
Living with MS is expensive. Very expensive. It's estimated that the average cost of living with MS is over $88,000 per year. How, in the midst of financial stress and uncertainty, can you formulate a financial plan that takes MS into account? ...
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A
I'm john strum, and this is real talk, mississippi.
It's August 12th and we have a lot to talk about. And this week we're talking with two experts about your money, specifically how to earn more of it if you're receiving Social Security disability benefits, and then how to hold on to more of it once you've earned it. First, Beth Scott, the director of case management at the Patient Advocate foundation, is joining me to talk about work incentive programs that allow an individual to keep working or even try returning to work while they're receiving Social Security disability benefits. In a moment, you'll meet my guest, Beth Scott.
Work incentives are special rules within the Social Security disability programs that allow people to continue working without losing their cash benefits or their Medicaid or Medicare health care coverage. Beth Scott is the director of case management at the Patient Advocate foundation, and Beth is joining me today to discuss work incentives within disability programs that can benefit people who are living with ms, who are able to work and looking forward to continuing to work. Welcome to the podcast, Beth.
B
Hi. Thank you so much.
A
I think a good place to start our conversation is to ask you to explain what SSDI and SSI are.
B
So SSDI is an insurance program for people who have worked and paid into Social Security through payroll taxes known as fica. So you can think of this as a program that helps people who have worked a significant amount of time but can no longer work due to a disability. Ssi, which is Supplemental Security Income, is a needs based program for people with disabilities who have limited income and resources.
A
Okay, so we have these two federal disability programs. What are work incentives within these two programs?
B
So work incentives are in these programs are to help people that may want to continue to work without losing their benefits, without losing their insurance, and without losing their income.
A
As you just pointed out, they won't lose benefits, they won't lose their health care if it's Medicare, Medicaid. So if someone is living with Ms. And they're receiving SSDI or SSI benefits, how might that affect their Medicare Part A and Part B.
B
So if they there are some protections with these workplace incentives so that people do not lose their Medicaid and Medicare.
So different work incentives depending upon what they may need and depending whether they have SSI or ssdi.
You certainly would not want to lose your insurance while you have Ms. That's for sure. Medicare is not immediately affected when you return to your work under SSDI work incentives. In fact, there are several protections in place that can help them test working.
A
Can you explain what the red book is and how someone with Ms. Can use it to better understand these work incentives.
B
So the red book is a general reference about employment related provisions of the Social Security Disability Insurance and Supplemental Security Income program. So if you're living with ms, the red book can help you understand your options, learn how working might affect your benefits when supports are available, plan to return to work so you can use tools like PASS or ticket to work to gradually re enter the workforce. It shows you how to protect your health coverage so you learn how to keep your Medicare and Medicaid while working. It also helps you track your progress when you're working so you know when to report earnings changes and what to expect when that income does change. And you can Access it at www.ssa.gov.
A
REDBOOK well, I want to drill down to some of the specific work incentives programs and I thought I'll start with the SSDI programs. So can you explain the difference between the trial work period and the extended period of eligibility in ssdi?
B
Yes. So ssdi, the trial work period allows you to test your ability to work without losing your benefits. So the trial work period is only for patients that have SSDI and it's only for nine months. And you can receive full SSDI benefits regardless of how much you earn. And the goal of that is to encourage you to try to work without losing your benefits immediately. The extended period of eligibility provides a safety net after the trial work period ends. That's for 36 months. You can receive your SSDI in any month. Your earnings fall below SGA without a new application and it supports a gradual transition to self sufficiency with flexibility and the benefits from both is the risk free and it's a trial so that you're able to keep all your benefits and your continued eligibility for benefits if your work fluctuates is a benefit through the extended period of eligibility program.
A
That trial work period sounds really useful to someone who's, you know, who wants to go back to work, but they're wondering how their Ms. Symptoms might or might not interfere with their ability to go to work. So it sounds like a great way way to try it out. But you have these guardrails in place so that you're not penalized if things don't happen to work the way you want them to, right?
B
That's correct.
A
So what is the SSDI ticket to work program?
B
So the ticket to work program is a program for again it's SSDI recipients ticket to work. It applies for both actually SSDI and ssi. So they offer vocational rehabilitation and job training services to individuals and helps them maintain their employment. It's a voluntary program that connects you with service providers called employment networks, and they help patients or people to gain skills needed to work. And this participation does not affect their benefits either SSDI or SSI benefits. And it also helps them lead to greater independence if they're able to find a job.
A
Can you explain what the earned income exclusion is?
