Securing the future of a child with autism takes planning, money

There's a saying repeated in the autism community: "If you know one child with autism, you know one child with autism."

That speaks more to the special support a child on the autism spectrum might require, but it also reflects the financial implications such a diagnosis has for a family. Estimates of the lifetime costs of raising a child with autism range from $1.4 million to $2.5 million, says Adam Beck, professor of health insurance and director of the Center for Special Needs Planning at The American College in Bryn Mawr, Pa. That compares with about $300,000 up until age 18 for a typical child.

“All children have different needs,” says Kathy Sheppard-Jones, executive director of the Human Development Institute at the University of Kentucky. "You have to plan ahead or else you have no plan."

In suburban Washington, D.C., two families illustrate the unique challenges of raising children with autism and other disabilities.

Glen Finland of McLean, Va., wrote the book Next Stop: An Autistic Son Grows Up about her efforts to turn David, 29, into a relatively independent adult. The title refers to teaching him to ride the area's subway system so he could go to jobs, including one as a Washington Nationals baseball usher, and others as a janitor and now in the mailroom of a federal agency.

Nearby in Silver Spring, Md., Kathy and Tom Page are raising two autistic sons, Alex and Devin, and their non-disabled sister. Alex, 24, is non-verbal, has obsessive-compulsive disorder and is prone to violence when upset. Devin, 25, has limited language, perfect penmanship and loves to hug and kiss his 15-year-old sister, Karly, and his mother.

About one in 68 American children have been identified with autism spectrum disorder, according to the U.S. Centers for Disease Control and Prevention. Of the 12 million Americans who need long-term care, about half are under 65, according to a recent report by the Bipartisan Policy Center about looming financing issues. They have many years of care in front of them, meaning they compete with aging Baby Boomers for government funding.

Here are some expert tips to help your child succeed while keeping your family finances intact:

•Decide whether you can afford for one spouse to stay home with the child. Also, take a hard look at what sort of medical treatment he needs and whether he should go to a specialized school or summer camp. Think about diversified portfolios, including funds of varying aggressiveness, and basically plan for retirement with the child in mind, Beck recommends.

• Involve the young adult when possible in discussions about housing, transportation and benefits, Finland says. Even though the Social Security Administration wants consumers to do everything online, she suggests that parents try to make an appointment with a local office for personal assistance — and bring their son or daughter, along with all necessary paperwork. 
• Take advantage of a government shift toward "employment first," says Sheppard-Jones. The federal 2014 ABLE Act, for example, allows eligible people to set up accounts to have a choice over spending related to their disabilities, and receive benefits such as Supplemental Security Income or Medicaid while working and earning money for themselves.
• Decide if you need to assume limited legal guardianship of your young adult with the help of a special needs trust attorney. Guardianship could further stigmatize him, but it also helps protect him from predators. The Pages opened a life insurance policy that will pay into a special needs trust after both parents die. That way, their daughter won't need to be responsible for helping her brothers with any financial needs they have that their disability benefits won't cover. 
• Consult the group Autism Speaks' special needs financial planning tool kit, which is free to download. It includes information on the ABLE Act, special needs trusts, guardianship and many related issues. Autism Speaks is also hosting financial planning workshops funded by the SunTrust Foundation around the U.S. starting June 18 in Richmond, Va. . 

• Make plans for when both parents are no longer around. Plan on having serious chats with reliable friends or family members who might be willing to assume specific parts of the job of financial trustees, Finland recommends. Even with two adult autistic sons, this is easier for the Pages than for most. They have a large extended family in the Washington, D.C., suburbs, with grandparents and many aunts, uncles and cousins. 
• Start early to find affordable, independent housing. Group homes typically have at least a five-year waiting list, Finland says. 

"In the final analysis, there is relief, not dread, in wising up and finding new ways to think about securing your child’s future," says Finland. "And remember, whenever you can, step back to let this young adult make his own choices."