, it reads everything.

>> And so, I know vacillate between ZoomText, and later in the day when eyestrain gets to the

point where I implored out and I'm not getting any visual message, I convert over to the JAWS

program. And I would say that these two products for me have worked well, but they're not the

only products that are out there for people who have low vision or no vision. But, I hope that'll

help answer your question.

>> Thank you. Another is, what do I do if I disclose my disability and I feel I have suffered

discrimination by losing my job or through demotion?

>> Or through demotion? Okay, well I think first of all, that is a tough situation. If you know that

you lost your job because of a disability, and that is hard to prove sometimes, that is the same

thing that is hard to prove that you did not get a job because of a disability, you do have rights.

And, under some of the resources, that are included at the bottom of the webinar, and I think

Katy you were going to mention some of those at one point, discrimination is really, really of

concern.

>> To get the individual assistance you need, to potentially think about legal actions, can be

very time-consuming and can be costly. Now, there is a protection and advocacy agency

disability network across country, I know in Illinois. In the Chicago area, it is called equipped

for equality. It has different needs across the country. And, we will be happy to send you that

link afterwards through the protection and advocacy agency. Because it does protect the civil

rights and Americans with disability rights, or people with disabilities. I am not a lawyer, it

sounds as though if you are suspect and inhabitants committed against -- you suspect that

happiness committed against or-Michael because of disabilities, that's a serious concern you

need to talk that through with someone who works in this area of law to see if in fact there is a

case, to tell you what that might be involved in and what you have to do if you wanted to file a

lawsuit.

Page 26: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> The issue of being demoted is a whole other situation. And, you have to figure out -- I

mean, I don't know exactly what you mean by demoted. Whether you are moved sideways or

put in a position where you're making less pay. I don't know exactly what demoted means. But,

I think, also, hopefully if your employer knows that you have a disability, that you have opened

up this interactive process and you have had the opportunity to talk to your employer about

this. Because if you have been demoted, does that mean you're making less pay? Or you have

been shifted over into a position where they need you more on the job? I am not denying what

I heard you say, I'm just not exactly sure what demoted means in regards to delay you are

saying it -- in regards to the way you're saying it.

>> If you feel you have been discriminated against, you need to have some legal advice and

we will try to provide some resources for you when we follow-up.

>> Another is, too many of your suggestions today work across multiple disabilities?

>> Yes. I believe, and I also have to clarify. I am a person who has multiple disabilities, and I

have MS. Some of my disabilities are caused by MS. Not all of them are. So, I do believe that

the work supports that I talked about do apply, whether it is a cognitive issue, that is

something, because stress impacts our lives as people with disabilities. And to try to move

forward, we have a quality of life, we do have to put these kinds of support into our lives no

matter what our disability is.

>> Wonderful. I think we have time for one more before we move on to a couple of other

things. Someone asked what do I do is land lawyer denies a reasonable accommodation

request?

>> That is a great question. I guess the question is, what do you think is reasonable versus

what your employer thinks is reasonable? And, that is always the fine line to meet the essential

functions of the job with or without accommodations. Part of this will be how well informed and

Page 27: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

how well educated your company is that he works for. What my experience has been, some of

the Mark companies, they are not as well educated. The larger corporate art.

>> I would suggest, if you may have tried this already, but, I would suggest that you set up an

appointment with your employer, whether it is an HR person or whoever it is that you meet with

and try to renegotiate, to reach a compromise, so that in fact you can stay on the job and get

the support you need. But perhaps, think more creatively on versus what they have denied you

and why they may or may not think it is reasonable. And, why you think it is reasonable.

>> One of the issues that may come up, and this mean I have to do with your situation, an

employer can say that providing an accommodation is causing undue financial hardship.

Generally, for very large corporations, that would be a really hard case for a corporation

through faith -- to say that this is a financial hardship. For small companies, that could be. And

I don't know if the reasonable accommodation that you have requested, and I would love to

know what was the reasonable accommodation you were denied, I just suggest that you be

your best self advocate in the most diplomatic way they can, to be assertive and come back to

your employer, sit down and talk about this again.

>> Great. Thank you so much, Karen. We are going to move onto a few resources as well, and

then we'll talk about some suggested next steps.

>> Okay.

