'Boot Camp' for parents of kids on autism spectrum focuses on transitioning to adulthood

By Annie Gentile - ReminderNews
Willington - posted Thu., Apr. 11, 2013
Chera Gerstein, an ASRC board member and a financial planner with Willis of Connecticut, discussed the important role of financial planning for long-term care for parents and caregivers of special needs children. Photo by Annie Gentile.
Chera Gerstein, an ASRC board member and a financial planner with Willis of Connecticut, discussed the important role of financial planning for long-term care for parents and caregivers of special needs children. Photo by Annie Gentile.

The fourth and final session of the Parent Advocacy Boot Camp for parents and caretakers of children on the autism spectrum was held Saturday, April 6, in the Community Room at the Willington Public Library.

Presented by the Success Special Education PTO and Autism Services and Resources Connecticut, the session addressed the challenges involved in transitioning children from the school system into adulthood, and how parents and caretakers can best prepare their children for the future.

“It’s a whole new world when our children move out of the secondary school system,” said Carol Barans, a transition consultant with ASRC and parent of a young adult with Asperger’s syndrome. “There is no one telling your child what to do every 45 minutes. They need to learn to take initiative - and they need vocational training.”

One of the most important aspects of the changes, Barans said, is that while special education services are an entitlement, once a person reaches the age of 21, they must first prove they are eligible for services, and then, whether or not they can receive such services is based on what is available. She said it is important for parents to begin talking about the transitioning process in the early years of high school and to help their children begin to have some work or volunteer experiences while still under the high school umbrella. “This is why advocacy is so important,” Barans said.

“Any student with an [Individualized Education Plan] is entitled to transition services from their school until they are 21,” said Barans. “Education is broader than simply academics, and many school districts offer community-based training programs,” she said. By putting off accepting a high school diploma for a couple of transitioning years, she said special needs students can get a variety of extended services, including assistance with enrolling into a community college, job-shadowing experiences, mentors and internships. “If your school system is not flexible on that, then you need to push back. You need to reassert what your child needs,” she said.

Barans said one of the greatest hurdles in securing and maintaining employment for young people on the autism spectrum is not performing the actual job, but developing the all-important “soft skills” required with any job, such as staying on task, doing the less enjoyable aspects of their jobs, accepting constructive criticism, and developing workplace social skills. “With a lot of these soft skills, we take for granted that the average kid will just develop them, but with kids on the spectrum, we often have to teach them,” she said. To illustrate her statement, she described having to provide step-by-step, explicit instructions on how to clean a bedroom, or how to do laundry.

The second portion of the session was led by Chera Gerstein, an ASRC board member and financial planner with Willis of Connecticut. Gerstein’s talk navigated the often complicated world of Special Needs Trusts, government programs, insurance, conservatorships, and wills.

“Nine out of 10 parents of children with special needs do not have sufficient financial plans for their children because they are so busy dealing with day-to-day crises, they can barely keep their heads above water,” said Gerstein.

With the lack of sufficient programs and high costs of services in general for adults with special needs, Gerstein said it is critical for parents of special needs children to maintain their children’s eligibility for government benefits whenever possible. Because eligibility for government assistance is often based on financial need, this can mean making sure that their child has no financial resources in their name.

As a parent of a young adult on the autism spectrum who also has a seizure disorder, Gerstein said parents cannot feel guilty about any efforts they make to ensure their children stay eligible for government programs. She said if she had to pay for the services and medications for her adult child on her own, it would cost upwards of $250,000 a year. “We’re all fighting for that same piece of the pie,” she said.

All Success SEPTO meetings are held in the Community Room at the Willington Public Library. The April 17 meeting will begin at 6:30 p.m. and feature a presentation by Kevin Daly, a special education consultant and parent advocate, entitled “Understanding Special Education Records.”  The May 15 meeting will be held at 6:30 p.m. and will be a question-and-answer forum addressing state changes with the Connecticut Department of Developmental Services.  For more information, e-mail info@successsepto.org.


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