A few years ago, a loved one received a diagnosis that changed everything. It wasn’t just the medical jargon or the looming physical challenges that kept us up at night; it was the math. As we sat around our kitchen table confronting the insurance paperwork that felt like anything but a safety net, we had no idea how we would pay for the battle ahead.
Whether it is a neuromuscular condition like ALS or a neuroimmune disorder like multiple sclerosis (MS), these diagnoses launch families onto an emotional and financial roller coaster. While the biological mechanisms differ, the trajectory is often the same: a steady increase in disability that demands more care, more equipment, and more money.
To help families facing similar futures, I recently collaborated with James G. Kahn of the University of California and Dr. Rosalind Kalb of Can Do Muscular Sclerosis to develop a free tool to help families confronting these costs. Our financial planning worksheet can help families explore their options and develop a long-term strategy. One of the values of the worksheet is the ability to run different financial and care scenarios over time. Scenario planning can help families understand how different decisions and circumstances affect long-term financial stability.
The “Patchwork” Problem
In countries with universal health care, social safety nets help ease these financial anxieties. A single-payer system could ensure access to long-term care regardless of ZIP code or the heft of your bank account. But unfortunately, in the U.S., families are forced to navigate a patchwork of support. It is a complex landscape of out-of-pocket obligations, co-pays, in- and out-of-network options, Medicare gaps, and strict Medicaid eligibility rules.
It is understandable why many families are intimidated and delay planning for these types of situations. Anticipating long-term care isn’t just a financial exercise; it’s an emotional journey. But as I’ve learned through personal experience, a head-in-the-sand approach only increases future stress. Proactive planning is a tool for empowerment.
Turning Data Into a Road Map
The financial planning worksheet we’re making free to the public is designed to help families explore their options and develop a long-term strategy. The goal isn’t to provide a rigid, one-size-fits-all plan. Instead, it’s about “staging” the future to make it manageable. We recommend looking at care through four distinct stages:
- Stage 1: At Home With Limited Care. Minor supports like walkers are needed, but professional care isn’t yet required. Annual costs are typically under $20,000.
- Stage 2: At Home With Significant Care. A professional aide helps with daily needs. Depending on your location, this can jump to $30,000 to $100,000 annually.
- Stage 3: Assisted Living. Facility-based support that bridges the gap between home and a nursing home, typically starting at $50,000.
- Stage 4: Nursing Home. Full-time medical supervision, where costs often range from $75,000 to $200,000 per year.
By plugging these stages into a multi-year projection (five, 10, or 20 years), families can see the “running fund balance” of their care fund. If the balance looks negative, it may be a signal to increase contributions, explore ABLE accounts for those disabled before age 26, or utilize specialized trusts to protect assets.
Planning Is a Team Effort
If there is one thing we’ve learned through our personal journey, it’s that financial planning for a progressive illness is a team effort. Experts and professionals are there to help, and you should consult them.
- Ask your doctor: They can help you develop realistic “best, likely, and worst-case” progression scenarios.
- Meet with experts: Financial planners and legal specialists can help you navigate the highly specialized world of Medicaid planning and irrevocable trusts.
- Use available resources: Organizations like the National MS Society offer excellent frameworks for life with chronic illness.
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A More Robust Future
Facing a daunting diagnosis can make you feel like a victim of your circumstances. But data, even simple spreadsheet data, can be a form of agency. By running different scenarios based on inflation (we recommend a 3 percent annual increase) and investment returns, families can move from a place of fear to a place of preparation.
As Maya Angelou famously said, “Hoping for the best, prepared for the worst, and unsurprised by anything in between.” This worksheet is our attempt to give families the “prepared” part of that equation. It won’t make the illness go away, but it can help ensure that when the long road ahead gets difficult, you have the resources to keep moving forward.
