Most Americans hope that retirement will bring a transition into greater financial freedom and more time spent pursuing personal goals and hobbies. For parents acting as caregivers for adult children with disabilities, however, retirement often brings a different reality. Many of these adults find themselves continuing or increasing the care they provide while also facing the financial and physical challenges of aging themselves.
The issue is larger than many people realize. According to Social Security Administration data, more than 1.1 million adults receive Social Security benefits based on a childhood disability. Nearly 345,000 of them have parents receiving retirement benefits at the same time.
As America’s population ages and individuals with disabilities live longer, the number of aging parents caring for adult children with disabilities is expected to go up. David Goldfarb, director of policy at The Arc, a national advocacy organization for people with disabilities, describes this as a growing crisis. “This is a really big issue, and we’re right on the cusp of it becoming a much bigger problem,” Goldfarb says. “Because society is getting older, we have more individuals that are going to need more supports and services.”
The challenges faced by these families often start decades before retirement. Many parents adjust their careers to accommodate caregiving responsibilities. They look for jobs with flexible schedules or reduce their work hours to attend medical appointments, provide transportation, or support daily care needs. This comes at a high financial cost.
The consequences follow into retirement. Lower lifetime earnings mean smaller Social Security benefits, reduced retirement savings, and fewer personal assets. As a result, parents of children with disabilities often retire with fewer resources than others.
According to a 2023 report from the University of Wisconsin-Madison Center for Financial Responsibility, parents of children with disabilities reach retirement age with incomes 25% lower than other parents. They also usually have less savings. At the same time, they often face high costs for medical care, transportation, home-health support, and daily living support. This adds additional strain on already limited resources.
For many families, government benefits provide essential support. Yet, getting those benefits can be challenging and overwhelming. Individuals with disabilities often have to navigate many programs with different eligibility requirements and reporting rules. In many cases, individuals who qualified for benefits as children must go through different qualification processes and programs when they reach 18.
This difficult process discourages many families from seeking assistance. David Goldfarb said, “This paperwork is so daunting, and people are afraid of the penalties for getting it wrong. There is an enormous amount of complexity. It’s preventing people from getting benefits and getting the services they need.”
One example of this is Supplemental Security Income, which provides benefits to individuals with disabilities on limited incomes. SSI recipients cannot hold more than $2,000 in assets, including savings. This number has not been updated in over three decades. As a result, many individuals with disabilities cannot build emergency savings, plan for the future, or get married without losing their benefits.
Even when families do have benefits, services may not be available. Across America, 700,000 people remain on state waiting lists for services like home-based care, adult day centers, transportation assistance, and respite support. In some areas, resources are limited or nonexistent. At the same time, many parents start facing health concerns of their own. This creates another layer of uncertainty about how long they will be able to provide care.
JABA offers one of the only adult respite care centers in Central Virginia. JABA’s Respite & Enrichment Centers (JREC) provide a safe, uplifting environment during the week for adults 18+ living with disabilities or dementia. The JREC also provides caregivers time to work, run errands, or give themselves much-needed self-care. Call 434-817-5235 (Charlottesville) or 540-500-5961 (Louisa) for more information.
For many families, the biggest concern is in the long-term. Parents of adult children with disabilities often share the same fear: what happens when they are unable to provide care?
Although the topic can be hard to discuss, experts encourage families to begin planning for the future as early as possible. Creating a plan can help care continue and reduce stress and uncertainty for parents and loved ones. One of the first and most important steps is determining who will make legal and financial decisions when the individual with disabilities or caregiver is no longer able to. Additionally, families should create an Advance Directive for the parent and the adult child. This will help determine who can make medical decisions if a parent or individual is no longer able to do so.
Second, long-term financial planning is important. Families can explore options like trusts or ABLE (Achieving a Better Life Experience) accounts, which can help individuals with disabilities save money without risk of losing benefits.
As the population ages, the need for stronger support systems, simplified benefits programs, expanded community services, and long-term care planning resources will only grow. While it can seem overwhelming, planning for the future can help families create better peace of mind. Ultimately, ensuring the well-being of individuals with disabilities and older adults requires family support as well as stronger community resources and policies that recognize the lifelong job of caregiving.
Ty Mynes is a Communications Specialist and Writer at JABA.
