Wednesday, February 13, 2013
Jennifer Michaels* traces her mental-health problems back to Hurricane Katrina in August 2005, when she was 12 years old.
"We had 9 feet of water, and we had a one-story house," she said.
Michaels was living with her grandmother at the time, but during the storm they went to her mother's second-floor apartment on the east side of New Orleans, near Lake Pontchartrain.
There, they watched the water rise.
She remembers doing homework a day after the storm, because she didn't want to make her teacher mad. Even when she saw cars disappearing under the murky water, she thought that the school bus would pick her up the next day.
A week later, a boat rescue moved them to a bridge to wait all day in the broiling August sun. Then a military truck picked them up and offloaded them on the causeway with hundreds of others to wait some more in the dark. Mud was everywhere.
"I remember my grandma falling," she said. "That was scary."
Michaels' grandmother has diabetes, and her mother has high blood pressure. Because both needed medication, the small family got picked up quicker than some others. The next conveyance was a yellow school bus filled with mostly older people, some of whom had urinated on themselves. Michaels still remembers the smell.
Hours later, the trio found themselves in Texas at the Houston Astrodome. The space was filled with cots, with barely room enough to walk between them. They got out as fast as they could and found a motel room, where they stayed for another week.
Other than clothes and medicines they received in the Astrodome, they had almost nothing, not even the family dog, which they had left behind in New Orleans.
"We got her back maybe a month after," Michaels said. The Humane Society had rescued the dog. "That was fun."
The family ended up in Jackson, where other family members lived, and Michaels' mother took a job with a local nonprofit. Michaels remembers seeing a counselor there, "just in case" she might be experiencing some post-traumatic stress disorder--PTSD--from the ordeal.
For a few months, Michaels attended a Jackson public school, which she said was "very different" from what she was used to. It was the first time she was in a public school, the first time in a classroom with more than 20 students. In New Orleans, she had been in private school.
"It's not like the race thing was different," she said. Her old school was majority African American, as she is. But, she said: "They talked different from me; they talked about different things. They didn't listen to the same popular music."
Michaels was enrolled in advanced placement classes, which deepened her isolation from most of the students.
Her mother soon transferred her to a private school where blacks were in the minority--another first for Michaels. From an academic standpoint, it was closer to what she was used to. But she didn't talk about Katrina, or what she had been through. At her mother's prompting, she had a few art-therapy sessions along with another displaced student from New Orleans.
The school proved to be traumatic in a different way. Early on, Michaels made friends with a lesbian. Michaels is not homosexual, and she didn't think it was a big deal, either way. But it mattered to others, and she lost the few friends she had made. At the same time, the brutal truth of her situation--that the family wasn't going back to the city of Michaels' birth--hit her.
"I started realizing, 'Man, there are people I'm never going to see again, and people I didn't get to say goodbye to,'" she said. She began to dream about the storm and the people she left behind. "I wanted to go home. ... I never thought that I would end up staying in Jackson."
"It was there that I started cutting myself," she said.
Dancing and Superman
On March 10, 2010, the Montgomery, Ala.-based Southern Poverty Law Center sued then Mississippi Gov. Haley Barbour along with a handful of state mental-health administrators on behalf of several teenagers whom the state was holding in mental institutions. All of the children's problems stemmed from trauma.
Court documents describe 17-year-old J.B., who had been in foster care most of his life, initially because of his mother's neglect and abuse. His behavioral and emotional problems caused the state to shuffle him between hospitals, homes, shelters and detention facilities. The state committed him to the Specialized Treatment Facility in May 2009. While there he wrote an autobiography, which he hopes to publish one day. During his STF intake, he shared these wishes: "To rewind time; to show my mama that I can be a better child; to be independent and on my own."
L.P., also 17 at the time of the suit, was sexually abused from a "young age." She began displaying emotional and behavioral issues at age 8, and ended up in a hospital at age 10. Her wishes are simple: "For my family to be back to normal; a place for me to live so it can be like the loving family that I have always wanted."
The suit describes L.M., 16, as a "lively, outgoing child who enjoys dancing and Superman." He had been molested at age 7, and discovered his grandmother's dead body at 13, among other traumas.
The list goes on. None of the children received the community-based mental health proscribed under the law.
"We have been one of the last states to heed the warnings of 'One Flew Over the Cuckoo's Nest' (a 1962 novel and 1975 film) and some of the advances that were taking place decades ago," said Brandon Jones, executive director of the Mississippi Democratic Trust and a former state representative. Jones has been deeply involved in issues of mental health and domestic violence, and recently organized a forum on mental health at the state capitol.
Mississippi has come around to understanding that the current model needs to be revamped, Jones said. Community-based mental health just works better than institutionalization. It's also the law.
Vanessa Carroll, senior staff attorney with Southern Poverty Law Center and lead attorney on L.P. v Barbour, points to a landmark U.S. Supreme Court case, Olmstead v. L. C., as a basis for the suit.
"(Olmstead) reverses the unfortunate trend that was the status quo that in the country for many, many years that it was OK to segregate individuals with disabilities in hospitals and institutions and remove them from general society in order to provide them with care," Carroll said.
"We know very well that that approach isn't necessary. It's actually possible to serve people with a range of disabilities in integrated settings in the community--and it's actually cheaper to do that."
The Olmstead case, decided in 1999, has been coined the equivalent of Brown v. Board of Education for people with mental disabilities. In the 1954 Brown case, the U.S. Supreme Court held that separate schools for white and black children was inherently unequal treatment under the law, and ruled the practice unconstitutional. It was a landmark ruling that ended legal school segregation. Enforcement of the law for some states, including Mississippi, came only after years of struggle and bloodshed--and frequently, at the hands of federal troops.
The Magnolia State finally grudgingly complied with Brown in 1970.
In the 1999 Olmstead v. L. C., case, the Supreme Court affirmed the Americans With Disabilities Act, which states, in part that "the isolation and segregation of individuals with disabilities as a serious and pervasive form of discrimination."
Olmstead involved two mentally retarded women, L.C. and E.W., who were voluntarily admitted to Georgia Regional Hospital at Atlanta, where they were confined for treatment in a psychiatric unit, according to legal documents. L.C. suffered from schizophrenia, and E. W., with a personality disorder. "Although their treatment professionals eventually concluded that each of the women could be cared for appropriately in a community-based program, the women remained institutionalized at GRH," Olmstead states.
The decision upheld a lower court's ruling that "states are required to place persons with mental disabilities in community settings rather than in institutions when the state's treatment professionals have determined that community placement is appropriate." It also said that lack of funds is not an excuse to discriminate. "Unjustified placement or retention of persons in institutions severely limits their exposure to the outside community, and therefore constitutes a form of discrimination based on disability."
The case fueled a nationwide campaign to move patients out of mental institutions and into the community, where they could live, go to school and work within a framework of home and family. But, as with so many of its health-care policies, Mississippi is behind the curve.
A few days before Christmas in 2011, Barbour received a 40-page letter from Thomas E. Perez, U.S. Assistant Attorney General. The letter, dated Dec. 22, 2011, was a report of findings subsequent to an investigation of Mississippi's system "for delivering services and supports to thousands of persons with mental illness and/or developmental disabilities (DD)."
"Our review reveals that the State of Mississippi has failed to meet its obligations ... by unnecessarily institutionalizing persons with mental illness or DD in public and private facilities and failing to ensure that they are offered a meaningful opportunity to live in integrated community settings consistent with their needs," the letter continued.
The federal government framed its investigation under Olmstead as a civil-rights issue, "focusing on potential issues related to the unnecessary segregation of people with disabilities," Perez wrote.
Mississippi, the letter continues, "is the most institution-reliant system in the United States," a system that not only deprives patients of their civil rights, but costs the state's taxpayers a fortune. More than half the state's mental-health budget goes to institutional care, where the annual per-patient cost is $150,000. For adults, such care is not eligible for federal Medicaid matching, which means it comes completely out of the patients' or taxpayers' pockets.
