State Policy and Funding of Services to Families of Adults With Serious and Persistent Mental Illness

The importance of families in the lives of adults with schizophrenia is well documented. Persons with schizophrenia frequently live with their families of origin or have significant family contact (1). Families of persons with schizophrenia cite their own need for education and support to cope with their family member's illness (2).

Further, numerous studies have supported the benefits of interventions designed to meet the needs of family members. Well-designed and rigorous clinical family psychoeducation programs have reduced patient relapse rates and enhanced compliance, compared with individual therapy alone (3). Family psychoeducation is delivered within the treatment system by professionals. A variety of other service models to help families, including family-to-family self-help programs and family consultation models, have been shown to enhance family knowledge and well-being (4,5).

The Schizophrenia Patient Outcomes Research Team (PORT) has developed treatment recommendations for the care of persons with schizophrenia (6). These recommendations were derived from an extensive review of the treatment literature that emphasized methodologically rigorous research studies. One of the PORT recommendations asserted as follows: "Patients who have on-going contact with their families should be offered a family psychosocial intervention which spans at least nine months and which provides a combination of education about the illness, family support, crisis intervention, and problem solving skills training." Notably, other efforts to define standards for best practices such as the American Psychiatric Association practice guidelines (7) and the expert consensus guideline series (8) have also recommended that families receive education and support.

We previously reported PORT data from Medicare and Medicaid claims and the results of a direct client interview study suggesting that among persons with schizophrenia who are receiving treatment, only a small minority of their families receive any services from treatment systems (9). The purpose of the study reported here was to assess the extent to which states are facilitating the delivery of services to families of adults with severe and persistent mental illness.

Methods

A five-question written survey was distributed between January and June 1998 to representatives of state mental health programs as a collaborative effort of the Hopkins/Maryland Center for Research on Services for Severe Mental Illness and the National Association of State Mental Health Program Directors Research Institute. The questions were as follows:

• Does your state have an official policy with regard to the types of services families of adults with severe and persistent mental illness must be offered in state-funded systems?

• Does your state fund or sponsor any family support intervention?

• Does your state do any of the following to encourage the delivery of services to families of adults with severe and persistent mental illness—make treatment recommendations, use regulations, offer financial incentives?

• Are providers reimbursed for providing services to families of adults with severe and persistent mental illness?

• Does your state monitor how many families receive services?

Results

A total of 44 states responded to the survey, for a response rate of 88 percent. The majority of responding states—32 of the 44 states, or 73 percent—indicated that they do not have a policy about the types of services families of adults with severe and persistent mental illness must be offered in state-funded systems of care. The types of policies states reported in the minority of states that had such a policy varied. For example, Maine reported that the state must adhere to a consent decree that requires the delivery of family support services. North Carolina reported the general requirement that families of adults with severe and persistent mental illness are included in the treatment planning process with the consent of the consumer.

In contrast to the general absence of policies, 80 percent of respondents—35 of 44 respondents—indicated that the state funds or sponsors a family support intervention. Twenty-seven of the 35 states reported providing such support to Journey of Hope, the family-to-family program sponsored by the National Alliance for the Mentally Ill (NAMI), or other NAMI efforts. Only three states reported funding the type of psychoeducation program on which significant and rigorous research has been conducted, William McFarlane's family psychoeducation program (10). The remaining five states funded a variety of other programs, including respite care for family caregivers, family workshops, and other family education models. The amount of money dedicated to family programs during the last year ranged from $11,500 to $150,000 per year.

In the absence of specific policies about services to families of adults with severe and persistent mental illness, states reported using a variety of mechanisms to encourage the delivery of services to these families. Twenty-four states reported using treatment recommendations, 15 reported using regulations, and 13 reported using financial incentives.

The majority of states—27 of the 44 states, or 61 percent—reported that providers were reimbursed for services to families. The nature of this reimbursement varied. Medicaid was the most common payer for "collateral" services. Some states reported capitated or case-rate systems that allow family services to be delivered as part of the overall service package.

Only ten of the 44 responding states, or 23 percent, indicated that they monitor how many families receive services. Typically, monitoring consisted of estimating the number of families who were participating in the family-to-family programs supported by the state. No state appeared to have statewide monitoring in treatment systems of the nature of families' participation in and receipt of services.

Discussion and conclusions

The study results suggest that the states earn a mixed report card for their efforts to provide services to families of adults with severe and persistent mental illness. On the one hand, state mental health authorities at least acknowledged the importance of educational programs for families, and funding for such programs is beginning.

The role of the National Alliance for the Mentally Ill and the Journey of Hope and other family-to-family education programs cannot be underestimated. These programs received the majority of funding. Such family-supported and family-taught programs may be substituting for services that to some extent should be provided by the mental health system. The extent of support for family interventions might be even more limited were it not for the muscle and advocacy provided by NAMI and its grassroots constituency.

On the other hand, the states show only limited support for family interventions. Only a minority of states reported having policies addressing such interventions. Although the majority of states reported providing funding, the amount of funding is very limited—generally less than $100,000 per year. Sixty-one percent of the states reported that they reimburse services to families. However, our previous research suggested that funding for family interventions through Medicaid payments is quite limited, compared with payments for individual and group services (9). Further, procedures for tracking and monitoring such services are almost nonexistent.

The availability of formal treatment recommendations, such as those from the Schizophrenia PORT, offers the potential for improving the quality of care. For example, advocates can enhance the delivery of services to families by holding state mental health authorities accountable for adhering to recommended treatment. However, in the absence of a mechanism for payment for such services, the impact of disseminating treatment recommendations is likely to be severely limited.

This somewhat imprecise but comprehensive snapshot view of the extent of states' support of family interventions suggests numerous questions and challenges for policy makers, providers, and families. Is the mental health system's level of funding and support for family interventions adequate? Is it acceptable or indeed preferable for such services to be delivered primarily by families to families, bypassing the mental health system? Finally, what is the role of treatment recommendations, regulations, and financial incentives to increase the quality of care by increasing services to families?

Acknowledgments

This study was supported by National Institute of Mental Health grants K20-MH-01250-01 to Dr. Dixon and 5-R24-MH-53148 to the National Association of State Mental Health Program Directors Research Institute.

Dr. Dixon and Dr. Goldman are affiliated with the Center for Mental Health Services Research in the department of psychiatry at the University of Maryland School of Medicine, 701 West Pratt Street, Fourth Floor, Room 476, Baltimore, Maryland 21201 (e-mail, [email protected]). Dr. Goldman is also project director of the research infrastructure support program at the National Association of State Mental Health Program Directors Research Institute in Alexandria, Virginia, where Mr. Hirad is a research assistant.