Juanita Lopez's Story
Juanita wished she could have given her son, Christopher, a better childhood after his father died of cancer when he was nine. But she could never have imagined the death that would await him in a prison cell.
Once their loved ones are discharged from hospitals but not fully treated, families often endure a painful, frightening time when they just don’t know if their loved one will snap. During this time, loved ones often don’t have insight into their illnesses, so family members, most often mothers, who are in the frontline of care, sometimes face attack by their own children. So often, they feel as if they are drowning, as their loved ones also seem to be drowning in their illness. On good days, family members feel as if they are treading water, day and night, in an unknown ocean.
People with serious mental illness face an inequity, as well, in the health care system because “mental health care” doesn’t receive the same funding, benefits and rights as other “medical illnesses.” Kaiser Permanente’s appointment hotline asks members to call 911 if they are having a “medical or psychiatric” emergency. People with serious mental illness die an estimated 25 years younger than the general population. People with untreated schizophrenia, schizoaffective disorder and bipolar disease face higher risks of suicide.
Like Edvard Munch’s famous painting, “The Scream,” they are often crying for help. Sometimes, they are ill with delusions, thinking they can fly off the side of a building and discovering, too late, that they cannot. Other times, their illness debilitates their will to live.
Mary Palafox's Story
In California, Mary Palafox, a nurse, has dedicated her advocacy to getting mental illness designated as a physical illness, rather than a "behavioral health" issue, so that loved ones can get timely treatment.
Parents are often afraid to call 911, in some cases because law enforcement arrives at the door, instead of an ambulance. To some parents, picking up the phone and dialing 911 is like playing a game of Russian roulette. Police most often handle the case as a law enforcement—not medical—issue.
Sadly, too often, a person’s illness becomes a law enforcement matter.
As when players pull the Monopoly card that orders them, “go directly to jail,” families face tragic situation when a loved one’s mental illness leads them to alleged criminal behavior, from theft to homicide. Often families discover that professional providers, including law enforcement and correctional officers, as well as personnel in the judicial system, have had inadequate training related to serious mental illness. This sometimes to lead to a fate that law enforcement officers call “suicide by cop,” when a law enforcement officer, for example, shoots and kills a person too agitated to follow their instructions.
Creigh Deed's Story
Virginia state legislator Creigh Deeds loved his son, Gus, deeply. When Gus got sick in November 2013, his father tried to get him a hospital bed. He discovered there was nowhere to go.
Many times, family members aren't informed or educated about mental illness, so they watch their loved ones deteriorate. They wonder if they are going through a teenaged crisis, if they are teens, a midlife crisis, if they are older, or on drugs, rather than seeing that the person is getting ill. Youth, in particular, may end up with juvenile records, landing for the first time in the criminal justice system—most of the time not diagnosed.
If families are lucky, their loved one goes to a hospital for treatment, but then the door slams on family members because of privacy laws, called HIPAA. Trying to wean any information out of their loved one’s “treatment team,” families discover that children over the age of 18 have aged out of their medical information being shared with parents. The results can mean shutting parents out of critical treatment conversations. In other cases, even when a parent may become a guardian, their voices aren’t fully heard.
Journalism Advocacy Project
Through traditional journalism reporting, the @TreatB4Tragedy journalism advocacy project would unravel the ways that the mental health system is broken and the ways that families struggle to find treatment before tragedy for loved ones with serious mental illness.
There are families in the midst of daily struggles. They face a broken mental health system. They rise to care for others, for this society and for those who are among our most vulnerable. Their heartfelt testimonials—overcoming their own fears, escaping risk at home, waiting outside mental health court, navigating the labyrinth of bureaucracy, doing so much—speak to the great need that other families also have for the kind of work that we hope to accomplish to help those with serious mental illness and their families. We are in it for the long haul. We want to fix this broken system
Virginia state Sen. Creigh Deeds wears the wounds from the broken system on his face.
G.G. Burn's Story
In Kentucky, G.G. Burns's son was successfully treated for bipolar disorder -- until he turned 18. Since then, he has spun in a revolving door of hospitalizations, jail time and illness.
Loved ones go in and out of the healthcare system, released before treatment is complete in a virtual revolving door. Families too often live in fear as they try to hit the treatment standard of being a danger to yourself or others. This is when family members get punched or attacked, leading to domestic violence cases, and sometimes charges against those with serious illnesses. It is at this stage too, that family members go before mental health courts and judges to plead their cases for treatment. Often, people with serious mental illness are not treated fully and go in and out of the hospital through a metaphorical revolving door.
In a Catch-22, loved ones gets booted from community health services because they can’t comply. Often, they have to be poverty stricken, yet somehow also independent and medically compliant, just to qualify for a case manager in community health services. Families are often encouraged to have them arrested. Then, after they are arrested, the same services won’t take them because they’re in mental health court, and they can’t get jobs or apartments because of their arrests.
Families find they can't find a hospital bed when they seek treatment for loved ones. Sometimes, they are in the emergency room, desperately trying to get a hospital bed for their sick loved one. It's a humility that stroke victims wouldn't endure, but patients suffering from serious mental illnesses regularly face. Patients often undergo something that psychiatrists call "decomposition," or a further deterioration.
Once a patient is treated, families face off against insurance companies trying to limit hospitalization, patient advocates pressing for a patient's discharge, and others rushing the patient out of treatment, before insight has kicked in and a loved one isn’t fully treated. To some families, the deterioration of their minds becomes a matter of “uncivil liberties.”
Exhausted and broken, family members sometimes can’t take the rigors of this revolving door and no longer offer a bed to their loved one. Other times, trying to meet a treatment standard that says that homeless people with illnesses can be forced to have treatment, they have to say that their family member doesn't have a home with them. Other times, loved ones just disappear into the streets, living under bridges and eating from dumpsters. This happens despite many families' valiant efforts to prevent homelessness. Why? Because some argue it’s “their right” to choose such a lifestyle.
Families argue that it’s not a lifestyle. It’s a death sentence for someone with serious and persistent mental illness. Daily life on the streets just worsens their illness. They are often weak, easily preyed upon. They often self-medicate. They are manipulated into the sex trade. They are murdered. The police end up having to house some of these folks just to get them off the streets.
Leisl Stoufer's Story
Leisl Soufer loved celebrating her son's 17th birthday but she dreaded his next birthday because it could mean that her son, Cody, could "age out" of treatment if he chose to refuse it.