AJC - Forum Thursday night for parents of special-needs adults

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http://www.ajc.com/metro/content/metro/gwinnett/stories/2007/11/28/transition_1129.html

Seeing 'a reason for life'

Forum Thursday night for parents of special-needs adults

By LAURA DIAMOND

The Atlanta Journal-Constitution

Published on: 11/29/07

Amy and Castaline wanted their son taken care of. They hoped he could spend his days at a place where he could learn new skills and meet people.

Accomplishing this goal wasn't easy for the Castalines. They said parents need to be patient and learn some important strategies, many of which will be discussed during a public forum tonight.

EDUCATION FORUM

The Atlanta Alliance on Developmental Disabilities will host a forum on issues that parents of special-education students should be aware of as they plan for life after high school. Speakers will discuss what services are available, how to apply for assistance to pay for the services and other topics.

The free event will be held from 7 p.m. to 9 p.m. Thursday at the Oakland Meadow School, 590 Old Snellville Highway, Lawrenceville.

For more information go to: www.aadd.org or www.unlockthewaitinglists.com.

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Their son, Adam, is a 24-year-old man with the mental capabilities of a 2-year-old boy. He has cerebral palsy and is intellectually disabled. He spends most of his time in a wheelchair. Someone must help him dress, bathe and use the toilet.

Adam Castaline went to school for most of his life, but that changed when he turned 22. Under federal law, he was too old to continue at the Oakland School, one of Gwinnett County's centers for students with disabilities.

The Castalines planned for him to transition to a day program at the Hi-Hope Service Center in Lawrenceville for adults with disabilities. They said the center costs more than $1,000 a month and, like many families, they can't afford it without help from Medicaid-funded waivers.

Amy Castaline put her son's name on a list to receive one of the waivers about five years before he left Oakland. She thought that would be enough time. It wasn't. The waiver didn't come through until March — about seven years after she applied.

Between the time that Adam Castaline left Oakland and received the waiver, he had nowhere to go. He sat at home. He watched television. The only people he saw were members of his family. Frustrated, he often wheeled himself to the front door and shouted "Out!"

"He was unhappy and I could tell he was losing the skills he learned in school," Amy Castaline said. "Who would want to sit at home all day and just move from one room to another? When you have nowhere to go, you don't see a reason for life."

The Castalines' experience and other issues associated with special-needs adults will be discussed during a forum from 7 to 9 tonight at the Oakland Meadow School, 590 Old Snellville Highway, Lawrenceville.

About 6,000 Georgia families are waiting to receive one of the waivers, which reimburse families for services from 24-hour residential services to day programs and respite care. Some families have been waiting 25 years, said Dave Blanchard, director of public policy for the Atlanta Alliance on Developmental Disabilities.

Families have a long wait because the state has not set aside enough money to meet the need, Blanchard said. The situation has improved over the past three years as Georgia increased the money available to families, he said.

The need will only increase.

Every year, about 700 special-education students "age out" of public school programs and will need support from the state, Blanchard said. He said that demand is compounded by aging care-givers — the thousands of adults over the age of 60 who are caring for special-needs children.

Amy Castaline encouraged families not to give up hope.

"You need to keep advocating for your child," she said. "You need to make the phone calls. You need to tell everyone your story. Eventually it will work out."

At Hi-Hope, Adam receives lessons on how to use a walker-like device that would give him more mobility. He's learning life skills, such as handling utensils during meals. He goes on field trips and eats lunch in mall food courts. Soon he'll learn alternative ways to communicate, as he is mainly nonverbal.

Amy Castaline said her son now has a life.

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