Eight Years Later - Conroy ReportFor those who are not familiar with Assembly Bill 896, which proposes to
close California's institutions for people with developmental disabilities,
more information is available from this Inclusion Daily Express web page:
Click here for full report
Eight Years Later:
The Lives of People Who Moved From
Institutions to Communities in California
Year 2001 Report of the Quality of Life Evaluation
Of People with Developmental Disabilities
Moving from Developmental Centers into the Community
(The "Quality Tracking Project")
Final Report
(Year 2) '
Submitted to:
The Honorable Gray Davis
The Honorable Steve Peace, Senate Budget and Fiscal Review Committee
The Honorable Dede Alpert, Senate Appropriations Committee
The Honorable Carole Midgeir;-Assembly Appropriations Committee
The Honorable Wesley Chesbro, Senate Select Committee on DD & MH
The Honorable Dion Aroner, Assembly Human Services Committee
Mr. Dale Sorbello, Department of Developmental Services
Submitted by
Marguerite Brown, MS, Amanda Fullerton, MS, .lames W. Conroy, Ph.D.,
and Mary F. Hayden, Ph.D.
The Center for Outcome Analysis
201 Sabine Avenue
Narberth, PA 19072
610-668-9001, fax 610-668-9002, e-mail [email protected]
July 1, 2001
Prepared Pursuant to Contract Number HD989038 from 1999 to 2002 in the Amount of $1,410,515
Executive Summary
The Quality Tracking Project of the California Department of Developmental Services is intended to track and monitor the well-being of more than 2,000 Californians with developmental disabilities who left institutions (Developmental Centers) since 1993. The origin of the project can be found in Welfare and Institutions Code 4418.1, which is reproduced below.
Welfare & Institutions Code 4418.1
(a) The Legislature recognizes that it has a special obligation to ensure the well-being of persons with developmental disabilities who are moved from state hospitals to the community.
(b) To ensure that persons with developmental disabilities who are moved from state hospitals to the community are receiving necessary services and supports, the department shall contract with an independent agency or organization for the tracking and monitoring of those persons, including all persons moved as a result of the Coffelt v. State Department of Developmental Services settlement agreement and any persons moved after the terms of that agreement have been met.
(c) The contractor shall be experienced in all of the following: (1) Designing valid tracking instruments. (2) Tracking the quality of community programs, including outcome-based measures such as health and safety, quality of life, integration, choice, and consumer satisfaction. (3) Tracking the quality and appropriateness of community placements for persons moving from large institutions into community settings. (4) Developing data systems. (5) Data analysis and report preparation.
(d) The contractor shall measure consumer and family satisfaction with services provided, including case management and quality of life, including, but not limited to, health and safety, indelTendence, productivity, integration, opportunities for choice, and delivery of needed services.
(e) The information maintained for each person shall include the person's name, address, nature of disability, medical condition, scope of community-based services and supports, and the annual data collected by the contractor.
(f) The contractor shall meet with each person, and the person's family, legal guardian, or conservator, when appropriate, no less than once a year to discuss quality of life and observe the person's services and supports. In cases where the consumer is not capable of communicating his or her responses and where there is no family member, guardian, or conservator involved, the contractor shall meet with no less than two persons familiar with the consumer. Additionally, the contractor shall interview staff and friends who know the consumer best and review records, as appropriate.
(g) If the contractor identifies any suspected violation of the legal, civil, or service rights of an individual, or if the contractor determines that the health and welfare of the individual is at risk, that information shall be provided immediately to the regional center providing case management services, the client rights advocate, and to the department.
(h) The department shall monitor the corrective actions taken by the regional center and maintain a report in the person's file. The consumer and, when appropriate, his or her parents, legal guardian, or conservator, shall be provided with access to the person's file and be provided with copies of all reports filed with the regional center or department relative to them.
(i) The department shall establish a task force, including representatives from stakeholder organizations, to annually review the findings of the contractor and make recommendations regarding additional or differing criteria for information to be gathered by the contractor in future interviews.
(j) As of July 1, 1998, and annually thereafter, the contractor shall provide a report to the Governor, the Legislature, and the department outlining the activities and findings of this process. The reports shall be public and shall contain no personally identifying information about the persons being monitored.
Final Report, Quality Tracking Project, July 2001, Page 1
The present Annual Report is the third one delivered in response to the law above. It is the second report prepared for the Governor, the Legislature, and the Department of Developmental Services, by the Center for Outcome Analysis.
Our primary goal in this Report is to answer the question "Are the people who moved better off than they were when living in Developmental Centers?" And, for the first time, we have explored a related question, "Are the people who moved into community homes better off than they were last year?" In other words, do they continue to grow, learn, and flourish year after year in the community? Our third purpose is to describe in quantitative, scientific terms what are the characteristics of the people and what are the qualities of life they experience in their new community homes? When appropriate, we also include comparisons to similar studies we have conducted in other states.
As for the first question, we find that the "Movers" (the people who moved from institution to community) have benefited considerably from community living. We attempted to conduct a visit with every single Mover, and we were successful with 2,170 of them (94% of all known Movers). The average visit lasted 79 minutes. We collected data and scales that have been very widely used, extensively tested, and are known to be reliable and valid. The data collected included measures of independence, behavioral challenges, choicemaking, friendships, integration, person-centered planning, health, service intensity, earnings, and both consumer and family satisfaction.
