CHARLOTTE, N.C. -- For years, North Carolina has been warned to take better care of its mentally ill residents. This summer, federal officials have declared they're tired of waiting.
Federal agencies that provide substantial funding for services to people with mental illness say that far too many of them are living in adult care homes, and the agencies are threatening to stop paying the bills. Last month, the federal Department of Justice stepped in, saying the state has violated the Americans With Disabilities Act by failing to provide housing for mentally ill people other than institutions such as mental hospitals and adult care homes.
The Justice Department says it will sue the state if it doesn't agree to find alternative housing.
The seemingly sudden standoff is a result of years of failed state mental health policy. And within months, it could force as many as 1,200 mentally ill people out of adult care homes. Those people live in 38 such homes that federal regulators say may be acting as mental institutions because more than half of their residents are there because of mental illnesses.
People with mental illnesses could be scattered to the streets, to homeless shelters and into emergency rooms as social workers and relatives scramble to find scarce beds in mental hospitals or in group homes.
Thousands more could join the exodus in years to come as the federal government forces the state to stop relying on adult care homes to house them.
State leaders are begging the feds for more time to sort through the crisis.
"It's the perfect storm," said Lanier Cansler, state secretary of health and human services. "We're trying to figure out how not to have a catastrophe here."
Cansler said he needs to meet with legislators when they reconvene in September to find money and get changes in the law to allow more flexibility in housing options.
Everyone is worried
Advocates for people with mental illness are worried that counties aren't prepared to care for those who are displaced. Relatives of some residents in adult care homes fear the return of an instability they have battled for years. Adult care facility operators are panicked that their businesses will be forced to close.
And politicians are blaming their counterparts across the aisle for letting down a fragile population.
No one seems to have a solution that can roll out as quickly as it's needed.
"This is the result of a decade of neglect," said Vicki Smith, executive director of Disability Rights North Carolina, which has pushed the federal government to pressure state officials. "It's all coming together right now, and it couldn't be a worse time."
The failure of reform
Federal law requires that states ensure these citizens get the care they need locally, in the least restrictive setting possible. The state must now challenge the federal government's findings or work furiously under federal supervision to create a community-based system of care.
This is a familiar story for North Carolina. In 2001, the state passed a broad reform bill aimed at providing more treatment in the community. But it forced county providers out of the business and turned the work over to for-profit companies, some of which charged far more and provided inferior care.
A News & Observer investigation and a resulting audit showed the state had wasted more than $400 million. And mental-health treatment deteriorated.
Now, the state is being forced to reconsider how it cares for the mentally ill. The most immediate issue involves the percentage of residents in adult care homes who are there because they are mentally ill.
Under federal guidelines, Medicaid can't be used to fund institutions in which a majority of residents are ages 22 to 64 and are there because of mental illness. So far, the state has identified 38 facilities that may be in jeopardy; those homes are housing as many as 1,200 mentally ill residents aged 22 to 64.
The state will be visiting these residents and reviewing case files to determine whether they are there for a mental illness or some other medical issue. The feds will stop paying Medicaid to the residents at facilities found to be in violation, even for prescriptions and doctor visits.
And if the facilities don't get in line, they could lose all Medicaid funding, even for residents who are elderly and have other disabilities.
Ruin seen for some homes
Lou Wilson, a lobbyist for the North Carolina Associations of Long-Term Care Facilities, said this will be the financial ruin of many facilities.
"They don't know where to go and what to do," Wilson said. "They feel like they've taken care of these people when no one else would and that they've been good partners in North Carolina. They don't like the way the state is treating them now."
Rep. Nelson Dollar, a Wake County Republican, blamed Gov. Bev Perdue and other Democrats for letting the problem persist for years.
"It's fair to say these issues have been out there for years, and the Democrats have been in charge," said Dollar, who was chairman of the House appropriations committee that wrote the budget for the state Department of Health and Human Services.
"The governor kicked this can down the road, and the federal government won't let us get away with it much longer."
