Revised: March 05, 2003

In the past 20 years, a body of literature has developed on deinstitutionalization of people with developmental disabilities.  It shows what happens to the quality of life of people with developmental disabilities when they move from large congregate care settings to community living. (Craig & McCarver, 1984; Haney, 1988; Larson & Lakin, 1989 and 1991.)  This body of literature is remarkably consistent.  Without contradiction, it demonstrates that people are "better off" in most ways when they leave large congregate care settings for community living in small, family-scale homes. Correspondingly, the satisfaction and perceptions of quality among parents and other family members rises.

Deinstitutionalization is far from new, and very far from untested.  The graph below shows what has been happening to institutional populations in the United States since 1850.

150 Years of Institutional Care in America

1000s of People in State Operated Public Institutions

As the graph shows, the past 30 years have seen the population of America’s public institutions for people with mental retardation reduced from about 190,000 to under 45,000.  The process is continuing.  Nearly every state mental retardation authority has concluded that no human being, regardless of degree of disability, “needs” to be isolated, segregated, or grouped with hundreds of “similar” people. 

Since nearly 150,000 people have already experienced the move from institution to community, there has been ample opportunity to study the phenomenon.  Many research groups have been involved in this work.  Some of my own work will be summarized below, in order to provide the Court with the detailed reasons for my opinion in the current case.

The measurable benefits from moving to the community can be summarized. The central question of studies of the outcomes of community placement has been: “Are people better off, worse off, or about the same?”  The phrase “better off” inherently implies the notion of “quality of life.”  However, nearly all people have their own complex of factors that they believe contribute to “quality of life.”  Usually their beliefs are not explicit, but rather, they form an internal set of values and judgments that are not always clearly defined.  In this situation, the best available scientific approach is to address as many aspects of “quality of life” as are reliably measurable.  Some of the dimensions of “quality of life,” or outcomes, that social scientists know how to measure reasonably well include:

·        independence

·        productivity

·        integration

·        access to the places and rhythms of mainstream American life

·        access to services when needed

·        health

·        health care utilization

·        health care satisfaction

·        mental health

·        mental health care utilization

·  mental health care satisfaction

·        friendships

·        physical comfort

·        privacy

·        individualized treatment

·        freedom from excessive restraints (physical, chemical, and authoritarian)

·        respect for dignity and human rights by staff and others

·        support for choicemaking and learning to make choices

·        personal satisfaction with multiple aspects of life

·        satisfaction of the family members and “circles of friends” who care about the person

·        the overall “locus of control” of the pattern of life (by paid professionals and/or by the person and non-professional relatives, friends, and advocates); power, control, choice, self determination.

When multiple aspects of quality of life, or outcomes, are measured in a social program, the results are likely to be “mixed.”  A given social intervention may improve peoples’ lives in some areas, while diminishing them in others, and leaving still other areas unchanged.  This is a typical result, for example, in the field of substance abuse treatment programs.

However, the research literature on community versus institutional living has not been “mixed.”  Through the assessment of all of these quality of life dimensions, my research in 18 states, and the research of other scientists in America, has consistently shown strong benefits associated with community placement.  Furthermore, the results have been extremely powerful, in that improvements have been documented in nearly every measurable outcome dimension.  Research in other nations (Australia, Canada, Denmark, England, France, Ireland, the Netherlands, New Zealand, Norway, Sweden) has revealed remarkably consistent findings associated with institutional closure (Mansell, J., & Ericsson, K. (Eds.), 1996.  Deinstitutionalization and Community Living: Intellectual Disability Services in Britain, Scandinavia, and the USA. London: Chapman and Hall.)

In the following pages, I will briefly summarize the results of some of the largest and longest lasting studies of deinstitutionalization outcomes yet conducted:  the Pennhurst Longitudinal Study (Pennsylvania), and the Mansfield Longitudinal Study (Connecticut).  These two studies are of special interest because both culminated in total closure of the institution, with nearly all residents moving to community settings.  At the end of this section, I will summarize other large scale studies of community placement processes in New Hampshire, New Jersey, North Carolina, Oklahoma, Kansas, and Indiana. 

            Finally, I will provide some detail about the work that has been in progress in California since 1994, and is continuing right now.  In this California work, my team will be visiting every one of the more than 2,300 people who moved out of Developmental Centers under the terms of the Coffelt settlement.  We are measuring all of the quality of life dimensions above, and are also visiting day programs, and surveying families.  At the time of this writing, we have completed visits with 900 people.  We expect the visits to be completed by March.  At that time, we will be able and willing to report the findings to the Court, including any subgroups such as people who left Fairview Developmental Center.

 Pennhurst Longitudinal Study Results:  Pennsylvania

In the Pennhurst Longitudinal Study, I was asked by the United States Department of Health and Human Services to study the effects of the district court’s orders in Halderman v. Pennhurst, 446 F.Supp. 1295 (E.D. Pa. 1978).  This Order resulted in the transfer of all of the people living in a large state institution in Pennsylvania to small, supervised community living arrangements (CLAs) in the communities from which they originally came.  Since 1978, I and my colleagues have individually monitored the well-being of each of the plaintiff class members -- more than 1,700 people -- every year.  Following is a summary of the results of the study through 1992 (the last year in which I directly supervised the project).