B
Yes. So earned income exclusions are for again, for patients, like you just said with ssi. So it helps them to keep more benefits when they do start working. The SSIA does not count the first $65 of earned income. And sometimes it depends on where the income's coming from. So if the income is coming from somebody helping you pay your bills, that's a little bit different. Then you're actually going out and earning the income from a job.
A
What is section 1619 of the Social Security act or continued Medicaid eligibility, and how might it affect someone with Ms. Who wants to go to work?
B
So this allows an SSI recipient to keep their Medicaid coverage even if their earnings become too high to receive an SSI cash payment. So as long as they were eligible for SSI cash payments or cash benefits for at least one month, they still meet the determination for disability. They still meet non disability SSI requirements. So like income resources, assets, if they still need Medicaid to work and they have earnings below the state's threshold for Medicaid, then they're able to keep that.
A
What is the work Incentives Planning and Assistance Program and how might it benefit someone with Ms. Who's receiving SSDI benefits and they're interested in finding a job.
B
So it's a free service and it's a fantastic resource for people that have had a diagnosis like Ms. Or have a diagnosis like Ms. They provide counseling service benefits counseling service to people who receive both either SSDA or SSI and they're interested in working. So they get work incentive guidance. She'll whoever decides to do this, they'll learn about programs like the trial work period, extended period of eligibility and ticket to work. They'll have a customized personalized plan for them.
They also help to navigate transitions to work smoothly. And then it also helps them gain confidence knowing that they will not be losing their benefits or their healthcare coverage with this program.
A
We've been talking about work incentives connecting to federal disability insurance programs, but let's switch gears for a minute. Can you explain what SDI is and how it differs from SSDI or ssi?
B
So SDI is a state disability insurance and it's a program that provides short term wage replacement to eligible workers who are temporarily unable to work like say pregnancy illness, non work related illnesses or an injury. So there's only a few states that offer this. California, New Jersey, New York, Rhode Island, Hawaii and Puerto Rico. And they differ because again they're state run, whereas SSI and SSDI are federal. They are short term disability only, whereas SSDI is long term. And SSI is a financial need. It is based on your recent work and payroll contributions. Again it runs weeks to months where the others are longer and it comes out of state payroll taxes. It doesn't have formal federal incentives like SSI or ssdi. But if someone runs into having a long term condition like ms, then if they have been on the short term, they can go ahead and apply for ssdi. Once approved, they may be able to access the work incentives so they can have the SDI in the short term and then go ahead and apply for SSDI or SSI to see if they can be approved. And then they can take up these incentives like trial work periods and extended work of eligibility, ticket to work and those other programs.
A
When I introduced you, I mentioned that you were the director of case management at the Patient Advocate Foundation. Tell us how the Patient Advocate foundation can help someone living with Ms. Navigate the work incentives and disability programs we've been discussing.
B
So the Patient Advocate foundation is a national nonprofit and we help patients with debilitating and chronic diseases like Ms. We can help them understand and apply for ssi, SSDI or state disability programs. We help navigate Medicare, Medicaid and private insurance. We help explain or help access work incentive programs like these Ticket to Work and Pass. We also appeal insurance denials, benefit determinations. We appeal Social Security denials. We also PF does have some sister organizations that offer small grants eligible to patients for medical expenses, transportation, housing, educational, job training. And then we also offer some educational resources and guides.
A
So how can our listeners connect with the Patient Advocate Foundation?
B
So our website is patient advocate.org we also have an 800 number and we're open Monday through Friday, 8:30 to 5 Eastern Time. And that telephone number is 800-532-5274.
A
Well Beth Scott, I want to thank you for everything you and the Patient Advocate foundation do to support people with Ms. And other disabilities who are interested in getting back into the workforce. And thanks so much for talking with me today.
B
Thank you so much.
A
I know from personal experience that saving while you're living with the uncertainties of Ms. Can be a very tricky proposition. Paula Cole lives with Ms. And she also lives with lots of financial planning savvy. Paula is here to share strategies for establishing a personal financial plan for you and your family even while you're coping with Ms. In a moment, we'll meet Paula Cole.
It's estimated that the average of living with Ms. Is over $88,000 per year, and for many people, that makes planning for their financial future especially difficult. Today, Paula Cole is joining me to discuss how to think about and plan your financial future when you're living with Ms. Paula is Vice President and Head of Pension Risk Transfer Nationwide, where she also serves as president of Nationwide's African American Women Associate Resource Group and is a member of Nationwide's CEO Advisory Council. Paula was diagnosed with Ms. In the year 2000 and since then she's been involved with the National Ms. Society in a variety of leadership roles. Welcome to the podcast, Paula.
