Families seek help for children with disabilities
March 17, 2008
By Janna Odenthal Post-Tribune correspondent
For families with special needs, hope often melts into years.
Those who applied in June 1998 for Medicaid waiver assistance for disabilities were put on a waiting list. This month, nearly 10 years later, some finally are being approved.
Opportunity Enterprises recently hosted a new support group, Family and Friends Together. This month featured the Medicaid waiver services program.
In a room nearly filled to capacity, fewer than 10 raised their hand to show that they were finally off the waiting list and approved to receive services.
South Haven resident Karla Pettett has been waiting seven years. She said she came to the meeting to hear answers to people's questions. Her 7-year-old daughter, Kara, needs a wheelchair and feeding tube.
"We all want to see the light at the end of the tunnel," Pettett said. "The system is so confusing that it's hard to even know what is available to you unless you hear it from a friend.
"Sometimes I don't even know the right questions to ask to get the answers that I need."
Pamela Barlow and Demetris Cole, service coordinators from the Bureau of Developmental Disabilities Services, explained how the waivers for autism, developmental disabilities and support services serve to assist a person to be as independent as possible.
They described how some of the features could include payment for medical services, therapy, respite care, crisis assistance and more.
They also attempted to explain the process of applying and gave advice on how to prepare.
Brenda Darrol, an Arc Network family advocate, attended the meeting. Her 14-year-old daughter, Angela, has been on the waiting list since 1998.
"We received notice just last week that Angela is being taken off the waiting list," Darrol said. "It is a relief, but, at the same time, I know there are thousands in Indiana still waiting. They deserve to get what they need, too."
Resources and references were offered by Barlow and Cole for those seeking further information regarding specific situations.
Kouts resident Paul Rhodea said he is trying to find a job in the community for his 17-year-old daughter, Rachel, mentally disabled since birth.
"It's bittersweet; we all have to adjust our expectations of our dreams for our kids," Rhodea said. "But when we accept the realities, then we can begin to educate ourselves and others."
Gary Mitchell, president of Opportunity Enterprises, encourages parents to do whatever it takes to get services for their sons and daughters.
"Go after it; go after it extremely hard," Mitchell said.
For more information
What: Family and Friends Together support group meeting
Where: Opportunity Enterprises, 2801 Evans Ave., Valparaiso
Contact: John Seibert, vice president, 464-9621 or www.oppent.org
