Estate Planning for Parents with Children on the Spectrum

Planning for the future of your children

Parenting involves much planning. The simplicity of making your own plan, or one for you and your spouse or significant other, disappears when kids come into picture. Parents quickly realize that their role is more of logistician for the children than anything else. Indeed, when my children were still babies I was often greeted by other family members and friends with “it’s good to see you – LET ME SEE THE BABY!” I was dismissed to the background. Such is the life.

As the munchkins grow up, you plan for their daily school day, their meals, and their extra-curricular activities. It seems there is always one more activity in the schedule than there is time to accomplish it. Some days are spent working to find time to plan. But, for parents of children with Autism Spectrum Disorder (ASD), it seems like the planning is never-ending. In addition to all the above, there is education planning, transition planning and adult services… the list goes on. But, what about the planning for the future of your child when you are no longer there?

The number of children diagnosed with ASD has risen significantly since 2000. Reasons for the increase in diagnoses vary somewhat. Some of the increase can be attributed to more awareness of the disorder and wider screening of children. Another reason is that physicians changed the age for screening children to 18-24 months from around 8 years old. Additionally, in 1991, the federal Department of Education ruled that a diagnosis of autism would permit the child to receive special education services. Thus, more children on ASD would be eligible for education assistance. Ultimately, the likelihood that a family will have an ASD child is approximately 1 in 68.[1]

For some with ASD, they are able to care for themselves and adapt to living in the world. However, ASD is a complicated disorder because a child’s success in one environment does not necessarily lead to success in another. For example, an ASD student who was successful during high school had such major problems adjusting to being away at college that his parents had to bring him back home. This situation was no fault of the parents or the child; instead, the ASD manifested differently when the young adult transitioned from the familiar high school setting in his community to the open unscripted environment that is a university. Predicting this situation was nearly impossible. Parents and trained physicians, consultants, and experts will have difficulty in determining how an ASD person will transition from childhood to adulthood.

We spoke with Melissa Lander, co-founder of Standout Advocates[2] in California, about the concerns of parents of ASD children. She highlighted that ASD children can be generally divided into two types: those with verbal capability and those without, or non-verbal. Planning for families with verbal ASD kids is somewhat simpler because the child can communicate with their caregivers. In contrast, planning for non-verbal children is more complex because the child does not communicate. Ms. Lander stated that with non-verbal kids, contingency planning for them becomes more complicated when “new” caregivers are introduced because of the child’s existing difficulties in adapting to new situations or persons. Thus, a guardianship plan for those non-verbal children must include detailed instructions to incoming or potential caregivers. The last thing any parent of an ASD child would want is for the guardians they chose for that child to inadvertently hurt the situation by not knowing how to communicate. Indeed, Ms. Lander stated that in families whose only child is on the ASD spectrum, one of the primary worries is who will become the caregiver for the ASD person after the parents are no longer capable of doing so.

We are strong advocates that every family should do their estate planning because there are too many “What Ifs” in life. While answering this question often seems to be a daunting task, but one that is very important to ensure proper care for your family. If your family has an ASD child, chances are that the parents are the primary caregivers. However, what happens when the parents are no longer able to help with the child’s, perhaps then an adult, care? Thus, advance planning is critical to ensuring proper care for the families of ASD spectrum individuals.

What is Estate Planning?

In short, estate planning is planning for the future of your family when you are incapacitated or pass away. Your estate plan details a succession plan, what to do with your assets, and who will make decisions on yours and your family’s behalf. Few people show enthusiasm about the planning process, but life’s truth is that we are only sure of two things in life, the inevitable death and taxes. We often hear the excuse that families are not “ready” to plan. Let’s face it, no one is ever ready to plan for their passing or incapacity, but there is no better or right time to plan than now. Indeed, kicking the planning can down the road may result in wishing the plan existed when the unpredictable occurs.

Challenges of preparing for your children’s future

There are a number of challenges when it comes to estate planning, even if you don’t have a child with special needs. You must decide who receives what and who will take care of your children if you are incapacitated or not otherwise capable. Dividing your assets among the people you love can be an emotional process, even more so when you need to plan for your child with ASD. Naming guardians for children is also a tough decision. Naming guardians for ASD children can be more complicated. Who do you trust to take care of your children and follow your wishes for how your children should be cared for? Trusting someone to handle this special job is a huge decision to make and one that is the most important when it comes to your child’s future and health. The care of a child with autism can be a lifelong endeavor. However, with proper planning and the guidance of a trusted advisor, you can ensure the well-being of your child and your family.

Why plan specifically for children with ASD?


If you do nothing else, make sure you name a guardian for your minor children. This is especially important when you have a child with special needs. If you don’t name someone you trust to take care of your children, the court will appoint someone to handle such an important job and you may not want the appointed representative to be the one to take care of your kids. You should help make your potential guardians and your child successful in this scenario by providing instructions for the child’s care. Also, you might consider starting a journal to record your thoughts and experiences. In essence, your journal will be something of an instruction manual to help the guardian provide better care for your child.

Health Care Directive

You have designated a person you trust to be the caregiver to your children when you are gone. But, what about any healthcare decisions that need to be made? A healthcare directive is a legal document designating a representative to handle health care decisions in your absence. Planning ahead ensures that not only will your child be in the care of someone you trust but that health care decisions will be made by someone you trust.

Letter of Intent

No one else knows your child as well as you do, and no one ever could. Without you, your child would become dependent on their appointed guardian, a caregiver who simply does not have all your personal knowledge. If your child has special needs they will have unique medical, behavioral and education requirements that may be unknown to your child’s caregiver. All these issues may arise if you fail to plan for your children’s future. However, there are steps you can take now to minimize the disruption and chaos that may occur upon your passing or if you become incapacitated.

A letter of intent is not a legally binding document but is created by parents as an important planning tool. The letter of intent is meant to hold your knowledge of your child’s or children’s needs to better guide their caregiver in providing the best possible care for them. The goal is to include your child’s history, their current status and your hopes for their future to ensure proper care and guidance.

Special Needs Trust

Each state sets guideline for what rights children with Autism Spectrum Disorder have, the services they can receive, and how your estate will affect those services. A Special Needs Trust is administered by a Trustee who delineates when and how much your child with special needs will receive. Creating a Special Needs Trust will allow your child to still qualify for government benefits including Social Security Income (SSI) and Medicaid.

In order to ensure your child qualifies for the government benefits, the Special Needs Trust will provide your child with only the “essential” quality of life expenses such as clothing, vocational training, facilitative technologies and travel. Certain health care expenses related to disability (occupational therapy and speech therapy) may be provided by the trust.

You want to always be there to provide for your child but in the case that you may not be able to, creating an estate plan specific to your child’s needs will allow you to provide for them even when you are not around.

As I mentioned earlier, answering “What If” is not always the easiest or most pleasant thing to do. But, not answering this question can be outright dangerous in the sense that if no plan exists, then the default is the state’s plan for you. Few will ever care for your child, or an ASD child, at the same level as those persons you select as guardians.

Helping people and businesses answer “What If?” and plan for the unexpected is our passion. We would be delighted to discuss your guardianship plan and give you some feedback. We recognize that not everyone will want to speak with us and that’s ok. But, please do begin thinking about your plan and speak to a trusted advisor about it.

[1] Wright, Jessica, The Real Reason Autism Rates Are Up in the U.S., Scientific American, (March 3, 2017) available at last visited October 12, 2017.

[2] Standout Advocates works to assist families in obtaining assistance through California’s Medi-Cal program that provides significant direct funding to ASD individuals. They also provide counseling, advocacy, and dispute resolution services.