Parents Prepare Children With Autism For Adulthood
HUTTO, Texas — Mark Lyons was recently looking over the books of the mail order sock company he and his wife, Sally, started in 2020. They hope the home-based business will someday support their son Samuel, who is 25 and has autism, once they’re no longer living. The numbers, he concedes, don’t look good.
“Sammy’s always on our minds,” said Mark, standing outside a guest room overtaken by an inventory of more than 6,000 pairs of socks in 45 splashy designs — from the Stars and Stripes and dinosaurs to Texas wildflowers and cats in boxes. “He’s pretty severely autistic and he’ll need someone to look after him for the rest of his life.”
The company is averaging only about two orders per month, more whenever a local paper or TV station runs a feel-good story on the company, called SammySocks Etc. But once the hoopla dies down, so do sales. And the couple — he’s 68, she’s 62 and both are retired educators — don’t have the resources to run extensive online advertising or direct mail campaigns.
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The challenge of finding a way to ensure that an adult child with autism will be able to live well and safely after mom and dad are gone is one faced by many families of people with autism spectrum disorder.
There are an estimated 5.5 million people in the United States with autism and about 1.3 million of those live with a parent or guardian over age 60, according to “A Place in the World,” a report on the housing crisis faced by those with intellectual disorders. Medical advances such as drugs to treat depression, anxiety, obsessive-compulsive disorder and similar conditions that affect those with autism, as well as a more acceptance and understanding, have together helped increase the life expectancy of this population that now approaches that of the general population.
“It used to be people with autism were put in an institution,” said Tamar Heller, director of the Institute on Disability and Human Development at the University of Illinois at Chicago. “That doesn’t happen as much anymore.”
Yet despite such advances, once these people reach adulthood, they often have difficulty supporting themselves. Approximately 75% of people with autism are unemployed or underemployed, according to the Bureau of Labor Statistics.
“Whatever their capability, most parents want their adult children to live in the least restrictive environment possible,” said Kayla Wagner, chief executive officer of As You Are, which provides diagnoses and guidance for families of children with autism. “And the earlier the child begins getting treatment, the better the odds they’ll reach their maximum potential.”
Sammy’s parents began getting him help when he was 4 years old, shortly after he was diagnosed.
They had little idea where to turn, and so often relied on other parents for advice.
“I’d talk to other parents in waiting rooms while Sammy was in therapy,” Sally said. “Their kids were older and they’d already gone through what we were doing. It was helpful because you don’t know what you don’t know.”
They started Sammy on speech, occupational and horseback riding therapy as quickly as possible while also signing him up for various government programs, which often have waiting lists that can stretch for years. And they became familiar with nonprofit organizations such as Texas Parent to Parent, which provides support, information and education for families of children and adults with disabilities.
Most of the organizations focus primarily on young children. By the time a person turns 18 or even 21, they’re no longer eligible for many of these programs and must rely on government agencies for help.
Today, for example, Sammy is on Medicaid and Medicare, he receives Supplemental Security Income benefits and food stamps and he recently began getting his father’s Social Security family benefits.
Sally home-schooled Sammy until he was in seventh grade, when, like a lot of kids that age, he started rebelling (“He didn’t like me anymore,” she said sarcastically). So they enrolled him in public school where, once he was put into a regular special education class, he blossomed.
“He even loved riding the bus to school, which I never thought would happen,” she said.
After Sammy graduated high school they enrolled him in a program run by the local school district where he learned household and job skills, at one point selling cookies and donuts in the district administration building. But he aged out of that program when he turned 22.
After years of support, Sammy can read at just above a third-grade level. He can prepare food in the microwave and bathe himself, but he still needs help shaving and toileting. He is still almost entirely dependent on his parents for his day-to-day living, which is why they started looking for a home-based business to help support him.
For most parents, their child’s financial well-being is perhaps their single biggest worry, especially as the child approaches adulthood.
“When you have a child you expect to support them for 18, maybe 21 years,” said Fernandez. “When you have a child with autism, you may be responsible for them for as long as you’re alive.”
It’s never too early to begin making financial arrangements for these children, according to Melanie Rios, director of programming for Any Baby Can, which assists families of children and youth with special needs.
“Parents should consider setting up a special needs trust, a living will and a power of attorney for their child,” she said.
She recommends working with an attorney who has experience working with those with disabilities because if something’s not done right it could jeopardize their eligibility for government assistance.
Sharon and Hal Carlson are already in the process of setting up such a trust for their 14-year-old son Kyngston, whom she describes as “high functioning.” They’re also exposing him to as many experiences as possible to prepare him for the world after high school.
“We take Kyngston out of his comfort zone as often as we can so that he knows how to cope in all environments,” said Carlson, chief deputy in the Comal County Tax Office. “He recently wanted to re-establish an art club at school that had come to a halt due to COVID. We coached him on what to do and who to go to. The middle school now has an art club again. And last year, he did his first solo in choir. He was so nervous but he did an amazing job.”
Finding such opportunities takes research and networking, according to Jessica Cloutier, senior vice president at BlueSprig.
“Think of it the way you would if you were looking at colleges, reading directories and reviews and visiting campuses,” she said. “You want to find the place where your child will have the best chance to succeed.”
For now, Mark and Sally’s plans for Sammy’s future remain unresolved. Medicaid would pay for him to live in a nursing home or a similar institution, but that’s not what they want for him. Mark’s niece, a nurse practitioner who lives nearby, has agreed to take responsibility for him and her brother has agreed to help.
But because they don’t want to financially burden her with his care, they have what they call a “pie in the sky” plan: Mark’s $1 million life insurance policy has Sammy as the beneficiary.
With that kind of money, they could fully fund Sammy’s special needs trust fund that currently contains just $10 and be assured that he’d always have enough to pay for a full-time caregiver and a place to live. There is, however, one caveat:
“The policy goes away when I turn 79,” Mark said. “And yes, there are times that I hope I don’t live that long.”
© 2023 San Antonio Express-News
Distributed by Tribune Content Agency, LLC
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