Celeste Chippero moved from Michigan to Georgia feeling confident she would find support services for her son Peter, who has cerebral palsy.
Instead, her now 32-year-old son has spent the last five years on a waiting list for services through a Medicaid program for people with intellectual and developmental disabilities, which now includes more than 7,000 people.
“The greatest fear as a parent: What happens when I’m gone? We need programs that support the severely disabled,” Chippero said, her voice breaking. “And that aren’t warehousing them or institutionalized. He deserves a life where he can enjoy the things that he does. He can still learn, and he is a joy, and he should be a part of the community.”
State lawmakers funded 513 slots at a cost of $10.3 million in this year’s budget, and in July, the first month of the new budget year, 31 people gained access to waiver services in Georgia. About 42 people each month would need to gain services over the course of the year to fill all the newly funded spots.
But the push to more aggressively fund the waiting list has been slowed by the realities of a workforce that was strained long before the pandemic-spurred worker shortages. For people with disabilities, that means accessing waiver services may not necessarily mean receiving help.
“We’re in a situation where we have two waiting lists,” said state Sen. Sally Harrell, an Atlanta Democrat. “We have the first waiting list for being approved for the waivers, and we have the second waiting list to find the service providers.”
Harrell is co-chairing a study committee this fall with Republican Sen. John Albers that is examining what needs to be done to avoid that wait to find the direct service professionals who assist people with daily tasks like eating and bathing but also help them make their own choices and live and work in the community. The committee is expected to issue recommendations.
The panel, which includes lawmakers and representatives from state agencies, heard Wednesday from service providers stretched beyond their limits and family members desperate for help.
“I think we are absolutely in an emergency situation,” Harrell told reporters after the meeting.
Worker wages – based largely on Medicaid reimbursement rates – have been pegged as the primary culprit for frequent turnover and employees leaving for other jobs. In Georgia, the average hourly rate for a direct service professional is about $11.
Ryan Whitmire, president and CEO of Developmental Disabilities Ministries based in Norcross, said he is losing workers to Amazon warehouses. Whitmore said his organization plans to close a home in Tucker to relocate the available staffers.
“It’s not a level playing field anymore, and it’s a very challenging job,” Whitmire said.
State leaders last year approved a small 5% rate increase for providers at a cost of $12 million, and they included another 2% increase at a cost of $5 million in this year’s budget.
The state Department of Behavioral Health and Developmental Disabilities is currently doing a comprehensive rate study, which is expected to be finished by the end of the year.
Diane Wilush, president and CEO of United Cerebral Palsy of Georgia, said she expects the study to show that a sizable investment is needed to pull pay rates up to where they need to be.
She is hopeful state lawmakers will make a “good faith down payment” to get rates up to $15 per hour this coming legislative session, which begins in January. But she is urging legislators to fully fund the study’s recommendations the following year – and then plan for cost-of-living increases to keep wages from falling behind again.
“Don’t piecemeal it. Don’t say, ‘Well, we’ll do this much this year and this much this year.’ They’ve got to do it comprehensively,” said Wilush, who is also a board member of the state Service Providers Association for Developmental Disabilities.
“We’re paying the piper for neglect and negligence of this sector of our population for 30 years. This is the aftermath of not routinely addressing the needs of this population. But everybody tells us how admirable our work is. Well, Publix doesn’t take admirable,” she said.
The rapidly rising housing costs are another barrier, particularly in areas like affluent north Fulton County, said Whitney Fuchs, CEO of InCommunity.
“The availability of housing for the people that we employ is key,” Fuchs said. “Because without that housing, they’re going to be traveling long distances to get to where they are. Our folks that work in North Fulton, they come from Conyers, they come from Fairburn, they come from Union City. They’re driving 40 and 50 miles each way every day for a salary of $12 an hour.”
This story was written by Jill Nolin, political reporter at the Georgia Recorder, where this story first appeared.