After making changes to the state’s Medicaid program that jeopardized the housing for people with mental and intellectual disabilities living in group homes, lawmakers finally fix the problem. And they also addressed funding issues for patients with dementia living in special care units.
By Rose Hoban
Residents in group homes and special care units for seniors with Alzheimer’s can finally exhale after months of worrying about whether they could stay in their homes.
In a long-awaited fix to funding problems that have loomed over some of North Carolina’s most vulnerable residents, legislators amended a bill to ensure funding for group homes.
Also included in the bill is money through the end of June for residents in special care units that house patients with Alzheimer’s disease and dementia.
House Bill 5 will allow group home residents and patients in Alzheimer’s units to access a $39.7 million pot of money set aside by lawmakers to pay for the same personal care services provided in adult care homes.
During last year’s session, state lawmakers changed the Medicaid rules on reimbursement for personal care services such as assistance with bathing, dressing and toileting. But those changes excluded residents in six-person group homes that serve people with mental health issues and developmental disabilities.
Lawmakers said they made a mistake in excluding the group homes from the bill, while advocates said they had warned legislators about a potential problem.
“Whether or not they made a mistake, they fixed it,” said Jim Jarrard, head of the state Division of Mental Health, Developmental Disabilities and Substance Abuse Services.
In addition, the changes swept up between 3,500 and 4,000 people with Alzheimer’s disease and dementia who live in special care units designed for people with memory problems.
“It was never the General Assembly’s intent that an individual … situated in a group home would not be able to access this six months of temporary support if they no longer qualified for [personal care services],” said Rep. Nelson Dollar (R-Wake) as he introduced the updated bill.
“We’re very pleased,” said Julia Adams, assistant director of governmental affairs for the Arc of North Carolina. “For our families who live in those group homes, we can go to them today and say, ‘Your homes are safe, and a long-term fix is in the works in the Senate and the House.’”
“Today’s a good day for us,” she said.
Creating life skills
Many people in those group homes don’t need the services directly; instead, they need someone to cue them to put on their own clothes or to lift the fork to their mouths to eat.
Adams said that an eventual fix to the funding-stream issue should contain a Medicaid service definition that would include so-called habilitative services, activities that allow for people with developmental or intellectual disabilities to learn how to live their own lives.
“It’s things like life-skill training, teaching you how to cook, to make toast without burning down the house, how to access your bus stops, how to get dressed in the morning by yourself, how to complete your tooth-brushing,” Adams said, “all of those things.
“These are the things that people with intellectual and developmental disabilities living in group homes, and also living in their communities, have always required, but there hasn’t been a really good service definition to pay for it.
That’s how they ended up with personal care [services]. But it was never really appropriate.”
Adams said that part of a permanent fix would include the creation of a Medicaid allowance, called a 1915i waiver, that would cover habilitative and other services for people with intellectual and developmental disabilities.
Fix remains elusive for mentally ill
It’s that same 1915i waiver that worries Deby Dihoff, head of the state chapter of the National Alliance on Mental Illness (NAMI). About 1,400 people with mental health issues as their primary problem live in small group homes.
She explained that for many people with mental health problems, their need for care, and housing, is episodic, so the costs are hard to predict over the long term.
“It’s episodic,” Dihoff said. “You can have someone with schizophrenia who is high functioning and do great for a long time, and then they have an episode and need help. And then they get it together.”
“So it’s hard to predict the finances of caring for a person like that. So they avoid dealing with it,” she said. “Other states put money into housing, and it makes sense. But we have avoided this like nobody’s business.”
Dihoff said that for years North Carolina shunted people with mental health problems to adult care homes. But last year, the federal Department of Justice told the state that practice was inappropriate and that it needed to fix the problem.
“The problems we have with the DOJ were not the fault of that industry, it’s the fault of the state,” Dihoff said.