Putting the person at the center of care

by Dr. Barbara Smith, Asst. Prof. Social Work and Psychiatry, UNC, News and Observer, August 18, 2013.

Mental health reform has always been cyclical, and we are at a critical juncture. President Obama has called for a national conversation on mental health, and Gov. Pat McCrory has created a Partnership for a Healthy North Carolina to address Medicaid reform. As we move forward, it might help to remind ourselves of some history.

When Dorothea Dix visited North Carolina in 1848, she traveled the state to investigate how the mentally ill were treated. At the time, local communities cared for the mentally ill. They lived in county poorhouses or other, even less-humane confinements. She described one community in which a “lunatic” was housed in a small, windowless shed in a bed of straw and his own filth, his presence made known by constant wailing.

Dorothea Dix successfully made the case for humane, moral treatment of the mentally ill. When the state legislature granted land for the construction of our first state hospital, it also took responsibility for the cost of care for these vulnerable citizens.

As part of John F. Kennedy’s New Frontier, the Community Mental Health Centers Act of 1963 created a system of care based in local communities, with a mix of federal, state and local funds. The community mental health system was never fully funded. And because it was governed separately from the state hospitals, care for the most severely ill was never a priority.

In 1980, Jimmy Carter signed the Mental Health Systems Act to create a national mental health system, making federal funds available to states, with a focus on persons with severe mental illness. In 1981, Ronald Reagan repealed this legislation, cut mental health funding and sent block grants to the states.

Starting in the ’80s, states focused on using Medicaid dollars to fund mental health services, reducing the amount the states contributed. Funding for state hospitals remained the responsibility of states.

In North Carolina, we have significantly increased reliance on Medicaid to pay for mental health care. But this excludes many in great need. Those left out include young persons with emerging severe mental illness.

Schizophrenia and other severe mental illnesses typically emerge between the ages of 14 and 25. At first, the person may be ill but not disabled, and the person may not be poor. But without access to care, health and economic conditions can quickly worsen.

For 20 years, I’ve practiced as a clinical social worker with a specialty in working with persons with schizophrenia and their families. I’ve provided both psychotherapy and case management, true to the person-in-environment focus of social work practice.

I feel some optimism with the proposed reform for Medicaid – care for the whole person. Our segregated health and behavioral health systems are currently separate and not equal.

What might integrated care look like? I’ve been thinking of a former client of mine. I met him in 1995, when he was homeless. He developed schizophrenia when he was in college. His family did not understand why he struggled in life and cut off contact with him. We worked with him to find housing, and with a secure place to live, he settled into stability, with the support of continuous mental health treatment.

Over the years, I watched his health decline. One day, he came to see me and could barely speak. He was clearly ill and terrified about seeing a medical doctor, so I went with him. He had a chest X-ray and exam and was sent home. The doctor called the next day and urged him to go to the emergency room immediately – he politely refused. I took him to the ED the following Monday. While there, he was diagnosed with advanced lung cancer. I asked him whether he wanted to call his mother, whom I had never met. He asked me to call her.

Over the next months, my client reconnected with his family. They could understand cancer. His mother, his community support worker and I got him to his chemotherapy and radiation treatments. I helped him talk with his mother about his final wishes for burial. And his mother was with him when he died, which is what he wanted more than anything. This was whole person care, and in the end, we were able to help a whole family heal.

I look forward to the day when care like this is common. When that day comes, it will be because the system we create is accessible to all who need it, reconnects the head to the body and puts the person and the family at its center.