>> So, I want to bring everyone's attention to the slide that we have in this PowerPoint, as

Nakia mentioned earlier. She put out a message to all participants. This will be available as an

archive on our website, www.realeconomicimpact.org , in the next couple of days. And, here

we have several work and health resources that Karen has put together. Some regarding

accommodations, the ADA national med work, with websites listed. JAN, the job

accommodation network, which another participant mentioned might have additional assistive

technology resources available on their website.

Page 28: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> Another individual had also asked what resources were available to a boss who may have

never managed a person with MS. And, these would be some great resources to provide that

individual as well. I know what kind of ran out of time for questions, but again, this PowerPoint

will be available as an archive. And, if you're interested in getting this information to your

employer, I think these are wonderful resources to pass along. Our Independent living

resource centers, who we of course partnered with all over the country on a national level. If

you go to their national website, you can find your local independent living resource Center

that has a wealth of information and knowledge. Containing and obtaining employment. Of

course, you can contact your local state vocational rehabilitation agency, and that can be

found through the website given.

>> Obtaining employment. Somebody else had asked about the potential for becoming

employed in resources. There of course is our Department of Labor and one-stop centers or

American job centers. There is a website that we have here for federal hiring of people

disabilities, which is also hosted by the Department of labor. We have a website regarding

collaborative decision-making, which is informed medical decisions foundation. This entrance,

and kind to disability insurance insurance, a publication to help consumers understand and

evaluate need for disability income protection. An employer's guide to disability income

insurance. This helps employers understand the benefits of offering disability income coverage

to their employees and introduces key concepts regarding the provisions of group disability

insurance policies.

>> And of course, finally, last but not least, the national organization of nurses with disabilities,

which are presenter today, Karen, helped cofound.

>> Again, these resources will be available on our PowerPoint and archived on our website.

Going to turn it back to Karen to go over some suggested next steps in the last 10 min.

>> Thank you. I want to say to the employer who is working with an employee with MS, the

resource that Katie mentioned, job accommodation network, I think about 85% of the calls or

Page 29: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

contact that they receive are from employers. So, I urge the employer to contact job

accommodation network. So, let us look at the suggested next steps. And, I just want to step

task -- step back and ask you the question, what is your view of yourself as a person with MS?

Hopefully you feel like everybody else, but you simply have to potentially do some old things in

new ways.

>> I think that we perceive ourselves impact the way that we present ourselves in the way that

we present ourselves has a lot to do with the way that people, I guess I would say, except us

or communicate with us.

>> And so, I have a very direct pragmatic way of communicating. And, I am sort of a no-

nonsense person, although I would like to say that I am warm and caring, I'm very

businesslike. And, I think that the think about ourselves should not be picking about ourselves

as being less than anyone else. We are a great value and have skills. We have a sense of

humor. We are stubborn. We have abilities to provide skills at the workplace. We have talent.

So, I think we have to be viewing ourselves like everybody else, except that we simply need to

have some work supports in place that will help us perform our job.

>> So, a positive attitude or the self-perceptions makes all of the difference in the world in what

we can believe we can do and accomplish. What is it that you want to do? And I think that this

is a very typical point in people's lives who may have been sort of turned upside down,

particularly with the diagnosis or not knowing what MS is going to mean over time. What is it

that you want to do? And, don't let MS stop you from following your dreams.

>> Make up your own mind and move forward taking it one step at a time. I recently, through

the national organization nurses with disk-based spoke with a woman with MS who has been

in a center for three months and wants to return to work. I think that we have to take it from the

first steps first, and that is, she wants to telecommute, and she is a nurse, and she is not sure

what she wants to do. So, you have to figure that out. Before you update a resume, before you

direct a resume to the job that you would like to have.

Page 30: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> So, you have to think of things first one step at a time. What additional or potential work

supports do you need to remain at work or return to work? And, you have to think it through.

You have to think it through first before you ever approach your employer, and many HR folks

are very, very good now I also helping you think it through, and they have become more

knowledgeable about the kind of support that can be provided.

>> What is your comfort level in asking for what you need? This is important. It has never been

easy for me to ask for help. I will be the first to admit preplanned or wealth. But, I have also

come to terms I cannot do my job at myself because I motivated to work, I have to ask. It is just

part of my life, but it's also part of your life to decide what your comfort level is and ask for

assistance. And you have to come to terms with doing that and know how best to handle that.

