Facing the Future: “What Will Happen to My Child When I’m Gone?”
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 Needs Trust is commonly used in conjunction with a Will to provide additional funds that will benefit the disabled person. Parents can appoint trustees to manage these funds when they are no longer able. Since the assets are not in the name of the person, they will not compromise government entitlements such as Supplemental Security Income (SSI), health care benefits or repayment of Medicaid benefits.
It’s important to avoid depleting government entitlements such as Supplemental Security Income (SSI) and Social Security Disability (SSD, or SSDI) as they can be the primary means of support.
According to Disability Secrets, “SSD is available to workers who have accumulated a sufficient number of work credits, while SSI disability benefits are available to low-income individuals who have either never worked or who haven't earned enough work credits to qualify for SSD.”
A monthly budget for the Special Needs Trust is established to provide for current financial needs, while inflation factors and life expectancy are used to calculate how much money will be needed to fund the trust in the future.
Although it’s not a legally binding document, a “Letter of Intent” is also extremely important. It describes what a parent wants for the future of their child, and provides information about his or her daily care and lifestyle, which can be helpful to future care providers.
There are also other ways to ensure a child's success. Taking advantage of funded services or other opportunities can help your child live a more independent life. Vocational courses and educational programs offered for adults with autism can teach work, living and financial skills, or lead to work opportunities. Volunteering is also a great way to help individuals with autism connect with others and build skills. Lastly, giving children the chance to interact with other adults with autism can help them connect socially and build a network of friends.
While all of these measures can help ensure a fulfilling life for a child, it’s also important to help your child understand death and grief, especially since changes in routine can make a painful loss even harder on individuals with autism. Encourage open discussion with children about death. Visuals aids can be helpful, but avoid using figurative language (such as comparing death to sleep), since it may be confusing or cause a fear of sleeping. There are a number of Grief and Bereavement Resources on Autism Speaks website.
By planning early, parents can find peace, and enjoy the time with their children without worrying about their future. Periodic reassessment of estate planning every few years can ensure that documents are still functioning and can be adjusted according to changes in a child’s life.