Negotiating the de-facto system

Negotiating the de-facto system:
Where do persons with serious and persistent mental illness live, what services and supports do they receive, what are their outcomes?

Principal Investigators: Kristine Jones, Ph.D., Carole Siegel, Ph.D. Co-investigators: Susan Barrow, Ph.D., Michael Friedman, MSW, Colleen Gillespie, Ph.D., Kim Hopper, Ph.D., Dixianne Penney, Dr.P.H., Judith Samuels, Ph.D., Michael Yedidia, Ph.D.

PROJECT GOALS

Persons with serious and persistent mental illness (SPMI) live in a variety of community environments; some receive services and supports while others do not. The appropriateness of their living arrangements, and the services and supports they receive are not always apparent and subject to question. This study aims to understand the de facto arrangements made by and for these individuals, how well these arrangements work for them, and the outcomes achieved.

RESEARCH METHODS AND RESULTS

Method: Data on the distribution of individuals with SPMI across various living situations within New York City, and the ways these persons make use of the mental health service system, is being collated. The process involves examination and integration of many data sources as well as validity checks on data accuracy. In Phase I of this project, begun in the Fall of 1999, the following has been achieved:

Adoption of an agreed upon definition of SPMI.
Identification of a set of mutually exclusive living locations.
Development of a set of service use categories relevant to community outcomes.
Estimation of the number of persons with SPMI residing at each location in 1997, based on multiple secondary data sources verified with key informants and other experts.
Development of a strategy to find the missing information or 'pieces of the puzzle' identified.
Service use examined based on data in the NYS Patient Characteristics Survey.

In Phase II of the project:

A literature search for information on entitlements, employment, mortality rates, prevalence of illnesses, victimization and criminality for each living location is being conducted.
The underlying financing, institutional rules, incentives, interactions between involved agents with respect to receiving services, entitlements, employment for each location, will be described.

Results: A working definition of PSMD and a set of mutually exclusive living situations were developed. Population estimates for each location were arrived at for 1997 using a large variety of data sources. Epidemiological estimates from nationally conducted surveys were used to estimate numbers for the household populations computed as residuals after other locales data were subtracted. Concurrently, estimations of formal mental health service use by location were derived using data from the NYSOMH Patient Characteristics Survey in a manner enabling examination of service use across residential loci.

The largest proportion of this population (three-quarters) live with families or on their own in “non-supportive” environments (in contrast to 98% of the general population who reside in their own homes or are part of family households). Among PSMD, half live with parents, smaller numbers maintain their own families, and less than 10% live alone. About a quarter of the homeless population include PSMD (3.76%). PSMD are the predominant population in all other surveyed locations. They reside in supportive housing programs (6.62%), adult and nursing homes (just over 4% for each setting), jails and prison (7.3%), the remnants of the state psychiatric hospital system (just over 2%), and Veterans Administration facilities (less than 1%). By comparison, among the general population, few reside in supportive housing or adult homes, and barely 1% live in nursing homes or are incarcerated in prisons. Attempts to update to 1999 found that some of the 1997 data sets had not been collected.

The proportion of PSMD using any specialty mental health services ranged from 24% for PSMD who are incarcerated, to 66% who reside in adult homes, to 100% for those essentially housed in service locations (supportive housing, long-term care in psychiatric hospitals). Work has also been completed on the distribution of services categories by loci.

SIGNIFICANCE OF FINDINGS/ POLICY IMPLICATIONS:

This project will help identify:

Major areas of unmet need and their respective magnitude.
Areas of poor fit between need/ capacity and resources deployed.
Institutional overlaps, and the incentives sustaining them.

Findings should inform a more rational distribution of responsibility for the basic living and clinical needs of this population. Data obtained, and appraisals of outcomes sorted by locations, can better highlight the kinds of populations that would most benefit from needed and varied service and support structures. By taking into account the full set of possible living situations and type and volume of intended and unintended support use, policy makers may be able to identify unmet demand and better anticipate impact of new initiatives on the community of PSMD.

PLANS

Our short-term goal is to complete the dissemination of findings in published and presented papers. For the long-term, using current literature and available data, investigators will describe the underlying financing, institutional rules, incentives, and interactions among involved agents re: movement of PSMD among locations, receiving supports, obtaining employment. We plan to identify gaps and develop strategies to complete missing information.

Entered: July 2000

Updated: July 8, 2003