C
Hey John, thanks for having me.
A
Before we get into how to best go about planning for your financial future, can you tell us a little about yourself and your Ms. Journey?
C
Yeah, I'd love to. So as you mentioned, I was diagnosed in 2000 and I was an undergrad at the Ohio State University playing soccer and woke up one day unable to walk.
It was from that point on where I started to live my Ms. Journey. That Ms. Journey became diagnosis. Trying to figure out how I was now going to navigate a career, a family and my future. 25 years later. I would like to say I did well navigating it. There's still challenges that I'm faced with, but it's been a worthwhile journey and a lot of lessons learned.
A
Good. I'm hoping you're going to share some of those lessons today. Let me ask you, how has your experience with Ms. Influenced the way you think about money and the way you think about work and the way you kind to think about your future lifestyle?
C
It has, unbeknownst to me, changed. I believe everything that I thought I would need to take in consideration.
I was young and now looking back, it changed what I wanted. It changed who I wanted to be when I grew up. It also changed my perspective on.
What I should take in consideration as expense management and income. So the things I need to spend money on and how I see money coming in I'm that much more aware of because I'm living with a disease that at times can cause volatility in my day to day. And so I find myself now having aged with ms, making sure I'm planful And I understand what I can control, but then also taking in consideration what the future might look like for my family and myself.
A
So as I was listening to you just now, it sounds like really from the time you were diagnosed to now, you're your thinking has really evolved, has had to evolve. What do you wish someone had shared with you or what might have surprised you at the time of your diagnosis that you've since learned is kind of important?
C
I believe that it's the caregiver burden that has surprised me the most and I've learned the most about earlier on, I didn't know how much my parents who were there from diagnosis would have to support me now even into adulthood. And those individuals that I'm surrounded by, also known as my village, how much awareness they need to have about Ms. And the financial burden it can cause, the mental burden it can cause, the physical burden it can cause on me and therefore on them indirectly and directly. Those have been things that I've learned throughout my journey and making sure that I bring them along to understanding what the disease means for me and that they also appreciate how to help me. Those have been the things that I've learned the most. The caregiver burden, if you will.
A
Well, as someone who spent many years as an Ms. Caregiver, I can co sign everything you just said. I tend to tell people that it's been my experience that Ms. Affects families, not just individuals, and I think you just illustrated that pretty perfectly. Let's get into some financial planning now. So when it comes to financial planning, where's the best place for someone to start? Especially when they could be dealing with issues like long term disability or other unexpected health issues.
C
Some of the first places to start is recognizing that you are not the expert and planning your financial future. So seek out the advice of those that are experts. The second thing I would say is taking a record of your expenses plus then understanding the frequency of your income and putting those two things together will allow you to know how much expense you have going out the door for your day to day, plus how much money you have coming in. We often lose sight of this as we just are living our life. And now you add into that the burden of the Ms. Journey and the relapses that come with that, the medications that come with that. So making sure that you understand what your expenses are today and factoring in or forecasting what those expenses can look like when Ms. Is becoming more of a challenge will allow you to start the planning journey. When you seek out the advice of.
A
Someone to help as you know, living with Ms. Means living with uncertainty. So given that, what's the best way for someone with Ms. To manage what could be fluctuating income or those unexpected unplanned medical costs?
C
Yes, I think about this question in two parts. The newly diagnosed and then those that have lived with Ms. For quite some time. The newly diagnosed Factoring in things that you haven't seen and haven't experienced is extremely hard. But getting a hold of your expense column now and knowing things that are in that column that you can stop doing that might be creating an expense burden on you is one of the first steps to help manage what the future might look like when you do need to incur an expense because of the disease. For those individuals that have been living with ms, we often know or we can forecast what a relapse might look like, or the increase of the burden of Ms.
Forecasting or planning ahead allows us to factor in some of those costs. And for your planning piece of that, it's knowing how much expense an exacerbation a relapse can be and making sure that you're planning for that time, making sure that you are aware of what that means. If you're not able to work, are you able to still have savings enough to support you during those times?
A
What are some of the financial considerations that someone should take into account if they're considering leaving their job and applying for Social Security disability insurance or SSDI benefits?