"Serving a person with mental illness in the community costs as little as $44,500 per year and enables the State to pay for the majority of those services with federal Medicaid dollars," the letter s. The matching rate is 74 percent. "Mississippi could serve ... four persons with mental illness in the community for every one it serves in its institutions."
'I'm Going to Kill Myself Today'
When Michaels was in the 10th grade, counselors put her on antidepressants, and Michaels' mother put her in yet another new school. She said her relationship with her mother is close; they talk every day. Still, Michaels' depression and self-harm is taboo.
Then Michaels stopped taking the antidepressants.
"I felt like they didn't work. I was so sad when I was taking them, and I still wanted to hurt myself," she said.
"One day I woke up, and I was like, 'I'm going to kill myself today.'"
She counted out 24 extra-strength Tylenol and took them all. She called a friend to tell her what she had done when she didn't feel any different. "I don't know if it's going to work," Michaels told her.
"All these times when I was hurting myself, my mom was in her room, which is right next to my room," she said. "Sometimes she would hear me screaming or crying, and she would try to come to my door and try to come in. But I would lock it. Sometimes she would force her way in--or not. But we would never have a conversation about my being upset or depressed."
At the urging of her friend, Michaels went to her mother and told her what she had done. "I don't think it's going to kill me, but I think I might need to go to the doctor," she remembers saying. Her mother immediately took her to St. Dominic's Hospital, where doctors gave Michaels drugs to make her throw up the pills.
"Then, they wouldn't let me leave," she said. Doctors can hold patients who need care for up to 72 hours without a court order. St. Dom's gave Michaels, who lacked health insurance, only a couple of options of where they would send her for treatment: Pine Grove in Hattiesburg or another facility even farther from Jackson. They strapped her to a gurney in an ambulance and transported her three hours away to Pine Grove.
One of her roommates there had attempted to jump from a moving car on the interstate, Michaels said. The other had run away from her foster home, "because she was bored, basically." The second girl had been at Pine Grove twice before.
Michaels was in the facility for a month. She could talk to her mother by telephone twice a week at set times. She wasn't allowed to speak to any of her friends, only family, though once, her mother gave a friend the phone so the two could talk. Her mom came for once-a-week visits.
Everything at Pine Grove was highly regimented. The girls could not spend time in their rooms except at night, and privacy was limited to a nightly shower, the only place that didn't have cameras--that she knows of--and other people.
First thing in the morning for a few minutes, the patients saw a psychiatrist who did little more than prescribe medications. They attended group sessions with counselors several times a week, and Michaels remembers a handful of 30-minute one-on-one counseling sessions. The facility offered precious few activities for the teens other than eating and watching TV, she said. Once a week, they went to an outside courtyard where the kids could play basketball. They received worksheets to complete for "school."
"They would bring in games, sometimes, like cards or monopoly or something like that," Michaels said. "They didn't have any books there. Eventually, I got my mom to bring me a book. One other person had a book. Everyone else would just sit there--all day."
Michaels remembered one early group session: "(The counselor asked), 'What have you learned?' And I was like, 'What kind of a question is that to ask?' ... So I said, 'I've learned that if I want to kill myself, I should not take Tylenol.' That was the wrong answer. ... I don't think anyone had a good answer for that question."
She learned that medications were easy to manipulate: When she wanted more, she would tell the psychiatrist how bad things were the day before. "I could've been on the strongest stuff in there if I had wanted to, because that's how much they didn't pay attention." As it was, she received Lithium, Prozac and another drug she can't remember.
Most of the kids at Pine Grove while Michaels was there had behavioral issues; others had attempted suicide. "School" was chaotic, and there was no teacher. If someone acted out, nurses isolated them in a small room. Michaels could hear kids screaming sometimes. At night, she heard them crying, sometimes for their mothers.
'Maybe It's Normal'
John Damon is the CEO of Mississippi Children's Home Services, a 100-year-old organization that began as an adoption agency. MCHS holds the statewide contract for family preservation and reunification. Community-based mental-health services make up about 60 percent of what the organization does.
"Every child wants to be home, even if they've had a horrific family situation," Damon said.