In this Report, we delineate exactly what has changed in the lives of 191 of the Movers compared to what their lives were like when they were living in Developmental Centers. We can do this because, back in 1994, we collected the same data for a random sample of 839 people living in Developmental Centers. Now, 7 years later, 191 of those 839 happen to be out in the community, and we now know how they are doing in dozens of ways.
The data show, with considerable clarity, that the Movers are better off than they were when living in a DC in 1994 in 11 of 21 major dimensions that we measured. Some of these
Final Report, Quality Tracking Project, July 2001, Page 2
are "integrative activities," "individualized treatment," "progress toward individual goals," "opportunities for choicemaking," "reduced challenging behavior," and "perceived quality of life in 10 areas." Families too are unexpectedly and overwhelmingly happy with community living, even those who formerly opposed the change. However, they are somewhat worse off in the "number of close friends," the "staff perceptions of the quality of health care," and the "frequency of dental care." Moreover, very few people have become involved in competitive or supported employment. We suggest that the community system still needs attention in the areas of health and dental care, and employment and income generation, and also that systematic thought needs to be devoted to the issue of natural relationships with other than paid employees.
Our analyses over the years revealed that the earlier Movers experienced major behavioral gains - adaptive behavior increased, and challenging behavior decreased. The later Movers tended to show smaller gains. This led to a new analysis, for all the Movers, in which we examined changes in life from the year 2000 to the year 2001 for 1,912 Movers. We found that the average Mover actually lost ground n adaptive behavior in the past year in the community. We also found that the average Mover lost ground in the challenging behavior area too; that is, their challenging behavior increased. These findings, although small, were both highly significant, and both scales are sufficiently reliable to be virtually certain that something genuine is being measured.
This is the first time in 22 years of constant research by this team that such an outcome has been observed. We have never before seen people in community service systems lose skills and increase challenging behavior. However, the monitoring process put into place through Welfare & Institutions Code 4418.1 has resulted in early detection of these problems. A concerted effort to identify the reasons for these outcomes can surely result in quick and decisive action to arrest further decline. Without the kind of quantitative monitoring mandated
Final Report, Quality Tracking Project, July 2001, Page 3
by the Legislature for the present project, no one would even know that the average Mover has now begun to lose ground behaviorally.
At the same time that the Movers were experiencing the first behavioral decline, they were rapidly increasing their choicemaking opportunities. This apparently paradoxical finding is fully discussed in the second section of Pre-Post Results. We must proceed with considerable caution in trying to interpret the new findings. The new findings are mixed. Before we make a judgment about how "bad" or "good" these findings are, we must carefully study how people's lives have changed. If they are expressing fewer adaptive skills, and more challenging behaviors, while they have gained rapidly in controlling their own daily lives and decisions, then what exactly is the nature of the balance that seems to have shifted? How did this balance shift over the past year or two, and why? These are the questions that must be explored before any parties, on either side of the ever-present community versus institution debate, claim to know what these findings imply. We do not yet know what they imply.
Since 1995, the staff of the California Quality Tracking Project have been reporting to DDS that the community system is "underfunded." We repeat this refrain. The evidence has always been very clear. Other states have undergone very successful deinstitutionalization movements, and they too did it in ways that saved some money, and that money then went to support people and families who were in need. But, California was different from the other states.
California "saved" much more money than the other states as reported to DDS and the court in the Coffelt case in 1996 in Report 8 of the prior series. For example, New Hampshire expended 86% of its institutional cost per person on community supports, Pennsylvania 85%, and Connecticut 80%. In contrast, California spent 55%. Other national studies have noted
2 Conroy, J. (1996, February). Patterns of Community Placement II The First 27 Months of the Coffelt Settlement, Report Number 8 Of the 5-Year Coffelt Quality Tracking Project, California Department of Developmental Services
Final Report, Quality Tracking Project, July 2001, Page 4
that California's fiscal effort with regard to funding community programs is low in comparison to other states. It is difficult to draw precise fiscal comparisons with other states as each state develops and allocates resources from multiple funding streams. However, California's rating on several standard measures of fiscal commitment appears low. We will note again that there is danger in trying to save too much money on institutional to community transition initiatives.
Although we have evidence of a service system that may be troubled, in that two behavioral outcomes have slipped in the past year, it needs to be reiterated that the Movers are still much better off than they were at the Developmental Centers. Almost no one wants to go back. Only a few families would like their relatives to go back. The people themselves, and those closest to them, believe their lives are significantly better in 9 out of 10 ways we asked them about. The people who moved are far more integrated, and have much more of a role in making choices about their daily lives. There has been no major decrement in health and/or safety. The people and their families believe they are as healthy as ever, and as safe as ever.
The movement of more than 2,000 Californians from institutions to community homes was excellent social policy. However, the data deliver a clear warning that should not be ignored. The recent downturn in two behavioral outcomes needs to be understood, and analyzed in the context of other behavioral outcomes that were enhanced. The meaning and causes of the new findings must be explored in depth.