‘Sophia’s Gift’ gives in Niles

Focus placed on legal and financial planning for those on spectrum

NILES -- Many parents and families deal daily with the minutiae and inherent challenges of meeting the needs of a child with autism, which can make it easy for them to overlook or give little thought to the long-term picture.

Long-term planning can be daunting and grim if the proper procedures and planning are not in place -- especially if a parent or other caretaker dies.

"A special needs estate plan can cost as much as $3,500 or more, depending on the complexity of the needs," Robin Suzelis, the Autism Society of the Mahoning Valley's president, said.

To make such unpleasant yet necessary arrangements easier, the ASMV hosted an inaugural Sophia's Gift Family Trust Project and Wine & Chocolate dinner event Friday evening at the Von Isley Estate, 547 S. Main St.

The gathering was named in honor of Sophia Austalosh and her single father, Scott Austalosh, who had been diagnosed with cancer.

A main priority is to help families of someone on the autism spectrum with legal and financial planning, as well as set up emergency funds.

The ASMV also hopes to provide grants as funding becomes available, Suzelis said, adding that no fundraising goal had been set for the dinner.

The three pillars the fund hopes to establish are educational workshops to allow parents to better understand guardianships, trusts, stable accounts and other such matters; a grant program for families to work with local attorneys and financial experts to set up needed trusts and other documentation; and disaster care grants that would offer financial assistance for families going through sudden and catastrophic needs, Aundrea Cika Heschmeyer, the ASMV's board chairwoman, said.

"Scott was diagnosed with cancer. He has been the parent (to Sophia) since Day 1," she said.

Many families with a child or adult on the autism spectrum run into complicated financial situations. For example, the person on the spectrum who's receiving Supplemental Security Income could become the recipient of another source of income and lose the SSI benefits, Heschmeyer said.

That's merely one example of why it's imperative to establish trusts and develop a firm plan for when a parent may die or is no longer able to care for the person on the spectrum, she stressed.

"We need more of a safety net. That's what we're doing tonight," Heschmeyer said, referring to the overriding

purpose of Friday's gathering.

Further complicating matters for many families is having to pay for expensive therapies that insurance may not cover, Heschmeyer said, adding that the divorce rate among families with a person on the spectrum is about 50% higher than it is for neuro-typical families.

Also at the dinner was Chris Banks of Rockville, Maryland, the Autism Society of America's president and chief executive officer.

"We're celebrating what's occurring here (in the Mahoning Valley) and the work of the Autism Society of the Mahoning Valley," he said.

"The community comes out to support the community."

Specifically, Banks was referring to the ASMV's advocacy, support to families, social services and information-and-referral capabilities, he said.

The ASA, founded in 1965 by Bernard Rimland, Ruth C. Sullivan and a small group of other parents, seeks to support the needs of the ASMV and other affiliates nationwide, of which five are in Ohio, Banks said. He noted that each day in the U.S., someone is diagnosed with autism.

"It's a great night to say, 'We see you from Washington, D.C.,'" Banks added.