Adults and autism: Our kids might outlive us

When my husband and I visited our son in his group home recently, I couldn’t get over how much he had grown. He’s a healthy boy! Well, really –- a healthy young man. And though many of us who have children with disabilities don’t like to think about it, it’s likely our children will outlive us.

While most people know about wills, few are well-versed in special legal and estate-planning matters when it comes to benefactors who have disabilities. My husband and I set up a special needs trust when our son was still in grade school. Our son will turn 21 this year –- taking a look at that document again is on our “to-do” list … we need to make sure nothing changes now that he’ll be an adult.

With your hands full trying to raise and advocate for your child, it’s hard to find time to prepare for one very likely possibility: a child with autism might outlive both parents.

The National Information Center for Children and Youth with Disabilities, a federally funded clearinghouse in Washington, D.C., offers estate planning advice when a child has a disability.

I found two pieces of advice from their list especially helpful:

  • Find a lawyer who specializes in legal and estate-planning matters for people with disabilities. For referrals, contact a local disabilities group or your local bar association.
  • Ask your lawyer about a “special needs trust” or similar arrangement that enables parents to leave assets for a child’s long-term needs and still preserve the child’s eligibility for valuable government benefits such as Social Security payments, health care, subsidized housing and personal attendant care.

It’s hard to add yet another thing to a “to-do” list, especially when it concerns something as morbid as death! But knowing our son has a special needs trust set up for him gives my husband and me some peace of mind.

Mass Mutual, one of Easter Seals’ national corporate partners, offers additional resources for people with disabilities and their families.


Comments may not reflect Easterseals' policies or positions.

  1. bonnie Says:

    of all the things we parents of special needs adults face–and there are many things everyday–the recurring thought of what will happen to my child when i am gone is the one that provokes the most anxiety–and the fewest answers, let alone the least resolve. many of the things we hear about are complex and in a foreign language–like special needs trusts. (ie, who pays the taxes? are there taxes? how do you name the trust? who should be the trustee (s)? can you put an inheritance in it?)
    and i am a lawyer. so if i’m confused, i can imagine how others feel. plus the whole subject is so loaded with emotion, existential angst and fear of the future and the unknown, even if you can understand the stuff, you can’t because you are so distracted with worry!!
    there should be thorough classes for parents in our situation–NOT just a one-hour freebie at a lawyer’s office that works as a come on. but a thorough class (or classes) that answer every question and cover every contingency. there must be some knowledgeable lawyers out there who would like to make money by giving a comprehensive class like this!!??!! right?