I remember meeting one evening, many years ago, when I was the New Jersey Welfare Commissioner, with the families of patients in the largest state psychiatric hospital. We expected maybe 10 or 20 family members to be there that night, but hundreds came to express their frustration and anger that more was not being done for their relatives who were spouses, parents, children, or patients. They were concerned about the quality of care at the hospital, the conditions in the facility, the drug use, and safety. They had every reason to be concerned. The facility was old and severely understaffed, many of the patients had been dumped there by the correctional system because the correctional system was unable or unwilling to accommodate them, and about 70% of the patients had substance use problems comorbid with chronic mental illness, and some had psychiatric medical facilities. The care provided to them was less than gracious. The anguish of the families was palpable and understandable. Many were in tears.
While I was able to make some changes during my tenure, including improving staffing and closing an old and dangerous juvenile psychiatric facility built in the late 1800s, It was far from satisfying. Congress didn’t show much interest in patient escapes unless they made the front page. Despite the tireless efforts of advocates and a small number of advocates in Congress, when it came time to allocate resources in the national budget, the chronically mentally ill were not a funding priority. This is one of the few long-standing issues that he was probably unable to fundamentally impact during his tenure at the massive umbrella agency, which includes Medicaid and seven other demanding departments, including Medicaid and human services. did. In government, you make your choices. So the priorities for me were welfare reform, Medicaid managed care, school-based social services, homelessness, and of course the inevitable crisis of the day or week.
That night, knowing my limits, I asked the press and staff to leave the room and met with my family in private. Near the end of the meeting, I gave them my personal phone number, feeling that if I couldn’t make organizational changes, I at least had the authority to help with individual cases. I heard from many of them that sometimes something terrible happened during the night. I learned their stories. In some cases, they found ways to help with individual cases, but more often than not, they could do little, even though they control a third of the state budget and control the department’s employees. did.
Decades later, KFF conducted an investigation with CNN about America’s mental health in 2022. As I scrolled through the survey results, the headline jumped off the page. Ninety percent of the public believed there is a mental health crisis in America. Many reported real problems accessing and paying for mental health services. And there they were, my family. A bit buried in the research was a data story I learned years ago in New Jersey. Mental health crises are a serious problem, not just those with mental illness, teenagers suffering from emotional problems, or individuals dealing with loneliness. And the focus is on family.
Families with a loved one living with mental illness know all too well that severe stress and strain are part of the experience. But there was something else in the data that was even more startling: the number of families dealing with true crisis-level events. Families living on the streets; making the brutal decision to institutionalize a loved one who is a threat to themselves or others; a spouse or child arriving in the emergency room with a drug overdose; self-harm; suicide attempt. And while there are underserved services for families dealing with mental illness in general, there are even fewer services and supports for families dealing with crisis events. The number of families experiencing very severe mental health-related events is so high that it may constitute a crisis within a larger mental health crisis, yet it does not receive enough attention.
Our American mental health research shows that these crisis events are prevalent and include many of the worst things that can happen within a family.
- 28% of all Americans say they have had to take painful measures, such as placing a family member in an institution, because they are a threat to themselves or others.
- 21% said they or a family member suffered a drug overdose that required an emergency room visit.
- 14% said they or a family member had run away from home and were living on the street because of a mental health issue.
- 16% said someone in their household became homeless due to a mental health problem.
- Eight percent said they or a family member had a severe eating disorder that required hospitalization or in-person treatment.
- 26% said they or a family member had cut or self-harmed.
- Additionally, 16% had lost a family member to suicide.
Noting the overlap in issues, half (51%) of American families experienced one or more of these severe crises. Please understand this carefully. Half of all American families were experiencing a serious mental health-related crisis. That means we really need to be diversified when measuring the impact of the mental health crisis, which official statistics can’t measure. Such crises pose a real challenge for families. Parents and siblings have a hard time dealing with them and may never be the same after they occur. Families often make great sacrifices to help their loved ones in crisis.
Survey data shows some of the results. More than four in 10 people say the crisis has had a significant impact on their mental health and family relationships. One in five said it had had a significant impact on their family’s financial situation. This group, which has the most direct experience with mental health care in this country, believes that mental health problems in both children and adults are at crisis levels in the United States, and that most people cannot solve their mental health problems. Probability is high. The mental health services they need.
Of course, all negative outcomes are compounded by poverty, and such family crises are more likely to occur in low-income households. Fifty-seven percent of people living in households with annual incomes of less than $40,000 have experienced such a crisis, compared to 43% of households with annual incomes of $90,000 or more.
Some adults know or can understand who to turn to if a family member needs help with a serious mental health-related issue, such as a drug problem or possible suicide. . Regional and national crisis hotlines may be available for a variety of issues. But how many of us know who to turn to when our family is in trouble and in crisis? Of course, in some cases, family dysfunction or worse may be contributing to family problems, or the family itself may be the problem. This can make the solution even more complex.
NAMI, the national organization representing families with mental illness, does courageous work through chapters that provide support and advocacy, but there are limits to what we can do for families in crisis. You can’t provide a service that doesn’t exist.
Ultimately, the best thing we can do for families experiencing a mental health-related crisis is to more effectively address the underlying issues affecting them. In my next column, I’ll examine the challenges Americans have when accessing mental health services.
There wasn’t much I could do right then and there for my family, who were in a psychiatric hospital in New Jersey at the time. But this data is important to understand how America’s mental health crisis is impacting not only individuals but also families, magnifying its impact, expanding the policies and services needed to address it, and increasing awareness of this issue. It reminds us that we are making the mindset changes we need.
View all of Drew’s Beyond the Data columns.