A.  The People:

1154 people lived at Pennhurst on the date of Judge Raymond J. Broderick’s historic Order of March 17, 1978.  My team immediately visited every one of those people, and collected information about characteristics, abilities, behavior, health, and service needs.  These people (and other Pennhurst class members) are still being tracked.  Every person is visited every year, and every family is sent a survey.  We know more about their quality of life over the past decade and a half than any other group of people with disabilities in history.  Their characteristics at the beginning, in 1978, were as follows:

B.  The Community Model:

Three person Community Living Arrangements (CLAs) were the predominant program model in Pennsylvania at that time.  These were either detached houses or apartments, and almost all were existing housing stock.

·        Some shift staffing and some live-in;

·        (later became almost entirely shift);

·        90% non-profit provider entities;

·        A day program was arranged before placement for every person.

C.  Additional Court Protections:

·        Special low-caseload Case Managers (1 to 30);

·        Consistent format IHPs, with multiple reviews;

·        Requirements for independent monitoring (including the Pennhurst Study itself).

D.  Development Toward Increased Independence (See Adaptive Behavior Development Graph)

·        In addition to the information in the graph, later study produced these findings:

·        Average gain in self-care skills upon placement 9%;

·        3 years after placement 12%;

·        Most recent measurement, 1992, 14%.

 Pennhurst Longitudinal Study:  

Adaptive Behavior Development 1978-1986
 

QUOTE from the Pennhurst Study report:  “The adaptive behavior growth displayed by people who have moved to CLAs under this court order is literally 10 times greater than the growth displayed by matched people who are still at Pennhurst.”

E.  Challenging Behavior:  The improvements are shown on the graph headed “Improvements in Challenging Behavior.”  Moreover, the following findings accrued in later years:

·        Average improvement in challenging behavior area upon placement 1%;

·        3 years after placement 3%;

·        Most recent measurement, 1992, 6%.

 Pennhurst Longitudinal Study:  

Improvements in Challenging Behavior

F.  Qualities of Environments

Scales measured included Normalization, Individualization, the 1979 version of the standards of the Accreditation Council for Mental Retardation and Developmental Disabilities, and Physical Quality.  All scales improved sharply and significantly upon community placement.

G.  Consumer Satisfaction

The Pennhurst Study included repeated interviews with 56 people who were able to communicate.  About a third of those people reliably said they were happy at Pennhurst, and wanted to stay there.  After the moves, about two thirds reliably said they were happy in their new community homes, and wanted to stay in them.  The number of people reporting satisfaction with aspects of life in the community was approximately double what was found in the institution.  There were no areas of decreased satisfaction over the entire course of the study.

H.  Amount of Service

People who moved to the community began to receive more hours of developmentally oriented service per month than similar people who stayed at Pennhurst (225 hours per month versus 189 hours per month).  Hence we concluded that, on an overall index of amount of service, the movers were better off.

I.  Health and Health Care

Indicators of health remained stable across the entire length of the study. Use of medications decreased slightly after community placement.

J.  Day Activities

The proportion of people taking part in an active day program increased from about a third at the beginning of the study at Pennhurst to practically 100% at the end in the community.

K.  Family Satisfaction:  Initially, in 1979, the families of the people at Pennhurst were very highly satisfied with the institution.

 Pennhurst Longitudinal Study:  

Initial Family Satisfaction with the Pennhurst Institution  

 These same families were also quite strongly opposed to community placement.

 Pennhurst Longitudinal Study:  

Initial Family Attitudes About Community Placement (1979)  

 At the beginning, 83% of families reported satisfaction with Pennhurst, and 72% opposed movement to the community. 

When surveyed later, however, these families had radically changed their views.  When asked whether they thought their relatives were happier or less happy since moving, the 1991 survey results were as shown below.

Pennhurst Longitudinal Study:

“Has Your Relative’s General Happiness Changed Since Moving to the Community?”

Not a single family believed their relative was less happy in the community.  Other related analyses showed that the strong prevailing attitude had shifted to support for community living.

Pennhurst Longitudinal Study:

Agreement With the Idea of Community Living, “Before and After”

The graph shows a dramatic change in attitudes about relatives living in the community.  This analysis was performed with 134 families who completed our surveys both in 1979 and again in 1984.

Some of the most compelling findings in the study were the verbatim comments of the families after deinstitutionalization.  These comments frequently included expressions of surprise that they (the parents) had ever opposed community placement in the first place, coupled with surprise at the magnitude of improvements in the qualities of their loved ones’ lives.

In a 1991 community survey of these same families, the results from 420 responding families concerning their overall satisfaction with community living were:

L.  Neighbor Acceptance

About three fourths of neighbors never find out there is a group home in their neighborhood.  Of those who do know, only about half had any negative reactions, and those tended to vanish by a year to a year and a half.

M.  Costs

The total public cost of serving the people who moved to Community Living Arrangements (CLAs) was significantly less than for the matched people still at Pennhurst (about $110 per day versus $129 per day at Pennhurst).  However, the fiscal burden shifted sharply from Federal to state sources for the people who went to CLAs.  Because Federal funds were being used for Pennhurst but not for CLAs, the state contributed about $57 per day for people at Pennhurst, and about $98 per day for people in CLAs.

Today, community programs are just as able to obtain Federal Medicaid funds as are institutions, primarily through the Waiver program.  California is a major participant in these Waiver programs.  Hence, the old disincentive for states to support community services is gone.

N.  Synopsis of the Pennhurst Longitudinal Study

The 5 years of the Pennhurst Study led to the conclusion that, on the average, the people deinstitutionalized under the Pennhurst court order were better off in practically every way measured.  For the people who moved from Pennhurst to small community residences, results were conclusive.

