Estate Planning for Parents of Children with Autism

As people grow older, especially parents, they begin to think about the future, and how their children will be provided for after they’re gone. For parents of children without developmental disabilities, this is easier, as those children can typically provide for themselves.

However, when you have a child with Autism Spectrum Disorder, the issue becomes much knottier. Not only do you have to financially provide for that child after you’re gone, you must ensure they’ll be well taken care of and that your death does not compromise the child in any way other than the obvious emotional impact losing you will have.

Below we will discuss what it means to plan your estate when you have a child with autism. We will address the basics – like what exactly estate planning is and the challenges it can bring – as well as 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.

Planning for the future when you have a child with autism can be difficult, but if you take a forthright approach, you will pave the way toward a successful life for your child with autism, even if you are no longer around to take care of them.


What Is Estate Planning? 

First things first: What exactly is estate planning? Although the term sounds kind of formidable or complicated, it merely means planning what will happen with your assets once you are gone. An estate is your total net worth according to the state and federal government. It includes bank accounts, homes, cars and any other assets you may have to your name. Typically, people work with estate planning experts to help them figure out how to distribute these assets without encountering legal difficulties, and while keeping as much money as possible in the family.

When you die, you must decide where these assets will go. Typically parents leave much of their estate to their children, though you may also decide to leave parts of your estate to friends, nieces and nephews, siblings or charitable organizations.

Estate planning is a fairly normal part of middle age, and if you’re looking for a quick guide to what goes into it, you can look here. However, for parents who have children with autism, estate planning becomes more complicated.


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 special needs child. For one thing, many people do not enjoy facing mortality; it’s just human to avoid considering our deaths too closely. Unfortunately, estate planning requires you to be very honest about your life and death.

Not only that, estate planning brings many challenges in the form of figuring what your assets are, dividing assets between siblings in a way that will feel fair to all, and drafting the often-lengthy documentation needed to ensure those assets go where you want them to. If you are still in the process of raising a child with autism, it can feel like a lot to tackle these challenges while in the midst of that.

Moreover, each state sets its own guidelines for what rights children with Autism Spectrum Disorder have, what services they can receive and how your estate will affect those services. Once your child reaches 18 and is no longer automatically under your care, you must decide how you will respond. You can either assume guardianship (discussed below) or you can get services for your child by state. Here is an excellent guide to autism services by state, provided by Medicaid.

It’s a good idea to decide which services you will use before your child reaches 18. Once you have established how your child will live while you are still alive, you can move to planning for them once you pass.

If you have not yet started planning your estate and would like to learn more about the Autism Spectrum before you do, or if your child has recently been diagnosed with Autism Spectrum Disorder and you need more information about what that means, an excellent book to check out is Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical, and Transition Needs ofTeen agers with Autism Spectrum Disorders by Chantal Sicile-Kira. If you are interested, there are classes offered based on the book that can help you understand what it means to raise a child with autism as well as how you can best protect them now and in the future.


Why Plan Specifically for Children with Autism?

First of all, children with autism are typically developmentally delayed for life, which means they will most likely never be able to accomplish the things their peers do, like earning an income to support themselves. That means they usually need to be cared for after you’re gone.

Unfortunately, giving them money without putting it in a special needs trust can jeopardize state or federal services, which can leave your child without enough support on which to live. Once you’re gone, it can be very difficult to divert those funds to another source so that the child can resume getting funds. Plus, you must specify who will care for your child once you’re gone, acting as their guardian and making decisions for them if they cannot do so themselves (often the case with children who have autism).


Legal Documents You Will Need

In order to put all of these decisions in place, you will most likely need to draft the following documents with the help of a lawyer. We will go over each of these legal documents in more detail below, specifically as they relate to a child with autism or other special needs. If, however, you are not very familiar with them, you might want to take some time to read more generally about the purpose of each.

In addition, you must decide on the issue of guardianship before moving forward.


Issues of Guardianship

Most children with autism need some degree of care even after they reach 18, the age of majority. Many parents choose to obtain adult guardianship of their children after they turn 18, so they can 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, which can give them a valuable stake in their own future.

Note that this is not an automatic process; rather, you must complete a series of steps to legally get guardianship, which varies by state. You should also note that guardianship is a controversial issue. If you’re not yet sure how to proceed, you can read more about it here. Lastly, if you are your child’s legal guardian, it is very important you designate a new legal guardian in your will for when you pass away, so that there is no interruption in care.

You can also choose to have your child made a ward of the state. In this case, you will not have to designate a new legal guardian who will take over responsibility for your child upon your death, which can be easier.


Items to Cover

Before you begin estate planning, it’s very important to think through the following issues so you can 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 do succeed in educational settings, but school is expensive, so it’s important 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 after you pass away is important. For instance, Medicaid recognizes Autism Spectrum Disorder as one that “a developmental disability that can cause significant social, communication and behavioral challenges” and therefore covers it. Knowing the rules so you can get your child signed up for services is important, and also means you need to understand such issues as the difference between Medicare and Medicaid.

Income and Finances: Figuring out how to support an adult child with autism is a challenge for many parents, but two types of income most often come to the rescue: Social Security Disability (SSD, or SSDI) and Supplemental Security Income (SSI). As Disability Secrets explains, “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.” It’s important to speak to a specialist about how setting up your estate can affect either of these services.

Living Arrangements: Your estate should also plan for where and how your child will live after you’re gone.

Safety: Many children cannot look out for themselves, so it’s crucial that you make a plan for their safety. Unfortunately, individuals with autism are much likelier to be taken advantage of, so you have to look out for that.

Decision-Making: Again, your adult child may be able to make some decisions themselves, or they may not. This will depend 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. Similarly, they may need counseling or other services as well, so plan for all.


How to Prepare Your Documents

Making wills and other legal documents for your estate is complicated, but here are the basic steps. Especially if you have a child with autism, however, it’s critical that you ensure your documents are watertight. Therefore, you should seek the help of a lawyer, and notify all stakeholders (e.g. the trustees, siblings of the child with autism, the child themselves) about your desires and how this will look on paper. It’s best not to leave any surprises behind you.


Last Will and Testament

A will has a few main components, explains CNN, including beneficiaries – or 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 progeny, 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. Most likely your child with autism cannot 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. Note that 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.


Durable Power of Attorney

It’s also important to get durable power of attorney. Initially 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 that in 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 is already 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, explains TACA, 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, and 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.

Note that a regular trust is not the same, which is why it’s important to work with estate planning experts who can help you understand the difference. 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. Again, you will probably need the help of an attorney.


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 card to identify themselves in medical and legal situations, and to 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, 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 sit back and breathe a sigh of relief! Your children will be cared for and you’ve done the final act of care-taking as a parent. 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’ll 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.


Additional Resources:

Still wondering about estate planning? Here are a few more great resources you can check out:

Estate Planning: A Guide for Parents with Special Needs Children – CBS

Special Needs Answers – Special Needs Answers

Financial and Estate Planning – Autism Network

Future Planning – Autism Society

Estate Planning – Autism Advocacy and Law Center


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