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The term “disability tax” refers to the additional costs disabled individuals incur to navigate daily life — costs that able-bodied people don’t have to consider. These expenses often arise from the need for medical care, adaptive equipment, accessible transportation, and other necessities. 

Unlike actual government-imposed taxes, this “tax” represents an economic burden as well as an emotional and overall wellness one. It is placed on disabled individuals because of systemic barriers such as lack of accessibility and support, healthcare needs, and the high prices of specialized goods and services required for proper medical care and lifestyle needs to assist in maintaining and improving their quality of life. 

Systemic issues that worsen the disability tax
 

To find out more about the systemic challenges of chronic illness and disability, check out the new digital issue of MS Focus Magazine.

Many disability-related expenses are not covered by insurance or government assistance. Some programs that provide financial aid have strict income limits, discouraging disabled individuals from earning above a certain threshold. Businesses often charge extra for accessibility features (e.g., hotels with accessible rooms may be more expensive). General consumer products and services are often not designed with accessibility in mind, forcing disabled people to pay extra for modifications. The disability tax isn’t just financial, it’s also a tax on time, energy, and emotional well-being. Many disabled individuals spend significant time advocating for themselves, appealing insurance denials, and fighting for accessibility in a world that often overlooks their needs.

Examples of the “disability tax” for people with MS

1. Medical treatment costs

• Disease-modifying therapies: MS medications are prioritized by doctors as a key component for managing symptoms, but these meds can cost thousands of dollars per month, even with insurance.
• Symptom management medications: Pain relievers, muscle relaxants, and bladder and bowel medications are not always covered by insurance or they come with high co-pays.
• Physical therapy and rehabilitation: Regular physical and occupational therapy can be essential for mobility and function, but often these types of therapy are not fully covered by insurance or are only covered for a limited period.

2. Accessible housing

• Accessible home modifications: Grab bars, stair lifts, ramps, kitchen modifications, and roll-in showers can cost thousands and may require out-of-pocket money.
• Ramps, widened doorways, roll-in showers, and stair lifts
• Single-story living or custom-built accessible homes (often more expensive or harder to find)
• Higher utility bills (e.g., temperature regulation for heat sensitivity in MS)

3. Adaptive and assistive costs

• Voice-to-text software, screen readers, and communication devices
• Modified keyboards, mice, or other accessibility tools
• Smart home adaptations (voice-controlled lights, smart door locks, etc.)
• Cooling equipment: Many with MS experience heat intolerance, requiring cooling vests, portable air conditioners, and extra utility costs. Insurance companies may not always cover these costs.

5. Transportation barriers

• Accessible vehicles: A wheelchair-accessible van can cost $50,000 or more. Even hand controls for driving can be thousands of dollars.
• Public transportation issues: Many cities lack reliable accessible transit, leading to expensive ride-hailing services or medical transport.
• Rideshare services charging extra for accessible vehicles.
• Limited access to reliable public transportation, leading to higher costs for taxis or private transport services (Uber, Lyft, etc.).

6. Employment and income challenges

• Reduced work hours or career changes: Fatigue and cognitive symptoms can limit full-time work, reducing income potential.
• Workplace accommodations: Employers aren’t always required to cover costs for ergonomic chairs, speech-to-text software, or other accessibility tools.
• Many disabled people earn less because of workplace discrimination, part-time work because of health limitations, or difficulty finding jobs that accommodate their needs.
• Additional costs for work accommodation (if not covered by an employer).

7. Everyday expenses and hidden costs

• Personal care assistance: Many people with MS need help with dressing, cooking, or household tasks, but personal care aides or caregivers are expensive and often not covered by insurance.
• Specialized footwear and clothing: Orthotic shoes or easy-dressing adaptive clothing (like Velcro instead of buttons) may cost more and be difficult to find. 
• Food costs: Precut or prepared foods are sometimes necessary because of hand weakness but are more expensive than cooking from scratch. Food delivery is also expensive. Grocery shopping can be a challenge too, so even though the option to have groceries delivered is a great convenience, the cost is more expensive.
• Clothing modifications or specialized shoes
• Additional costs for personal care attendants or home health aides

8. Health insurance gaps and bureaucratic hassles

• Insurance denials: Many MS-related treatments, from DMTs to physical therapy, require exhausting appeals to get coverage.
• Medication copays and prior authorizations: The time and energy spent fighting insurance for necessary medications add an emotional and logistical burden.
• Higher out-of-pocket costs for certain therapies (physical therapy, occupational therapy, and mental health therapy)
• Insurance: Companies sometimes deny coverage for “quality of life” devices, forcing people to pay out of pocket.

9. The “invisible” disability tax (Time, energy and emotional cost)

• Fatigue management: Having to rest more means less time for work, socializing, or errands, often requiring expensive conveniences (food delivery, cooking, house cleaning, or yard maintenance).
• Cog Fog Costs: Memory issues, brain fog, and sensory overload can lead to missed appointments, loss of organizational skills, stress, and the need to hire extra help.
• Aging: As we age, we are faced with more health issues and lifestyle changes. The MS tax with aging can be costly as we sometimes develop other comorbidities and progression with our MS.
• LGBTQ+: The taxes incurred in seeking and acquiring equal and quality healthcare can be overwhelming. In addition to the taxes from MS, the LGBTQ+ community continues to be taxed heavily for the ongoing fight for civil rights and equality – politics, policy, judgement, and stigma are just a few issues that make it harder for people with MS to get the care they need and live a quality of life they deserve. 
• Social isolation costs: Some people with MS stop going out because of fatigue, pain, depression or anxiety, bladder and bowel problems, mobility barriers, and accessibility issues. These and other issues may cause people to become more reclusive and will have to rely on expensive delivery services. Help isn’t cheap.

The Bottom Line:

The disability tax for MS isn’t just a financial burden, it’s also a burden of time, energy, and day-to-day stress. Many costs aren’t visible to others, and although advocacy efforts for accessibility improvements are ongoing and vital, these efforts can be exhausting (especially for those of us who are patient advocates). It can make us feel like we’re spinning our wheels yet getting nowhere.

Living with MS is hard enough. Learning how to navigate the system in hopes for change so we can break down the barriers and reduce disability taxes can be even harder. But it’s important and we must not sit idly by or give up. I understand that feeling of hopelessness, being left behind, or forced to give up and it is heartbreaking. We must keep pushing forward despite all these challenges. No one should have to fight this hard just for the basic needs and quality of life everyone deserves, but fight we must.