This question often haunts the parents of an adult child with disabilities. Many parents in this situation have always been the guardian, caregiver, and overseer of their child’s life. So what happens when the parent is no longer able? Or when they have passed away? Or when they need care for themselves? It is important to have these discussions now – before a crisis occurs.
Historically, families in this situation have been able to depend upon each other. There was a natural succession – a passing of the torch – in which a sibling or another family member was the presumptive “next-in-line” to care for their loved one with disabilities. These days, however, families are constructed a little differently. Adult children move away. Families are often smaller and less connected. Career responsibilities preclude the ability to help care for a loved one with special needs. The list of reasons goes on, but one thing is certain: someone must fill this role.
Future planning is essential. Parents of adult children should carefully consider the options for a successor guardian or decision-maker. They should identify someone who is dependable, able, and willing to serve in this role. Parents should confer with their attorney to address this in their will and establish necessary documents to ensure that their wishes are followed at the time of their passing. It is also vital to develop strong professional relationships as well as natural supports who will be available to assist the child at some future point. Parents should ensure that someone (or many “someones”) know everything there is to know about their child’s needs and circumstances to ensure that there is never a gap in their care and support.