Perteria Allen with a photo of her grandson, Bertrand Andrus, who has autism. Allen staged the graduation photo of Andrus after he aged out of Greenville High School’s special education program.

Bertrand Andrus spent Tuesday much like he spends every day, rocking back and forth in a kitchen chair under the watchful eye of his grandmother, Perteria Allen.

It is a bleak existence, Allen acknowledges. But it’s the only one she can give her grandson. The 21-year-old, who has severe autism, has spent nearly nine years on the waiting list for one of Mississippi’s 2,515 intellectual and developmental disability waivers. These IDD waivers, as they’re known, let recipients live at home while still receiving comprehensive therapies and classes targeted to their disabilities.

Sometimes Allen will put the television on, but Andrus can’t focus on it. He’s not verbal, and he never has received therapy for his disability. Allen, his sole caregiver, recently taught him to tie his shoes. That project took her three years.

“He’s never had friends. People don’t want to be associated with people with a mental disorder,” Allen said. “He’s a lonely person. He’s very lonely.”

Andrus was supposed to receive a waiver last year. But two weeks after the Department of Mental Health began enrolling him in the program, his grandmother received a second letter from the department. The Legislature had decided to limit spending on the IDD waiver program, freezing enrollment.

Bertrand — and 101 other Mississippians — were back on the waiting list.

“You tell me that don’t hurt your heart, that he got to be number four on the waiting list and now they say they can’t do anything,” Allen said. “You can’t say that don’t hurt a family.”

The Legislature’s decision last year to cap the program has hurt hundreds of Mississippi families, say disability rights activists. Currently, 1,300 Mississippians are on the waiting list for an IDD waiver. And until the Legislature lifts the spending cap, which it set at $28.5 million in state funds, the only way to move off the waiting list is if someone with a waiver dies or loses eligibility.

But what’s most surprising about the Legislature’s decision to freeze enrollment is that members say they never actually intended to do it.

Rep. John Read, R-Gautier

“There were some unintended consequences in the bill,” said House Appropriations Chair John Read, R-Gautier. Read, who said removing the cap is a priority, has authored legislation that would repeal the program’s spending cap as soon as it is passed.

“I can’t go back and undo it, but in the future we’re trying to prevent this from occurring again,” Read said.

For Allen, who has cared for Bertrand, alone, every day since he was placed back on the waiting list, a promise to fix the mistake isn’t enough.

“It’s been one of the hardest years of my life because we got so close. And you get to the point where you worry there’s no more you can do for someone,” Allen said.

Limiting access to IDD waivers could have severe consequences not only for people waiting on them, but also for the state. The federal Department of Justice filed a complaint in 2016 ordering Mississippi to move more patients and resources from the state’s five mental health institutions to community based services. The IDD waiver program, which allows recipients living at home to receive up to 296 hours of targeted services a month, is a major spoke in the department’s plan.

In May, Gov. Phil Bryant lambasted the department’s slow progress in making these changes.

“I am absolutely stunned that the Department of Mental Health continues to support their institutions. In the 1990s they built several of these across the state because that was the standard of care,” Bryant said. “But they’re reinforcing old continuums of mental health care. We’re being sued by the federal government. We should be putting more (resources) into community based care.”

But the Department of Mental Health — which has lobbied lawmakers to lift the spending cap this session — said it was not involved in the decision to limit IDD funding. In fact, the department has said it is prepared to direct an additional $2 million towards community based care as soon as the Legislature lifts the cap, allowing the state to once again enroll new people into the program.

Diana Mikula, director of the Mississippi Department of Mental Health.

“We have the resources to this. We just need the cap to be removed,” Diana Mikula, executive director of the Department of Mental Health, told a Senate Appropriations subcommittee earlier this month.

The Department of Mental Health has received a lot of attention over the past year after a series of budget cuts left the agency struggling to close a $19.7 million deficit. A spending cap is somewhat different from these cuts, however, because rather than determining how much money the agency will get, a cap determines how much the agency can spend on a program, regardless the size of its overall budget.

