Families Enduring Mental Illness Need Hope for the Holidays

Dreams for their afflicted loved ones can be reached with mental health reform.

Posted Nov 19, 2019

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Imagine for a moment that your loved ones won’t be coming home for the holidays, but not because they’re celebrating with others or have commitments that prevent them from making the trip. Instead, they’re ill and episodically missing – lost through the cracks of a fundamentally broken system.

This is the reality for many of my clients: often mothers and fathers of adult children diagnosed with such mental illnesses as schizophrenia and bipolar disorder. They’ve typically opened their homes to their children in the past, but the need for higher levels of care made it too difficult for them to stay. With few specialized housing options and limited legal means to keep them safe and in treatment, they have scarce options to help those they love most – those who are suffering through no fault of their own.

These parents live in a perpetual state of uncertainty and terror, for their children and sometimes themselves. They receive calls in the middle of the night. They hear paranoia, anger, and confusion in the voices of their children, who are phoning from police stations or hospitals, sometimes in the next town over but often across the country. They say they need money. They’re frequently hostile. Later they might show up at their parents’ door: unkempt, hungry and threatening. Parents are afraid to let them in but also fearful of turning them away. They usually seek hospitalization to help stabilize them with appropriate medication, but after a few days, they’re free to leave, disappear and the cycle begins again.

Such stories are not unique. In fact, they’re common among the 1 in 25 adults, 10 million people, in this country who live with serious mental illness.

I think about such individuals and their families often during the holiday season. I’ve devoted my professional life to helping them. And yet, far too frequently, I have few long-term solutions to offer. Our mental health laws are squarely focused on preserving the rights of individuals, a result of abuses wrought by large state hospitals, exposed by reformers during the mid-twentieth century. Today’s system seeks to protect these vulnerable persons. But from whom or what? The institutions of the past are gone. Today, families of loved ones with serious mental illness are desperate to secure them long-term housing, treatment, and support from expert and compassionate professionals. They have no desire to lock them away.

There is hope for many of these families, but some situations will simply not improve unless our arcane mental health laws are reformed. The legal standard for involuntary commitment – “danger to one’s self and/or others” – must be expanded to encompass the ability to benefit from care and treatment. Federal HIPAA and state confidentiality laws must include provisions that provide family members access to medical information and involve them in discharge planning from hospitals. All U.S. states must adopt guardianship laws that allow legal guardians to involuntary commit seriously mentally ill loved ones or consent to treatment on their behalf. These changes would be in the very best interest of such individuals, instead of granting near-complete autonomy to those whose illnesses cause them to break with reality.

What’s more, our nation must provide robust funding for mental health treatment, housing, oversight, case management, and education. Without adequate resources, too many vulnerable individuals will continue to cycle in out of hospitals, wind up on the streets or in our prison system, which currently, tragically, serves as the largest provider of mental health services in the nation. Prison policies must evolve as well, both how they treat and ultimately release inmates with mental illness. 

This holiday season, as we express gratitude for the good fortune in our own lives, we must remember the families who have been broken apart by serious mental illness. If we join together and amplify the voices of advocates, families, and professionals who experience firsthand the limitations of our current mental health system, we can begin to move forward a process that has the potential to exponentially improve lives all across the country.