Facing the Future: “What Will Happen to My Child When I’m Gone?”

August 7, 2019


Most parents plan on caring for their children until they become self-sufficient adults, starting to build their own lives. However, many parents of children with special needs have a future that they can’t begin to anticipate. 

For many individuals with autism, an independent life in the future is not guaranteed. Autism Spectrum Disorder (ASD) is a developmental disorder that sometimes causes lifelong developmental delays. This means that some individuals won’t have the capacity to financially support themselves or care for his or her everyday needs. 

For this reason, many parents choose to keep their children at home for the duration of their lives. However, as most children survive their parents, caretakers must ask themselves a terrifying question: “what will happen to my child when I’m gone?” 

Many parents tend to worry about how their death will affect their other children. “A sad fact of life is that many siblings of children with autism end up looking after them. That in itself is a heavy burden for a mother to carry around. We all love our children and whilst I fear what will happen to my two boys with autism I also mourn the life that my eldest will never have,” says Rachel Edmonds, mother of two boys with autism. 


While facing one’s own mortality can be morbid and difficult, a parent never knows when they will no longer be around. This is why being proactive when planning for a child’s future can bring parents comfort that their child will be cared for in their absence. 

Unfortunately, without a plan in place, state and federal governments will step-in and make choices for your loved one that might not reflect your wishes. Foregoing plans can also impose a burden for remaining family members.

For parents who have children on the spectrum, estate planning is extremely important, but also very complicated. Estate Planning is the process in which a person- usually with the help of an expert- decides what will happen to his or her assets once they are gone.
An estate is the state and federal government’s appraisal of a person’s total net worth. It includes any and all assets in a person’s name, such as cars, homes and bank accounts. A Last Will and Testament details how a person wants their estate and belongings distributed with the help of a chosen executor. 

A will can also include documents addressing guardianship and power of attorney. Elder Law Answers describes guardianship and power of attorney as “tools that help someone act in your stead if you become incapacitated.” 

According to Autism Speaks Special Needs Financial Planning Tool kit written by Reilly Morrisson and Ginny Duhon, until the age of 18, parents act as “natural guardians” to their children with legal authority to make decisions about their child’s health, education, safety and support. “When an individual turns 18, he or she is presumed competent to make decisions about his or her person and property unless a court determines otherwise,” explain Morrisson and Duhon. 

However, this is not always the case for individuals with autism. If at 18, a parent feels that their child is incapable of making his or her own legal decisions, pursuing guardianship can be considered. 

Since an order of guardianship or conservatorship (protection and management for the property of adults who lack sufficient capacity) severely affects a person's rights, less restrictive alternatives must be explored before they’re ordered, according to state laws.
A power of attorney is one of those alternatives. According to
Investopedia, “A power of attorney (POA) is a legal document giving one person (the agent or attorney-in-fact) the power to act for another person (the principal). The agent can have broad legal authority or limited authority to make legal decisions about the principal's property, finances or medical care.” 
A will can also include a parent’s intent for their child’s living arrangements. 

No one knows the abilities of a child better than his or her parent, so it’s important for parents to step in and have input on this decision while they still can. It’s also important to involve future guardians or other individuals involved in legalities in these processes to make sure there are no surprises.  

A Special N