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.

The short term aim of this study is to document (using a variety of administrative and research databases) the number in each of the possible living locations of these individuals, and by location the number and types of services they receive. The long-range goal is to determine how well these arrangements work and the outcomes achieved.

This project relies on the collaboration of researchers from multiple disciplines, planners, policy makers and consumers. To gain the systematic knowledge needed to achieve this project goal, two substantial barriers need to be overcome:

First, the study requires a multi-disciplinary collaborative approach across many perspectives and experiences, with input from persons with knowledge of epidemiology, psychology, economics, finance and government, with input from consumers and other stakeholders. Assessments need to be based on both quantitative and qualitative methods.

Second, data analysis requires a multi-dimensional reconciliation process that includes: agreement on a definition of SPMI; identification of locations where persons with SPMI are housed; an estimation method developed; the data on service use, entitlements, employment, mortality rates, illnesses, victimization, criminality for each location examined; financing and institutional rules understood; and a strategy developed to bring together missing pieces of information.

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 and updated for 1999, 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, an estimation of formal mental health service use by location was derived. Currently residential location data from the NYSOMH Patient Characteristics Survey is being mapped into the categories of the de facto location grid. This will enable us to examine service use by 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. 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.

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.

A more rational distribution of responsibility for the basic living and clinical needs of this population.

Collection of this type of data is of prime importance for policy and planning by state mental health agencies. The knowledge obtained, together with appraisals of outcomes sorted by locations, can better highlight the kinds of populations that would most benefit from other varied service and support approaches.

By taking into account the full set of possible living situations and obtaining a handle on respective 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 persons with SPMI.

PLANS

Using current literature and available data, investigators will describe the underlying financing, institutional rules, incentives, and interactions between involved agents re: moving among locations, receiving supports, and obtaining employment. We plan to identify gaps in the literature and data, and develop strategies for obtaining the ‘missing’ information. A paper will be written summarizing findings from Phase I. If the approach used in this project yields valuable results within New York City, adaptation for obtaining similar data for New York State is proposed.

Entered: July 2000

Updated: July 9, 2001
Updated: June 26, 2002

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