To fulfill its mission of preserving the family, Children's Home goes directly into a child's home to provide support to both the child and the family. Often, that support takes the form of an intervention. The voice of the children and families always comes first. "We want the family to help guide the treatment," Damon said.
He singled out one of the programs, MYPAC, or Mississippi Youth Programs Around the Clock, as a particular success. The federal government awarded $50 million grants to nine states to develop community-based programs to bring mental-health care out of institutions and into the community. "Mississippi led the country, both statistically and in outcomes," he said. The Division of Medicaid oversees the state's program, which Damon said serves as a national model.
"We've been the cutting edge of how to deliver community-based services," he said.
The children and their families participating in MYPAC receive intensive case management, individualized services that focus on the strengths and needs of the child and family, and respite services, which provide caregivers much-needed breaks.
The children, the parents or guardians and the MYPAC providers develop the service plans together. Those providers are expected to be available to participants and their families around the clock.
"We're not in the business of raising children," Damon said. "We're not interested in raising children. We believe children should be raised by their families."
With all the work Children's Home is doing to advance community mental health care, the MYPAC program served only 600 people in 2011. That means a lot of Mississippi's children--the University of Southern Mississippi School of Social Work Research put the number at 1,025 in 2011--are still placed into psychiatric institutions. Worse, others are fed into the juvenile-justice system where they may never find their way to being productive members of society.
"If children don't get the kind of services and support they need in the community, where they end up is in jail or in long-term psychiatric treatment facilities," said Joy Hogge (pronounced "hoag"), executive director of Mississippi Families as Allies for Children's Mental Health in Jackson.
"Acute psychiatric care gets over-utilized because there is no place else to go and no other help available."
Families as Allies maintains a laser focus on ensuring families are involved in the care and treatment of their children, focusing on support, education and advocacy. Caseworkers, called "family partners," all have children with mental or emotional problems, and they each work with about 20 families, helping them navigate the state's often-daunting school and health-care systems to ensure the best outcome for their children.
It takes a discerning person to understand what is normal behavior and what is a problem. For teens especially, the brain is still developing the areas responsible for executive planning, reasoning and judgment. "All the places adolescents flub it," Damon said. "Sometimes we misconstrue an adolescent pushing back as oppositional defiant disorder. Well, maybe it's absolutely normal."
"Once you really have an understanding of what is happening inside your child's brain, you have more empathy for them," he said. "Changing how you think about them changes how you act toward them."
Education—of parents, guardians, teachers, counselors and even people in law enforcement and in the judiciary—is critical to shift attitudes toward care and away from punishment.
'Walking the Walk'
Tara Manning and Coreaner Price work as family partners with Families as Allies. They each have about 20 families on their case load. Both also have two sons with multiple mental-health problems. Between them, the four boys exhibit a nightmare list of mental illness: obsessive compulsive disorder, attention deficit hyperactivity disorder, oppositional defiance disorder, bipolar disorder, depression, anxiety, Tourette's syndrome, a suicide attempt.
Manning and Price use their experiences to assist other families, doing everything from research into their children's maladies to accompanying them to meetings with teachers, school administrators, and to psychiatric and doctor appointments. Their presence ensures that the children and families have strong representation and an unemotional partner to ask the right questions and get clear answers. The goal, Manning said, is to be "advocates, but not adversarial."
Much of what family partners do is to remove the shame of mental illness--for the children and families they represent and for the professionals who are in positions of authority. The misconceptions are something Manning and Price are intimately familiar with.
"I had to deal with the constant stigma of teachers telling (my son) he could control his behavior," Manning said of her youngest boy. Teachers wanted him to sit down, be still and stop his obsessive talking.
They would put him in time-outs, send him out of their classes, or make him sit by himself during lunch.
She started keeping a journal for her pediatrician. In retrospect, some of the issues her youngest was dealing with had also occurred with her older son. "(The behaviors) had been there for a while, but I had never heard of any of this," she said of the alphabet soup of ailments.
