Ways to fill the financial gaps of financial planning for people with disabilities and caregivers

Up to one in four (28.7%) adults in the United States have some type of disability.¹ Without assistance from government programs, nonprofit organizations or employers, caregivers often face a tough and confusing journey — especially when it comes to planning for retirement and a lifetime of continuous care for their loved one with disabilities.

The good news is medical and technological advancements continually improve diagnosis and treatment, and many with disabilities are enjoying longer, fuller lives than in the recent past. For instance, the life expectancy of someone with Down syndrome has increased from 25 in 1983 to beyond the age of 60 today.² Even so, the costs associated with caring for someone with disabilities can be emotionally, physically and financially draining.

Lifetime costs cause growing concerns

In most instances, the caregiver will be responsible for the majority of their loved one’s medical and related costs. These lifetime costs can range depending on the condition but can be substantial. According to Autism Speaks, the cost of caring for a person with autism typically ranges from $1.4 million to as much as $2.4 million during that person’s lifetime.

“On a macroeconomic level, the direct cost of caregiving on the U.S. economy is nearly $44 billion, given the loss of more than 650,000 jobs and almost 800,000 individuals with absenteeism issues at work.”⁴

Caregivers may also experience more health and emotional problems as well as take more time off from work. For many, caring for a loved one with disabilities can be financially straining and may deter from the proactive planning necessary to prepare for the future they envision.

Navigating the maze of government assistance

Government programs are designed to provide financial support to the family, but the rules are often confusing and disproportionate to costs. For example, a caregiver’s income and assets may rule out or reduce the amount of Supplemental Security Income (SSI) available for their loved one with disabilities under the age of 18.

After turning 18, their assets cannot exceed $2,000, and their monthly earnings cannot typically exceed the monthly SSI benefit ($967 for an individual in 2025). Due to these complexities, many caregivers have substantial gaps within their overall planning strategy, especially for long-term services.

Ways to fill in the financial gaps for people with disabilities

When planning for a loved one with disabilities, it’s important to fill gaps of coverage without affecting eligibility for government benefits. A few effective options for caregivers include:

• Working with a financial professional who focuses on financial planning for people with disabilities and caregivers.
• Enrolling in accident insurance coverage that can limit out-of-pocket expenses in the event of a debilitating accident.
• Using Special Needs Trusts (SNTs) for cash, investments, life insurance proceeds and other assets that may prevent jeopardizing government benefits. Assets held in these trusts are not counted toward eligibility.
• Considering the titling of assets and how those assets are left for beneficiaries.
• Learning about ABLE (Achieving a Better Life Experience) accounts that provide an additional savings opportunity for people with disabilities. ABLE allows those with disabilities or a legal representative to establish tax-advantaged savings accounts of up to $100,000 without affecting SSI.
• Creating the proper documentation so that caregivers can legalize their vision of future care.

Whether you’ve already started planning or are unsure where to begin, a specially trained financial professional can help guide you with education and resources to help you plan for the future you envision. Learn more about the unique needs of people with disabilities and their caregivers at VoyaCares.com.