>> Are you your own best self advocate in setting up a conversation with your employer? And

this could apply to the person who asked about having a situation of having been demoted. So,

are you your own best self advocate in going back to the employer to request the assistance

and support or accommodations that you need while you are working? And, this is hard to do.

If you have been rejected, maybe there has been a miscommunication. I always think that it is

worth going back and finding out why you were told you were not able to receive a reasonable

accommodation. Open the discussion back up. The employer has a responsibility to be

interactive with you. Because if it is impacting your job of performance, it is going to impact

your job evaluation. And that is a concern.

>> How prepared are you in knowing about work supports? Hopefully through this webinar, I

am getting the wheels going and is -- it has you thinking about this. We are no longer any time

for people with disabilities need to be taken care of. We have thousands of people with

disabilities in this country who are taking care of other people. I recently remember someone

saying to me, they saw my white cane Institute, well, if there is anything I can do to help you,

please let me know. And my response was, well also, if there is anything I can do to help you,

please let me know as well.

Page 31: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> So, I feel as though the load of people with disabilities across the board in a matriarchal or

patriarchal way things that are hopefully beginning to pass by and we can be viewed as

people, just because we are a person with a disability does not mean that we don't have our

own mind. That we are not able to do what it is that we want to do.

>> But you need to do your research. With a question on the person regard to low vision and

assistive technology, I urge you to get on that. Get moving. Get it. So that you can become

familiar. There's a learning curve with all this technology, and it takes time to learn it. But, once

you have it, it can change your life. Think about how you can create solutions selected toward

any physical, cognitive or emotional challenge that you may view as a barrier to returning or

remaining on the job. Let me give you an example.

>> I have significant hearing loss and wear hearing aids. I use and assistive hearing when I'm

in meetings. And, when I first started the job with the National Disability Institute, some days I

am on 4 to 5 conference calls a day, and I was having great difficulty hearing over the phone.

So, for $149, which I paid for myself, it was a great choice, I have a hearing assistive

telephone which permits me to hear almost everything that is being said. And, it changed my

life.

>> I had no idea that I was even struggling and working so hard to cure people were saying

over the phone. And now, with the hearing assistive telephone, it is not an issue anymore. And

that helps to reduce stress for me. So, on the emotional side, I do have to say, sometimes it is

really easy to become depressed when we meet obstacles in our life that we have not been

able to figure out how to resolve.

>> One of the best ways to resolve being immobilized, that is the word I do, I am immobilized, I

don't know how to move forward, is to think it through. What needs to happen to help you

move forward with your life? There is nothing worse than sitting at home, feeling very isolated

and left out, when you are able to get out and start mixing with other people and working

towards getting back to work.

Page 32: Web viewmessage, Nakia Matthews, or you may also e-mail me at nmatthews@ndi-inc.org . And, I am going to turn it back over to Katie. >> Thank you, Nakia

>> After you have identified the challenges, obtain more information on how you can learn to

do the old things new ways. Set your goals, develop a plan of action and follow through.

Identify the first step, accomplish the first step, and go to the next step. Said a timeline for

yourself. Identify the skills that you may need to improve on to develop. The one great thing on

the Internet is there is a lot of places to go and find to learn how to develop skills.

>> Share with us your experiences. My understanding of the National Disability Institute will

be sending out e-mails over the next few months to offer you a chance to share your

experiences. So, I want to thank the National Disability Institute very much for offering just a

series of webinars, and hope that is something that we can do today that will provide some

food for thought for you, to think about the work supports you need that you can provide for

yourself in getting your self back to work or to remain on the job. Thanks so much, Katie.

CMAC thank you, Karen. Greatly appreciate your expertise and knowledge, and the wealth of

information that you brought us today. We also want to thank our sponsor, Acorda Theraputics,

for bringing this webinar series to all of you.

>> We will be conducting the series next month on November 20. Hopefully you'll receive an e-

mail if you have any questions in the meantime, our contact information is listed. We are the

National Disability Institute at www.realeconomicimpact.org . Feel free at any time to conduct

myself, Katie Metz, or my colleague, Elizabeth Jennings. Our phone numbers and e-mail

addresses are listed in the PowerPoint which once again will be available on our website within

the next couple of days. Along with archived recording of this presentation today.

>> You can also find us on many of our social media outlets. With that, it is 4:30 PM. We thank

you for joining us and think Karen for sharing the information. Have a good day, everyone.

>> [ Event concluded ]