Sunday, May 25, 2014

Battling Mental Illness: Internally, and Socially

In rural Georgia, a woman speaks about the difficulties of accessing mental healthcare and why improved services could be a matter of life or death for those in need of treatment. 

By: James Swift

When Angela Ely, 32, looks at the sky, she sees dragons.

“See, there’s its  tail,” she says, pointing at a billowy splotch hanging in the bright blue sky. As it spreads across the heavens, she recalls one of her favorite childhood movies, “The NeverEnding Story.”

“What’s that thing called, an Atreyu?” she says. “No, it’s a Falcor,” she corrects herself, in reference to a furry, mythical creature from the 1984 film.

Ely, her fiancĂ© and her youngest child live on a hilltop in Cartersville, Ga. It’s a fairly large one story home, with a big backyard. It seems like a nice piece of property; that is, until one hears the deafening roar of passing trains. Next door, a child runs screaming down the road, his father in hot pursuit with what appears to be a rolled up newspaper. Ely just shakes her head; incidents of the like, it seems, are anything but atypical scenes from the neighborhood.

She begins her days with two or three cups of coffee, then its time for her son to catch the bus. After that, she drives her fiancé to work. She voluntarily takes weekly parenting classes, and Monday through Friday, she attends an inpatient mental health program; she gets home just in time to pick her kid up at the bus stop. She said most days, she spends her afternoons doing homework while her son plays Minecraft. If she has free time, she usually spends it on Skype, watching anime or browsing free book downloads on her Kindle.

The walls of her home are covered in pastel crayon markings. Members of a local advocacy group have offered to help paint over them, but she finds some of her son’s drawings endearing. She likes the smiley faces he’s scrawled, but the blurry, swirling red blobs remind her too much of a Rorschach test.

When speaking about the state of social services in the area, Ely once again brings up the mythological serpentine monsters. “You know, DFCS is kind of like a dragon,” she said, referring to the Georgia Division of Family and Children Services. “I wonder how many knights they’ve eaten, without them knowing they were the dragons?”

A Difficult Life

The walls of Ely's home are covered in her son's crayon scrawlings. 
Rather than finding them unsightly, she said the drawings are often 
a source of comfort.
When she was just seven months old, Ely was adopted. She said she’s never attempted to locate her birth parents. Her adoptive mother remains in Ely’s hometown, Rydal, Ga. Her adoptive father passed away last year.

At age 11, Ely was diagnosed with clinical depression. Over the next two years, she would also be diagnosed with bipolar disorder and post traumatic stress disorder (PTSD.) Prozac, Lexapro, Paxil, Wellbutrin; “just about every antidepressant you can name,” she said, “I was probably on it.”

At age 13, Ely said she was raped, resulting in a pregnancy. For years afterward, Ely said she was terrified of men. She feared developing relationships, believing that she would be abandoned or seen as “dirty” after coming forward about what happened to her.

After high school, she joined the United States Navy. She was discharged after experiencing a “nervous breakdown.” She said she faked a suicide attempt, so she could visit her gravely ill grandmother. By the time Ely returned home, however, she had already missed her funeral. Ely said she coped with her grief by becoming a rebellious “bad-girl type.” She drifted from abusive relationship to abusive relationship; alcohol, drugs and prostitution followed.

Eventually, Ely enrolled at a private university. “Being in college, it had kicked me off my dad’s insurance and I wasn’t working so I didn’t have work insurance,” Ely said. “I was back off my medication, and I actually walked in front of a Coke truck one day.”

She said she’s had seven suicide attempts, all of which required hospitalization. “Once, I had a drug overdose and my heart stopped in the ambulance,” she said. Her very first attempt, she recalled, occurred when she was just 12-year-old.

She dropped out of college, a few credits shy from graduation. She found herself living in a women’s shelter for a brief period of time. “I honestly don’t know what happened,” she said. “Something felt wrong with me, or in my life. I was missing something, I had too much of something, I could never figure it out.”

She would return to school, and graduate with a degree in accounting. By the time she graduated college, she had given birth to two sons.

The diploma, however, did not translate to a stable career. “The longest I worked,” she said,  “I was actually a student worker at the college.”

Lost in the System

Divorced, she found herself moving back in with her parents. She then moved in with a new boyfriend; the two have been together for the last seven years. While living in Gordon County, Ely said she rarely had difficulties accessing Medicaid services through their Division of Family and Children Services branch. Her experiences with the Bartow County branch, however, have been a different story.

“My main problem is DFCS termination,” she said. “Every so often, you come up eligible for review. They don’t tell you when it’s going to be, they don’t give you any warning.”

Several times, she recalled receiving service cancellation letters. She said she hardly ever received mail or phone calls notifying her when her review periods actually were.

“I’ll have insurance for three months,” she continued, “and I show up one day for therapy, or to get my meds refilled, and it’s ‘I’m sorry you don’t have any insurance.’”

Her last cancellation notice was sent to her last fall, around the same time Georgia’s DFCS had transitioned to a new, online-centric statewide system. “The reason it took six months instead of three months this time to get my insurance back ,” Ely said, “was because -- after two years, I think the probation period is -- your Medicaid will actually switch from DFCS to your Social Security. Your Medicaid is required to pay your Medicare premiums, from what I understand.” [See Sidebar "How Can Medicaid Pay for Medicare Premiums?"]
Ely said she's had constant difficulties with DFCS services, with
her Medicaid insurance abruptly cancelled numerous times.  

