Mental health and Homelessness: address it early and broadly for a better community.

Posted: October 4, 2016 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , | Leave a comment

homeless-tents

The following was, in similar form, published in The Marin Independent Journal. We thought we’d also share it here.

In well-heeled Marin County, staggering homeless statistics are visibly apparent in downtown San Rafael, near where I live. And this problem exists in urban areas across the country. The 20 percent, or 263 persons who are chronically homeless, cost the public greatly in emergency room visits, interaction with law enforcement, and incarcerations. In-depth media coverage reports that providing permanent housing and supportive services significantly reduces these costs.

Not clearly articulated are effective, holistic, long-term preemptive approaches. Largely because many don’t think the solution involves us. Or does it?

We know a myriad of factors lead to homelessness: environmental, economic, cultural, and bad luck. Brain disorders—also known as mental illness and includes substance abuse—is a leading cause of chronic homelessness. I bet all Marin’s overpriced housing that the 37 percent of homeless who self-report that they live with a “disabling condition” are underrepresented. Many also have anosognosia, a feature of serious mental illness that interferes with one’s ability to have insight that they are unwell. These individuals don’t accept treatment.

Fortunately, our city’s multi-pronged, reactive approach for current homeless includes a Police Department specifically trained for crises created by a person’s delusional thinking. A myriad of effective city agencies also support the homeless and those with brain disorders to reach independence. Still, a preemptive societal paradigm can address homelessness caused by brain disorders while strengthening community wellness.

It starts with knowing facts about mental illness and fighting stigma. Brain disorders don’t discriminate along ethnic or socio-economic lines. Bad parenting doesn’t cause mental illness either. One in five across the globe is diagnosed annually and an estimated 10 to 14 million Americans live with serious mental illness. Fortunately, brain disorders are treatable. But stigma prevents many from seeking treatment, which is devastating since early treatment equals greater outcomes. Let’s address brain disorders before a person becomes a statistic.

It’s cliché, but nurturing the whole child truly is a progressive investment in the whole community. We know that those lacking education are more likely to become low-wage earners and therefore statistically more likely to live on the margins.

Fostering youth wellbeing is possible through evidence-based programs in public schools. Initiatives fostering a healthy, inclusive school community can make the difference between a student feeling safe in his environment versus one who dangerously isolates. Adequate funding ensures reasonable mental health counselor ratios and also provides paid counselor training, psychological screenings for students, and most importantly that families can receive mental health education and support when symptoms first emerge. Brain disorders are lifelong illnesses that, similar to diabetes, for example, require ongoing management; with treatment, one can live fully.

Other youth programs foster wellbeing too. Studies show sports and enrichment programs promote healthy self-esteem and a sense of accomplishment. Feeling connected to one’s community, whether through sports, or clubs or other enrichment is critically important to young people. Engagement in positive activities reduces anxiety and depression disorder symptoms—possibly delaying onset for those at risk. Art, music, and performance arts provide students with beneficial life skills and tools for expression, valuable for us all, but especially for those who develop brain disorders.

Meditation positively alters brain structure, improves concentration and increases self-awareness, happiness, and acceptance. Schools with mindfulness and meditation curriculum have reported tangible long-term results.

Voters can also effect change by learning about HR 2646, the Helping Families in Mental Health Crisis Act of 2015 and lobbying their Senator to pass it. Importantly, this bill addresses critical roadblocks parents encounter in getting mental health treatment for their child. Presidential Candidate Clinton has also outlined a comprehensive Mental Healthcare Agenda proposing changes needed to guide a loved one from serious untreated mental illness to recovery.

It is likely your city’s many agencies and faith organizations are doing incredible work. If the long-term health of your community matters to you, consider getting involved with a school, an agency, or church; financially support relevant programs serving youth enrichment and intervention. Get informed, lobby your Marin County Supervisor and US Senator and vote. Because this is a big picture and we’re all in it.

Your thoughts are always welcome:

 

Is he at risk for harming himself or others?