Since the end of the Federal study, my group continued to monitor the well-being of the Pennhurst class members with state, local, and University support.  The positive outcomes have not only been maintained, they have continued to increase.  For example, the class members have become continually more and more independent since moving to community homes.  Year after year, their challenging behaviors have decreased.

The Pennhurst research led me to try to replicate the study in other states, with and without Court involvement.  Replication is at the heart of science.  I have been fortunate in this regard.  The Pennhurst research has been replicated, and extended, and refined, in many other states.  Some of these will be described below, particularly the Mansfield Longitudinal Study in Connecticut, the Applied Research Project in New Hampshire, the Quality Assurance Project in Oklahoma, the Winfield Closure Study in Kansas, the Quality Tracking Project on Institutional Closures in Indiana, and the Quality Tracking Project related to the Coffelt settlement in California.

 Mansfield Longitudinal Study Results:  Connecticut

In Connecticut, I and my associates followed 1,350 class members in CARC v. Thorne, No. H-78-653(TEC) (D. Conn.) to measure their well-being.  A tracking project of this kind was required by the consent decree entered in that case in 1985.  At the beginning of the study, most class members were in congregate care settings:  state institutions, state regional centers, and private nursing homes.  Between 1985 and April, 1990, approximately 600 persons received community placements under the consent decree.

The CARC class was typical of the population of public institutions in America.  The average age was 46; 53% were male; their average adaptive behavior score before placement was 45 on a scale of 1 to 100; and their average score in challenging behavior was 79 on a scale of 1 to 100.  About 7% of the class had a hearing loss, 15% had no vision, 21% had seizures, and 20% had serious medical needs.  Approximately 69% of the persons who received community placements under the Court order were labeled severely or profoundly retarded, compared to 75% of the CARC class as a whole.  This showed that community placement included people with the most intense needs, rather than being restricted to people gifted with high ability levels.

We completed three major research designs in Connecticut. The three studies were (1) changes in well-being from pre-move to post-move; (2) comparison of changes in well being among people who moved versus extremely similar (matched) people who did not move; and (3) surveys of parents, other next of kin, next friends, and guardians.

The overall results of five years of study of the people deinstitutionalized in Connecticut are summarized in the table on the following page.

Individual Outcomes Associatiate with Deinstitutionalization

Connecticut’s Mansfield Class Members, 1985-1991

 This table shows, from three separate studies over a 5-year period, that the people who moved from institution to community were significantly better off in most of the dimensions that we knew how to measure.

On the average, class members in CARC v. Thorne who received community living arrangements under the Court’s order made significant gains in adaptive behavior after placement in the community.  Moreover, people labeled profoundly retarded made the greatest proportional gains:  more than 28 percent (Stull, Conroy, & Lemanowicz, 1991).  The longitudinal research design also showed that people who moved to community settings decreased their challenging behaviors during the years of the study.

In the area of social integration, movers began with 3.1 events per week of being in the presence of nonhandicapped peers when living at the institutions. They increased to 23.0 events per week in the community.  We also found an inverse relationship between the size of a community living setting and the degree of social integration experienced by its residents.  Residents of smaller homes experienced more opportunities to be in the presence of nonhandicapped persons (Conroy, 1992).

In 1988-89, only 29 members of the CARC class had experienced even a short-term placement in a psychiatric facility, regional center or institution. This suggested that there was little or no need to maintain the institutional setting; it was often suggested that the institution should be maintained as the “backup” for people whom the community had difficulty handling.

Members of the CARC class who received community placement received medical care of an appropriate frequency.  The average class member had seen a physician within the preceding 5 months, and a dentist within 4 months.  These frequencies compared favorably with figures for the general public.

During the course of our studies in Connecticut, we saw the cost of care at the Mansfield institution rise to $290 per person per day, more than double the cost of services in the community.  Even at that funding level, the quality of life in the institution could not come close to matching what was available in the community for very similar people.  We did find that quality had improved measurably in the institution, such as in the areas of social integration and increased earnings, but in no area were the gains as large as they were for people who moved from institution to community.

We also found that people who had resided in community settings during the entire course of the study had made significant gains in many areas of quality of life dimensions, including adaptive behavior, challenging behavior, social integration, productivity, earnings, satisfaction, and family satisfaction.

Just as in the Pennhurst Study, the families of the CARC class members opposed community placement at first, but later shifted to strong support.  The graph below shows the extent of attitude change among all of the Mansfield parents whose adult children moved from institution to community, and who answered both of our mail surveys in 1986 and 1990. 

From all the results reported above, I concluded that many improvements occurred in the lives of people receiving services in Connecticut.  By far the greatest improvements were seen among the people who moved from institution to community.

Brief Reviews of Other Relevant Community Placement Studies

From 1981 onward, I have been involved in studying the process of deinstitutionalization in New Hampshire (Bradley, Conroy, Covert, & Feinstein, 1986; Conroy, Dickson, Wilczynski, Bohanan, & Burley, 1992).  In January of 1991, the Laconia State School and Training Center closed.  New Hampshire thus became the first state in which no citizen with a developmental disability lived in a state institution.

All of the people who remained at Laconia, a facility with a long and honorable history, are now living in community settings.  Most of the last remaining group of people had serious behavioral or medical/health challenges. Up until the final year, many state officials appeared to believe that the institution would always be necessary for some people.  In the end, New Hampshire elected to demonstrate the opposite.  Even the most “medically fragile” people are now living and thriving in small, homelike settings.  This achievement has an important place in the history of developmental disabilities.  New Hampshire was the first state to show that communities can support all people, regardless of the severity of their disabilities.