C
The things to keep in the forefront would be what are you losing from your employer that allow you to continue to save towards your retirement income? Or what are you losing from your employer that allows you to continue to have the best health journey that you can have, and that is loss of health coverage or insurance or a pivot to something different if you were to leave the workforce and go on Social Security disability? The loss of contribution from your employer towards a retirement savings account like a 401k or even a health care savings account. Some employers match those. Both of those and it allows for you to have an additional savings on the side. So stepping out of the traditional workforce or an employer that affords you some of those options, you will need to take those in consideration in your planning for the future of what does that savings now look like if you don't have a match towards it? Or what does health care coverage look like if you don't have an employer based health coverage system?
A
You've already started to answer my next question, but I wanted to ask what are some ways someone living with Ms. Can get started planning for their financial future. You know they say the journey of a thousand miles starts with one step. So what is the single step they need to take?
C
Yeah, so it's a two part step. You got to take one step and then take the take the next step. But in the first step it's getting control of your own expenses and your own income and having an understanding of what that looks like month over month and year over year and then seeking out the advice of an expert that knows more than you. There are applications or apps out there that will help you in that first step of gaining control of your own expense and your own income. And it'll allow you to bucket out some of those things and see visually see what those are, taking that then to someone that knows more about planning, they'll be able to help you manage what that looks like, the volatility of what that could look like if there is a time in which the income is lower than your expenses. And I would also say in that second step of seeking out the advice of someone that is an expert, asking the question of that expert, if they've worked with clients that have and or living with long term health issues, having experience in that equips them better with being able to consult you.
A
What types of people or tools or services are available to make it easier for someone with a long term disability to keep their finances organized.
C
Yeah, so I love this question because some of these are a Google search away. And as you think about the steps that you need to take and the advice that you need to seek out, it is a Google search way to find applications that might help you in your planning and your financial planning. Your local bank and some of our bigger banking institutions have applications already set up that have recorded the expense that you incur plus the income that you have coming in just because you're banking with them, your savings with them, your checking is with them, then looking for a expert within reach for you. There's a lot of financial planners and experts that will meet you virtually or meet you in person. And tying both of those things together, planning in those applications, plus bringing that to an advisor will help you through your journey. So we'll Google search away without giving any of the top names that are out there. Your Google search will probably point you to the ones that are most used. But those would be ones that I would suggest and I would also suggest using the search engines that highlight those applications and those individuals as being five star, right, as being top of mind. Because if other people are using them and there's a volume of individuals using them, then that likely signals that they are good at what they do or the application is best fit for what you need.
A
Paula Cole, I want to thank you for sharing some great insights into how someone living with Ms. Can start taking control of their financial future. And thanks so much for talking with me today.
C
Thanks, Sean. I appreciate the time that's going to.
A
Wrap up this episode of Real Talk Ms. Real Talk Ms. Is powered by the National Ms. Society, and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser at realtalkms.com/415. You'll find that link in today's show Notes, so you can easily copy and paste it right into an email or a text. Next week On Real Talk MS, we're talking with Dr. Andrew Solomon about the new criteria for diagnosing Ms. The updated McDonald diagnostic criteria for Multiple sclerosis are scheduled to be published in September, but you'll hear all about them on the next episode of Real Talk, Mississippi. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
B
Sam.
Title: Your Money -- Ways to Earn and Hold Onto More of It When You're Living with MS
Host: Jon Strum
Guests: Beth Scott (Director of Case Management, Patient Advocate Foundation), Paula Cole (Vice President, Nationwide; MS advocate)
Date: August 11, 2025
Focus: Practical financial tips and resources for people living with MS, covering how to earn more money while on disability and strategies to protect and manage your finances.
This episode of RealTalk MS dives into the realities of managing money when living with Multiple Sclerosis. Host Jon Strum welcomes Beth Scott, who unpacks the complex web of Social Security Disability benefits and the work incentive programs that provide a safety net for those wishing to return to work. Later, financial expert and MS warrior Paula Cole joins to share her personal and professional strategies for planning a stable financial future despite MS-related uncertainties.
With Beth Scott (00:18–12:46)
“You can think of this as a program that helps people who have worked a significant amount of time but can no longer work due to a disability.” – Beth Scott (01:44)
“Work incentives... help people that may want to continue to work without losing their benefits, without losing their insurance, and without losing their income.” – Beth Scott (02:18)
“Medicare is not immediately affected when you return to your work under SSDI work incentives...” – Beth Scott (03:04)
“If you're living with MS, the Red Book can help you understand your options, learn how working might affect your benefits... plan to return to work...” – Beth Scott (03:27)
Trial Work Period (TWP): For SSDI, nine-month period where beneficiaries can test working without loss of full benefits, regardless of earnings. (04:33)
Extended Period of Eligibility: Follows TWP; a 36-month safety net to receive SSDI in any month income falls below “Substantial Gainful Activity” (SGA) without a new application. (04:33)
“It’s a trial so you’re able to keep all your benefits and your continued eligibility for benefits if your work fluctuates.” – Beth Scott (05:19)
Ticket to Work: Voluntary program for SSDI/SSI recipients; provides vocational rehab and job training with no loss of benefits while seeking greater independence. (06:10)
“It’s a voluntary program that connects you with service providers called employment networks...” – Beth Scott (06:14)
Earned Income Exclusion (SSI): First $65 of earned work income is not counted, enabling continued benefits while working (06:56).