Posted: July 20, 2016 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , | 1 Comment
ER-Ambulance-VA

ER intake protocols and HIPAA laws create obstacles for healthcare advocates who know their loved one is experiencing a mental health crisis and psychosis that can result in devastating consequences.

Jean[1] did not delay taking her thirty-year-old son, Keith, a Medicaid patient, to a prestigious teaching hospital’s emergency room when he began experiencing heart attack symptoms. Jean, a lawyer, is the legal guardian of Keith, who lives with schizoaffective disorder that was diagnosed at age twenty. Jean knew Keith was likely experiencing a panic attack and the symptoms she was most concerned about were those of a mental illness relapse. Advocates like Jean, who have watched their loved one’s illness unfold, are intimately familiar with subtle and sometimes frightening warning signs of mental health relapse and what signifies the urgent need for an ER visit and hospital admission. On that day, Keith’s concerning symptoms included elevated mood, obsessive need to clean, racing heartbeat, and the most critical of all, incoherent speech.

Up until that ER visit, Keith had been managing his illness successfully for nearly four years with medication, therapy, sobriety and the support of his parents and loved ones. A recent college graduate, Keith teaches advanced math to high school students at an after-school clinic. He was recently promoted and had plans to move from his parents’ house into an apartment with a roommate. Stress can trigger a critical health event for those who live with chronic mental illness and Jean believes his increased responsibilities possibly caused his relapse.

The doctor quickly ruled out cardiac arrest but never addressed the mental health symptoms despite Keith’s health history, the information his mother provided, or the fact that Keith is treated at the same hospital for his schizoaffective disorder.

Upon meeting the ER doctor, Jean detailed her son’s mental health symptoms she observed and knew to be concerning and his correlating health history. But the ER doctor focused on Keith’s cardiac symptoms, asking an incoherent Keith to explain how his heart felt. The doctor quickly ruled out cardiac arrest but never addressed the mental health symptoms despite Keith’s health history, the information his mother provided or the fact that Keith is treated at that same hospital for his schizoaffective disorder. “The ER doctor couldn’t write the discharge order fast enough,” Jean says. She laments the breakdown in what should be an integrated health system, one that includes protocols in which doctors are trained to address physical and mental health symptoms.

Jean recognized Keith’s mental health was rapidly deteriorating and his ER discharge meant the opportunity to get him committed for treatment in the hospital was denied. Jean then called Keith’s psychiatrist, who was on vacation, and left a message for the on-call doctor. Several hours passed before she received a return call. In the meantime, Jean also had left a message on the answering service at the clinic where her son is treated.

When her call was finally returned, the usual and important question was asked: “Is he suicidal? Is he homicidal?” Keith was not expressing suicidal ideation though he was incoherent and clearly exhibiting signs of psychosis. But Keith does have a history of hearing command voices—voices that instruct him to do dangerous, impulsive acts. Jean explained, “No, he’s not saying he’s going to kill himself. But his thinking is becoming more convoluted and his mood is more elevated.” Despite Keith’s history, he did not meet criteria for being at risk for self-harm or harming others and therefore Jean was informed, “Have him call us tomorrow and get an appointment at the clinic.”

Jean was finally able to make an appointment for Keith early the following morning and prepared for a long night of vigilance, which was especially worrisome since her husband was away on business. Knowing Keith’s history of psychotic thinking, especially that he experiences frightening command voices, scares Jean. She would need to check on him frequently throughout the night.

Jean recalls, “The rest is a blur. About 1:30 am, I saw blood in the hallway. I banged down the bathroom door and stopped the bleeding as best I could. I called 911 and got help from my neighbors who are nurses. Before I knew it, Keith was in the first of two surgeries.”

Keith will survive but it will be a long recovery process, both physically and mentally. He told his family he wants to live, get well, and return to work. He tells his parents he had no plan to kill himself. Keith has no memory of that night. “I don’t know why I did it,” he says.