I am continuing to perform studies and evaluations in New Hampshire to the present day.  I see compelling evidence that even the most “difficult” people have been afforded the necessary supports in community settings.  The overall evaluation of my 16 years of research in New Hampshire can only be that all people can, and do, live in the community, and that their lives are indisputably far better on the average.  Case studies, “stories,” and living examples are readily available.  I would recommend contacting Mr. Donald Shumway, current director of the human services agency, for further information.

In New Jersey, the Johnstone Training and Research Center closed in 1992.  I headed a 3 year project to track the former residents and the qualities of their lives.  Two thirds of the Johnstone people went to other state developmental centers (institutions).  One third went to community settings.  The conclusions of the research were that both groups had experienced improvements in many dimensions of quality, but the movers to community settings were by far the most improved.  Moreover, the care for the people who moved to other institutions wound up costing more than Johnstone, while the care for people who moved to community homes cost less than Johnstone.  I wrote that “Future closure planning should, according to this and past research, employ deinstitutionalization rather than reinstitutionalization as its primary strategy” (Conroy & Seiders, 1994).

Since 1990, I have been working on a statewide quality assurance system in Oklahoma that covers 3,700 people -- everyone receiving intensive services in the state.  Among these 3,700 people are approximately 1,000 Class Members in the Homeward Bound v. Hissom Memorial Center litigation and consent agreement.  In 1995, I found and reported that the outcomes for the 520 “Focus Class Members” (those who lived at Hissom on or after May 2, 1985) were in many ways the strongest and most positive I had ever studied (Conroy, 1996).  These extraordinarily positive outcomes were associated with a “new” kind of community living arrangement.  Nearly all of the Focus Class Members went from Hissom, not into “group homes,” but rather into individually designed “supported living” situations.  Practically no one had more than two roommates, and most had only one or none.  This method of deinstitutionalization was unique in America.  It also turned out to be the most successful.  A summary table of the outcome results is shown below.

Hissom Outcomes Study Summary & Interpretation:

“Are Focus Class Members Better Off Now Than They Were Before?”

The table clearly shows that the people who left Hissom are better off in nearly every way measured, and worse of in no dimension.

More recently, we surveyed the families of these same people by mail (Conroy, 1999).  Just as in the other studies, families told us that their feelings about community living had changed.

Oklahoma Outcomes Study of Hissom Class Members:

Family Feelings About Community Living, “At First” and “Now”

 The graph shows that only a handful of these 301 families are now opposed to community living for their relatives (a total of 3, to be exact).  We also asked these families to rate their relatives’ qualities of life “Then” and “Now,” with “Then” referring to the time when they lived at the Hissom institution.  The results were the most dramatic we had yet seen in any of our studies, and they are depicted in the following graph.

Each one of the differences between perceived quality “Then” and “Now” was statistically significant, and also very large in magnitude.  This was powerful evidence of the eventual satisfaction experienced by families of people who moved from institutions to community homes.

I have also been tracking the well-being of more than 1,200 people with dual diagnosis in North Carolina.  These members of the Thomas S. class are people who had mental retardation, but also had either a psychiatric diagnosis or a brush with the law that resulted in placement into a psychiatric facility.  Hundreds of the Thomas S. class members have moved to new community homes.  Despite widespread misgivings about their potential behavior problems, they are doing extremely well in their new community homes, with no evidence of criminal activity or “recidivism.”  In fact, they have made such progress that I am now working with the state to suggest that the Court’s supervision might be relaxed.  The Thomas S. class members are more integrated, more satisfied, better served, more independent, receiving less medications, and much more likely to be working and earning money.  This project has strongly suggested that serious behavior “problems,” even criminal histories, need not prevent people from flourishing in well supervised community homes.  The placement process was so successful that the judge recently dismissed his own Order, concluding that all the original goals of the Thomas S. action had been achieved.

My company was selected to track the process of closing the Winfield State Hospital in Kansas.  For the 200 people who moved from institution to community in that effort, we measured qualities of life before and after the move.  The following table summarizes the results of our 2 years of study.

Verbal Summary of Kansas Outcomes at Year One  

This table revealed a strong pattern of positive outcomes, tempered by two that were interpreted as negative:  a decrease in the number of hours per week of formal day program activity, and a drop in the frequency of visits to a dentist.  Although many of these people moved into large 8 person group homes, their outcomes were still positive.  These outcomes were not as dramatic as those seen in Oklahoma, but nevertheless, we were able to conclude with confidence that these people were “better off” in their new community homes than they had been at the Winfield institution.  Moreover, there was no perceived decrement in the quality of health care.

For the past year, we have been tracking the outcomes of closing two state institutions in Indiana, which affected approximately 300 people.  Even at 6 months post-movement, when many elements of the community service system were still in flux, the people were found to be “better off” in most ways.

Statistical Summary of Indiana Outcomes at Six Months

The table shows three negative findings.  Two of them (challenging behavior and earnings) were interpreted as temporary, and are expected to move in a positive direction as the system becomes more mature.  All of the other changes experienced by the 191 people represented in the table were positive.  These Movers are indeed “better off,” even at 6 months post-placement, and the most reasonable hypothesis is that the qualities of their lives will show further improvement in the years to come.

