Planning for the Future of an Autistic Child: What Parents Need to Know

According to Autism Speaks, an organization dedicated to raising awareness and advocating for those with autism spectrum disorder (ASD), nearly 50 percent of 25-year-olds with autism have never held paying jobs — and most of those who have held paying positions earned a median weekly rate of just $160. Of those who held paying jobs, about 80 percent worked part-time versus full-time. In addition to these general employment concerns, many adults with autism may be at risk of developing mental health conditions that could affect their ability to work and earn a living in adulthood. Among the mental health issues affecting those with ASD include conditions such as anxiety, depression, and bipolar disorder. 

With this information in mind, there are several things parents need to do early on to ensure that their autistic child will be well-cared for in adulthood — even in the event that they cannot physically provide for their child in the future. To learn more about the steps parents can take to plan for the future of their autistic child, read on. 

Appoint a Legal Guardian for Your Child

As a parent to a child with autism, you likely plan to provide for your child for as long as you possibly can—even in the event that you die or become incapacitated in a way that prevents you from doing so. To ensure that your child will always receive the care and guidance he or she needs, one of the first things you should do is appoint a guardian, power of attorney, or health proxy, as this trusted adult can help your child to make important financial, legal, and medical-related decisions in the event that you cannot do so in the future. However, the type of guardianship you choose will typically depend on where your child falls on the autism spectrum. 

Open a Special Needs Trust

In addition to appointing a legal guardian for your child, opening a Special Needs Trust will provide your child with the monetary assistance he or she will one day need to pay for new clothing or furniture, therapy or support services, medical and dental assistance, transportation costs, and other expenses that will enhance his or her quality of life. However, Special Needs Trust benefits cannot be used to pay for most housing or food expenses, as this could jeopardize your child’s eligibility for certain public assistance programs like Medicaid. 

To open a trust for your child with autism, look for a specialized attorney whom you trust and feel comfortable working with. If not opened properly, your child could become ineligible for Medicaid, Social Security Disability Insurance (SSDI), and other types of government benefits. 

Purchase Final Expense Insurance

When you’re a parent to a child with autism, it’s important that you plan for your own final expenses, as this will keep your child from having to tap into his or her savings funds in the event of your death. By purchasing a final expense insurance policy early on in your child’s life, your child will receive coverage for the following in the event of your death:

• Your funeral expenses
• Your final arrangements
• Your outstanding medical bills, mortgage payments, and other debts

If you’re thinking of purchasing a final expense insurance policy, keep in mind that your premiums will be lower the younger you are when you apply. You probably won’t need to undergo an examination when you apply, but you will need to answer several questions about you and your family’s medical history.

Grieving the loss of a loved one is emotionally challenging for all humans, but grief is even more difficult for children and adults with autism. However, there are several things you can do now to help your child cope when you can no longer care for and support him or her. The more you can do today to provide for your child in the future, the better your child’s quality of life will be when you’re unable to be there for him or her in the future.

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Patrick Young

Patrick Young is an educator and activist. He created Able USA to provide advice and help to others navigating the challenges of life that come with having a disability.