Keith’s psychosis involved hearing voices commanding him to act, nearly resulting in his own death. His act, unlike a conventional suicide attempt in which the intent is a conscious and often planned effort to end one’s own life, was unplanned and impulsive. Keith’s brain was very ill, requiring urgent treatment to stabilize disordered thinking and keep him and others safe. Had Jean been successful in getting Keith hospitalized, he could have been protected from this impulsive act that will now require a longer recovery than had he been committed to treatment merely one day earlier.

Discouragingly, these types of experiences are not anomalies. Like most mental health advocates, best selling author, Pete Earley, became frustrated by the confusing and oft enervating mental health system when his son became ill. Earley’s very informative book, Crazy: A Father’s Search Through America’s Mental Health Madness, explores the healthcare and criminal justice system for those living with mental illness and for their advocates navigating the health and justice system. In Crazy, Earley tells a story of his frustrating effort to commit his son, Mike, whose mental health was deteriorating:

The doctor said: “Virginia law is very specific. Unless a patient is in imminent danger to himself or others, I cannot treat him unless he voluntarily agrees to be treated.” Before I could reply, he asked Mike: “Will you take medicines if I offer them to you?”

“No, I don’t believe in our poisons,” Mike said. “Can I leave now?”

“Yes,” the doctor answered without consulting me. Mike jumped off the patient’s table and hurried out the door. I started after him, but stopped and decided to try one last time to reason with the doctor.

“My son’s bipolar, he’s off his meds, he has a history of psychotic behavior. You’ve got to do something! He’s sick! Help him, please!”

He said: “Your son is an adult and while he is clearly acting odd, he has a right under the law to refuse treatment.”

“Then you take him home with you tonight!” I exclaimed.[2]

Mental health professionals are required to follow the criteria established for hospital admission. This criteria and HIPAA privacy laws restrict providers, often resulting in sub-par care and tragic consequences for people who live with mental illness. Advocates, mental healthcare providers and patients are frustrated with these laws and protocols that quite simply are more often harmful than helpful. 

No good comes from an untreated illness and after leaving the ER, Earley’s son was arrested and incarcerated for trespassing. Fortunately, Mike caused no physical harm to himself or others and the arrest prompted Earley’s investigation of the mental health and criminal justice system.

Virginia State Senator Creigh Deeds and his twenty-four-year-old son were not fortunate. Deeds’ emergency intake experience was similar to Jean’s and Earley’s but with horrifying consequences.[3] His son’s observable symptoms indicated he was becoming gravely ill. Like Jean and Earley, Deeds was unsuccessful getting his son committed. Deeds was told there was no bed available for his son. Later, Deeds’ son stabbed his father, leaving a lasting facial scar, and then he killed himself. Says Deeds about his experience with the medical system,

That makes absolutely no sense…An emergency room cannot turn away a person in cardiac arrest because the ER is full, a police officer does not wait to arrest a murder suspect or a bank robber if no jail space is identified. 

Deed’s experience prompted him to initiate changes in the emergency intake laws in his home state of Virginia. The changes include: 

  • Doubling the maximum duration of emergency custody orders to twelve hours and establish a framework to ensure private or state psychiatric beds are available for individuals who meet criteria for temporary detention.
  • Requiring State hospitals to accept individuals under temporary detention orders when private beds cannot be found. The law enforcement agency that executes an emergency custody order will be required to notify the local community services board, which serves as the public intake agency for mental health emergencies.
  • Establishing a state registry of acute psychiatric treatment beds available to provide real-time information for mental health workers.

Deeds acknowledges that changes to the intake law are “just the beginning” of the process the state must undergo to modernize and increase the effectiveness of the fragmented mental health system. His detractors believe more changes should have been implemented. But he accomplished what he’d identified while on his back in recovery from the physical injury his son inflicted. And these changes can be a model nationally. Deeds said, “The bill signed by Virginia Governor McAuliffe makes needed improvements to the emergency intake process. But there’s so much more to do.” As a father of a person with serious mental illness, Deeds is keenly aware of holes in the health care system. Says Deeds,

What happens after crisis intervention?…What if a person needs long-term care? What happens after the first 72 hours? Our system was deficient before, but a lot of deficiencies remain.[4]

Many parents interviewed for our Behind the Wall story collection share the experience that there was little information about, and questionable access to, post emergency commitment treatments or alternative resources when a person in crisis is denied hospitalization.  