The California Quality Tracking Project

I am currently heading a project that is tracking the quality of life outcomes experienced by more than 2,300 people in California who have been affected by the Coffelt settlement.  Thus far, the project has resulted in 20 reports, 17 of them intended for public distribution.  These reports present data on the well-being of people who have moved out of California’s institutions since the settlement (e.g., Conroy & Seiders 1995a and 1995b; Conroy & Seiders 1996; Conroy & Seiders, 1998; Conroy 1996).  These analyses employed multiple research designs, including pre-post, matched comparison, nonequivalent comparison groups with analysis of covariance, and family surveys.

A complete summary of the 17 public reports is provided following this section.  The summaries are intended to reflect the breadth of measures, research designs, and methodologies employed.  The summaries show a compelling tendency to reach the same conclusions from all the designs and methodologies:  deinstitutionalization in California has had its problems, but they have been far outweighed by the benefits to the people in terms of the qualities of their lives, their satisfaction, their families’ satisfaction.  In other words, these people are “better off” in the community than they were in Developmental Centers.

All of this work was based on face to face visits with the people and their caregivers, during which we collected our battery of reliable measures of qualities of life and qualities of care.  Each year, we visited a sample of the “Movers” (the people who moved from developmental centers to community homes).  We also annually surveyed every known close relative or guardian.

The table below shows that, in the work performed up until December of 1998, we had conducted 4,051 visits with Movers.  The table shows the pattern of our individual visits over the years.  The abbreviation CTG refers to the “Community Target Group,” those who were originally living with relatives, but encountered difficulty and/or a need for additional supports.  The “Movers” are the people who moved from Developmental Centers to community homes.  The “Stayers” are people who continued to live in Developmental Centers.

Our average visit to each person took 77 minutes at the person’s home.  This work offers a very large database for determining whether movement from institutions to community homes was “good” or “bad” for these people.  It is important to state clearly, however, that our work has sought the answer to our question “Are people better off?” in an aggregate manner.  That is, we were attempting to find out if the average experience was positive. 

Our findings have been clear, definitive, and compelling.  But that does not mean that every person’s experience was positive.  In fact, we know of many that were not.  Part of our role in California has been to immediately report back to the Department of Developmental Services when we find a person who is not doing well, or not receiving the services he or she is entitled to.  (This aspect of the Project is called the Quality Feedback Summary, or “rapid feedback” system.)  This work continues today.

The following Table of Outcomes is from our Final Report of the first 5 years of our monitoring.

Results of the Coffelt Quality Tracking Project

1,125 “Movers,” 1993 to 1998

A brief verbal summary in paragraph format is provided below.

1.      Positive Outcomes:  California’s Coffelt class members are better off because of the settlement of the lawsuit.  More than 2,300 people have moved from institution to community living, and their lives have on the average been enriched measurably and significantly in terms of self-care abilities, appropriate social behavior, opportunities for choice making by the person and unpaid allies, integration, services delivered through the individual planning process, hours of day program per week, attainment of individual goals, individualized treatment, physical quality of their home environments, consumer satisfaction, and family satisfaction.

2.      Negative Outcomes:  Fewer class members have paid jobs in the community than they did while living in Developmental Centers, and they are on the average earning less money from paid work than they had while living in Developmental Centers.  Moreover, the prevalence of sedative and psychotropic medication utilization has increased slightly since moving to the community.  These are the only negative outcomes detected during the four years of this study.

3.      Balance:  The balance of positive and negative outcomes is weighted heavily toward the positive.

4.      Cost:  The total public cost of supporting people in California’s community service system is much lower than the Developmental Center cost.  In 1996, community costs averaged about $55,000 per person per year, while Developmental Center costs averaged about $100,000.  Both costs are higher now, but the difference persists.  These costs were computed for similar people, and the difference definitely cannot be explained by differences in the people served in institution and community.

5.      Conclusion:  The ultimate conclusion is inescapable:  The Coffelt settlement has brought about enormous social benefits to people with mental retardation.  This did not require extra money; it was done at much lower cost than the Developmental Centers would have spent.

6.      Policy:  The movement of people out of institutions and into small integrated community homes should continue.

The overall conclusion of the years of the Quality Tracking Project is that class members’ lives have been significantly enriched in nearly all of the measured dimensions of quality.  Improvements have been documented in independence, productivity, integration, self-control of challenging behavior, satisfaction, self-determination, achievement of individual goals, physical quality of the homes, individualized treatment within the homes, and family perceptions of quality of life.  Very few class members, and just as few families, would like to “go back” to Developmental Centers.  All this has been accomplished with far fewer public dollars than were required in Developmental Centers.  The data from this project imply that the proper targets for future quality enhancement activity are medication use, expansion of support models in directions other than the ICF/MR funding stream, employment, and choicemaking/self-determination.

Obviously, the evidence from more than 4,000 personal visits and the objective scientific assessments leads to the conclusion that the Coffelt Movers’ lives have been significantly enriched.  There can be little debate about this conclusion, because there is simply no credible scientific evidence to the contrary.

There will, of course, be “horror stories” in community service systems of the kind reported by the San Francisco Chronicle.  But for every “horror story,” the scientific evidence supports a strong inference that there are many more “success stories.”

I believe that it is a dangerous error to permit unscientific sensationalism to guide public policy.  The simple fact of the matter is that the California deinstitutionalization has been a great success for the great majority of the people involved.

Summary of the 17 Reports from the California Quality Tracking Project

This is a summary of the 17 formal reports we have produced from 1994 to 1998 as part of the Coffelt Quality Tracking Project.  Three of these are in the process of publication in academic journals, and two have been accepted.