Caps often are seen as a way to determine legislative priorities. In the mental health spending bill, lawmakers capped only two programs, the IDD waiver and another community based program that provides mental health services for juveniles in detention.

“If you put a cap on community based services your priority is not community based services,” said Sen. Derrick Simmons, D-Greenville, one of the nine senators who voted against the bill. 

The spending cap was not in the original draft of the appropriations bill. Lawmakers added the language, which says that the department “shall fund 2,515 Home and Community Based Waiver slots at cost not to exceed ($28.5 million),” to the bill during conference weekend in March 2017.

According to Read, the conference committee did not realize from the information the Department of Mental Health provided that capping the budget for IDD waivers would freeze enrollment.

“It was really miscommunicated to us,” Read said. “That’s why this happened.”

That document, which the department has sent to Mississippi Today, showed that keeping enrollment at the same 2017 levels for another fiscal year would cost the department $28.4 million. Enrolling an additional 238 people into the program would have added $2.9 million. According to the same spending bill, the targeted enrollment goal for that year, which the agency had set before it knew its 2018 appropriation, was an additional 350 people.

“Our intentions were to continue expanding the number of waiver enrollees each year,” said Adam Moore, director of communications for the Department of Mental Health, in an email to Mississippi Today.

News of the enrollment freeze on the waiver program — and the reasons for it — drew strong criticism from a number of Democrats, who frequently accuse Republican leadership of pushing bills through the legislative process before the opposing party can weigh in.

Rep. Tom Miles, D-Forest

“That’s what happens when you rush through legislation without fully vetting it,” said Rep. Tom Miles, D-Forest. “There’s a lot of unintended consequences and a lot of people’s lives hurt by it.”

This is not the first time this session that a legislative oversight has created a budget crisis for an agency and jeopardized its compliance with a court order.

Two weeks ago, the Department of Child Protection Services announced it was facing a record-breaking $38 million deficit. Legislators, in their rush to comply with a court order, had not realized that separating the agency from the Department of Human Services would reduce the agency’s federal match rate. While nearly every dollar the state spends on the Department of Human Services is matched by another dollar, the match rate at Child Protection Services is just nine percent.

“We thought we could do it on our own, and we went out and did it wrong,” Sen. Terry Burton, R-Newton, said in the Senate Appropriations Committee meeting. “I’m just telling it like it is.”

But the rush to comply with part of a court order has put the agency at risk of violating other mandates, such as increasing staff and updating a three decade old computer system. The agency has put both on hold to reduce the deficit.

“Of course, anything we do that compromises our ability to respond to a complaint is of concern to us,” said agency Child Protection Services commissioner Jess Dickinson. “The plaintiffs’ counsel are not going to like the fact that we’re doing a hiring freeze. They’re not going to like the fact that we’re delaying implementation of (the new computer system). But they’re going to understand there’s nothing we can do about it.”

On Thursday, the Legislature passed out of committee a bill that would place Child Protection Services back under the Department of Human Services. But whether these mistakes are forcing the Legislature to slow down its bills process remains to be seen. Two weeks ago, the House passed a bill that rewrites the education funding formula. And members had just five days to digest 354 pages of legislation.

“That bill had some good points in it,” said Miles, who voted against the legislation, which passed along party lines. “But it was rushed through, too. There are going to be unintended consequences. There are going to be unintended consequences with anything when you don’t have both sides vetting the issue.”

 

Larrison Campbell is a Greenville native who reports on politics with an emphasis on public health. She received a bachelor’s from Wesleyan University and a master’s from Columbia University's Graduate School of Journalism.Larrison is a 2018 National Press Foundation fellow in public health, a 2019 Blue Cross Blue Shield Foundation of Massachusetts fellow in health care reporting and a 2019 Center for Health Journalism National Fellow.