Frustrating experiences like those of Jean, Earley and Deeds are shared by almost all parent/advocates of a loved one living with chronic mental illness. To effect change and remove dangerous roadblocks in the mental health system, Jean could, perhaps, pursue legal retribution against the medical professionals who failed her son despite having been provided Keith’s pertinent health history. But Jean notes that the hospital and mental health professionals followed an established protocol, even though that protocol was clearly flawed. Legally, they did nothing wrong. Instead, she will work for systemic change for Medicaid patients through NAMI (National Alliance on Mental Illness) to shape a more comprehensive diagnostic protocol, one that incorporates a case-by-case basis method of treatment for mental illness symptoms. She expects pushback but she is determined.

Changes that advocates like Jean, Deeds, and Earley are pushing are critical for the reparation of the broken system. It seems overwhelming. But there is hope. In June 2015, Representative Tim Murphy (R-PA) introduced H.R. 2646, the Helping Families in Mental Health Crisis Act of 2016, which was passed in July 2016 in the House. H.R. 2646 will now move to the Senate for approval. The changes proposed are substantive. The link to read the language of this bill and follow it as it moves through the Senate can be found here: https://www.congress.gov/bill/114th-congress/house-bill/2646

There is much work to be done in order to provide the best care for our loved ones who live and struggle with mental illness every day of their lives. If you are a caregiver or a person with mental illness we’d like to know your thoughts.

If you, or someone you know is thinking about suicide, please visit these sites and get help:

https://www.nimh.nih.gov/health/topics/suicide-prevention/index.shtml

http://www.suicidepreventionlifeline.org

http://www.webmd.com/schizophrenia/guide/schizophrenia-and-suicide

[1] All names have been changed to protect privacy.

[2] For more information about Pete Earley, his advocacy and to purchase his books, please go to his official website: http://www.peteearley.com/books/crazy/

[3] http://www.usnews.com/news/blogs/washington-whispers/2014/03/31/creigh-deeds-tells-sons-mental-health-horror-story

[4] http://www.roanoke.com/news/politics/creigh-deeds-new-mental-health-law-is-just-a-start/article_c028ba10-be76-11e3-b827-0017a43b2370.html

 

Science That Offers Hope And Makes Us Cringe: The Love-Hate Relationship with Drug Therapy

Posted: August 30, 2013 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments

Antipsychotics

At the last annual National Alliance on Mental Illness (NAMI) conference a controversial speaker, Robert Whitaker, was invited to talk about psychiatric drug use in treating serious mental illness (SMI). Mr. Whitaker is not a doctor but has won journalistic awards primarily in the areas of medicine, science, and history. He receives a lot of traction when he advocates treating mental illness without medication and cites studies to back up his claims.

His NAMI lecture focused on dangers of current drug protocols and methodologies that are standard in psychiatric care. Among other disturbing ideas, he cited studies indicating brain shrinkage from long-term psychiatric drug use, and that patients who never start on drug therapies have a better long-term outcome than those on medications. Mr. Whitaker advocates “selective use” of psychiatric drugs, and a reevaluation of drug treatment efficacy for children, claiming a link between drugs used to treat ADHD and a higher rate of pediatric bipolar disorder.

In the audience that day was a twenty-two year old man diagnosed with schizophrenia. That same day, the young man quit his medications. Cold turkey. His mother wrote to journalist Pete Earley, a mental health advocate, author, and father of a son living with schizophrenia, who then posted her email on his blog (http://www.peteearley.com). “Angry Mom,” as empty-red-seatsshe named herself, blames NAMI and Mr. Whitaker if anything happens to her son because she knows how sick her son is and that nothing good happens when he’s off his meds. There will be “blood on their hands,” she says.