(Report Number 1 was a status report on field data collection activities, and contained no data or other information on quality of life among the Coffelt class members.)

Report Number 2, Quality of Life Among Institutionalized and Deinstitutionalized People in California: Preliminary Findings, 1994. was submitted in February, 1995. It detailed a matched comparison design of 57 Movers and 57 Stayers. Findings showed that the Movers expressed higher levels of satisfaction, perceived that their lives had improved, experienced more integration, active goals, progress, and services. Both groups had high quality of health care and similar utilization of medications.

Report Number 3, Quality of Life Among Institutionalized and Deinstitutionalized People in California: Intermediate Findings, 1994-1995. was submitted in April, 1995. It extended the matched comparison design to larger groups, 118 Movers and 118 Stayers. The findings were entirely consistent with those of Report Number 2.  The Movers were far more integrated, were much more satisfied with their homes, believed their lives had sharply improved, received larger quantities and varieties of services, and lived in places that were measurably more normalized and physically pleasant.  However, their opportunities to make choices were no greater than for Stayers, and the Movers were more likely to be taking neuroleptic medications.  The total public cost of supporting the Movers was about $54,000 per person per year, while the cost for a Stayer was about $92,000.  Together, Reports 2 and 3 provided extremely strong evidence of the cost-effectiveness of community living in California.  Report Number 3 was reformatted for submission to a peer-reviewed journal, and is now in the review process.  Accepted 10/98.

(Report Number 4 was a collection of graphs, called a Chartbook, intended for internal DDS discussion purposes only.  It was not a project deliverable, and was produced at the request of the project officer to stimulate internal consideration of the difference among the Developmental Centers.)

Report Number 5, Coffelt Community Target Group Class Members: Results of the 1994-95 Round of Visits and Interviews, was submitted in September, 1995. It was a qualitative, formative analysis of 21 of the 26 Community Target Group (CTG) members.  These individuals were living with relatives but needed out of home placements and supports.  The study was intended to guide future interventions and actions.  According to the analysis, the CTG members had very positive experiences as a result of their movement into community residences. Further, their families believed that they and their relatives were better off because of the interventions they experienced.

Report Number 6, Patterns of Community Placement: The First 15 Months of the Coffelt Settlement was submitted in October, 1995. It described people who moved from Developmental Centers to community living during the first 15 months (4/93-6/94) of implementation of the Coffelt Settlement Agreement.  Representative samples of Movers and Stayers were drawn and visited.  Comparisons of qualities of life were performed for 246 Movers and 828 Stayers, and a post-only family survey was used to elicit input from family members of the Movers. The outcome indicators revealed that people who moved were clearly better off in their new community homes. Additionally, families of the Movers perceived significant improvements. Family members’ approval of community living more than doubled.

Report Number 7, Reliability of the Personal Life Quality Protocol, was submitted in December, 1995. It supported the inference that the Coffelt project data are generally being collected accurately, objectively, and reliably.  Report 7 has been reformatted for submission to peer-reviewed journals, split into two separate manuscripts, and both are now in the review process.

Report Number 8, Patterns of Community Placement II: The First 27 Months of the Coffelt Settlement was submitted in February, 1996. It contained analyses of: quality of life for nonequivalent comparison groups of Movers and Stayers; a longitudinal pre-post analysis of changes in quality of life for 34 people who moved into community settings; descriptive data of mental health and crisis intervention supports; reasons for 13 returns to Developmental Centers; features and quality of supported living; mortality; and costs.  Findings indicated that 438 Movers were better off in many ways, including being in settings of higher physical quality, being more integrated, and being more satisfied with their living arrangements and staff. Seventy seven percent of those who could respond noted that they felt good or very good about living in their current community residence. Statistically significant improvements were reported in qualities of life such as comfort, happiness, food, health, and safety.  However, concerns were raised with choicemaking, health care, and medications.

The pre-post test results indicated that 34 people who moved into community living experienced an improved quality of life in the areas of health, running their own lives, family relationships, seeing friends, getting out, happiness, comfort, and safety. Additional, significant improvements were noted in adaptive behavior, challenging behavior, quantity of services received, progress on individual goals, and  level of integration. On the other hand, self-determination and individualized treatment did not increase, and Movers received antipsychotic drugs at a higher rate than that of the Stayers.

Twenty eight people who moved into supported living situations reflected increases in self-determination and quality, above that of other community settings. On another note, cost data showed that community care in California costs about half as much as institutional care. In several other deinstitutionalization studies, community costs were about 75% of institutional costs, suggesting that California’s community reimbursement rates are relatively low. Concerning mortality rates, preliminary data indicated that movement to community did not increase mortality among class members when compared to the statistical expectation for large congregate care settings.

Report Number 9, Impacts of the Coffelt Settlement on Community Target Group Members in 1995-96, was submitted in May, 1996. It provided a quantitative description of the members of the Community Target Group (CTG), and a qualitative sense of what happened to the CTG group during the second full year of implementation of the Coffelt Agreement. In general, the group believed their qualities of life had improved in 10 of 10 areas in a one year period. In fact, the CTG group experienced more self-determination than the Movers did. They were more likely to have choices in their new homes, and to have choices about daily activities. CTG members were better off because of their involvement with the Coffelt Agreement, and much better off than they would have been if admitted to Developmental Centers.

