Timelines are short for the state to come into compliance with federal rules before a January deadline.

By Rose Hoban

DHHS Oversight Meeting, April 10
Committee co-chair Rep. Nelson Dollar responds to a question at the DHHS Oversight Committee meeting Tuesday.

Officials from the state Department of Health and Human Services breathed a collective sigh last week, when federal officials granted a delay in implementing rules to bring personal care services for adults with disabilities into compliance with federal law.

The delay means Medicaid will continue to pay for  personal care services used by adults with disabilities who live in their homes, and in adult care homes until at least Jan 1, 2013 as the state implements changes. Federal officials will be holding North Carolina health officials to a tight schedule for compliance.

DHHS officials answered questions from state lawmakers about the new timeline at a Health and Human Services oversight committee meeting Tuesday. They detailed the strict schedule and “plan of correction” given to them by officials from the federal Centers for Medicare and Medicaid Services (CMS). Federal officials extended the original April 30 deadline after pleas from state officials, lawmakers and North Carolina’s Congressional contingent.

At issue are rules about how many personal care services Medicaid will reimburse for. For years, adults with disabilities who lived in adult care homes were able to receive Medicaid money if they needed help with two ‘activities of daily living’ such as preparing meals, medication management, bathing, eating or toileting.

However, adults with disabilities living in their own homes have had to demonstrate a need for help with three or more activities of daily living in order to get those same personal care services paid for by Medicaid.

Acting HHS Secretary Al Delia estimated a total of about 13,000 adults will be eligible for services once all the changes are made. About 3,700-4,000 people currently receiving the services will lose them, including about 2,000 people currently living in adult care homes, while others will become newly eligible.

“We are shrinking the universe of people who may be eligible (for services). But in doing so, and in advertising the fact that there is this program available, we may be increasing the number of people who… want to take advantage of it,” Delia said.

“You will have people who are eligible for in home (services) who historically would not have been eligible under our old methodology,” added Tara Larson, the Chief Clinical Operating officer for North Carolina’s Medicaid program.

“It means you can serve those people at home, instead of placing them in only in an adult care home or in a group home,” she said.

Making adult care homes homier

In addition to changes in Medicaid reimbursement,  adult care homes will have to make their facilities more ‘home-like’ to comply with the Americans with Disabilities Act

Acting Secretary of Health and Human Services, Al Delia
Acting Secretary of Health and Human Services, Al Delia

“That includes such things as residents who are medically able to do so, to be able to use kitchen facilities, to be able to get meals, to be able to have visitors at times of their choosing, to be able to have a say in choosing a roommate if they happen to reside in an adult care home that has more than one person to a room,” Delia explained to the committee.

According to CMS, Delia said residents should have “…similar kinds of freedoms and liberties that you and I would have if we were resident in our own homes, and have the freedom to choose what we do in our home.”

Adult care home operators have objected to having to comply with these rules. After the HHS oversight meeting in March, adult care home operator Ed Weeks complained that allowing residents access to preparing food could put him in a bind.

“I’ve had residents with small refrigerators in their rooms, and then we hear from the local health inspector that it’s not okay,” said Weeks, who runs several homes in Cumberland County. “We’re caught in between. If you get a B on a health inspection, you’re in trouble.”

Representatives from the adult care home industry have also contended that many current residents will not meet the criteria for needing help with more than two activities of daily living. Without Medicaid reimbursement that comes with the personal care services, some residents could be discharged. Industry representatives also say some adult care homes will close once they lose that Medicaid income.

“Medicaid is what pays for the direct care service staff,” said adult care home lobbyist Lou Wilson after the March committee meeting.

Long time coming

Problems around adult care homes have been well known for more than a decade. Multiple state study commissions and task force reports have detailed how North Carolina’s use of adult care homes to house people with mental health disabilities put the state at odds with the Americans with Disabilities Act, signed into law by President George HW Bush in 1990.

One of the most contentious issues has been a debate about whether adult care homes are ‘home-like’ or whether they are institutions. Advocacy organizations such as Disability Rights North Carolina have long argued that adult care homes are institutions.

“Living in facilities with more than six beds will never be community based, it will always have an element of an institution, where decisions are made based on staff needs, not individual needs,” said Vicki Smith, head of Disability Rights.

Smith expressed satisfaction with the discussion in Tuesday’s meeting. Her organization has long argued North Carolina officials have favored the adult care home industry over the rights and needs of people with disabilities.

“The state has finally taken a small step in the right direction in moving from an institutional bias to a community bias,” Smith said, “in terms of where you live and the way you live, the criteria for getting care should be the same.”

In 2010, Disability Rights made a formal complaint to the US Department of Justice about the state’s use of adult care homes to house people with mental health problems. The Department of Justice agreed with Disability Rights, and eventually filed a lawsuit against North Carolina.

Last year, after months of investigation, the Department of Justice told North Carolina the state’s ‘bias towards institutional care’ violates the Americans with Disabilities Act, and additional rulings by the US Supreme Court. Negotiations to settle the lawsuit are ongoing, according to Delia.

He said the timeline for creation of more community based mental health services is part of the discussion with federal officials.

“This is not an issue were we can flip a switch, where Tuesday we don’t have it and Wednesday every thing is fine,” Delia said. “it’s something that has to be done over time.”

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Rose Hoban is the founder and editor of NC Health News, as well as being the state government reporter. Hoban has been a registered nurse since 1992, but transitioned to journalism after earning degrees...