Hearing Mr. Whitaker question drug therapy makes most of us who have a loved one living with a serious mental illness (SMI) cringe. I mean a full-body Cringe. Not because we love drug companies or are close-minded. In fact, much of what he says makes a certain amount of sense and could be helpful toward treating SMI patients in the future. But saying it out loud is lethally dangerous.

I’m guessing Mr. Whitaker doesn’t live with a person diagnosed with SMI. If he did, he’d know patients living with bipolar, schizophrenia, and schizoaffective disorder typically have concrete or rigid thinking, a symptom of which is the constant obsessing over an idea, and an inability to think abstractly or fluidly. So, when a twenty-two year old man with a schizophrenic brain heard “drugs have serious side-effects” and “patients do better without…” that is all he heard, not the more nuanced message that included, according to Mr. Whitaker’s response to “Angry Mother,” that, ”[Drugs] could be used to help some patients recover from an initial episode, and they could be continually prescribed to those patients who can’t seem to do well off them.”

“Angry Mom” knows a lot about her son’s condition and if she says he needs medication, I’d believe her. Nothing like a stranger coming in and introducing an idea that undoes all the work she’s put into getting him to stay on meds, and not just to be functional, but alive.

One parent /contributor to Behind The Wall: The True Story of Mental Illness as Told by Parents claims she will never again question her son’s doctors about his meds in his presence. By merely asking his doctor, “Can’t he get off some of these?” her son, not seeing that she was exploring the idea, went off all of them, cold turkey. Weeks later, he became psychotic, landed in jail, and often couldn’t recognize her. She blames herself for questioning the drug cocktail in front of him. Another contributor put it this way: the drugs are awful and why wouldn’t a person want any chance to go off of them?

No one can dispute that side effects of psychiatric drugs are horrible: excessive weight gain, tremors, loss of appetite. One contributor to Behind The Wall said her son went (temporarily) blind from one drug. Another put him at risk for a heart attack. Another drug doctors continually recommend could kill him. It often takes several weeks to get a drug cocktail correct, then that too can change. But there’s a trade off. Catherine’s son, Philip, was diagnosed with schizoaffective disorder. But Philip’s father didn’t support drug treatment and his psychosis persisted on less effective medication. Eventually, while alone, and not monitored to ensure he took his medications, Philip committed suicide at age nineteen. Drug therapy would have prevented these devastating outcomes.

Mr. Whitaker’s drug-reduction advocacy is not meant to harm. Any parent would insist on reducing the drug load for their child living with SMI if they could stay well without them. And we won’t discuss medicating pediatrics here, except to say, it’s never an easy decision.

But some of Mr. Whitaker’s claims ignore other studies that provide at least partial explanation, for example, as to why recovery rates for SMI are reportedly higher in some third world countries. Countering his suggestion that the cause for lower recovery rates is because of over prescribing, we can look Tanya Marie Luhrmann’s essay, Beyond the Brain, from last year’s The Wilson Quarterly* cited in our post, “Society’s Way or Best Way,” regarding societal structure and community impact on MI.** Stress and isolation play a big part. Mr. Whitaker also cites a study showing mentally ill patients who are not on drug therapies do better in the long run. There are many SMI patients who, without medication put themselves in grave danger. If a patient isn’t so psychotic or manic that they can stay safe without medication, then yes, one can see they will be the ones who do better in the long run. That is NOT the kind of patient Mr. Whitaker means to be speaking about.

But that’s not what that twenty-two year old heard.

Mr. Whitaker’s focus is on shifting drug protocols, and uses science to back it up. But even he admits that the current health system (and our society) is not structured for long-term minimal drug therapies. In his response to Angry Mother, Mr. Whitaker seems to acknowledge risks in his advocacy when he says, “We, as a society, have not developed a system of care that provides support to someone who might want to taper from his medications, and help that person try to do so in a safe manner, even though we know that it can lead to a good outcome for many. And the absence of such support may put a person—such as this mother’s adult son—into a perilous place when they do, in fact, learn of such information.”

