Research Spotlight: What the Numbers Say About the Real Cost of Disability
Families of people with disabilities often face higher out-of-pocket costs and more frequent financial stress than other households. Each month, we highlight one topic — from ABLE accounts to policy changes and local resources — to explain what it is, why it matters, and how it might affect day-to-day life, in clear, non-technical language.
New research continues to confirm what many families already know firsthand: caring for a loved one with a disability carries a financial weight that most people outside this community rarely see.
A 2026 report from the AARP Public Policy Institute estimates that family caregivers in the U.S. provided approximately 49.5 billion hours of unpaid care in 2024 — work valued at roughly $1.01 trillion, more than the entire Medicaid program. Yet despite contributing at that scale, nearly 23% of caregivers report going into debt as a direct result of caregiving, and 20% struggle to meet basic needs like food, housing, and utilities.
The income side of the equation is equally stark. Research consistently shows that mothers of children with autism earn an average of 56% less than mothers of children without disabilities — a gap that can persist for a decade or more. A 2025 study on families of children with complex developmental conditions found average annual household income losses of more than $31,000 due to caregiving responsibilities alone.
Direct costs add pressure too. In-home care now runs a national median of $34 per hour in 2026. Families in states with limited public services may pay up to $10,000 out of pocket for a single diagnostic evaluation. For households already navigating reduced income, these costs are not occasional — they are ongoing.
Understanding the landscape these numbers describe is one reason coordinated planning — including tools like ABLE accounts, special needs trusts, and benefit-aware savings strategies — matters so much for long-term financial stability.
Planning around disability, benefits, and long-term security is complex, and there is no one-size-fits-all solution. This series is for education only and is not financial, legal, or tax advice; when you are ready to explore what makes sense for your own situation, consider talking with qualified professionals who understand both special needs planning and your family's goals.
- Anthony Lishka, ChFC®, ChSNC®, CPFA®, CF2®