In Georgia, all Medicaid applications that go through DFCS must be processed within a certain amount of days after being originally submitted. When she reapplied for services, Ely saw her first attempt “lapse” through the system altogether -- meaning, essentially, that her application was never keyed into the system at all.

She was denied renewal on her second attempt. “They could not tell me why,” Ely said. “All they would say is ‘SSI,’ and I’m like ‘I’ve had SSI for two years…what’s going on?’” Eventually, Ely was told that her pending Social Security Disability Insurance was what was keeping her from obtaining Medicaid services through DFCS -- although under Georgia provisions, such a scenario is very unlikely. [See Sidebar "What Wrong with Ely's Application?"]

“DFCS couldn’t even tell me that,” she said. “There’s a complete lack of communication, lack of care, and a lack of dependability. You can’t get them on the phone, and you’re lucky if you sit there, from the time they open to the time they close, and  [see] someone in person.”

As do many Georgians dependent on DFCS services, Ely believes the agency requires a total overhaul. “I don’t know if they need more workers to do what they do, or if it’s to the point they just don’t care anymore, as long as they get their paycheck” she said. “But something seriously needs to change.”

Getting the Necessary Services

Today, Ely receivess both Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). The services, especially regarding mental healthcare treatments and access, are far better than those offered via DFCS, she said. “With disability, if something happened and I didn’t have a car or a way to class,” she said, “they offer non-emergency transportation, so I never have to miss therapy again, or wait a few days to get my medication.”

She said she has more than a dozen mental health diagnoses, ranging from seasonal affective disorder to borderline personality disorder. Recently, she said one of her doctors has looked into adding high-functioning autism, as well. “For three medications, I’m paying about $3.40 a month,” Ely said. Without insurance, she said she would be paying around $2,000 a month out of pocket for her prescriptions.

Ely said her disability services also cover her “partial inpatient” treatments and daily parenting classes. “Having been through this crisis intervention so many times, there were very few things that Medicaid did not cover,” she said. “And there’s even less that SSI doesn’t cover. So far, there’s nothing that I’ve requested that’s been denied.”

There is no way she could afford private insurance, Ely said. “Even when we were having good years, my mental health will not allow me to keep a job,” she said. “I have never been able to maintain stability long enough to keep a job, to even begin saving up for the insurance.”

Her youngest son receives Medicaid through Amerigroup’s Georgia Families program; on an Individualized Education Plan (IEP), he also receives psychological and psychiatric services. Her mother has custody of her other two sons; the daughter she gave birth to as a teen, Ely, said is now attending college on a soccer scholarship.

Non-emergency medical transportation, crises hotlines and individualized care case managers, Ely said, are all essential components for mental and behavioral health-targeted services. “When I get out of inpatient, if I can’t find a psychiatrist, I’ll need something to fall back on, a safety plan, of some sort,” she said. “Just having that last resort, back-up option is a huge relief now that I used to not have.”

A Life or Death Matter

“Without my meds, I just completely shut down,” Ely said. She described the toll extreme depression and anxiety had taken on her body.

“I would not exercise, I was not eating right, I wasn’t even bathing or brushing my teeth,” she said. “The [methamphetamine] took a lot of enamel off my teeth, and through my total lack of care, I am going to end up needing dentures.”

She relights her cigarette. “I’ve gone through hell to look like hell,” she said with a hoarse laugh. “But if you’re going to judge me, know what I’ve been through.”

Regarding Georgia’s decision to not expand Medicaid under the Affordable Care Act, Ely feels conflicted. For those with mental health issues, expanded services can only be seen as a positive, yet she feels that taxpayers are unfairly burdened at the same time.

Ely said she feels conflicted about social service programs. One one 
hand, she said she hates that others are paying for her health 
expenses, but at the same time, she said without Medicaid, she likely would've died years ago.
“Why should somebody who is sane, functioning and able to work, pay for me?” she asked. “I’m incapable of working. Why should anyone have to support me, unwillingly?”

But without Medicaid-provided services earlier in her life, she said she may not have survived this long.

“Where would I have ended up?” she said. “In whatever damn graveyard they decided to put me in.”

With tears welling up in her sea foam green eyes, she continued.

“You’re out of control because you are off your meds, you’re not stable,” she said. “If I mean so little to the world that they wouldn’t help me get better, to protect the people around me, why am I even here?”

In Ely’s eyes, mental health investments aren’t just necessary for those in need of psychiatric or behavioral healthcare, but for society as a whole. “Stress and anxiety is a part of everyday life for so many people,” she said. “That’s a way of thinking, that’s something you can learn to cope with, by using the same skills you learn in mental healthcare.”

In terms of state level remedies, she would like to see drug coverage expanded and mental healthcare services in Georgia become more inclusive. In her current city of residence, for example, she said she does not have access to psychiatrists who accept Medicaid or who aren’t affiliated with a hospital. “Mental health affects so much of your life,” she said. “Yet nobody accepts the only kind of insurance that most mental patients can get.”

And it’s not just those with severe mental health disorders that are adversely affected by a lack of public investments, she said; indeed, everyone around those with such disorders, Ely believes, are impacted in some manner.

“By avoiding the topic and of mental health and by saying that we’re not worthy of it,” Ely said, “you’re going to hurt everybody who is associated with them.”

The end result, she said, is a cycle of sorrow.

“It’s a never-ending chain,” she concluded, “of nothing but pain.”

Uncommon Journalism, 2014.

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