Ordinary Folks Are Helping Those Who Fall Through the Cracks of Charlotte's Mental Health System
Creative Loafing - 3/8/2017
Robert Jones, Jr., has struggled with depression and anxiety since childhood. His obesity makes it hard for him to work, which adds to his despair. He has attended countless vocational and psychosocial rehabilitation programs over the past 30 years. None have had much effect, he says.
In the past six months, Jones has regularly attended the "Drop In" at St. Luke's Lutheran Church in south Charlotte. He doesn't receive any medical treatment at the St. Luke's. He just hangs out there and socializes with the volunteers and friends he's made. Jones also values the free groceries offered to him and others who attend the monthly program.
Those visits make a difference for someone who doesn't get out much, Jones says.
"I appreciate myself now. Actually being heard a little bit," he says. "It's getting out, away from the four walls that we are in."
Sharon Ballard, 51, was diagnosed with bipolar disorder 30 years ago. She says St. Luke's Drop In is a way to connect with others without the stigma of her condition leading to judgment from others. "People in the neighborhoods are scared of us," Ballard says. "And we are not really, like, a danger, as the media is starting to produce us as. Really, most of us, if we continue to take our meds and continue to get help, we OK."
According to the National Alliance on Mental Illness (NAMI), a nonprofit started by a group of families in 1979, 230,000 adults with mental illness live within a 100-mile radius of Charlotte. In North Carolina, more than 46 percent of adults with mental illness do not receive treatment, while 19 percent of those who have sought treatment have been unable to get their needs met. Those statistics highlight the effects of stigmas and gaps in services that the mental health community is trying to combat.
Although services, information and educational programs have increased over the past three decades, individual citizens asking the question, "What can I do?" have propelled mental health services forward in Charlotte.
There are traditional inpatient and outpatient programs provided through area hospitals, and yet large gaps in services still exist. But those individuals with clear visions for change is what has led to innovative programs throughout the Charlotte area. Grassroots campaigns are now being met with broadbased support from the community, which is pushing larger entities such as Carolinas HealthCare System (CHS) and Novant Health to join the effort to close the gaps.
The introduction to mental illness is usually sudden and traumatic. It can be a family member or friend who attempts suicide, has a manic episode or shows atypical behavior. When it happens, it is frightening and overwhelming - not only to the person suffering but to everyone directly involved.
More than three decades ago, Charlotte residents Virginia and Ernest Schumacher's youngest daughter was diagnosed with paranoid schizophrenia. She was a sophomore at UNC Chapel Hill when she had an episode and was hospitalized. A year later, her condition required long-term hospitalization. The experience propelled the Schumachers into a world that was foreign to them. It became clear that services for the mentally ill were minimal. They became advocates, not just for their daughter, but eventually for the mental health community at large. In the late 1980s, they joined NAMI and served on the state and local boards.
In 1990, Ernest Schumacher asked his pastor at St. Luke's, "What could we do for the mentally ill in this community?" The question prompted a series in which speakers from the mental health field would address the congregation, but that wasn't enough. At the time, there were no options or activities for people suffering from mental illness outside of a clinical setting.
Virginia Schumacher knew the community needed activities that would "boost them up, [make them] feel worthy, and know they have something to offer."
In 1991, with the blessing of their congregation, the Schumachers created an innovative program at the church called 'Drop In.' Twenty-five years later, they serve 70 to 80 guests on the third Saturday of each month with the help of 10 to 15 volunteers.
Guests at the St. Luke's Drop In arrive at 10 a.m. for a few hours of conversation, lunch, games, art and celebration. Some have been attending for years; others are newcomers. Most receive Social Security disability benefits and live in a group home or subsidized housing. Some bring rolling suitcases for an easier way to transport the crucial free groceries on their bus rides home. They take prescribed medication for any number of mental health issues like depression, anxiety and bipolar disorder.
In recent years, more citizens like the Schumachers whose lives been touched by mental illness have stepped up to help those who may have fallen through the cracks.
Linda Phillips is the author of Crazy, a novel about a girl growing up with a mom suffering from mental illness. Last year, with NAMI's blessing, she coordinated the opening of Providence Place - a similar program to St. Luke's Drop In - hosted by Providence United Methodist Church.
"It is designed to be a social opportunity for persons with mental health challenges who typically have fallen away from socializing, or socializing has fallen away from them," Phillips says.