     Report Number 10, Qualities of Life Among Coffelt Class Members who Moved from Developmental Centers to Community Homes, 1993-1995, was submitted in September, 1996. The Report compared qualities of life of 455 Movers and 395 Stayers using analysis of covariance.  Consistent with other Reports (Reports 2, 3, & 8), the qualities of life were considerably higher among the Movers, even while controlling for their differences from the Stayers.  This report was submitted to a journal for peer review, and has been accepted:  Conroy, J., & Elks, M. (In Press).  Tracking qualities of life during deinstitutionalization:  A covariance study.  Education and Training in Mental Retardation and Developmental Disabilities.

Report Number 11, Results of the 1995-96 Coffelt Family Survey, was submitted in October, 1996. Completed surveys from 48% of the Movers’ families were analyzed to determine if they believed the move from Developmental Center to community was a good thing for their relative. The ratings showed a clear and strong belief that community placement was a good thing. Many families changed their minds about opposing community placement. A large majority of families were pleased with community supports, wanted them to continue, and would not think of returning their relatives to Developmental Centers.  Report Number 11 was reformatted for submission to a peer-reviewed journal, is now in the process of consideration for publication.

Report Number 12, Patterns of Community Placement III:  The Third Year of Coffelt Implementation, presented a series of analyses of the qualities of life experienced by class members who left Developmental Centers.  Two thirds of the people who moved carried the “severe” or “profound” mental retardation label.  Nevertheless, they became significantly more independent, sharply reduced their challenging behaviors, they received even more services and supports than they did in the DCs, their closest caregivers reported far more “progress toward goals in the past year” than had been the case in the DCs, they became much more integrated into the mainstream of American life in terms of outings, and, for those who could and would communicate with our Visitors, reported themselves to be much happier in the community than they had been at the DC.

In this report, we also examined supported living, presented an analysis of the Family Survey, and revisited the comparative costs issue.  Supported living was associated with increased choice, individualization, and self-determination than other types of setting.  The family survey revealed very strong satisfaction with community living, coupled with the perception that their relatives’ lives had improved in 10 out of 10 areas of quality.  Many families had undergone a remarkable change of heart about institutional versus community living for their relatives.  On the issue of costs, we found again that community supports were only 54% of the DC costs.

There were problems and cautions noted in the report.  In the community, psychotropic and sedative medications tended to be overused.  There was little emphasis in the community on supported and competitive employment.  The class members on the average had not increased their opportunities to make their own life choices, even with the assistance of unpaid friends and relatives.  Nearly all decisions were still being made by professionals and paid staff.  True community connections had not yet emerged for many people.  Health care in the community was also problematic, because it was rated as harder to find and not as good as in the DCs.  Finally, although the overall benefits were large, a number of people reported loneliness in their new community homes.

          Report Number 13, Mental Health and Crisis Services for Coffelt Class Members, 1996-1997, from April 1997, examined mental health, crisis intervention, and medical emergency supports among 774 class members in their community homes.  The Coffelt settlement mandates capacity building among the Regional Centers, so that crises can be handled effectively within the community support system.  Mental health supports were rendered to 35% of our sample, and of them 22% received medications monitoring, 11% received other supports, and 2% were not sure what the service had been.  Recipients of such supports were higher in adaptive behavior, and displayed more challenging behavior, than the average class member.  Only 28 people were reported to be in need of, but not receiving, one or more mental health services or supports, usually counseling.  There were 24 people who experienced a crisis episode in the past year that involved relocation of the person from his/her residence.  Nearly three fourths of these events involved violence or uncontrolled behavior.  After hours phone calls to Regional Centers received the highest satisfaction ratings, and emergency rooms the lowest.

Report Number 14, Results of the 1996-1997 Coffelt Family Survey (April 1997), provided the final results of the 1996-1997 Family Survey.  The 218 completed surveys made up a 53% response rate from a single mailing, which was quite acceptable.  Families perceived positive changes in every one of 14 distinct areas of quality of life.  The largest quality enhancements were reported in "Privacy,"  "Happiness," “Comfort,” "Overall Quality of Life," and "Getting Out and Getting Around."  These improvements did not vary by level of disability, implying that people with severe impairments were perceived to have benefited just as much as others.  Families also reported that they had been considerably more opposed to community placement, when they first heard about it, than they were “now,” at the time of the survey.  This meant that many families have changed their minds, and their opposition has diminished sharply.  Of the 203 Movers’ families surveyed, only 7 now say they are "Strongly Against" community living for their relatives.  Only 19 say they would prefer for their relatives to move back to a Developmental Center.

We also presented the verbatim responses of the 203 families to our four open-ended questions.  The 1996-1997 Family Survey findings left little room for doubt:  families, although many were originally apprehensive, are generally very pleased with community supports, want them to continue, and would not think of returning their relatives to Developmental Centers.

Report Number 15, Impacts of the Coffelt Settlement on Community Target Group Members in 1996-1997, extended the findings of Report Number 9 to a total of 66 CTG members we visited in this round.  The results confirmed and strengthened the conclusions of Report 9.  CTG members had been helped greatly by the Coffelt interventions, believed their qualities of life had improved, and were clearly better off than they would have been if they had gone into DCs.

(Report Number 16 was an internal working document which contained individual class member names.  It was therefore not appropriate for dissemination.  Its purpose was to permit a working group to view the utility of our newly designed Quality Feedback System data.)

Report Number 17, Patterns of Community Placement IV: The Fourth Year of Coffelt Implementation was submitted in January, 1998.  This report contained a pre-post analysis of changes of quality of life for 91 people who moved into community settings, and quality of life and satisfaction for nonequivalent comparison groups of Movers and Stayers.  In this report, we also examined people in supported living, the issue of quality in small ICFs/MR versus Waiver Homes, and an analysis of the 1997-98 Family Survey. 