Despite her sons now receiving diagnoses, counseling and numerous prescriptions, Manning is on call day and night to respond to her sons' many issues. The constant calls from school took their toll. Manning lost a job as a clerk in a law office because of frequent, almost daily absences from work. She understands why the firm had to let her go; she was always behind. "At first I was angry," she said, but then she realized that it was God's way of letting her know that her children needed her more.
Manning spent the next year becoming an expert about her sons' ailments. She found the scarce local resources to help--a Tourette's support group, for example, and Families as Allies. Still, she struggles to keep an open mind and has to remind herself that her sons' issues don't define the totality of who they are. "I accept it for what it is (and ask myself), 'Now, Tara: What are you going to do to help your kids,'" she said.
"I have to believe in their abilities, not their disabilities," she continued. "I focus on their needs rather than being understood; there's a difference. The biggest thing of all is that I have educated myself about their mental-health diagnoses."
Her experiences help others to understand that they're not alone.
"I can talk the talk because I'm actually walking the walk on a daily basis," Manning said.
Manning's colleague Price takes responsibility for her two boys' shutting themselves off from her. She was in an abusive marriage, and like many women, she had a tough time getting out of the relationship. She also has three other children to care for.
By the time she realized she had to get help for her two sons with disabilities, gangs and drugs had entered into the picture.
Her upbringing taught her that "What goes on in your house stays in your house," she said, and her husband preached that if a man shows emotion or cries, he's weak.
"I was always pointing out the bad things," she said.
After both boys ended up in alternative schools because of their behavior, Price knew she had to get help. She hesitantly enrolled in a CommUNITY Cares program where she lives. The program emphasizes the importance of family, school and community, and promotes the full potential of every child by addressing physical, emotional, intellectual, cultural and social needs, the program website states.
"They didn't judge me," Price said. "Everything I was saying, they were listening to me. Everything I was going through, they understood."
Price's case manager talked to everyone in the family individually and asked them to each write down what they wanted.
"When we all came together, our family vision was the same," Price said. "We all wanted to see the same thing happen. ... For all of us to be able to sit in a room and laugh and talk and get along."
Even with the support of the program, though, Price's sons had difficulties in school, especially because they've been in alternative schools. Zero-tolerance policies push kids out of school, she said. Teachers and administrators targeted and scapegoated her sons. When there's a problem, they rarely got the benefit of the doubt. Instead, they were the ones hauled off in handcuffs. Eventually, her oldest dropped out, convinced he couldn't get fair treatment. School officials even tend to punish Price's daughter, an honor-roll student, because of her brothers' reputations.
Manning and Price are both dealing with children aging out of Medicaid. The boys' options for health-care assistance under the program become severely limited in Mississippi as they become adults at age 18.
Both mothers have serious concerns about their sons' futures, between limited job and educational opportunities and inadequate access to medications. But both moms make sure their sons know their mothers will always be in their corners.
"They can never say, 'Mama didn't help me,'" Price said.
"It gets hard sometimes--most of the time--but I still stand strong," Manning said. "I'm taking control of the situation; I'm not going to let the situation take control of me."
The two mothers said that families can find help, but emphasize that an educated parent is the best defense. Parents know their children's needs better than anyone else, they said. Both rely on their own mothers and families for support and respite. Manning's mother cares for her youngsters on weekends, she said, and Price's other children are the first to advocate for their disabled brothers.
"Don't be ashamed to go out and get help," Price said. On the other hand, "don't let anyone tell you what your child needs."
Manning said that as much as she loves her job helping other families, she would leave her job tomorrow, if necessary, to take care of her sons full time.
"Those are my kids," Manning said. "I had them. They didn't ask to be here; they didn't ask to have what they have."
To this day, no one other than her mother, grandmother and a mere handful of friends know about Michaels' depression or cutting. She believes two of her cousins have mental-health issues, but the family doesn't talk about it.
Her grandmother, she said, is ashamed. "She doesn't understand mental disabilities," Michaels said. When she's having problems, the rest of her family just thinks she's being "weird." She can't be open with most of her family, and that hurts. "They can't offer me support if they don't know they need to be there to support me," she said.
