The growing number of Americans living with disabilities has sparked big changes in our society over the past few decades. The Census Bureau estimates almost one in five individuals—60 million—has a significant disability. Healthier lifestyles, better health care, and medical advances mean more of us live long enough to become disabled. In addition, people of all ages are surviving conditions that were previously fatal, finding that a birth defect or car accident profoundly changes, but doesn’t end life. Even if you don’t have a disability, you are almost certainly close to someone who does. How people with disabilities are perceived and treated by society is something that should concern everyone, because we are all just a blood clot or banana peel away from joining their ranks.
Landmark legislation has improved access to special education1, outlawed discrimination based on disability2, and even created special savings plans3 for people with disabilities. Two generations of children have attended public schools alongside their peers with intellectual and developmental disabilities. Children are therefore more familiar with disability issues than those who grew up in an era where people with disabilities were typically segregated and excluded from public life. It’s becoming increasingly common for people with disabilities to attend post-secondary school, have careers, and live independently. Things have never been better for family members who have loved ones with disabilities, but that doesn’t mean it’s easy.
As the father of a person with Down syndrome and an advisor to other families like mine, I know that people are often overwhelmed by the challenges posed by having a loved one with a disability. And while we are flooded with information and resources about traditional financial planning, the authors of one of the few books about special needs planning note that in this realm “…there are no simple solutions, no easy answers, and no general guidelines or statistics.”4 Financial planning for families like ours is just like ordinary planning, but you do it standing on your head, with one hand tied behind your back.
One thing that makes special needs planning an upside-down world is the fact that the most important public benefits that provide financial support for people with disabilities are “means-tested.” In order to qualify for programs such as Supplemental Security Income and Medicaid, you can have financial assets of no more than $2,000. Receipt of this vital support also creates a long-term liability of sorts. If a person with a disability wins the lottery or receives an inheritance, for example, the State will want to reclaim benefits previously paid. This makes providing support and making financial decisions for a disabled person after the parents’ death far more complicated than one might think.
Another thing that makes special needs planning significantly different from traditional planning is the extension of the timeline of support for a person with disabilities, compared to that for their siblings. Most families have two major financial goals: 1) Help their children become self-supporting and 2) Accumulate enough to fund an enjoyable retirement for themselves. Parents with children who have a disability need to plan for an additional retiree and possibly another residence in their retirement plans. So, if every household could benefit from having a sound financial plan, families that include people with disabilities need a financial plan on steroids. This includes a robust estate plan with careful thought on who you assign as a trustee.
In the coming months, I will provide more details about what families who have loved ones with disabilities need to know in order to solve the complex problems we face. The good news is that creative solutions are being worked out by families across the country. If this affects you or someone you care about, stay tuned, share your story, and help us spread the word to everyone who can benefit.