Chad Crooks had his first mental break almost two years ago. His parents, Todd and Laura, tried to get him help, but he was over 18 and mental health services in King County were severely overburdened. His parents coached him to tell providers that he wouldn’t live through the night if they didn’t admit him for care, a strategy that worked. Until it didn’t.
His mother, Laura, answered the door of their West Seattle home when the police knocked. It was 6:30 a.m. on a day in January of 2016, and it had rained through the night. She was immediately concerned.
“They said they had Chad,” she said, her voice thick with emotion. “I thought, ‘Well, okay he has schizophrenia … he’s a great kid, but kids with schizophrenia get arrested.’ That’s when I heard one of us ask, ‘You have Chad?’”
No, the officer responded. They had Chad’s body.
The Crooks told their story to a room full of Washington state legislators and mental health advocates at the King County Behavioral Health Legislative Forum in December with a picture of a smiling Chad projecting behind them. It was a plea: The system is broken, and you need to fix it.
A rude awakening
In February 2016, they launched Chad’s Legacy Project, a nonprofit organization focused on identifying and fixing the problems in the Washington mental health system, from systemic weaknesses built into its structure to the stigmatization of mental illness that they believe flows from a lack of education.
The organization was born after Chad’s funeral, at which the Crooks had asked for donations for psychiatric research as a way to honor their son’s memory. When it came time to cut the check, they couldn’t find an organization to receive the funds, Todd Crooks said.
“I was aghast that there had never been a private fund for psychiatric research,” Todd Crooks said.
It was the first of many baffling aspects of the system that he and his wife would discover as they continued on their path to try to educate themselves and ultimately bring reform.
As the Crooks found when they were trying to help their son, the behavioral health system in Washington is a byzantine amalgamation of services that vary based on geography and local funding.
Washington state’s mental health system is divided into 10 Behavioral Health Organizations (BHOs) that vary in size and funding. King County constitutes its own BHO; the remaining nine are made up of multiple counties. This system allows each region flexibility — King County, for example, enacted a sales tax for treating mental illness and drug dependency — but it creates problematic disparities. Each region has its own set of programs and services.
King County is densely populated compared with other parts of Washington and has residents who are willing to tax themselves to pay for local capacity. It is relatively better off in that more services are available, but no single region has a set of services that can meet all needs. Many people still need to leave their communities to get the help.
Furthermore, the BHOs operate in silos. The Crooks discovered that the mental health professionals in different BHOs tended not to collaborate in any meaningful way.
“Nothing is as effective as it could be,” Todd Crooks said.
Things look like they will get worse before they get better.
Demand for mental health services is high and those services have mainly relied on increases in federal funding, which could drop significantly due to potential changes in the Affordable Care Act. Twenty-four percent of adults in Washington experience a diagnosable mental health condition and 7 percent have a serious mental illness.
While spending on mental health services in Washington grew by 75 percent between 2007 and 2016, much of it came from the Affordable Care Act — the Medicaid expansion alone insured 592,910 Washingtonians who were previously ineligible. During that time, federal funding increased by 142 percent and funding from Olympia grew by 35 percent.
The Medicaid expansion is under threat from the Trump administration and rolling it back would be disastrous for the state, said Jim Vollendroff, director of the Behavioral Health and Recovery Division.
Learning to work the system
If you can find appropriate services, the challenges of accessing them do not end there. You have to learn to say the right words to qualify for care, specifically declaring that you are a danger to yourself or others.
Washington has strict laws on what parents are able to do to help their minor children access mental health services, but Chad was 21, which meant his parents had no right to know when he had appointments. That left Chad on his own to balance his job at Target and his mental health care, a difficult task given the very disease that he was trying to manage could make him forgetful, his brain scattershot.
Sometimes he would miss appointments for trivial reasons, making it all the way to the doctor before heading home because he left his wallet behind and couldn’t pay for parking, Laura Crooks said.
Fundamentally, the Crooks found that the health care system treated mental illness differently than other diseases, putting an undue burden on the patient.
“We don’t ask people with cancer to have special words,” Laura Crooks said.
The Crooks have made it their mission to change that.
They reached out to County Executive Dow Constantine, with whom they went to high school, and he connected them with Vollendroff, who they’ve asked to be on the charity’s board. The fund has grown from an initial $5,000 to more than $50,000, and they hope to throw another fundraiser in the summer to net another $50,000. That money will be used to underwrite the first statewide mental health summit in September 2017.
“We went from nothing to statewide,” Laura Crooks said. “We can make things happen. The time is right to make things happen.”
They don’t want to stop there. The Crooks advocate in Olympia for mental health education in high school as a way of destigmatizing mental illness and educating people so that they feel comfortable asking for help. When Chad went into in-patient care for the first time, he was so embarrassed that he asked his parents to lie to his brother and sister, and tell them that he was staying with a friend for a week.
They want to support efforts to create a clinical pathway for psychosis, so that emergency responders will know better how to treat it, and promote the use of a phone line to connect people in crisis with an expert to get help in real time. They’re connecting video game designers with psychiatric researchers at the University of Washington to try to find new, innovative methods of treatment. They manage it all by taking their fresh perspective on the system and being bold in asking for help — Laura even reached out to Hillary Clinton during the campaign to come to a fundraiser.
“She responded!” Laura laughed.
Both of the Crooks work full time, Laura as a senior director at Seattle Children’s Hospital and Todd as a real estate agent. Chad’s Legacy Project is a labor of love, a way these parents hope to honor the son they lost by protecting Washington’s other children struggling with mental illness. They do it through advocacy, but also by presenting their personal, painful story to let other families know that they’re not alone. The reaction from parents across the country has been overwhelming, Laura said.
“We lost our son,” she said. “We don’t want that to happen to anybody else.”