What's Needed Next

In 1963, President Kennedy challenged the nation to transform the lives of people with mental illnesses. The Kennedy family had first-hand experience with the pain of mental disabilities and their treatments. The president's sister Rosemary experienced long confinements in mental institutions and was treated with a lobotomy. His views surely shaped by the ordeal, Kennedy imagined a society that would no longer warehouse people with serious illnesses in state mental hospitals and would instead provide them with the services and supports that would allow them to live in and be part of their communities.

Forty-five years later, the lives of people with mental illness have indeed changed dramatically. Most live independently or with their families and receive treatment in their communities. Two generations of advocacy have vastly expanded the legal rights of people with mental illness to direct their own care. Growth in a number of key social programs since 1963 -- from Medicaid to Social Security Disability Insurance to Section 811 Supportive Housing -- has also been a boon to this population, providing people with a range of resources that make living in the community possible. Although these changes in living conditions followed a rather different path than President Kennedy had anticipated, the changes he hoped for have, in large measure, occurred.

But the restructuring of mental-health care in America has hardly been a complete success. The waning of the state hospital, a "total institution" that addressed all the needs of the institutionalized population, has provided people with the opportunity to live lives more similar to those of most Americans -- but it has also left a vulnerable population reliant on an array of fragmented and uncoordinated programs addressing income support, health insurance, human services, and housing. There are far too many opportunities for people to fall between the cracks. An important minority of people with mental illness has been "trans-institutionalized" into jails and prisons or left homeless on the streets. The mainstream programs that serve this group are often miserably underfunded, administratively impenetrable, and unprepared to address the distinct needs of this population.

While the organization and financing of mental-health care has been revolutionized, no parallel shift in administration and policy-making has occurred. Forty-five years ago, people with mental illness depended heavily on hospitals operated by state mental-health authorities, whose distinctive competency and authority was this population. Today, people with mental illness rely on a range of mainstream public insurance and social-service programs that are administered by the federal government or operated by the states within the confines of rules established by the federal government. The federal and state administrators and agencies charged with regulating and managing these programs have neither expertise nor a primary interest in mental illness. While financing for people with mental illness has expanded greatly over this period, stewardship for this population has waned.

If we are to ensure continued progress in the care of the mentally ill in America, we must develop a new locus of expertise and authority on their behalf. This new effort needs to be highly visible, so that advocates can call it on the carpet. It must possess both expertise and authority, so that it can influence the design and management of disparate public programs. And it needs to be federal, because that is where today's dollars and program rules originate.

Toward these ends, we propose that the next president create a new Office of Mental Health Policy, modeled on the Office of National Drug Control Policy (the ONDCP, or so-called "Drug Czar"). This office would be the locus for mental-health lobbying and advocacy efforts and would provide policy-makers throughout the federal government with a source of expert advice on mental health and mental-health care that could inform the design of policies affecting people with mental illness. It would report directly to the president and have limited budgetary authority. As an example, the ONDCP, which is charged with coordinating drug-control policy across a wide range of federal and state agencies, must certify that federal agency budgets are consistent with the national drug-control strategy. A new, visible, accountable, and influential Office of National Mental Health Policy, charged with stewardship of mental health, would restore a voice for people with mental illness and an understanding of their unique circumstances to the programs that most affect their lives. While no agency or office can be expected to solve the problems of people with mental illness, an Office of National Mental Health Policy would be an important step toward completing the transformation in the care and support for people with mental illnesses that President Kennedy envisioned.