WINNING THE CHALLENGE
Positive Choices and Positive Outcomes In Private Rehabilitation With
Persons With A Dual Diagnosis

Jerry Allen & Jon Fortune
Wyoming Division of Developmental Disabilities
Cheyenne, Wyoming

John Holderegger
Mountain Regional Services, Inc. Evanston, Wyoming

Shelly McDonald
Developmental Disability Management Services
Memphis, Tennessee

Introduction

Throughout the decade of the 90's states have been challenged to downsize large institutions and create a wide range of community services for individuals who spent their entire lives hidden behind the forbidding walls of psychiatric hospitals, ICFs/MR or convalescent homes. A great deal of ink has been devoted to the topic yet the literature is totally devoid of any examination of cost effectiveness or programmatic success of the most highly visible subgroup within the population of individuals with developmental disabilities who have been integrated into community settings. Adults with mental retardation and mental illness have traditionally been a very expensive and politically volatile group to serve. Many community programs, lacking psychology and staff training resources, have consistently shied away from such clients for a multitude of logical reasons yet thousands of individuals with psychiatric/behavioral and cognitive disorders are participating successfully in their communities.

This paper is an attempt to find some of those people and to tell their story. The senior author sought to answer four questions in conducting this examination. The most obvious was to determine if individuals with long histories of institutionalization and programmatic failure were being successfully served in community programs for the developmentally disabled. A second question was this: at what cost are these individuals being maintained in these programs? The third point of interest, given the national dialogue concerning "self-determination," was to find
if these individuals were able to pursue their choices/interests related to work, independent living and community involvement consistent with the types of positive behavior intervention strategies one would expect in community programs. The final question had to do with the complexities of regional politics and funding stream regulations. Would the fact that an agency operated for profit have any effect on the outcomes? Would the likelihood of positive outcomes be any more likely in the South than in the West? Would any differences be noted between community ICFs/MR and H.C.B. waiver-funded supported living arrangements?

Definitive answers to these questions are yet to be determined. The sample used in this study is too small for sweeping generalizations. One difficulty encountered is the lack of generally applied standarized measures of adaptive functioning across states, or even programs within a single state. Thus, the author accepted the data of reporting programs relative to reduction of serious behaviors without regard to how the data was obtained. Wyoming has employed an annual administration of the Inventory for Client and Agency Planning (ICAP) for all ICF/MR and H.C.B. waiver community clients for several years, so comparisons of institutional and community program success are somewhat possible. So the reader is cautioned to regard the information contained herein for what it is: anecdotal. That said, it may be more important to examine the other outcomes revealed in this examination for increased social relationships, the ability to hold a competitive job and the ability to live in an apartment with minimal supervision tell a story often obscured by behavioral data.

Information concerning cost effectiveness was narrowed to daily rates since such information was readily available and it allows comparison between states. No effort was made to separate daytime services and residential; a future paper hopes to examine this topic. Given the fact that the average cost per person in a large state-operated ICF/MR was $269/day in 1998 for the entire range of developmental disabilities, the results are significant.

Perhaps the most interesting finding of the entire project was not found in an examination of the clients but revealed in the behavior of the provider organizations. All of them found it difficult to boast about their successes; indeed we appear to have conditioned developmental disability managers to divorce programmatic outcomes from the cost of doing business. As funding source managers, the senior authors find this unfortunate because we know that community programs are providing cost effective and clinically sound services to very challenging consumers. It is our hope that this paper, and more comprehensive ones to follow in the future, will encourage such managers to develop better outcome measurement and cost analysis tools so as to better defend their position in an increasingly competitive marketplace faced with limited financial resources.

The Participants

Information on consumers was obtained from six states. Programs managed by a for-profit corporation, Developmental Disability Management Services of Memphis, TN, are highlighted from Tennessee, Alabama, Florida, Wisconsin and Utah. These programs demonstrate great diversity in size and in the population density of the communities they serve. They are evenly divided between ICF/MR and H.C.B. waiver funding and only one has any particular focus on services to individuals with psychiatric disorders. DDMS currently manages 250 individual residential or program sites in nine states.

