Each day, Perteria Allen walks her grandson through his morning routine — but it doesn’t always work perfectly. Sometimes he shoves towels into the toilet until the floor floods. He fights Allen and she has to wait outside until he calms down. He throws his medications.
Allen’s 21-year-old grandson, Bertrand Andrus, is severely autistic. At 68 years old, Allen says she desperately needs someone to help care for him in her Greenville, Miss., home.
“It’s a lot of work for one person at my age,” she said.
For nearly eight years, Andrus has been on the state’s waiting list for a Medicaid-funded in-home caretaker during the day, a service designed to keep people with intellectual or developmental disabilities out of mental health facilities. Just as her grandson was making it to the front of the line, Allen received a letter from the state Department of Mental Health in April informing her that access to the Medicaid program had gone from slow-moving to a complete stop. Previously, new recipients were added each year; now, someone would have to die or leave Mississippi before Andrus could move up the waiting list.
The month before, lawmakers approved statewide budget cuts, reducing the Department of Mental Health’s budget by $10 million for fiscal year 2018, which began this month. Though that amounted to about a 4 percent decrease in funding, the cost of providing care is expected to rise in the next year, leading to a total budget hit of $19.7 million, department officials said.
The cuts included a cap on spending for new enrollments for the Medicaid-based services that could help Andrus, called Intellectual Disability/Developmental Disability (ID/DD) waivers.
The reductions were unavoidable amid declining state revenues, said state Sen. Buck Clarke (R-Hollandale), who chairs the Senate Appropriations Committee. Funding the Department of Mental Health would mean cutting other critical services, he said.
“That’s where we’re at,” Clarke said. “It’s hard, it’s a tough decision.”
Advocates worry more states will cut the ID/DD waivers if Congress passes the Republican health-care plan. Both the House and Senate proposals would reduce Medicaid spending by about $800 billion over the next decade compared with current spending plans, according to estimates from the Congressional Budget Office.
When funding is limited, ID/DD services often are hard-hit because the federal government does not require states to offer them, said Mary Lee Fay, executive director of the National Association of State Directors of Developmental Disabilities Services.
In addition to in-home care, the program also funds training to help people like Andrusto become more independent, learning simple tasks such as pushing a shopping cart at a grocery store and assisting with orders at a fast-food restaurant.
The Republican health-care proposals would fund Medicaid through block grants that lock states into a fixed share of money per enrollee, while allowing some flexibility for states to determine how they’ll fund non-mandatory Medicaid programs. If the cost of providing care for those with developmental disabilities increases at a faster pace than the federal dollars available, the ID/DD services are optional pools of spending that states could scale back.
The health-care bill is “going to be a huge barrier for states to support people in the future,” Fay said. “It’s hard to envision how it will work out for the developmentally disabled community.”
According to the Urban Institute, Mississippi would lose nearly $2 billion in Medicaid funding between 2019 and 2028 under the House American Health Care Act.
Through a spokesman, U.S. Sen. Thad Cochran (R-Miss.) declined to comment on the potential Medicaid cuts. Cochran has previously called the GOP’s proposed health-care plan a “work in progress.”
The office of U.S. Sen. Roger Wicker (R-Miss.) did not respond to requests for comment.
Though ID/DD services aren’t federally mandated, the U.S. Department of Justice has sued some states with lengthy waiting lists — including Mississippi — saying a failure to provide adequate services that keep people out of state hospitals is a violation of the Americans With Disabilities Act.
“Unnecessarily forcing people with disabilities to enter institutions to get services constitutes unlawful discrimination,” the Justice Department wrote in an August news release about the Mississippi lawsuit, citing a 1999 Supreme Court decision on the issue.
Most states have more individuals seeking ID/DD services than they have available slots, according to research from the Kaiser Family Foundation. In 2015, there were more than 428,000 individuals on waiting lists for the services nationwide, with an average wait time of 43 months.
After the cuts, Mississippi’s waiver services were capped at 2,515 enrollees and allotted a maximum budget of $28.5 million, according to the Department of Mental Health. Andrusis on a waiting list with more than 1,400 others.
Since the Justice Department’s 2011 report, Mississippi has expanded funding for community mental health centers to establish mobile crisis response teams, community outreach and youth courts, among other program boosts, said Adam Moore, spokesman for the state Department of Mental Health.
Between the 2012 and 2016 fiscal years, 437 people transitioned back to the community from care facilities, according to the department.
Those who choose institutionalization aren’t immune from the ramifications of budget cuts: The state mental health department has to reduce its workforce by 650 positions, which will impact the state hospitals as well.
Will Dunn, who has Prader-Willi syndrome — a genetic condition that causes cognitive disabilities and behavioral problems — moved from Illinois in the early 1990s to live in a North Mississippi Regional Center group home after he graduated high school.
The facility is among the state-run mental health programs that was frozen under the state budget cuts. Dunn’s parents, William and Carol Dunn, are in their 70s and say they wouldn’t be able to care for Will, now 42 years old, without the program.
“It would be very disruptive to him now to have anything change,” William Dunn said.
For Allen, she said she and Andrus just have to wait. In the meantime, she continues trying to give her grandson new experiences, even accompanying him to his school’s prom in April.
“I want him to have his own life,” Allen said. “I know he can have his own life.”