Estate Planning for Parents of Children with Autism (Part 1)

As people grow older, especially parents, they think about the future and how their children will be provided for once they are gone. For parents that have children with disabilities, such as Autism, it is hard to think about as some children cannot provide for themselves. Not only do you have to financially provide for that child after you’re gone, you must make sure they will be taken care of and that your death does not compromise the child in any way besides the emotional impact of losing a parent.

In this blog, we discuss what estate planning is, the challenges they can bring, what documents you need, what documents your child needs to succeed and how you should proceed once you have put your affairs in place.

The Basics of Estate Planning

Although the term "Estate Planning" sounds intimidating or complicated, it simply describes planning for what will happen with your assets once you are gone. An estate is the total net worth according to state and federal government, including bank accounts, homes, cars and any other assets in your name. Typically, people work with estate planners to help them distribute these assets without encountering legal difficulties, while keeping as much money in the family.

When passing away, one must decide where the assets will go. Often times, parents leave most of their estate to their children. Some may decide to leave some parts of your estate to friends, nieces and nephews, siblings or charitable organizations.

Estate planning is part of middle age and necessary to planning for your future. For parents who have children with autism, estate planning becomes more complicated.

The Challenges of Planning for Your Children's Future

Even if you do not have a special needs child, there are a number of challenges when it comes to estate planning. Many people do not enjoy facing mortality; it’s just human to avoid considering our deaths too closely. However, estate planning requires people to be honest about your life and death.

Estate planning brings challenges when figuring what your assets are, dividing those assets in a way that will feel fair to all, and drafting the documentation needed to make sure those assets go where they are meant to go. It can feel like a lot to tackle these challenges while in the midst of raising a child with special needs.

Each state sets its own guidelines for what rights children with Autism have, what services they can receive ,and how your estate will affect those services. Once the child turns 18 and no longer automatically under your care, you must decide to assume guardianship or get services for your child by state. It’s a good idea to determine before the child reaches 18 which services you will use. Once have decided what your child will do while you are still alive, you can move to planning for them once you pass.

Why Plan Specifically for my child with Autism?

Children with autism are developmentally delayed for life. Those with severe enough cases are not able to achieve the things that their peers do. This means they usually need to be cared for after you’re gone.

Giving the child money without putting it in a special needs trust can jeopardize state or federal services. This can leave your child without enough support to live on. Once the parents pass away, it can be very difficult to direct those funds to another source so that the child can resume getting funds. The parents must also specify who will care for your child once the parent(s) are gone, acting as their guardian and making decisions for them if they cannot do so themselves.

Legal Documents Needed for Estate Planning

Decisions will need to be put into place by a lawyer experienced with estate planning. They will help draft the documents below, and describe how these documents will benefit children with autism or other special needs.

• Last Will and Testament- Without this document, your assets will be appointed by the court. The court will also determine who should be a guardian for any children you are responsible for.

• Letter of Intent- This document contains instructions on how the estate and the decedent’s executors should care for a child, particularly a child with special needs. It specifies the care of the child once you are gone, explain out the child’s strengths, weaknesses, personality, etc., who is important in the child’s life, even the child’s end-of-life. Without that document, no one is able to talk for your child.

• Durable Power of Attorney- Whether it is an immediate or “spring” type of POA, it is important to line up those people that are going to responsible for your special needs child.

• Special Needs Trust- It is designed to provide a person with a disability with assets to enhance his or her quality of life while at the same time allowing that person to remain eligible for needs-based public benefits. A trust like this gives those children access to benefits that people without disabilities get access to without it. Setting up this trust is an extra step to ensure your child with autism has enough money to live.

In addition, you must decide on the issue of guardianship before moving forward, which we will talk about in the next part of the blog.

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