Investigating North Carolina’s system of housing people with mental disabilities

By Rosemary Hoban

In June 2011, the U.S. Department of Justice announced the results of an eight-month investigation of North Carolina’s mental health system. The DOJ decided the North Carolina mental health system was in violation of the Americans with Disabilities Act in its housing of people discharged from state psychiatric hospitals, and also violated the Supreme Court’s Olmstead decision, which says states need to house people with mental health disabilities in the most integrated community setting possible.

Listeners of North Carolina Public Radio would not have been surprised.

Evolution of an idea

As the health reporter at North Carolina Public Radio-WUNC, I spent a lot of time writing stories about the state’s troubled mental health system. So, in the summer of 2010, when the Association of Health Care Journalists announced the first round of AHCJ Media Fellowships on Health Performance, supported by The Commonwealth Fund, I saw an opportunity to take a closer look at North Carolina’s mental health system and compare it to that of other states.

North Carolina initiated a reform process in 2001 that privatized most services provided to mental health consumers, in particular to those whose benefits were paid for by Medicaid and by state funds. The initiative has been troubled, marked by underfunded budgets, policy reversals and financial mismanagement. It seemed to me that some other states must be doing things better.

Mental health is complicated and is unlike the rest of the health care system. Almost every state organizes its divisions of mental health differently. Services are reimbursed differently (something that’s changing, but there are still big loopholes to mental health parity laws).

Given the complexity of the issues, I decided to narrow my focus to the problem of housing for people with mental health disabilities.

Why housing?

As in other states, North Carolina’s reform initiative centered on downsizing in-patient psychiatric facilities and discharging consumers. State officials made promises about the availability of housing and services in the community to cover those peoples’ needs. Gov. Mike Easley wrote a mental health trust fund into the 2001 state budget, with $51 million in seed money for developing such services. Two days after signing the budget into law, Easley raided the same trust fund of $37 million. Those dollars never came back.

For several years, I had been hearing from people within the disability community that the problem of housing for folks with mental health disabilities was steadily getting worse. As people were being discharged from state psychiatric facilities, they found few housing opportunities. More and more people with mental health issues ended up living in ‘adult care homes,’ small- to mid-sized facilities originally intended for elderly people. These facilities were not required to have any expertise in working with folks with mental health problems – residents only needed to require help with two activities of daily living (ADLs). For most mental health residents, that became medication management and provision of meals. Essentially, adult care homes were classic “three hots and a cot” facilities with provision of medications thrown in.

The problem gained notoriety in 2009, when four residents of adult care homes around the state killed fellow residents. Three of the victims were people with mental health problems. In the fourth case, an old man was beaten to death with his own cane by a man with a psychiatric disability. These incidents prompted review by a state-funded task force that produced a 400-page report,with non-binding policy suggestions.

In summer 2010, Disability Rights North Carolina (DRNC), the state’s federally appointed protection and advocacy organization, filed a formal complaint with the federal Department of Justice over the state’s use of adult care homes. DRNC charged that North Carolina was using the homes to warehouse mental health consumers in violation of the ADA and Supreme Court precedent and had reneged on its commitment to create community services promised in the reform process.

Money from the AHCJ fellowship allowed me to make a three-day visit to Nashville that became the pivot point of my series. I was able to show that a neighboring state with a similar population had been able to create housing for close to 10,000 people with mental health disabilities over a decade. In the same time period, North Carolina created fewer than a third of that number, at a higher price tag.

It was a topic begging to be explored and explained. In Georgia, a similar case resulted in a settlement between the DOJ and the state that eventually will cost Georgia taxpayers upwards of $75 million.

Resources for reporting on mental health

The National Alliance for Mental Illness (NAMI) always does a great job of explaining the the ins and outs of mental health services at the national and the state level. An expert at the national NAMI office suggested I visit the neighboring state of Tennessee to see what they had done to create housing for people with mental health disabilities. State-based NAMI experts helped me figure out the historical context of the problem.

Another national organization with many helpful experts is Mental Health America. (MHA is still known as the Mental Health Association in many communities; they’re undergoing a slow national rebranding.)