Providence Place is held on the first Saturday of each month for people with mental health issues and their families and friends. The program includes a meal, bingo and activities such as writing workshops, art, music and icebreakers. Phillips aims to expand the availability of programs there.
Similar to Phillips, Charlotte residents Betsy and Bill Blue dove headfirst into the mental health field after a personal experience 10 years ago with a family member who needed care. They learned that once a patient leaves acute care in a locked hospital setting, the person's care is typically "stepped-down" to an outpatient day program called partial hospitalization. Participants in partial hospitalization programs attend sessions five days a week, several hours a day, then return home at the end of the day. Such a transition can pose problems if someone is not ready to rejoin society so quickly.
"The challenge of discharge," Bill Blue calls it. "I would say, 'Discharge to what?'"
That experience left the Blues wondering what they could do so other families wouldn't have to go through what they did. In 2013, they spearheaded the HopeWay Foundation.
The goal for the foundation was to build a residential facility for people with mental health illness that would serve as a step-down program for those leaving acute care at a locked hospital facility, while also offering treatment options for those who need help in other ways.
Until HopeWay, there was nothing offered for "in-between" acute care and partial-hospitalization in Charlotte. Once the Blues formed the idea for the facility, they received overwhelming support. Both Novant Health and CHS jumped on board to help.
The Blues raised $27 million dollars through 500 individual donors, family foundations and Charlotte's two hospital systems. Accessibility was also important to the founders of HopeWay. A $5 million portion of the endowment is set aside specifically to help with financial aid.
HopeWay Foundation opened its doors in December. It is a nonprofit residential and day treatment facility for adults with mental health issues. It is one of only a few places with this level of care in the United States. The programs offer individual treatment plans that include evidence-based care and education.
HopeWay incorporates therapies including art, music, recreation and horticulture using a holistic approach. It has a 12-acre campus at 1717 Sharon Road West that includes walking trails; a gym; a greenhouse and gardens; and classrooms for group therapy and community education programs. In the coming months, HopeWay will begin accepting private insurance and offering financial aid.
The growing efforts of local residents to deinstitutionalize access to mental health programs recalls a similar movement in New York City in the 1960s. Local volunteer Bob Evans was at the front lines of that development.
Evans spent most of his career in New York as a public health administrator and therapist. He watched as community outreach programs, clinics and day treatment services replaced the hospitals. The focus changed to access and support. Treatment focused on the patient.
"I think a lot of things came out of that movement that were very good. They even did things like storefront psychiatry. It was a very exciting time," he says. "I think one of the more healthy things that happened is that we tried to make the treatment more accommodating to the patient or the consumer."
Decades later, Evans volunteers his time in the Charlotte mental health community. He is the president of the local chapter of NAMI, which offers free educational programs, support groups and advocacy training. Evans' reputation as an advocate is widespread, and his knowledge and experience with mental health is valued in the local community.
Of the local gaps in services, Evans says, "I think one of the major problems is that the system has been redesigned and dismantled so many times over the past couple of years. So it is hard to get any kind of confidence on the ground. There is no long-term tradition that you can get your claws into, where we can say this is where our roots are."
Evans believes this lack of a foundation introduces fragmentation into the system. There is no clear path for people to follow for help or to participate in comprehensive programs. Of the staff at CHS Behavioral Health, a county program, he says, "[They] work very hard to do the best with what they have."
Evans serves as the link between nonprofit organizations, hospitals and individuals, and says "the relationships with the major institutions like CHS, Novant Health and the county program are all excellent."
Various organizations share resources and information. CHS gives NAMI space in their Randolph facility for monthly trainings and support groups, and CHS currently holds the contract for all services located at the Mecklenburg County Health Department on Billingsley Road. NAMI's educational coordinator meets with CHS's program staff on a monthly basis to make sure that NAMI information is getting to consumers in a way that is useful and meaningful.
"It helps take the friction out of the system to make it work a lot better," Evans says.
With certain residents inspired to step up by their own experiences with mental illness, and institutions working together more smoothly than ever, sustained care for the mentally ill is better today. But the stigma brought up by Ballard at a recent Drop In remains prevalent throughout much of society, particularly among those who have never known anyone to experience a mental illness.
Ericka Ellis-Stewart is the donor relations specialist at the Charlotte affiliate of Mental Health America (MHA), a nonprofit organization that has been active for more than 80 years. She says the community needs to be better educated about mental health.
