Homes that care for Georgians with intellectual and developmental disabilities are closing down. Agencies that serve this vulnerable population can’t retain staff members. And thousands of residents with disabilities are still vying for services, some of whom have been waiting for years.
For nearly four hours on Wednesday, speaker after speaker delivered a dire message to a Senate study committee on people with intellectual and developmental disabilities: the state’s system for serving these people is in crisis, and without more funding the conditions will only worsen.
“I definitely feel the urgency,” said Senator Sally Harrell. “We are absolutely in an emergency situation.”
According to comments the committee heard, more than 7,000 people are still on a waitlist to receive a waiver in exchange for services that would allow them to leave institutions or remain in their homes. But the state has only funded a fraction of the waivers that are needed. On top of that, changes in the job market have led to a severe shortage of caregivers, who are exiting the profession for better wages in the retail and fast-food sectors. This means that even people who have a waiver are unable to get the services they need right now.
John Zoller knows the issue firsthand. His 35-year-old daughter, Katie, is one of the lucky ones who has a waiver. But since the pandemic started, he’s been unable to find the around-the-clock care that his daughter is entitled to, given the limitations on how much these caregiving staff are paid.
Zoller said he’s lost in-home caregivers to Amazon distribution sites, and fast food places like Quiznos and McDonalds.
Zoller pointed out that a restaurant “can raise the price of a burrito” in order to pay people a better wage. “I can’t. If no one shows up to work, I can’t provide services to my daughter.”
The meeting, held in the state Capitol, was the first of several committee sessions that will examine the services for people with intellectual and developmental disabilities in Georgia.
The crisis is not isolated to Georgia. Nationally, the number of caregivers serving people with disabilities has dropped dramatically in the last few years. The U.S. Department of Labor Statistics estimates that the field has shed some several hundred thousand jobs since the early days of the pandemic.
Diane Wilush, president and CEO of United Cerebral of Georgia and South Carolina, said that due to the mass exodus of workers, the system is being held together by a “shoestring of dedicated intellectual and developmental disabilities providers.”
“Without a reliable, well trained, committed and competitively compensated workforce, nothing that the committee recommends will have the intended consequence of improving the system because we don’t have the staff to deliver the services,” she said.
Georgia officials have taken some steps to address the issue in recent months. The state has supported a temporary boost in pay for care providers, and is funding an expansion of a waiver program that is a key way that people with disabilities can get support. In total, about 13,000 people with disabilities have waivers that pay for care in their homes or for them to live outside of an institutional setting.
The state added 513 new waivers to the list July 1, meaning that another 513 residents with disabilities should be able to access those services. So far, 31 people are on their way to getting waivers, according to the Georgia Department of Behavioral Health and Developmental Disabilities.
But, the new waivers will only help a fraction of those who are on the sidelines waiting for help. In all, there’s still a waitlist of about 7,100 people who are seeking waivers.
The state is also pursuing an ongoing study that will determine whether they need to boost pay for what are known as “direct service professionals,” who serve people with disabilities. The results of that study are expected to be released early in 2023 and could potentially inform next year’s budget process.
But advocates, providers and parents with kids who are disabled told the committee that they don’t need a study to confirm what they already know: that the workers who support people with disabilities are leaving for better paying jobs. Direct support professionals can make as little as $10.63 an hour, and are exiting the profession for positions in the retail and restaurant industries.
The lack of funding has caused some providers to take drastic action. J. Lorraine Price, who leads a business that provides in-home community living support for the intellectually disabled, said she’s cut a medical coordinator and left administrative positions unfilled, in order to pay higher wages to those workers who are directly caring for people with disabilities.
Things are arguably even more dire for parents whose children can’t get off the waiting list.
Celeste Chippero is one of those parents. She has a 32-year-old son, Peter, who has cerebral palsy. Peter has now waited for five years on the waiver waiting list.
Peter also needs care 24 hours a day, seven days a week. Chippero said that she and her husband have enough income to pay for his day program, but they are getting to the point where they won’t be able to physically care for him anymore.
“I can’t lift him anymore, to get him in and out of the tub. My husband has to do it, and I know that’s going to change,” said Chippero, who is 63.
Chippero described herself as Peter’s “squeaky wheel,” and that she has called the state repeatedly, to no avail. She says she’s most scared about what will happen to Peter after she is gone.
“My biggest fear is long term, when I die. He’s not health fragile, he could very well outlive me,” she said. “I want to know that he is well cared for, and lives a full life.”
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