Every state has a federally mandated “protection and advocacy”‘ organization, such as Disability Rights North Carolina. You can contact the National Disability Rights Network to find out your state’s local ‘P&A’ organization. Advocates and attorneys with these agencies understand disabilities, and the national, state and local laws around guaranteeing services for people with disabilities.

The Bazelon Center for Mental Health Law in Washington was a tremendous resource. It has litigated around disability rights for decades and are in the forefront of legal thinking about the rights of people with disabilities.

The University of California, San Francisco Center for Disability Statistics provided background numbers, and researchers there were extremely helpful in pointing me to other helpful resources.

In North Carolina, I spent time with workers at the state’s Division of Health Service Regulation – the part of DHHS that oversees all health care facilities. Case workers there were happy to pull dozens of files on violations that I used to get an idea of what was happening in adult care homes. I created a spreadsheet from data they provided and used it to create an interactive map (using GeoCommons) of what facilities around the state had had violations that generated a penalty payment. Rules violations files always make for eye-popping reading and provide stories to flesh out a story.

AHCJ provided fellows with workshops in which we got background information tailored to our projects, where we workshopped our stories and where we got really helpful feedback.

I also interviewed advocates, service providers, legislators, lobbyists, housing experts, the state secretary of Health and Human Services and the head of the state’s association for long-term care facilities.

Finally, there are a few organizations springing up that are run by people with disabilities, for people with disabilities. One of these is the Coalition of Institutionalized, Aged & Disabled, a NewYork-based group that has created powerful videos and presentations that clearly present the desires of people with disabilities, without the saccharin.

What happened?

In mid-November 2010, as I was getting rolling on reporting, the Department of Justice informed North Carolina that it would investigate the housing situation for people with mental health disabilities. That really lit a fire under me!

One comment from an AHCJ workshop helped tremendously: People are intimidated and frightened by people with mental health problems, and it’s important to have sympathetic characters in stories about mental health.

I tried my best to actually visit an adult-care home to record interviews from people living there. I called every facility in the three main counties of the Research Triangle area – more than 90 in all – and was refused by every facility that housed psychiatric patients. Instead, I found “characters” for my stories by visiting “clubhouses” for people with mental health problems. Clubhouses are participatory organizations where folks with mental health disabilities go to learn employment skills, to hang out and to fit in. (If you want to start wading into the complex and fascinating world of mental health, doing a profile of a local clubhouse is a good place to start.) At three local clubhouses, I interviewed dozens of members to find the three people who could serve as main characters.

The support from AHCJ’s fellowship allowed me to hire a much-lauded public radio editor to go through these complex stories with me.

In April, I ran my series, Mental Health Disorder. In the wake of the series, state legislators and the head of the N.C. Housing Finance Agency asked me to connect them with people in Tennessee who have done work on housing. Several advocates and lobbyists told me they had pointed legislators to the series as a way to explain this complex problem. In May, Disability Rights NC asked me to present to them about what I found in Tennessee.

In June, the U.S. DOJ concluded that, indeed, North Carolina was in violation of ADA and the Olmstead decision and needed to rectify the state’s housing situation. In addition, CMS informed the state that about 2,700 people housed in adult care homes were receiving Medicaid payments for their care – something that’s illegal. Now, the state has both CMS and the DOJ pressuring it to rectify the situation.

In the last budget cycle, legislators and the governor didn’t agree on much, but they did agree on setting aside $75 million in a “mental health trust fund.” Although no one from the governor’s office would admit it, that’s approximately the amount that Georgia had to pay to settle its housing issues with the DOJ.

I won’t claim that all this is because of my series. But I will claim that my listeners, and maybe some legislators, have a better idea of why this situation has come to pass, and will be willing to address these longstanding problems, even in a lean budget year.

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Rose Hoban (@rosehoban) is the health reporter for North Carolina Public Radio, WUNC.  She has been reporting on health care in the state for six years. She was a nurse for 12 years and has a degree in public health policy. She reported this series while on an AHCJ Media Fellowship on Health Performance, supported by the Commonwealth Fund.