"Any one of us can be impacted at any given time. We need to give people the tools and the opportunities to talk about mental health in safe spaces," Ellis-Stewart says. Three years ago, MHA launched Mental Health Matters: It's Time to Talk. It was a campaign to normalize mental health issues and educate the community. Local people shared their stories in public service announcements, then hosted Coffee Conversations, an hour-long opportunity to open dialogue, break stigmas and provide access to resources.
"It is a safe space to talk about what is often considered a taboo subject," Ellis-Stewart says.
Despite MHA's efforts, the fear of being labeled mentally ill is a critical barrier to getting help. "So many are suffering in silence because the stigma of being judged, the stigma of being discriminated against, the stigma of having people thinking you are crazy," Ellis-Stewart says. "When in actuality, the prevalence of this health condition is one in five. If you think about that in our community and across the nation, it is a significant number of people that are impacted in any given year. That stigma really prevents people from getting the help that they need." Ellis-Stewart says it can take eight to 10 years from the onset of the first symptoms for someone to get a diagnosis and treatment.
Eight of MHA's 300 affiliates are in North Carolina. The organization's primary focus is promoting mental wellness through advocacy, prevention and education. It advocates at the state and federal level, and tracks legislation in real time through a grassroots network of 700 people who are ready to take on a legislative call to action. It focuses on topics such as mental health funding, access to mental health services, insurance, Medicaid expansion, treatment, early intervention and confronting criminalization of the mentally ill.
An ongoing stuggle in the mental health field is that many people wait until they are in crisis before seeking help. Stigma leads many people who need help to hide their issues until they've reached emergency status. Ellis-Stewart compares it to people waiting to get treatment for diabetes or cancer. She points out that delaying treatment is a major reason for the large number of suicides among those suffering from mental health issues.
MHA is part of a national movement called #B4Stage4, aimed to confront that issue. "That campaign is really about how do we prevent people from waiting until Stage 4, which is the most expensive place to treat people; hospitalization and involuntary commitment. We are working toward early identification, prevention and early intervention," says Ellis-Stewart.
MHA also sponsors a prevention program called Compeer, which has operated in Charlotte for 25 years. It is a companion program similar to a Big Brothers and Big Sisters program. It matches a volunteer with an adult person struggling with a mental health condition.
"The goal is to get them together multiple times over the course of a month," said Ellis-Stewart. The evidence shows that the friendship reduces the number of hospital visits, increases the chance of compliance to their medication regimen and boosts their quality of life.
Jones is involved with a similar programs run through a separate program that he says has been highly effective.
"The peer program was the key to turning things around for my recovery. When I got the peer [program], things started taking off. They understand, they listen, they kind of relate to where you are at to the point that you can talk, you learn to trust, you learn to work, you learn to move," he said.
Another area of concern that continues to put those suffering from mental illness in Charlotte at risk is the shortage of psychiatrists in the area and the difficulty of getting an appointment.
Once a person leaves acute care at the hospital level, protocol requires that they see a psychiatrist within 10 days. If they're not able to do so, they will lose their access to crucial medications.
Dr. John Santopietro has been the chief clinical officer of behavioral health at CHS and chair of department of psychiatry for the past four years. He acknowledges the shortage of psychiatrists not only in Charlotte, but across the country.
"One of the reasons is that up until two years ago, starting in the late 1990s, early 2000s fewer people were going into psychiatry for medical school. The number of students going into psychiatry was declining. Training programs were unfilled," he says. "In the last two to three years, the pendulum has swung the other way. More people are going into psychiatry."
Santopietro has been interviewing candidates for the first class of residents and says he's received more than 1,000 applications for three positions in a CHS program beginning at CHS in June 2017.
With the number of psychiatrists coming out of programs increasing, Santopietro is more concerned with identifying what kind of psychiatrists are needed.
"Places like CHS are building the behavioral health of the future," he says. "We need psychiatrists that are ready for and excited about the behavioral health of the future because in that system, they will be called upon to do things more so than before; work in multi-disciplinary teams, like being clinical leaders of the team, like working across disciplines, like being comfortable with technology. Telepsychiatry being one example of that."
While the medical field plays catch-up, folks like the Schumachers, who retired from the Drop In in 2014, enjoy seeing what they started continue to flourish.
"It's still going on. That's what we wanted to see," Virginia Schumacher says. "We wanted to see that it would continue because we know how desperately it is needed. And that's what I care about."