This is a reprint of a blog post originally published November 7, 2008. Although almost 2 years have passed, many parents of disabled children still live in fear of what will happen when they can no longer serve as primary caregiver for their child. We hope that reprinting this blog post will help these parents understand their options for the future, and bring them some peace of mind.
My wife and I have almost reached the empty-nester stage. We look forward to that event with excitement, and a little anxiety too. We have raised four children, ranging in age from 32 to 17. After such a long run in parenting minors, it’s time to move on to that more senior stage referred to as being an empty-nester.
Not everyone becomes an empty-nester. And although we sometimes joke about the child who “failed to launch” due to the inability to get a career, there’s another group of parents who will never know the joy of seeing their child be fully self-supporting. In my office it is not uncommon for me to sit across the table from an 83 year old parent who is still the primary caregiver for a child who is chronically disabled. Those parents live in dread of the day that they will die and their children may survive them and face a future without the loving protection of a parent.
This is the first time in human history that parents face the possibility of having their chronically disabled children actually outlive them. Prior to the introduction of antibiotics and many other great advances in health care, chronically disabled children routinely died at a young age. But now, even parents who have lived to become the frail elderly themselves may have chronically disabled children who are themselves senior citizens, but who are still at home being cared for by their parents. In fact, sometimes when we assist families in bringing in a professional caregiver for the aged parents, those same caregivers are providing necessary services to the child with the disability, as well. This raises new challenges for those parents and their children.
This type of disability is really quite common. “Developmental disabilities” are severe chronic conditions caused by mental and/or physical impairments. Individuals affected by such challenges may be so profoundly impacted that they will never be able to function independently. Most of these physical and mental issues are in evidence long before a child reaches the age of 22. These disabilities will last the lifetime of the affected person.
So how can a parent be assured that a disabled child will be taken care of after the parent is gone? Some attorneys will recommend that you leave everything to another, non-disabled child, to care for the disabled sibling. This passing of the torch is unfair and in many ways ill-advised. Far better is the creation of a special needs trust specifically for the benefit of your disabled child. Click here to learn more about special needs trusts, and discover exactly why “passing the torch” is a bad idea.