Rep. Zack Hawkins, Kelly Crosbie of DHHS, Sara Wilson of Alliance Health, and Talley Wells of the NC Council on Developmental Disabilities (Photo: Lynn Bonner)
Gwen Collman estimates that her 31-year-old son has had 150 paid caregivers since he was two years old, and that she has recruited about 100 of them.
David, one in a set of triplets and one of Collman’s four children, is deaf, has cerebral palsy, and cognitive impairments.
People who work with him are paid through a Medicaid program called the Innovations Waiver. The program pays for caregivers who provide the assistance to people with intellectual or developmental disabilities that allows them to live in community settings.
But it’s hardly a sure remedy.
Space in the Medicaid program is limited, and there aren’t enough “slots” for people with disabilities who could qualify. The waiting list has more than 17,000 people on it as of August, according to the state Department of Health and Human Services. Even when people are approved for services, there aren’t enough workers to actually do those jobs. The worker shortage is so bad that it’s commonly called a crisis.
Private provider agencies are supposed to recruit and hire workers, then assign them to people in the program. But often, parents end up doing the recruiting, then asking agencies to hire the people they find, as Collman did. The private agencies have contracts with regional mental health offices to supply workers for people with disabilities.
A meeting in Chapel Hill last weekend of a grassroots group called Parent Advocates for Adult Children with I/DD centered on the frustrating shortage of direct care workers.
Direct care work doesn’t pay much. And it is employment without a career path.
“I’ve seen low-paid people who have put their heart and soul in working who can’t pay their bills, who have to get food stamps themselves,” Collman said.
The legislature included in this year’s budget money to help increase wages of direct care workers by $6.50 an hour over the average hourly wage.
Kelly Crosbie, director of the Division of Mental Health, Developmental Disabilities and Substance Use Services at DHHS, counted as positives in the state budget the money for worker pay, 350 additional waiver slots, and support for people with disabilities who work at jobs with competitive wages.
Additionally, in a change that commenced this year, the federal government is allowing the state to offer a service that provides support for community living to eligible people who use Medicaid.
“This is a new benefit,” Crosbie said. “You do not have to wait for a waiver slot.”
There is no waiting list for this new service, but the worker shortage limits how many people can use it.
The state is working to develop an education pipeline and a career path for workers, she said.
“It’s an honorable profession,” Crosbie said. “We do not pay them enough. People need to get paid.”
The division is also developing a broader strategic plan that sets out goals, spending priorities and performance measurements. Goals will include providing more people with intellectual or developmental disabilities, or traumatic brain injuries services, housing, and jobs if they want them.
“We need a vision and we need accountability,” Crosbie said.
A remedy for the worker shortage was included in a court order issued last year in a case called Samantha R., which focused on eliminating the waiver waiting list and moving people out of institutions.
A plan that the state published last year said that wage increases would help ease the shortage and training would improve the quality of service.
While the budget requires companies that employ the frontline workers to verify that employees will actually get the money intended for raises, some speakers wanted more information on how the money is being distributed.
The NC Council on Developmental Disabilities and the provider agencies worked to win the rate increase, said Talley Wells, the council’s executive director. It was the providers who supplied the salary information used to convince legislators that the frontline workers needed to make more money.
Data are scarce however when it comes to revealing how much of the funding moves down the chain to workers, and how much the companies and the regional government offices called Local Management Entities/Managed Care Organizations keep. It’s these regional government offices that distribute state and federal money that pays for services the private agencies offer.
“We need more transparency in the system,” Wells said. “That’s the only way the legislature is really going to trust us.”
A group of legislators with a special interest in improving services for people with developmental or intellectual disabilities helped win support from budget writers on pay increases and additional waiver slots. But parents, advocates, and a legislator who attended last weekend’s meeting said more is needed.
There was talk of having a group of parents and children go to the Legislative Building next spring to talk to lawmakers.
Rep. Zack Hawkins, a Durham Democrat, is one of the legislators who advocated for spending items important to people with intellectual and developmental disabilities. He’s also the father of two young sons with autism.
Legislators need to hear directly from parents about what their children need, he said.
“It’s a hidden world,” Hawkins said. “They have no idea how much folks like us are suffering.”
Our stories may be republished online or in print under Creative Commons license CC BY-NC-ND 4.0. We ask that you edit only for style or to shorten, provide proper attribution and link to our web site. Please see our republishing guidelines for use of photos and graphics.