Estate Planning for Parents of Children with Autism (Part 2)

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.

We will go over what exactly estate planning is and the challenges it can bring, what documents you need to have in order in your estate planning, which documents your child needs to be successful and in compliance with the law, and how you should proceed once you have put your affairs in place.

Issues of Guardianship

Most children with autism need some nature of care even after they reach 18. Many parents choose to obtain adult guardianship of their children after they turn 18 so they able to continue to make decisions for them. If you do choose to get guardianship of your adult child, you can write into the guardianship papers the areas in which your child is allowed to exercise decision-making and control, giving them a valuable stake in their own future.

This is not an automatic process; you must complete a series of steps to legally get guardianship which depends on the state. Guardianship is a controversial issue. If you are your child’s legal guardian, it is imperative you designate a new legal guardian in your will when you pass away to avoid disruption in care for your child.

There is also the choice to have your child made a ward of the state. In this situation, you will not have to assign a new legal guardian who will take over responsibility for your child upon your death which is easier for some.

Items to Cover

Before you begin estate planning, it’s important to think through the issues below to make the best possible plan for your child.

Education: Will your child be pursuing education later in life, or are they already? Many people with disabilities are able to succeed in educational settings. School is expensive, so it’s fundamental to set money aside if you’d like your child to be able to have this experience.

Medical Services: Knowing the range of medical services that will be available to your child is important. For instance, Medicaid recognizes Autism as one that “a developmental disability that can cause significant social, communication and behavioral challenges” and cover it. Knowing the rules so you can get your child signed up for services is good and means you need to understand such issues as the difference between Medicare vs. Medicaid.

Income and Finances: Figuring out how to support an adult child with autism is a challenge for many parents. There are two types of income most often come to the rescue: Social Security Disability (SSD, or SSDI) and Supplemental Security Income (SSI). An SSD is available to workers who have accumulated a sufficient number of work credits. 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. Speak to a specialist about how setting up your estate can affect either of these services.

Living Arrangements: Plan for where and how your child will live after you’re gone.

Safety: It is crucial that you make a plan for their safety. Unfortunately, individuals with autism are much more likely to be taken advantage of, so you have to look out for that.

Decision-Making: To reiterate, your adult child may be able to make some decisions themselves, or they may not. This depends on their abilities, their history and how comfortable you feel with allowing them some control over their own choices. You should plan this into your estate planning directives, so the guardians or caretakers who come after you know how to proceed.

Vocational and Other Services: If your child will be working after you’re gone, they may need vocational services. They may also need counseling or other services as well, so plan for all.

Last Will and Testament

A will has a few main components, including beneficiaries (who will get the money) and executor, or who will oversee the distribution of your estate. When writing your will, you must describe exactly how you want your estate distributed, and you must appoint a guardian for your child with autism.

Also note that if your child with autism is your only child, you may want to appoint a friend or younger family member to execute your living will, which determines how you want to be treated if you become unable to make your own medical decisions. Your child with autism may not be able to make these decisions for you.

Letter of Intent

A letter of intent is a description of how you see your child being cared for when you are gone. You can explain your child’s history, their current situation and what you’d like to see for their future. However, this is not a legally binding document, even if you trust the person whom you hope will carry it out. You must put all the other safeguards in place and not just assume your intents will be honored. However, most judges look to letter of intent for your thoughts in this document.

Durable Power of Attorney

Starting out, you will most likely have power of attorney for your child, which means that you can make legal, medical and financial decisions for them without the approval of the court. However, once you’re gone, you’ll need someone else to take over this role, and you will need it to be durable.

The difference between durable power of attorney and ordinary power of attorney is with the case of an ordinary power of attorney, the ability to act in place of another ends as soon as that person becomes mentally incapacitated. In the case of durable power of attorney, the power to act in someone else’s stead remains. This is necessary, because your child with autism may already be incapacitated.

Special Needs Trust

A special needs trust is one of the most critical documents when it comes to estate planning for parents of children with autism. Unfortunately, many parents do not know that leaving money to their special needs child can do more harm than good. Most services are only for people who have less than around $2,000 to their name and if you leave them money you can invalidate their eligibility. Then they have to spend all the money before reapplying. This can be a hassle. Depending on their other resources and the help they receive from remaining caretakers, can considerably compromise their quality of life. Instead, set up a trust to appoint a trustee to manage money and to avoid conflicting with state and federal services, such as SSI and SSD.



A regular trust is not the same, which is why working with estate planning experts who can help you understand the difference is important. While you can have regular trusts for other family members, especially children, it’s critical you don’t name your child with autism as a beneficiary of any assets that aren’t specifically listed under the special needs trust.

Documents Your Child Will Need

At minimum, there are a few documents your child will need in order to live a functional life after you are gone. Even if they do not drive, your child will need a state-issued ID to identify themselves in medical and legal situations and use when applying for services or housing.

If your child is male, they will also need to register for Selective Service while between the ages of 18 and 25. While the U.S. does not currently have a draft, this is mandatory and it excludes very few people, even people with disabilities.

Lastly, if your child has the capacity and the desire, they should register to vote. You can take care of much of this while you’re still alive, if your child comes of age then. Otherwise, you should plan for the new guardian to do so.

Periodic Reassessment of Estate Planning

Once you’ve put your estate plan into effect, you can breathe a sigh of relief. However, don’t just leave it at that. Every 5-10 years, look back over your documents and make sure they are still functioning the way you need them to, and take into account changes in your child’s life. Involve stakeholders at each reassessment period so there are no surprises after you’re gone, and you will give all family members the best chance of living happily without you.

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