Michaels told her story unemotionally, except when she talked about her breakup with a boyfriend, which she said is because of her disability. She speaks deliberately. In social situations, she said, she has to force herself to laugh at things she knows should be funny, even though they don't feel funny to her. The drugs keep her from getting too "high," but she can't watch emotionally charged movies, either, because they affect her too much. Michaels said she's tried to kill herself again by taking an overdose of Lithium, but she threw up the pills.
She get prescriptions through the state's Region 8 Mental Health Center in Canton, but she no longer takes Lithium. Michaels is not receiving any counseling in Canton, just refills for her drugs.
Though Michaels said she has never received a diagnosis, she regularly takes four drugs (two for depression, one for attention deficit and hyperactivity disorder--ADHD--and one for anxiety) and has a fifth, Klonopin, for when things get really bad--though she's not clear what that might be. (Doctors prescribe Klonopin for seizures and for panic disorder.) She's supposed to take the Klonopin every day, but it makes her speech slow and slurry and her mind fuzzy. She is unaware of any additional help available through the state Department of Mental Health.
Michaels functions remarkably well with her disability. She's a college junior, and she has two part-time jobs.
"If you want to function in society, you have to hide your problems," she said. "It's kind of like that expression: 'Fake it 'til you make it.' We're faking to feel happy, and some of us might think we're going to be happy one day. A lot think we're never going to feel happy, but we can at least put a smile on our face when we need to."
Michaels hasn't cut herself in about four months.
Luck of the Draw
Attorney Vanessa Carroll said Mississippi's mentally ill children and their families need a much stronger system to ensure the well-being of the children.
Institutions aren't good for kids. They can be abused and neglected in badly run facilities; removing children from their homes and schools can be traumatic, exacerbating existing problems; when a child's peers are only those who are struggling, they have a lack of positive role models. Often, children get worse instead of better.
"Sometimes, it's just luck of the draw which system a child ends up presenting to, whether that's juvenile justice or child welfare or to the emergency room," Carroll said.
"Trauma and unaddressed emotional needs often drive similar behavior. ... The approach should be seen as a public-health issue, and the right kind of intervention should be provided." Neither form of segregation is useful, she said, whether it's prison or a hospital. "We should be looking at what the child needs and wrapping the services around them."
It's significant to note that Mississippi has the second highest rate of incarceration in the nation, Carroll said. "That says something really profound about where we're putting our taxpayer dollars and how we're approaching public-health issues."
Few working on the ground in mental health believe lack of funds is the root of the problem. Budgeting is about values, Jones said. "(We) haven't had the concerted concern about mental health," in Mississippi.
But community-based mental-health care is making huge inroads, even in the Deep South. Since 16 months ago, Alabama has closed all of its large institutions for people with intellectual disabilities. The last one, the W.D. Partlow Developmental Center in Tuscaloosa, Ala., shut down at the end of September 2011. The state transitioned its 151 residents to community-based care.
"[A]pproximately 6,000 people with intellectual disabilities receive services through a network of more than 100 certified community providers across the state," Alabama's Department of Mental Health said in statement. "... Satisfaction surveys following the transition (of residents in other closed institutions) gave substantial evidence that clients and family members were very happy about the move to community life. Along with community life opportunities for Partlow residents, the department anticipates that by closing the facility it will be able to provide community services to additional consumers who are now on a waiting list.
"If Alabama can do it, we can," Carroll said.
Comment at www.jfp.ms. Email Ronni Mott at [email protected]
*Not her real name
Mental Health Resources
CONTACT the Crisis Line
Catholic Charities Diocese of Jackson
200 N. Congress St., Suite 100
Coalition for Citizens with Disabilities
2 Old River Place, Suite A
Hinds Behavioral Health Services
3450 Highway 80 W.
National Alliance on Mental Illness Mississippi
411 Briarwood Drive, Suite 401
Mississippi Children’s Home Services
P.O. Box 1078
Jackson, Miss. 39215
Toll free: 866-969-4079
Mississippi Department of Mental Health
1101 Robert E. Lee Building, 239 N. Lamar St.
Toll-free help line: 877-210-8513
Mississippi Families as Allies for Children’s Mental Health
840 E. River Place, Suite 500