MEDICAID

people with disabilities, Biel got her child in line early — as a toddler — just in case.

“I’m one of those thousands and thousands of parents who was told, ‘This is what you do,’” said Biel, who lives in Worthington.

The waiting list is now some 49,000 people long. State and county officials and many advocates say it’s become more of a haphazard compilation than accurate representation of the children and adults who most need help.

Biel agrees. She’s part of a “Fix the List” coalition that helped craft a proposed rule that spells out new waiver waiting-list requirements and procedures, including an assessment tool to determine eligibility. For years, individuals and families have been able to add names to the list on their own with little or no input from service coordinators.

The median wait time for a waiver in many Ohio counties exceeds six years. Most other states also have waiting lists for the highly sought waivers, which allow people with disabilities to get support such as personal care and homemaker services while living in their communities instead of the residential centers known as ICFs, or intermediatecare facilities.

“Do I think it’s perfect? No,” Biel said. But she sees the proposed Ohio Department of Developmental Disabilities rule, which had its first public hearing Thursday, as a big improvement.

“I’m an advocate for a need-based waiting list,” said Biel, who also has two sons with disabilities. “In my opinion, my daughter is taking up a space that maybe one of those other 49,000 people might need more.”

Reform proponents say the current system is confusing for families, some of whom feel as though they have to jockey for position, seeking priority status in order to leap ahead. Others might put their names on the list not because they need in-home services but because a waiver also extends Medicaid health coverage to a child with disabilities — regardless of family income.

“When you have a system that’s perceived to be so subjective, then people are going to try to get themselves in the best position,” said Steve Beha of The Arc of Ohio, an advocacy organization for Ohioans with disabilities and their families. “We haven’t taken steps to triage our lists.”

Beha has a 3-year-old son on the waiting list in Fairfield County. “I have no earthly idea of when he’s going to get a waiver,” he said. “The list is in such flux.”

Jed Morison, superintendent of the Franklin County Board of Developmental Disabilities, said the list has included people who aren’t even eligible for Medicaid-waiver services.

Not all advocacy groups support the proposed changes. Disability Rights Ohio submitted testimony that said the proposed rule misses the mark by focusing on managing the list instead of broad changes to the system, such as better pay and training for direct-support workers, expanded funding for waivers and making sure people have “real choice” about the services they receive.

Addressing those problems, executive director Michael Kirkman said, would eliminate the need to “fix the list.”

The Ohio Olmstead Task Force also withdrew its previous support, saying a recent change to the proposal seems to require counties to talk to waiting-list candidates about non-waiver, “institutional” options such as ICFs.

“This language forces individuals and families to reconsider their choice of communitybased services due to lack of available resources,” Renee Wood, the task force chairwoman, said in written testimony.