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Tips to Help You Plan for Your Autistic Child's Future

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Updated June 15, 2014

Once your child with autism is past the age of 18, he is an adult. At 21, the IDEA (Individuals with Disabilities Education Act) no longer applies. Your child is no longer your legal dependent, and fewer options are available for education, therapy, and parental support. What's more, the parents of grown children with autism may be older, and concerned about what will happen to their adult child once they're gone.

It can be tricky, though, to plan for an adult on the autism spectrum. Adults with autism can be complicated people, and many are bright and capable. Yet with all their intelligence and ability, some adults with autism have a very tough time handling the day to day challenges of paying bills, cleaning house, cooking meals, and all the details that go with managing a household.

Mary Anne Ehlert, founder and president of Protected Tomorrows, is an expert in planning for the future of adults with special needs. She offers hints and tips to parents concerned with providing their adult child with autism with the money and support they need to succeed -- with or without their parents' involvement.

To begin thinking about your options and your child's needs, says Ehlert, "You have to be really candid with yourself. What will this person really be able to do on his own?" Depending upon your answer to this question, you have three general options for moving forward.

#1. Of course, parents can do nothing at all, and assume that their adult child will be able to manage his or her life as well as anyone else. For some parents of children with Asperger syndrome or high functioning autism, this is a reasonable choice: their adult child may have the skills and ability to handle daily life and money management. Or, that child may have decided they want no help or support from their parents.

#2. Once children are 18, explains Ehlert, "they are legal adults and make their own decisions. You don't have the right to talk to their doctors, teachers, etc. You can do nothing -- unless your child signs a power of attorney granting them access. But they can only sign power of attorney if they have the capability of doing so." In some cases, adult children with autism are glad to sign over power attorney to one (or, better, two) trusted family members or friends. In other cases, they may choose not to do so. Or, they may not have the capacity to fully understand what a power of attorney entails.

#3. If your adult child is not capable of signing a power of attorney, a parent can go to court to become an adult child's guardian or "limited guardian." If this seems like the best choice, it's important to name a guardian to take over care in case of your death.

Once you've set up your adult child's overall care, it's important to think about his financial future. Social Security and Medicaid benefits may be available -- but only if your child makes UNDER $940 per month AND has virtually no assets. In fact, says Ehlert, though it's legal for your child to own a car and house, it's best to even those items under someone else's name. That's because, if they're sold, your child will suddenly have assets totaling more than $2,000 -- and thus become ineligible for federal programs.

To ensure that your adult child with autism really does have enough money to pay bills and enjoy life, Ehlert recommends that parents set up a Special Needs Trust.

The Special Needs Trust, says Ehlert, "is a document created by the parent -- and anything you put into the trust is usable for supplemental care (clothing, medical care like dental, vacation, recreation). You could buy a condo, have it owned by the trust, and use Social Security money to pay rent and help support other needs." You can create and fund a Special Needs Trust at any time. When you die, the Special Needs Trust goes to another person of your choice who will manage that trust for your autistic child.

Of course, it's critically important that whoever takes over the Special Needs Trust be the right person: someone whom your child knows, trusts, and can confide in. It's also very important that your successor fully understand and agree to the responsibilities of the trust.

Because Special Needs Trusts are complex documents, it's important that families work with a specialist to set one up. Special needs lawyers and even the IRS may be able to provide you with the support you need to create a proper Special Needs Trust for your child with autism.

Sources:

Interview with Mary Anne Ehlert, CFP of Protected Tomorrows

Nash, Shannon. Special Needs Trusts: Estate Planning Is Crucial for Ensuring the Future of Your Autistic Child. Autism Today Magazine, March-April 2003.

Supplemental Security Income page of the Social Security Administration

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