Perdue, however, had allocated $75 million in the budget she submitted to the Republican-controlled General Assembly this year to boost community based support, including housing, for the mentally ill. Legislators removed it from the budget as they tried to reconcile a $2.7 billion shortfall.
Decades of struggle
As politicians swapped blame, Jim Glenn of Charlotte drove each week to an adult care home in Mooresville to visit his 47-year-old son, oblivious to the brewing problem that could force his son back into the streets.
For more than two decades, Glenn, 73, had watched his son, James, struggle to find his place in the world.
James Glenn had his first break with reality in his mid-20s. Doctors diagnosed him with schizophrenia.
Ever since, the Glenns have been on a roller coaster. James spent time in psych wards. He lived on the streets and in jail cells.
A father's long struggle
Years ago, Jim Glenn found a place for his son in a group home near Charlotte, a smaller facility for people who need help but don't require 24-hour supervision. But James vanished.
It took a year before a retired FBI agent hired by Glenn located James in Utah. Police had found him sleeping in an empty classroom on a college campus and locked him up. James Glenn couldn't tell officers who he was and how he came to be there.
When Glenn got his son back home, he found a place for him in an adult care home, where aides are available around the clock. That was 15 years ago.
"These places fill a gap," Glenn said. "My son is a step above being in a mental hospital and a step below being able to be in normal society."
Thought worries were over
Aides give James Glenn his daily medicine and three meals a day. Glenn said he takes his son out to lunch once a week and brings him home for occasional weekend visits. He had stopped worrying about what would happen to his son when he dies.
Then, this summer, Glenn got a call from Amy Hart, administrator at Crown Colony, the adult care home where James lives. She called a meeting with relatives of her residents to warn them of the trouble stirring in Raleigh.
Both Crown Colony and another facility Hart runs, Hunters Village, are among the 38 adult care homes with substantial populations of mentally ill residents.
Hart didn't want the residents and their families to be caught flat-footed. She told them to call their legislators and urged them to get on waiting lists at group homes.
As a girl, more than 30 years ago, when her parents ran an adult care home, Hart remembers talking to residents who had been sent there after being discharged from mental hospitals. Over the years, their numbers grew. Some never left.
"We are their home," Hart said.
The state never asked for a count of residents with mental illnesses at these facilities.
If Hart's mentally ill residents are evicted, she said, she will be forced to cut her staff by half. Even with that she's not sure how long she can keep her doors open.
Not for the mentally ill?
Advocates for the mentally ill say that even though some facilities are well-run and clean, it's not the right place for people with mental illness. They receive no psychiatric care in the facility and no one is working to help them become more independent, said Smith of Disability Rights.
When Smith's group visited facilities across the state last year, it found many residents with mental illnesses desperate to go home. Smith's group said these residents are warehoused and often forgotten.
Now, state officials are being forced to see them, and find a place for them to go.
The state is asking Medicaid officials for more time to make the transition. Officials are coordinating with local mental health organizations and social workers to explore other placements. They know it will be difficult.
Glenn is just hoping it will all blow over and the state and feds will leave him and his son alone.
"They are playing poker with people's lives," he said. "They have no business."
real2009 said on August 15, 2011 at 7:18 AM
@unbaised....you sure are showing your conservative point of view by blaming the Democratic party for all the ills we're facing in not only our state, but also our country. I guess it was a blessed event to go to war in Iraq during George W. Bush's administration...now, is he a democrat or a republican? What about deregulating our government that kept an watchful eye on big businesses such as ENRON and MCI whose CEOs stole their employees pentions and retirement money...whose bright idea was it to come up with NAFTA...it was under George H. Bush's administrations, sadly, Clinton had to sign it into law. And whose bright idea was it to give tax cuts to the wealthiest businesses and americans, oh yeah, George W Bush. Laisser-fair ideology doesn't work...not during the 1930s Great Depression, nor will it work now. In other words, you can't just blame one party over the other. We have to look at it as a failure to represent "we the people".