The pre-post results indicated that 91 people who moved into community living experienced significant improvement in adaptive behavior, challenging behavior, quantity of services received, progress on individual goals, level of integration, and self determination, individualized treatment, normalization, satisfaction.  Because the Pre-Post design is the strongest one among the six that COA has used during the course of this work, these findings were very important.  Combined with the parallel findings from the other research methodologies, we are justified in having high confidence in their veracity.

Findings among 1,073 Movers indicate that they were better off in many ways than the Stayers.  The Movers experienced significant increases in all 14 areas of quality of life that were measured on the Quality of Life Changes scale.  The Movers were somewhat higher in self-care abilities than the Stayers and displayed somewhat less challenging behavior.  In addition, the Movers reside in settings that are of higher physical quality, feel more satisfied with living arrangements and staff.  Also, 78% of the Movers who could respond indicated that they felt good or very good about living in their current community home. 

Analysis of people in supported living settings showed that these settings were more conducive to choice making, integration, and self-determination.  The supported living model is also being used to support people with major behavioral challenges.

The comparison of similar groups living in ICF/MR settings and Waiver settings provided strong evidence that Coffelt class members who are Waiver recipients are enjoying program qualities and outcomes that are significantly superior to those experienced by similar people living in Intermediate Care Facilities (ICFs/MR).

The 1997-98 Family Survey showed that families perceived their relative’s lives had improved significantly in 14 out of 14 areas of quality.  The families expressed high satisfaction; 76% indicated that they felt happy or very happy with their relatives’ community homes.

Selected portions of Report 17 were reformatted and submitted for publication in an academic journal in the summer of 1998.

Report Number 18, Selected Findings of the Coffelt Quality Tracking Project was submitted in June, 1998 and examined several topics of interest among the 1215 class members we visited this year.  The first topic of interest involved mental health, crisis intervention, and medical emergency supports among 1159 class members in their community homes.  Mental health supports were delivered to 26% of our sample.  Simple medications monitoring was provided to 12%, and services and supports other than or in addition to medications monitoring were provided to 5%.  Nine percent of the respondents were reported to receive both medications monitoring as well as some other types of services or supports.  Recipients of such supports were higher in adaptive behavior, and displayed more challenging behavior, than the average class member.  Only 22 people were reported to be in need of, but not receiving, one or more mental health services or supports.  Mental health counseling and therapy were the most common unmet needs reported. 

There were 49 people who experienced a crisis episode in the past year that involved relocation of the person from his/her residence.  Supplemental supports received the highest satisfaction ratings, and incarceration the lowest.

The second topic of interest concerned the well being of the Coffelt class members known as the Community Target Group (CTG).  In general, the group believed their qualities of life had improved significantly in 12 of 13 areas in a one year period. In fact, the CTG group experienced more self-determination than the Movers did.  Staff report high levels of job satisfaction both in general and working directly with the CTG members.  The analysis of the CTG members provides compelling evidence that they are 1) better off than they would have been without the Coffelt intervention and 2) much better off than they would have been if they were living in Developmental Centers.

Report 18 also examined the class members who now live in large congregate settings, plus the situations of class members under age 18.

Report Number 19, The Coffelt Quality Tracking Project: The Results of Five Years of Movement From Institution to Community, was intended to be a summary document for wide distribution.  It contained a succinct Executive Summary, and was written in a style for broad audiences.  It contained no new analyses beyond those presented in prior reports.  This was the “final report” of the first four years of the Tracking Project.

 Report Number 20, Patterns of Coffelt Placement Practice and Indicators of System-Wide Quality, was a description and summary of elements of individual and systemic feedback loops that we hoped would be ongoing in order to protect peoples’ rights and entitlements.  First, we broke down quality indicators by Regional Center to test for variations in quality.  We found substantial variations in the characteristics of the class members across the RCs (age, percentage minority, challenging behavior, and adaptive behavior).  Some RCs focused on bringing only the most capable people out of Developmental Centers, while other RCs brought out people with very limited functional abilities.  For example, the “percent labeled profound” among Coffelt Movers in the RCs ranged from 16% to 95%.  These variations make direct comparisons of quality indicators across the RCs difficult.  The comparisons can be made, but only with great care and caution.  We demonstrated a method for fair comparison of RCs in this Report.

This Report also summarized the individual information we provided to DDS in our Quality Feedback System.  We produced individual class member “report cards” in February of 1998.  We provided one “report card” for each of the 1,215 Coffelt class member we visited.  On these “report cards” we included both positive and negative situations, such as having gained a great deal in independence skills in the past year (positive) or not having an Individual Plan (negative).  These individual “report cards” were distributed to the 21 RCs with a request for feedback about actions taken to remedy undesirable situations or to congratulate consumers and providers for excellence.

 Summary Statement on the Empirical Evidence on Deinstitutionalization

 In all of the studies summarized above, we have found that the Movers, as in other studies, have experienced major gains in many measures of quality of life.  A major study conducted by Berkeley Planning Associates has replicated and strongly confirmed our results (BPA, 1998).  We have also found that community care in California costs a great deal less, even for similar people, than institutional care.  The cost analyses include consideration of transportation, day programs, health care, and other relevant “hidden” costs.  However, I have consistently raised concerns about the overuse of psychotropics, the lack of attention to vocational programs, and the serious underfunding, of community programs.