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Damaged by a dysfunctional system and determined to change it – Wheeler

Tim and Dawn Woody pose with photographs of their family Wednesday, July 6, 2016 at their home in Apex. Their 24-year-old daughter has bipolar disorder and has been in and out of 22 mental health facilities in less than five years.
Tim and Dawn Woody pose with photographs of their family Wednesday, July 6, 2016 at their home in Apex. Their 24-year-old daughter has bipolar disorder and has been in and out of 22 mental health facilities in less than five years. tlong@newsobserver.com

In our state, an inmate with severe bipolar disorder can spend 4,800 agonizing days in a row – 13 years! – in solitary confinement.

In our state, a 5-year-old child in mental distress can endure more than 240 hours – 10 days! – in an emergency department waiting for a psychiatric bed.

In our state, Donna Kay Smith’s son can be committed four times in seven months because a hospital won’t keep him long enough for his medicine to work. And Tim and Dawn Woody’s daughter can be forced to enter a 23rd mental health facility, this one 800 miles away, because no affordable therapeutic communities exist here to ease her transition back to life after a psychiatric event.

Smith, the Woodys and scores of other North Carolinians scarred by our dysfunctional mental health care system have had enough. They are channeling their outrage into creating Stand By Me NC, an all-volunteer nonprofit they vow will not be ignored by those with the power to create a better system.

“We are frustrated that we live in a state where a man can die, dehydrated, lying in his own urine and feces in a jail cell or in a chair feet away from the staff caring for him,” said Smith, citing the deaths of two men with mental illness in North Carolina. “Where 80 people can sit in an emergency room for a weekend waiting for treatment with many being discharged without finding it.”

Last month, about a dozen people met to nail down a mission for the group, whose board of directors will include Smith as chairman, Dawn Woody as vice chairman and Tim Woody as secretary-treasurer. A community kickoff event is set for Aug. 21 in Cary. Gathering people who care about mental health issues into a nonprofit that can replicate the public awareness successes of autism or breast cancer groups is one goal.

It’s easy to point out the problems with mental health care in North Carolina: Too few in-patient beds. Ridiculous insurance rules. An absurd involuntary commitment process. Haphazard support for housing, jobs, rehabilitation, transition – which leads to the need for those beds. No continuum of care. Few therapeutic communities.

It’s difficult to offer solutions. But two things are paramount, Smith says.

▪ One, the system needs to engage people with mental illness as a part of treatment and not as the object of treatment. “The system does not ask the person what they need – it tells them what they need and what they can have,” says Smith, whose adult son has bipolar disorder with psychotic features. “Until our community begins to see the people and the lives which lie behind the umbrella of mental illness, this situation will not change.”

▪ Two, North Carolinians must realize that their mental health care system isn’t even a neutral force. Often, it is a destructive one.

“More often than not, care for mental illnesses is ineffective and a painful, damaging experience – on every level for everyone,” Smith says. “These illnesses are horrible any way you look at it. However, they are not the degree of horrible we live them at today in North Carolina because of the systems that exist. And that’s just wrong.”

Last year, Robin Rancer Betts of Chapel Hill commented on a news article detailing North Carolina’s shortage of more than 350 psychiatric beds by saying:

“My son has also had to work on his PTSD from his numerous hospitalizations. The emotions he felt from being committed, confined, locked up, feeling ‘criminalized’ have taken years to overcome. He didn’t ask to have a mental illness or bring it on by living a reckless lifestyle. He’s a victim of genetics and should be treated with dignity and equality that we all deserve.”

Think about that. Our system is putting people with mental illnesses through trauma because its purpose is, as Smith says, to control and contain, to stabilize and discharge, without enough resources put into rehabilitation, recovery and support.

“Why? Why would anyone go willingly to a hospital, admit themselves, ask for help, given what happens when they go there at their sickest?” Smith says. “They are forcibly detained, given medications for three to 10 days, sit on a ward in between doses and then they are put back out to the situation they just left.”

On a day I went to a hospital association meeting, friends from UNC said there were 35 waiting for beds for mental issues, 17 of them kids, and they had three beds available. At WakeMed, they had 80 people on observation, 20 in the ED. That is such a clear indication that our community system is a total failure. People cannot get care in the community that would keep them out of crisis.

Barbara Smith, a former clinical assistant professor of social work at UNC-Chapel Hill and a Stand By Me founding member

Here’s the comparison Dawn Woody is compelled to draw:

After a cancer diagnosis, her mother was immediately given an eight-week protocol of treatment that could be extended as needed, even though the cancer was incurable. Additionally, hospice was waiting to care for her mother for up to a year.

Throughout Woody’s five-year odyssey with her 24-year-old daughter, who has bipolar disorder, the system often has limited care to seven days, offered no long-term protocol, no therapeutic step-down, no support. It has been an endless cycle of crises with no continuum of care.

When Woody’s mother needed a $50,000 chemo drug, the insurance company immediately approved it. When her daughter needed a $20,000 month-long stay in a treatment facility, it said no.

“Sometimes I think my daughter might be better off with a brain tumor,” Woody says, shaking her head in anger.

If there is a sadder commentary on the condition of our mental health care system, I don’t know what it is.

Unless it’s this. From a letter that Jason Swain, convicted of aiding and abetting a murder, wrote to his mother during one of those 4,800 days in solitary confinement:

“There’s not a animal the public would think was right to do to them that way but a human, they don’t care. Put in a cage for years.”

Wheeler: bwheeler@newsobserver.com, 919-829-4825 or @burgetta_nando

Want to go?

What: Community meeting of Stand By Me NC

When: Sunday, Aug. 21, 4 to 6 p.m.

Where: First United Methodist Church, 117 South Academy St., Cary 27511

RSVP: Send an email to standbyme_nc@yahoo.com

More info: standbymenc.org/

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