Wyoming is represented by the nonprofit Mountain Regional Services, Inc., an agency which makes exclusive use of H.C.B. waiver funding to serve the state's most challenging adults. MRSI is located in Evanston, Wyoming which is also the site of the only state-operated psychiatric hospital. Though there are fifteen private habilitation provider organizations in the state the Wyoming Division of Developmental Disabilities has financially supported MRSI to assist them in developing a program specifically designed to meet the needs of individuals with mental retardation and mental illness. In addition to their residential capability MRSI has created a subsidiary, Cornerstone, which provides comprehensive on-site evaluations to other Wyoming providers as well as weekly psychological consultations and training sessions via compressed video television broadcasts in cooperation with the University of Wyoming and the state's community colleges. The availability of psychological, neuropsychological and psycho-pharmacology expertise at Cornerstone has allowed many community programs to successfully maintain challenging clients in very small communities lacking such resources.

Cost Effectiveness and Positive Behavioral Outcomes

Profiles were obtained on twenty-three adults who ranged in age from 20 to 63. Eleven of the subjects are male; all but three of the total group have lived in their current placement less than six years. Each one of these individuals had been institutionalized in a large facility for the mentally retarded or the mentally ill, often since childhood. Many have spent significant time in both while two of them have resided in convalescent homes in addition to state institutions. Ten of the subjects reside in private ICFs/MR; the remaining thirteen are funded through the H.C.B. waiver program. Most notable is the fact that fifteen of the individuals (65%) live in a residential setting of six or less persons, remarkable given their long histories of self injury, aggression, elopement and other serious behavioral difficulties. Specifics on all of the individuals included can be found in a table at the end of the paper.

Upon admission to the current program the average daily cost per person was $298 with a range of $100/day (a nursing home) to $970/day ( psychiatric ward in a hospital). For all current services the average daily rate is $169.43, a reduction of 56.8%. The range of daily rates for these services was $49 to $400, both found in waiver-funded agencies. In only one instance was the previous rate lower than that currently received, not surprisingly the one case in which the client was brought out of a nursing home. A second subject commanded the same rate in both placements because she merely transferred from a private ICF/MR group home to a waiver funded residence of comparable composition. The youngest client included in the sample was admitted from her family home and was new to the service system. All of the remaining twenty individuals receive a full array of services for substantially less than was paid in the client's previous placement. The former and present daily rates for all twenty-two adults is shown in Figure 1.

Sixteen members of the sample were admitted to their current provider agency from a state operated ICF/MR or psychiatric hospital. Within these limited numbers Florida demonstrated the highest ICF rate while Wyoming contributed the only transfers from care in a psychiatric facility. It was not surprising to find that the current rates paid to community providers in those two states were also the highest noted in this small sampling of six states.

Of greater interest than basic cost was a determination of the effectiveness of these community programs. Are they successful in reducing serious behaviors and integrating these adults into the mainstream of their communities? The simple answer appears to be a resounding yes! Twelve of the twenty-three subjects were reported to need 1:1 or even 2:1 supervision upon admission. Three of those twelve required as many as four staff to safely manage an assaultive episode.
None of the twenty-three clients has 1:1 supervision today. The most dramatic example in the sample is that of a man 6'3" and 303 pounds who caused permanent injury to a female staff person prior to his current admission, yet three years later shares one staff with two other gentlemen in a comfortable home. He has learned anger management to the point where no aggressive episodes have been recorded in over 15 months while his plan of care during this period has remained a paltry $56,000. The types of serious behaviors which required formal program interventions for the sample are shown in Figure 2.

Figure 2. Number of Subjects Exhibiting Selected Serious Behaviors Upon Admission To Current Program.