real2009 said on August 15, 2011 at 7:04 AM
@tra1999...I agree with you because this issue isn't a democratic nor a republican problem. All politicians need to stop playing the "blame game", and roll up their sleeves, and do something. They've been talking far too long and yes, we the people they're suppose to represent are being ignored. The only thing spending cuts created are not jobs as I've heard since Reagan's administration, it has only created "UNEMPLOYMENT". We can't blame Department of Social Services workers of ignoring the many ills facing our state. With no money coming to support these programs because of "spending cuts" , and the overwhelming case load on their desk, sadly, we the people are being overlooked.
princesspeaches said on August 15, 2011 at 5:46 AM
"Unbiased" we get just as many stupid decisions when Republicans are in office. You are doing no better than the idiot politicians, playing the blame game. They are all looking out for THEM. Not us. And they keep us blinded by making sure we keep playing that same stupid blame game, instead of realizing that AL politicians are failing this country. Failing the people they are supposed to be representing.
jestor said on August 15, 2011 at 4:38 AM
more visitors to the charlotte jail system. they should figure which is cheaper and safer for the public.
tra1999 said on August 15, 2011 at 4:34 AM
I am usually quiet about most situations however this makes me sick. I worked with the mentally ill for 9 years doing what they say we need more of (Community Based Services). Guess what in 2009 My job was no longer needed because there was no funding in medicaid for me to continue. That put me unemployed like the rest of North Carolina. Where are these people suppose to go they have already shut down parts of Broughton and the waiting list for group homes is like waiting on a kidney. I don't care if you are a republican or a democrat who cares this is just wrong. So now we are going to have hundreds of mentally unstable men and women living on the street with no way to get there meds or the ones that can't even remember to take there medication even if they can get it. We are going to have a serious problem on our hands that is going to effect every one not just the mentally ill. This is a crying shame and everyone needs to step up and say something.
colleen1948 said on August 14, 2011 at 9:53 PM
I worked this population for over 16 years
colleen1948 said on August 14, 2011 at 9:40 PM
As a person who worked closely (1.1) with these clients, it makes me angry that they continue to have their funds slowly taken away each year, and that also includes their health insurance. Then the state comes in and puts the blame on the everyone but where it needs to be put, and says they are tired of waiting... It is so difficult to find staff who truly dedicated to working with this population. There are even doctors who turn their back on these people as well. This population may have disabilities, but they can teach a person far more than those who actually work with them. Then you have many in society who constantly make fun of this population It is shameful!
unbiased said on August 14, 2011 at 4:22 PM
steepgap...Do you understand the political system? The party that hold the majority of seats makes the decisions because they have the most votes. That's why we get so many stupid decisions when Democrats are in office.
steepgap said on August 14, 2011 at 3:55 PM
Rep. Nelson Dollar, a Wake County Republican, blamed Gov. Bev Perdue and other Democrats for letting the problem persist for years. Does mean that when the democrats are the majority, that the republicans are just setting back to watch. Don't the republicans have any responsibilities when the democrats are in the majority. If that is the case why do we need to be paying all these republicans since they have no responsibilities. The same could be true if the parties were vice versa. It is everyone's responsibility and the fault lies with all of those who represent the people.
lisadiane said on August 14, 2011 at 2:24 PM
I don't understand how the "reform" passed in 2001 made things worse. THAT IS NOT REFORM!! And now, the bureaucrats are going to harm the people they are pretending to want to help! This is a perfect example of how, when the government takes over, or even gets involved, THINGS GET WORSE. Listen to those who have to deal with this...."leave us alone". This is awful, just awful. The mentally ill need security and consistency. The government is taking all that away. Just what the government does best! WHY are they meddling in something that is working for the people who need it???
allann_704 said on August 14, 2011 at 12:44 PM
Here's the real tragedy. There's a substantially good idea in "least restrictive settings"..but as interpretted and implemented by bureaucrats and under funded by legislators, the 'changes' are more about 'giving the appearance of doing something' - rather than do better for those with mental disabilities. No, adult homes are an especially wonderful idea - just the only one that worked for quite a while. Some are s#$%holes - because the state never invested enough in regulatory visits, and because state payments were cheap at best.