If our society could develop deeper compassion for people living with brain illnesses, reduce stress caused by our societal structure, and put our loved ones who live with SMI in a safe environment for a year or two— time for their brain to cool, maybe we could begin to have this ideal treatment methodology Mr. Whitaker proposes. Mr. Whitaker offers a hope for a tolerable treatment for SMI that we, a supposedly humane society should strive to realize. What Mr. Whitaker never offers, is an apology. Because he’s giving out an idea that many SMI patients simply cannot have. At least not now.

But that is not what that twenty-two year old heard.

Research and evolving brain studies do offer hope for non-drug and selective drug therapies for SMI. And a broad range of seemingly worthy studies identifies the multiplicity of factors contributing to SMI and to recovery— factors that are varied, complicated, and unique to each individual. No one’s mental illness is like the other, nor is their recovery. And for parents trying to keep their adult child living with SMI healthy and alive, they want to stay with what’s working.

Complicated, varied, and irrational. That’s what mental illness is. Maybe we cringe because it all sounds too good to be true. No drugs? Please don’t tease us, Mr. Whitaker. Don’t even tell us until hope really is here.

 

* Tanya Marie Luhrmann’s essay, Beyond the Brain, from last year’s The Wilson Quarterly:  http://www.wilsonquarterly.com/article.cfm?aid=2196#.UOR7b8OB6j0

** https://behindthewallstories.wordpress.com/2013/07/04/societys-way-or-best-way

NAMI provides information and resources about treatment for mental illness: http://www.nami.org/template.cfm?section=About_Treatments_and_Supports

For further information about Robert Whitaker: http://www.robertwhitaker.org/robertwhitaker.org/Home.html

Huffington Post blog by Robert Whitaker that clarifies his perspective: http://www.huffingtonpost.com/robert-whitaker/anatomy-of-an-epidemic-co_b_555572.html

As always, we are interested in your thoughts.

Mental Illness and the Medical Industrial Complex: parent / advocates can be a doctor’s best resource and yet are often undervalued.

Posted: August 3, 2013 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , , , , , , , , , | 1 Comment

Maze

Proper treatment—talk therapy and appropriate medication—can save the life of a person with mental illness. Often it is a parent/ advocate driving toward that ultimate goal, one met with a myriad of obstacles. Every parent interviewed for our Behind The Wall project had at least one, if not several, hideous experiences with the “medical industrial complex.” We use this term to illustrate the oftentimes bureaucratic, impractical, impersonal, demoralizing system for patients with mental illness and their families. Our last post, Just Another Friday Night in Lock-Down is the story of one parent’s emergency room experience with her son.

Most common problems parents cite were caused by a general “one-size-fits-all” approach and more specifically, doctors who did not value the medical histories and insight parent/advocates could provide, health insurance policies that limit care or end treatment prematurely, obscenely long wait times in emergency rooms, a dearth of available, quality in-patient treatment facilities, and medical professionals who are poorly trained or administered medications inappropriate for a particular individual. Perhaps the most galling of all are restrictions framed by HIPAA laws, which were designed to guard patient privacy but in reality, excludes caregivers from direct information interchange with medical professionals despite their unique and experienced knowledge of the patient.

An individual living with mental illness usually has a long history of trial and error therapies. Contributor/parents to the Behind The Wall story collection have learned to adhere to a few critical and practical methods in dealing with the medical industrial complex. First, they constantly remind their over-eighteen child to sign the HIPAA waiver when they are in treatment and ask for one if it is not offered in order to allow medical professionals to communicate with a designated adult. Unfortunately, a person experiencing psychosis doesn’t always have practical matters, such as paperwork, top of mind. Second, parents advise, keep medical records of all treatments well-organized and close at hand. Many parents joke about binders filled with medical paperwork lining their shelves, overwhelming their offices. Because of the complex nature of diagnosing mental illness, it is crucial that each medical professional involved understands past treatments and outcomes. While a patient in crisis may present common symptoms, the go-to treatment may be potentially dangerous to some individuals.

