When it comes to the financial future of their child with autism, many parents and caregivers are so daunted, overwhelmed, or fearful of making the wrong decisions, they put off the first step.
Steve G., of Yardley, PA admits that the financial security of his son, Simon, 17, who has autism, seemed like something to handle in the distant future, not while he and his wife, TeriLyn, were embroiled in Simon’s day-to-day personal and educational issues.
But a trip to China in 2007 to complete the adoption of their now-12-year-old daughter led to questions about guardianship, life insurance and how to pay for their son’s education and other needs.
Five years later, a plan for Simon was put in motion with the help of Pat Bergmaier, a special needs financial planner.
“What has always given us enough energy to push forward with these issues is realizing that you need professional help with every facet of raising a child with special needs,” Steve says.
More than a trust
Bergmaier, a local certified financial planner for 13 years, says financial planning for a typical child is much different from planning for a child or adult with special needs. Investment decisions, he notes, must be made based on the life expectancy of the child.
“You are planning for the retirement of three — mom, dad and the lifetime of the adult child with special needs — so how to invest and the types of investments that are made are based on planning for income for the rest of all of their lives,” he says
Bergmaier, whose office is in Conshohocken, PA, says families often think that the creation of a trust with an attorney is enough.
“They think once they have created their special-needs trust, they are done,” he says. “But the legal documents need adequate financial resources — assets, money and/or real estate — to flow into it.”
A special-needs trust is a legal arrangement and fiduciary relationship that allows a person with physical or mental disabilities, or a chronically ill person, to receive income without reducing their eligibility for the public assistance disability benefits provided by Social Security, Supplemental Security Income, Medicare, or Medicaid. It is a popular strategy for someone who wants to help a family member in need, but not make them ineligible for programs that have income or asset limits.
Start when they are young
Bergmaier wishes more parents started financial planning when their child is between 3–10 years old. “Don’t wait to see if your child is going to be higher functioning,” he says.
Bucks County, PA attorney David T. Siegel, who is licensed in Pennsylvania and New Jersey, says that every family has its own dynamic so its financial and healthcare needs will be unique.
“I start by learning about the person’s life, the benefits he currently receives and the benefits he is trying to receive for the future,” he says.
One constant, however, is that parents need to name a power of attorney or guardian for an adult child with autism. Siegel has had guardians appointed for adults with special needs from ages 18 to 60.
Siegel says the team of an attorney and a financial planner can handle 99 percent of the legal, trust and financial concerns.
“It’s not as hard as parents think it is,” he says. “It is a complicated procedure where a process has to be followed. But like anything else, people can build things up in their head to make it harder than it really is.
“The hardest part for most of my clients is making that initial phone call.”
If not you, who?
Bruce Sham was one of the first financial planners in the nation to receive the Special Care Planner designation 14 years ago from The American College of Financial Services in Bryn Mawr,PA. During his frequent presentations for parents, Sham focuses on how they can protect their family members’ Social Security and other government benefits as well as their education/training, employment, religious/ social life, safety and medical care.
Sham, with MassMutual Greater Philadelphia, which has offices in Pennsylvania, New Jersey and Delaware, also emphasizes “the earlier the better” to start financial planning for a child with special needs. “It can be too late if the special needs individual becomes age 65 and a special needs trust was never set up.”
He knows that parents who fear making financial-planning decisions for their child with special needs often take a wait- and-see attitude.
“If you don’t do it, nobody else is going to,” Sham says. “The local schools are responsible for the child until age 21. The government is concerned that the child has food and housing.
“All other quality-of-life issues must be addressed by the family through the establishment of a special-needs trust.”
Sham urges families to “please take that responsibility and do this for your child or adult with special needs.
“We get to be the voice for someone who may never have a voice on these vital decisions that are made on their behalf.”
Debra Wallace is a Huntingdon Valley, PA–based freelance writer.