Challenging the System: One Woman’s Fight for Mental Health Reform

In the years before her son’s death, Michelle Reed took on a caregiver role. The two had always been close, but their relationship changed as his mental health worsened. Sometimes, he refused to see her, including when she dropped off groceries at his apartment. Once, she returned later only to see he’d left them on the ground to spoil. When this happened again, she asked his roommate to help ensure the groceries were put away.

Dajon, her son, had started experiencing mental health issues in his teens. He was diagnosed with schizophrenia and a co-occurring substance use disorder at 18. Less than a year after being discharged from a psychiatric facility, he died. He was 24.

The circumstances of his death remain unclear. Dajon was struck and killed by a train at approximately 4:30 in the morning in his hometown of Fresno, California. “For months, I thought Dajon [died by suicide],” Reed says. “I went into a deep depression.” 

Dajon was drinking that night, so investigators suspect it was an accident. Reed has considered all possibilities, including foul play. The lack of closure only compounded her grief. But Reed is firm on one thing: “If he’d been kept in the hospital, Dajon wouldn’t have been out that night.” 

He would, perhaps, still be alive.

Dajon spent the final years of his life cycling in and out of mental health treatment facilities. Over time, he stopped taking his medication. He was admitted to a psychiatric facility under a Lanterman-Petris-Short (LPS) Act conservatorship in July 2018. 

His psychiatrist recommended a one-year hold. Two months later, a judge discharged Dajon. 

The judge stated that he “presented well in court.” Dajon told the judge he planned to live in a homeless shelter. This was all it took to convince the judge that he would be able to care for himself outside of the facility. 

“The judge didn’t coordinate with me to help care for him,” Reed says. “Nothing. Just let him out.”

She had advocated for her son to stay in the facility, which further strained their relationship. 

“The last time he went, he hated me for it,” she says. “He said I put him there on purpose, and he was yelling and screaming. I knew it was because he wasn’t in his right mind, but he was very upset with me. The psychiatrists understood he needed help. The problem is the system. No one knows what anyone else is doing.”

Reed is well-acquainted with the challenges of bureaucracy; she is a licensed mental health clinician and encounters those same barriers with her clients. Even so, that did not lessen the frustration she felt that day in the courtroom. In the following months, she continued trying to navigate the systems that were allegedly designed to help him. 

One memorable encounter took place at the social security office. Dajon received disability income for his mental health condition, but Reed was the designated recipient for those checks. Dajon was able to have her removed at the discretion of a general practitioner who did not know his mental health history. Soon, he had access to his own money.

“I told the woman at the social security office, ‘He’s going to take the money, and he’s going to use drugs, and then he’s going to be out on the streets. He’s not well,'” Reed recalls. “And she said, ‘Well, if it gets to that point, we’ll have to figure out what to do.’ Really? You’re not going to have to figure out anything. I am. He’s my son—you’re going to sleep just fine at night, I’m not. There’s a chance he may not live.”

Reed spent the months following Dajon’s discharge “constantly on high alert.” One time, he was convinced a famous actress wanted him to be in a movie with her and talked about taking a train to Los Angeles—200 miles away. Because he had the money, it was a real threat; but if he went there, Reed would lose any remaining ability to take care of him. 

Taking care of Dajon ultimately involved getting him his own apartment, so that he would at least have a roof over his head. She didn’t want him to live on his own, but she also didn’t want him to engage in substance use around her two younger children. After he moved out, she continued to provide almost daily assistance, like cooking and cleaning.

“I was tired, and I was frustrated,” Reed said. “The whole thing was a living nightmare, from the time he got sick to the time he passed away, because I couldn’t get the support I needed.”

Reed’s efforts to escalate the situation proved fruitless. 

The LPS Act, which regulates involuntary commitment to mental health institutions in California, went into effect in 1972. It sets three criteria to determine whether a psychiatric hold is necessary: The person must be a danger to themselves, a danger to others, or “gravely disabled” (defined as the inability to provide for their own food, clothing, or shelter).

The LPS Act complemented deinstitutionalization efforts nationwide. The movement, at its core, was well-intended; it sought to treat individuals with mental health concerns in the least restrictive setting possible. But what followed was the closure of many treatment facilities, without providing adequate alternatives, putting those with severe mental illness at significant risk for homelessness and incarceration. The overlap between homelessness and mental health issues, and the debate over how best to support this population, are policy issues that remain unresolved.

Additionally,  detractors say that the criteria ignores the fact that many people diagnosed with severe mental illness can present well for periods of time.

Dajon was well-versed in how to “correctly” get around the LPS Act criteria, says Reed. He’d been hospitalized many times and he knew what the judge was going to ask. 

She says that the same thing happened if she tried to get him help in the last year of his life. “He would leave the stove on and almost burn the house down,” she explains. “He was gravely disabled, but when officers would go over there to do a wellness check, he’d answer the questions ‘right.'”

Reed despaired that her son’s death could have been prevented, but then grief spurred action: She began meeting with lawmakers to share her story, advocating to reform the LPS Act. 

Reed launched a website in her son’s memory and a petition to change the policies that she maintains led to his death. She continues to fight for better-defined metrics regarding psychiatric hold criteria and improved care coordination. 

Reed does not want to go back to what she describes as the “dark ages” of mental health treatment. But, she says, “We need to meet in the middle, and we have to do better than what we’re doing now. Many say it’s inhumane to force treatment, but I say it’s inhumane to leave someone who has no insight into their condition out in the elements. If it were me, I’d want you to get me help, and I believe most people would if you asked them.”

Reed has faced significant obstacles. Many of her calls to policymakers have gone unanswered. She found an ally in California Senator John Moorlach, but his proposed bills were relinquished following the onset of the pandemic and he left office in December 2020. 

Still, Reed persists. She recently aligned with boxer Mia St. John, who has spoken out about her son’s death in a mental health treatment facility. St. John will appear on Reed’s new podcast, “Let’s Talk with Dr. Michelle,” in May 2022. She’ll be joined by Katie Cunningham, Chief External Affairs Officer at The Jed Foundation.

On March 29, 2022, Dajon would have been 27. This is always a difficult day for Reed. “Dajon was an amazing person,” she says. “He was funny, talented, and had the biggest heart of anyone I know. He’d give you the shirt off his back. He started using drugs, but I assume that’s because he was trying to numb the symptoms of what he was feeling. Dajon had also experienced trauma in childhood that he did not inform me about until he was 18.”

 She thinks Dajon was dealing with his pain on his own, and that doesn’t have to be the case.

“I think he was maybe ashamed, or maybe he thought something was wrong, but it’d go away,” she says. “I found a letter he wrote where he said, ‘I feel like I’m slipping away.’ And it’s like, Why didn’t you say anything? That’s another thing I want to put out there: When you have these feelings, don’t be ashamed. Get the help you need.”

Although her advocacy work has sometimes felt like an uphill battle, Reed knows it must be done. “I can’t do anything about my son,” she says. “But I can fight in his memory and try to help other people. I’ll never give up.”

Hear more from Reed and JED’s Katie Cunningham in Reed’s podcast, Let’s Talk with Dr. Michelle: