RealTalk MS – Episode 415 Summary

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.

Overview

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.

Key Discussion Points & Insights

1. Understanding Disability Programs and Work Incentives

With Beth Scott (00:18–12:46)

SSDI and SSI Explained

• SSDI (Social Security Disability Insurance): Insurance program for individuals who've paid into Social Security via payroll taxes (FICA). Provides support for those unable to work due to a disability.

  “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)

• SSI (Supplemental Security Income): Needs-based, for individuals with disabilities who have limited income/resources. (01:44)

Work Incentives in Disability Programs

• Designed to help beneficiaries test or resume working without immediate loss of benefits or healthcare.

  “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)

Effects on Healthcare Coverage

• Protections in place to ensure Medicare (SSDI) and Medicaid (SSI) are retained while testing work ability.

  “Medicare is not immediately affected when you return to your work under SSDI work incentives...” – Beth Scott (03:04)

The Red Book: The Disability Benefits Guide (03:20)

• Comprehensive reference for employment-related provisions in SSDI and SSI.
  • Helps understand options, report income changes, maintain health coverage, and track employment impact on benefits.

  “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)

  • Available at ssa.gov.

Key Programs:

• 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).

Federal vs. State Disability (SDI) (09:20)

• SDI (State Disability Insurance): Short-term wage replacement for temporary inability to work, available only in a handful of states.

  “They are short term disability only, whereas SSDI is long term. And SSI is a financial need.” – Beth Scott (10:10)

  • Those on SDI can transition to SSDI/SSI (and access federal work incentives) if diagnosed with a long-term condition like MS.

Patient Advocate Foundation (PAF) Support for MS

• National non-profit providing case management, help with applications, insurance navigation, appeals, and grants for those with chronic diseases like MS.
  • Grants available for medical expenses, housing, transportation, job training, etc.

  “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)

  • patientadvocate.org | 800-532-5274 (12:16)

2. Financial Planning Insights for Living with MS

With Paula Cole (12:48–27:37)

Paula’s MS Journey & Financial Evolution

• Diagnosed in college; immediate impact on her life trajectory, career, and plans.

  “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)

Caregiver Impact Awareness

• The burden on family and support networks is often underestimated.

  “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)

Foundational Steps for Financial Planning

• Acknowledge you’re not the expert; seek advice from professionals.
• Thoroughly document and understand your expenses vs. income.

  “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)

Managing Income Volatility & Medical Costs

• For the newly diagnosed: Actively pare down unnecessary expenses and prepare for unpredictability.
• For those living longer with MS: Use experience to forecast and plan for potential relapses and their associated costs.

  “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)

Transitioning from Work to SSDI – What to Consider

• Weigh loss of employer-based health insurance, retirement contributions, and HSA matches before leaving the workforce.

  “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)

First Steps Toward Better Financial Health

• Step 1: Take control of expenses and income—track every month.
• Step 2: Use this knowledge with a financial planner, preferably one experienced with chronic health conditions.

  “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)

Tools and Resources

• Many accessible digital apps (often provided by banks) can help with tracking and managing finances.
• Search for top-rated financial advisors and applications; prioritize those with expertise in long-term disabilities.

  “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)

Notable Quotes & Memorable Moments

• 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)

Timestamps for Important Segments

| 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 |

Final Thoughts

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.