The reduction in staff supervision was supported by behavioral data in every instance. The nearly complete disappearance of the most dangerous behavior which led to admission was not unusual in the sample. Reductions of high frequency behaviors such as self-injury, non-compliance and verbal aggression ranged from 59% to 77% in time spans of three years or less. The narratives submitted by the various provider agencies were consistent in identifying five factors which account for the dramatic reductions of problem behaviors. These five factors were:

* client choice: giving the client more control over their lives, including
behavior programs, while providing a structured environment with consistent
rules. Control of some of their own money was mentioned frequently as a
priority of clients.

* trained staff: giving direct care staff the training and support they need to
deal with challenging behaviors.

* personal space: having their own room and their own personal possessions,
as well as living in settings with fewer people, reduced stress and conflict.

* positive reinforcement: used in all of its forms positive strategies and quality
attention were found to be the most powerful tools staff could use.

* community involvement: it did not appear to matter what this entailed, as
long as it involved the preferred activities and individuals of the client.

Specific services which appeared to be necessary in the programmatic efforts of the providers were psychology, psychiatry and nursing. A reduction in the frequency of these services was obvious as the behaviors diminished and the level of independent action increased.

Quality of Life Outcomes

Of greater significance to the consumers themselves are the improvements to their quality of life by movement into community programs. Every state reported at least one individual living in an apartment. Four states reported individuals who were engaged in paid work or active volunteer activity. The senior member of the sample, a 63 year old gentleman in Tennessee, overcame years of institutionalization and a poorly controlled Bipolar disorder to become a prominent member of his hometown church congregation. In fact, only three individuals in the sample did not appear to have an appreciable improvement in their level of community involvement. All three were young adults with significant cognitive impairments and serious self-injurious behaviors including PICA. It is difficult to measure the significance of regaining one's right to privacy through reduced levels of supervision, increasing one's sense of dignity through improved appearance and personal communication skills, or one's sense of self worth by removal of restrictions on freedom of movement or association with one's friends. It can be safely assumed that these benefits have accrued to the individuals included here in some measure. Ten agencies in six states have accepted and met the challenge of some of society's most needy and demanding citizens, and in doing so have given them the skills to participate in a world from which they were previously excluded. No doubt that has brought some smiles to faces that once were anguished, and we need to remember that similar successes are taking place all across the country every day.

Summary

We began our examination by posing several questions and it is encouraging to report that all of them were answered in a positive manner. Though the sample was too small for statistical analysis it would certainly appear that individuals with mental retardation and mental illness are being well served in community settings. It seems clear that such programs are substantially less expensive than their institutional counterparts and that they yield a laudable "bang for the buck." This trend seems to be true regardless of geographical region or demographic characteristics of the city served. The smallest community represented in this paper claims only 9,250 residents. The largest city sampled boasts a population of 628,000. Whether we looked in Dixie, the Heartland or the wild West we found positive individual outcomes in the lives of people unfamiliar with success. The funding source and the legal status of the provider corporation did not appear to have an influence on either the quality or quantity of services though this issue will require further study. Most importantly, the individuals reviewed have demonstrated that it is possible to reduce dangerous behaviors while allowing clients choices in their lives which give them dignity and a measure of independence. We hope that next year we can increase our sample size substantially and paint this picture with a broader brush.

Acknowledgments

The authors wish to thank the managers in the following communities for their contributions and wish them the best in their efforts to serve this very special population: Humboldt, Murfreesboro
and Memphis, Tennessee; Birmingham, Alabama; Milwaukee and Brown Deer, Wisconsin; Ft.Walton Beach, Tallahassee and Pensacola, Florida; Bountiful, Utah; and Evanston, Wyoming.

TABLE 1. Characteristics of the 23 Consumers In This Study

For more information:

Jerry Allen, M.A.
Division of Developmental Disabilities
Herschler Bldg., 1st Floor West
Cheyenne, WY 82002
307-777-5660
Email: jallen@ missc.state.wy.us