One such patient, Miguel, who was diagnosed with schizophrenia, has never been able to tolerate a typical therapeutic dosage of most go-to medications. Once he gained fifty pounds in a week. Another time he lost his vision at a nearly full dose. One medication put him at risk for cardiac arrest. Luckily his mother maintains excellent records and researches medication so that when a doctor prescribed Clozaril, a heavy-duty drug known to be potentially legal to a small percentage of individuals, she was able to convince the doctor to find an alternative even though his symptoms were severe. Since Miguel experiences side effects to some degree with every medication, she knew a hard-core drug would be especially risky for Miguel.

Kerri’s son, Thomas, was living in a group home that was not her first choice but was decided upon by her insurance. There was no psychiatrist on premises. Instead, a prescribing nurse met once a week with residents to assess drug treatments. While living in the group home, Thomas complained about depression. The nurse prescribed Prozac, a medication that in the past had made Thomas highly agitated. Kerri doggedly tracked down the nurse at her off-site office and informed her of the negative reactions her son experienced when prescribed any SSRI medications and luckily, together, they were able to find an alternative.

In these cases, a parent was closely monitoring their child’s treatment and a doctor listened. One can only imagine what happens when there is not an advocate overseeing treatment. Or, in Marie’s case (from last week’s post, Just Another Friday Night in Lock Down) when a doctor ignores a parent’s pleas not to administer a benzodiazepine to her addict son.

Dan and Rebecca also closely monitor their daughter, Stella, who was diagnosed with schizophrenia and lives a few hours away from where she attends university. Stella called her parents saying she wasn’t feeling quite right, to which her parents urged her to visit the university health center. Later, Dan and Rebecca received a call from the medical center stating that Stella would be checked into a hospital. “If you don’t do it,” the nurse said, “the university will.” Dan rushed to retrieve his daughter and drove her to an emergency room at a well-respected hospital close to their home. They were ushered into a room with, as Dan describes it, “soft furniture,” where they waited over ten hours and still did not see a psychiatrist. Dan realized that sitting in the dismal waiting room was more damaging and stressful than not seeing a psychiatrist. It was also a Friday, and she wouldn’t have received treatment over the weekend. He took Stella home to rest for a long weekend and she was able to return to school and resume her life.

Dan followed a third bit of advice that other parents cite, which is to “trust your gut” because, as Dan explains, you know your child best. He advises parents to “strike a balance” between listening to medical professionals and using one’s own observation skills. After all, the doctor is exposed to a data set limited to a short observation window and medical records. They don’t know the person. Says Dan, “You might be told, ‘I think we’ve nailed it with this combination of meds,’ and you’re looking at your kid and she’s not there, it’s not her. You have to say, ‘No, I don’t think what I’m seeing is working.’”

There are many pieces that need to align before a person with mental illness can reach recovery, and having a trusted advocate is an invaluable one. The stigma around mental illness certainly impedes treatment; more troubling is that based on the experiences of our contributors, stigma seems to be perpetuated by the medical industrial complex itself.

HIPAA laws are a formidable barrier as well. That a medical professional cannot provide information to the parent/advocate is an obstacle to constructing full-circle treatment where all parties vested in the health of the patient are well-informed. Esme always made a point to contact Jennifer’s therapist to tell her what was really going on at home because she suspected her daughter didn’t always tell the truth in therapy. She would call and say, “I’m just feeding you information…” hoping to increase the efficacy of her daughter’s treatment, but never really sure what was transpiring.

After Kerri’s son was placed in a psychiatric hospital, it took two days for her to learn where he was, and when she arrived to visit him, the receptionist would not tell her and her husband where he was. It’s against the law, after all, until he signed the paperwork. A young man who was experiencing psychosis forgot to ask for the paperwork. Imagine.