Parents prepare for transition

About 20 parents of students with developmental disabilities listened intently Friday night as they heard the bold truth about life after 22 for their children.

It was the second meeting for the group, which is exploring the realities of life after high school.

Parents were quick to realize that high school is just the beginning. In Illinois, navigating options for adults with developmental disabilities is a challenge.

Structured and customized care is provided through District 709. However, once that student reaches the age of 22, the local option is no longer available.

Dana Ashby, director of special education for District 709, organized a meeting group for parents of children with developmental disabilities to help those making the transition from the school district to the adult world.

“That transition comes upon us quicker than we think,” Ashby said. “You hit the adult service world and you are on your own.”

Ashby said, often, parents are not prepared for the transition, leaving them worried and confused about what comes next.

Illinois provides services and assistance to adults with developmental disabilities, but receiving such aid is far from easy.

It all begins with the PUNS list — Prioritization of Urgency of Need for Services. The list is provided through the Illinois Department of Human Services.

Services provided through the IDHS include in-home support, respite care, training programs, job coaches, residential living arrangements and adaptive equipment.

However, access to such services is limited. Those seeking assistance through the PUNS list are not guaranteed funding.

Jim Runyon, director of grants and funding at Easter Seals, attended the Friday evening round table held in the Morton Education and Administration Center to offer parents advice.

“The war in Iraq and (hurricane) Katrina wiped out our funding,” Runyon said.

Runyon explained that the best way for parents to receive assistance or funding was to either create microboards or develop a not-for-profit organization to receive grants.

Currently, the PUNS list includes 18,000 names of people seeking funding for individuals with developmental disabilities. That number increased from 3,000 names in the past two years.

According to the Illinois Department of Human Services, those on the list are selected to receive assistance on a prioritized basis. Illinois has been providing funding to about 40 people every six months.

“In order to get an individual into PARC, TCRC or Apostolic Christian Timber Ridge, the individual needs to be selected from the PUNS list,” Runyon said.

“We’re not all funded and that’s the challenge,” Ashby added. “When your name comes up, your name comes up.

“It has become a waiting list by default.”

The list is growing much faster than the number of individuals receiving services, Ashby said.

That has left a lot of parents wondering if they will ever receive assistance.

Bob and Radene Riddle of Morton are preparing their student for the adult system, but they have a lot of questions and concerns.

“It’s really kind of an unknown,” Bob Riddle said. “We’re not going to be government funded.

“Right now, it’s not foreseeable that we’ll ever have any funding. Illinois is right at the bottom as far as post-education (for individuals with developmental disabilities).”

That is why the two attended Friday night’s meeting. They are trying to discover the best avenues to provide their child with assistance.

“We’re going to have to provide (care) ourselves is really what it comes down to,” Riddle said.

But, for working families, being able to provide that constant care is difficult.

Ashby said her biggest concern is that many of the students currently enrolled in District 709’s special education program will lose much of what they learned if they have nowhere to go and nothing to do following graduation.

“My biggest concern is that they’re going to be sitting at home, alone, eating and playing video games,” Ashby said. “They’ll lose that education.

“When you are isolated, you lose your social skills.”