Section 1619 (SSI): Enables continued Medicaid for those whose earnings have risen above SSI payment threshold, so long as disability and eligibility criteria are maintained. (07:32)
Work Incentives Planning and Assistance (WIPA): Free benefits counseling and personalized work plan for SSDI/SSI recipients interested in working, ensuring a smooth transition and understanding of protections (08:19).
“They are short term disability only, whereas SSDI is long term. And SSI is a financial need.” – Beth Scott (10:10)
“We help explain or help access work incentive programs... PF does have some sister organizations that offer small grants eligible to patients...” – Beth Scott (11:24)
With Paula Cole (12:48–27:37)
“I was an undergrad... woke up one day unable to walk... now looking back, it changed what I wanted. It changed who I wanted to be when I grew up.” – Paula Cole (14:14, 15:26)
“It’s the caregiver burden that has surprised me the most... the financial burden it can cause, the mental burden, the physical burden...” – Paula Cole (16:49)
“Seek out the advice of those that are experts. The second thing I would say is taking a record of your expenses plus then understanding the frequency of your income...” – Paula Cole (18:34)
“Getting a hold of your expense column now... is one of the first steps to help manage what the future might look like when you do need to incur an expense because of the disease.” – Paula Cole (20:12)
“What are you losing from your employer that allow you to continue to save towards your retirement income?...health care coverage or insurance or a pivot to something different...” – Paula Cole (22:07)
“It's getting control of your own expenses and your own income... then seeking out the advice of an expert that knows more than you.” – Paula Cole (23:53)
“It's a Google search away... Your local bank... has applications already set up that have recorded the expense that you incur plus the income that you have coming in...” – Paula Cole (25:35)
Beth Scott on health coverage protections:
“Medicare is not immediately affected when you return to your work under SSDI work incentives. In fact, there are several protections in place that can help them test working.” (03:04)
Beth Scott on Patient Advocate Foundation:
“We help patients with debilitating and chronic diseases like Ms. We can help them understand and apply for SSI, SSDI or state disability programs…” (11:24)
Paula Cole on the importance of financial self-assessment:
“Having an understanding of what [your finances] looks like month over month and year over year and then seeking out the advice of an expert that knows more than you.” (23:53)
Paula Cole on the role of caregivers:
“It’s the caregiver burden that has surprised me the most and I've learned the most about… making sure that I bring [my support network] along to understanding what the disease means for me and that they also appreciate how to help me.” (16:49)
| Timestamp | Segment Description | |-----------|-----------------------------------------------------------------------------| | 01:44 | Beth Scott explains SSDI and SSI | | 02:18 | Purpose of work incentives in SSDI/SSI | | 03:04 | Impact of work incentives on Medicare/Medicaid | | 03:27 | The Red Book as a practical resource | | 04:33 | Differences between SSDI trial work period and extended eligibility | | 06:10 | Ticket to Work program details | | 07:32 | Section 1619 and continued Medicaid eligibility explained | | 08:19 | Introduction to Work Incentives Planning and Assistance (WIPA) | | 09:20 | SDI (state disability insurance) vs. federal programs | | 11:24 | How the Patient Advocate Foundation helps with disability and work incentives| | 13:17 | $88,000/year: Average cost of living with MS | | 14:14 | Paula Cole shares MS diagnosis story | | 16:49 | Paula on the caregiver burden | | 18:34 | First steps for financial planning | | 20:12 | Managing income/expenses with unpredictable medical costs | | 22:07 | Factors before leaving workforce for SSDI | | 23:53 | Paula’s two-part “first step” to financial stability | | 25:35 | Useful financial planning tools, resources, and advice |
This episode is a practical primer for anyone in the MS community navigating the challenges of earning and retaining financial stability in the face of chronic illness. With clear explanations of government programs, actionable steps, and the voices of advocacy and lived experience, listeners are equipped to take the next step—whether it’s returning to work, planning for a secure future, or simply understanding the resources available to them.