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Thousands of people with mental health disabilities gathered at the legislature Wednesday to ask lawmakers to fix a change in Medicaid rules that could put them out of their homes Jan. 1.
By Rose Hoban
Robert Bullock has lived in his group home in Cary for five years and he feels at home there.
“There’s five of us there, and we all get along good. We’re just like family… just like brothers,” said Bullock, 55, who ended up at the group home after a psychiatric breakdown and two years in a state hospital.
But Bullock and thousands of other people with mental health problems who live in small group homes face possible eviction on Jan. 1, 2013 if state lawmakers don’t find money to make up what for the homes will lose as the result of a change those same lawmakers made to the state’s Medicaid program earlier this year.
Dozens of group home residents and their advocates sat in on a legislative committee Wednesday and then rallied outside in an attempt to bring attention to the problem.
It seems to have worked – both Republican and Democratic legislators addressed the rally outside, telling them they were working on resolving the issue.
But there is still no resolution in sight before the January deadline. Republican leaders in the General Assembly have called on outgoing Democratic governor Bev Perdue to find money to solve the problem.
A long term problem
The situation is the outcome of years of foot-dragging by state lawmakers around provision of personal care services for people with disabilities living in their own homes that matches the services available for people living in institutions.
For a long time, in order to receive Medicaid benefits and remain in their own homes, people with mental health disabilities were required to need assistance with two or more of so-called activities of daily living – things like bathing, dressing, toileting or eating. But if they lived in an institution, such as an adult care home, they were only required to need assistance with one activity in order for Medicaid to pay for the help.
The Centers for Medicare and Medicaid Services (CMS) has been telling North Carolina for years this “institutional bias” was illegal under the Americans with Disabilities Act. CMS complained and pressed the state to resolve the problem, but meanwhile kept paying the bills.
But this last year, CMS finally ran out of patience. The agency gave North Carolina an April 30 deadline to resolve the problem. The state appealed and got the deadline pushed off to January.
In the spring, lawmakers debated what level of assistance to require for anyone – in institutions or in the community – to receive Medicaid payments for the personal care services. At the time, the discussion centered around a possible “woodwork effect” where people with disabilities who had been living at home and who suddenly qualified for Medicaid assistance would “come out of the woodwork” to claim the benefit.
At the time, Department of Health and Human Services officials estimated that as many as 13,000 people living in their own homes could become eligible for the entitlement if the level of assistance required remained at one activity of daily living – as it had been in institutions. That would have cost the state tens of millions annually.
In the end, lawmakers decided to make the standards tighter, in order to discourage a flood of new recipients. And in a special provision of the state budget, lawmakers also set aside $39 million to help large adult care homes make the transition. Those facilities mostly house elderly people, in addition to people with mental health problems. Industry leaders claimed they would lose money under the tighter provisions and many operators would be forced out of business.
But the special provision made no mention of small, 6-person group homes that exclusively house people with mental health, intellectual and developmental disabilities.
“All the attention has been on the adult care homes, but they’re well represented by lobbyists and industry,” said Ann Akland, former head of the Wake County chapter of the National Alliance on Mental Illness.
“But the group homes have little or no representation. These guys don’t have anyone,” said Akland, who is trying to organize the owners and operators of small group homes. “The people with intellectual and developmental disabilities they even have a strong lobby, but people with mental health problems… they’re at the end of the line.”
Lawmakers were warned
HHS oversight committee co-chair Rep. Nelson Dollar (R-Cary) maintained Wednesday lawmakers had been unaware of the way group homes would be affected by the changes.
But during an oversight committee meeting in March, lawmakers had asked about group homes. Tara Larson, chief of clinical operations for the state Medicaid program, told lawmakers at the time that group homes would be affected, but did not provide details.
Advocates and lobbyists for organizations such as the ARC of North Carolina, the Autism Society and Easter Seals/ UCP – that represent people with intellectual and developmental disabilities – also warned legislators.
“We explained that would have a significant impact on people with intellectual and developmental disabilities,” said Julia Adams, the assistant director for governmental affairs for the ARC.
“We had been tracking all of this throughout the session and having conversations with lawmakers,” Adams said this week. “What happened in the last 72 hours (of last summer’s General Assembly session)… there was a section where they changed the special provision on the $39 million to only adult care homes. A lot of us went up to legislative members and staff and said that restriction was going to cause a problem, and we asked them to put the group homes back in that special provision.”
But Adams said in the rush to wrap up the legislative session, group homes were excluded in the final budget.
“I’m not sure in the cloud of the last hours of the session that anyone understood the significance of excluding group homes from that special provision,” Adams said.
Now lawmakers say they’re surprised.
Temporary fixes possible, but no long term solutions yet
The group home problem has gotten swept up in other long-standing problems in the mental health system that lawmakers are trying to untangle now.
Rep. Dollar has been heading up a blue ribbon committee on resolving housing issues for people with mental health disabilities that met Wednesday. He said they’re working on the problem, but lawmakers can’t really address it until the General Assembly returns in late January, after the CMS deadline has passed.
“One option is for the governor to come up with some funds within the department (of Health and Human Services),” Dollar said, “some funds outside that $39 million block to help with the transition in early January and February, to give the General Assembly a chance to get in and act on the issue.”
He said once the legislature returns, lawmakers are likely to include group homes on the $39 million allocation. That money is supposed to last only through the end of the fiscal year in June.
“What we’re working on right now is the long-term solution whether it’s people in adult care homes, or in group homes, or in special care units that are impacted,” he said.
Dollar said Gov. Perdue could call a special session to deal with the temporary issue, but said he had not asked the governor to do so.
“That’s not my responsibility,” he said.
Dollar said if neither the governor nor the legislature acts before the new year, individual group home residents can appeal to the Medicaid Office of Administrative Hearing in January, once they get notified that they’re losing their benefits.
“During the time in which they appeal, before the decision is made by the OAH, they will continue to receive funding for those services,” Dollar said. “The way things stand today, the way most of it will be resolved is by anyone who’s not qualifying appealing, and the appeals extending into February and March. And that will give the general assembly time in which to act.”
Adams said that’s what her organization is telling their members.
“You really have a clock on this, it really is ticking,” Adams said. “Individuals living in group homes will be asked to appeal and I think group home providers and individuals working with those people will do what they can to avoid anyone losing their homes.”
“But the reality is they changed the rules and people are not going to qualify any more,” she said.