The 21st Century Cures Act, signed into law last December, was hyped as the most far-reaching reform of the nation’s mental health system in decades. To families caring for a relative with serious mental illness (SMI), the hype is overblown. The Act aspires to the lofty goals of preventing and curing serious mental illness in the future, but fails to provide much-needed support for individuals and families struggling with mental illness today.
Previous mental health reforms, beginning in the 1960s, resulted in hundreds of thousands of patients with serious mental illness being discharged from state mental hospitals. The expectation was that former patients would live with their families, while receiving outpatient care from a network of federally funded community mental health centers. Unfortunately, the outpatient services never materialized in any systematic way. The reality, instead, was that families became the primary caregivers for many patients with even the most serious mental illnesses. And that is the reality still today.
As the parent of a young man in recovery from schizophrenia, I know the tremendous emotional and economic burden these families bear. They provide financial and emotional support, monitor symptoms and medications, deal with legal problems and bankruptcies, fight for benefits and services, and are often the patient’s only source of social interactions, all the while dealing with their own grief and loss. For these families, and the loved ones with serious mental illness in their care, the 21st Century Cures Act represents a lost opportunity.
The Act provides billions of dollars for medical research, but allocates nothing to address the acute shortage of inpatient psychiatric beds in almost every state.
In a 2006 survey, 34 state mental health authorities reported a shortage of inpatient beds for acute psychiatric care. The shortages mean that patients who enter an emergency room with an acute psychiatric crisis may wait days or weeks for a bed, inmates who qualify for psychiatric care may wait in jail for several months before a bed becomes available, and patients who are admitted to a psychiatric hospital are often released too soon, in order to make room for other patients.
Psychiatric inpatient beds are rationed among patients according to a priority status determined largely by forces external to the mental health system. Patients whose treatment is mandated by a court have the highest priority. Patients who are referred to the system by a family member or physician have the lowest. Police officers familiar with the mental health system say that they take offenders who are exhibiting signs of mental illness to jail rather than to an emergency room, because jail is the more likely route to the mental health services they need.
The 21st Century Cures Act includes a provision to ‘study’ how HIPPA privacy rules affect the care provided to persons with serious mental illness. But we are beyond the point where further ‘study’ is needed. Just ask a family member, whose relative was released to their care while experiencing acute symptoms of paranoid schizophrenia, without their having any input into the decision.
Family members do not need carte blanche to review a patient’s medical records. However, if they have primary responsibility for the well-being of a person with serious mental illness, they do need sufficient medical information to ensure the welfare of the patient. They need to be able to communicate with the patient’s mental health providers. And, they deserve to have a voice in decisions that affect the wellbeing of their family.
The Act provides small amounts of funding to expand outpatient treatment services for persons with SMI, but no legal remedy for families in crisis because a patient has refused treatment. Mental illness is a disease of the brain - it affects an individual’s ability to make rational decisions for themselves. Many patients do not believe they are ill, so why would they need treatment or medication?
When a patient with SMI refuses to adhere to prescribed antipsychotic medications, chances are that acute symptoms of psychosis will recur. A relapse is disastrous for all involved. For the patient, it means their life falls apart. For the family, it means they must help put that life back together – again. For the community, it may mean shouldering the costs of homelessness, incarceration, or worse.
In such cases, the courts can do what families cannot. Assisted outpatient treatment is a court-ordered program that requires a patient to obtain treatment for their mental illness, as a condition to living in the community. Currently, 46 states have some form of assisted outpatient treatment law, but in most states the laws apply only in cases where a patient can be shown to be ‘a danger to themselves or others.’ Such laws leave family caregivers in a horrifying limbo, unable to get treatment for their relative until after someone has been seriously hurt.
Some families crack under the strain of caregiving. When my son first became ill, I attended a support group for families of patients with serious mental illness. One mother said that she refused to allow her son to live with her, because he would not take his meds, and his psychotic symptoms had become unbearable. She did not know where he was living, possibly on the streets. At the time, I could not understand how a parent could be so heartless. After six years caring for my son, and his third serious relapse, I understood.
It is long past time to fulfill our promises to provide care for persons with SMI in their communities. A real reform of the mental health system would use the power of the legal system to ensure that patients with SMI receive the treatment they need – relieving their symptoms and allowing them to become productive members of society. A real reform would appropriate sufficient resources to public psychiatric hospitals so that inpatient care is available for those who need it.
It is long past time to help the families of persons with serious mental illness, on whom the mental health system has placed so much of the burden of care. A real reform of the mental health system would provide much-needed support for family caregivers – giving them access to their loved one’s mental health providers, and allowing their voices to be heard.
Some readers may object to the expansion of assisted outpatient treatment, or relaxation of HIPAA mandates, or increased utilization of inpatient care, as violations of a patient’s civil rights. Is mental illness a question of rights? We do not allow patients with Alzheimer’s disease to refuse treatment, walk out of a nursing home, and wander the streets. Then, why do we allow patients with serious mental illness to refuse treatment and live homeless under a bridge? Why do we not do everything we can to provide treatment that can restore patients’ minds and ease their pathway to recovery? Mental illness is not a question of rights – it is a question of doing everything possible to help a patient recover from a devastating illness.