My drive home takes me west from Philadelphia along the Pennsylvania Turnpike for approximately 12 miles. On crystal-clear winter evenings I can see a series of twinkling lights that trails across the sky from the horizon to directly overhead. They are definitely not stars: they are too close, and they move. The first time I saw this phenomenon I was puzzled. After a few minutes the simple explanation for this apparition came to me. I was observing the lights of incoming planes in holding patterns near Philadelphia International Airport.
Subsequent to unraveling the mystery of the skies I began to think about the process involved in figuring it out. First, the problem could only present itself after dark. Planes fly in holding patterns all day, but I only saw their running and landing lights when contrasted against the sky. Perhaps more importantly, I needed a construct that allowed me to place the sighting of the planes within some understanding. I needed to know that there are such things as planes and that they fly. I needed to know that they fly at night with lights on, and I needed to know there was a thing called an airport where planes land. I also needed to know about holding patterns. There are probably many more things that I needed to know about, but I think the point is now clear. Before we can begin to understand a relatively simple concept we must be able to place it within a frame of reference.
As we attempt to help people with mental retardation who are also afflicted with mental illness we must also put our approach within a frame of reference - within a context. Singular approaches not only don't assist in revealing the pattern, they may obscure it. Over the last two decades we have come to recognize that persons with mental retardation may also have a mental illness. This is a major change from earlier notions that suggested that people with mental retardation were immune to mental illness or lacked the depth of feeling necessary to experience it. Behavior that might be attributed to mental illness was said to be a function of mental retardation. As anyone who has worked with individuals with mental retardation knows, most can lead healthy emotional lives. We also know that they are subject to the same ups and downs as we are. Recent epidemiological studies indicate that 20 to 33% of persons with mental retardation will suffer from some form of mental illness during their life. This recent conceptual breakthrough has helped some people, but not as many and not as much as had been hoped. My sense is that this is because we have not woven the cloth. This primary recognition is only one thread in the total pattern. We must develop a design that will allow us to weave a cloth.
Values and Principles
Independent of whether the person has mental retardation, mental illness, or both, we must bring to the situation a set of values and principles. They form the foundation of our construct. Services and supports have grown dramatically in the past twenty years. Despite this significant growth, persons with dual diagnosis have seldom been fully supported. Quality must be built in from the onset. The essence of excellent supports is based on the identification of and adherence to a set of values and central principles. Adopting this core of beliefs greatly increases the level of quality. The person with disabilities is worthwhile; that person's power is important. These are the values that must be embraced. We must respect that person's family and commit ourselves to work with them.
The first core principle is informed choice. The essence of true choice comes from having a variety of options. In addition, the individual supported should have an understanding of the ramification of the choices that are being made. The viability of our support may very well hinge on our ability to develop choices for the people we are trying to assist. The second principle is that of empowerment. Empowerment is not something we can grant to individuals with mental retardation and mental illness; rather, it is their inherent right. It is our role to encourage the use of this inherent power and remove any impediments to its use. As a third principle, inclusion is a right of all people. It is important for people with mental retardation and mental illness to be integrated in the community to maximize their opportunity for growth. The fourth principle is that of responsive and flexible support. The supports need to be comprehensive and as intensive as the person needs.
We need to develop a good set of assessment skills if we are to effectively support persons with mental retardation and mental illness. This is our second thread. We need to expand our concept of functional analysis. This expansion needs to be biopsychosocial in breadth and contextual and functional in depth. When assessing people we must be willing to look for the biological causes of behavior before all else. We must ask ourselves if there is a medical reason for what we see. Does the person have a chronic stomach problem that irritates them to the point of aggression? Is there a neuropsychiatric reason why we see the behavior? Is the behavior we see in the person related to pre- or post-seizure time frames? Does the person have an underlying affective disorder? Are they depressed? Is what we are seeing a function of their depression rather than manipulative behavior? Is what we are seeing a function of the individual's medications? These are examples of a biological basis of behavior. We must first look at these causes of behavior, and only then can we investigate psychological and socio-environmental influences. As part of the assessment we must look at how the person communicates with their environment in the here and now. It is important to know the "history" so that we do not commit mistakes over and over again, but we should not let history predict our present evaluation. We should be aware of any psychological vulnerabilities that may be present. Was the person subject to any deprivation or abuse that would make them more vulnerable to an emotional disorder? Have there been any recent or traumatic losses in their lives? Are there any other life events that may increase this person's vulnerability? Finally, we should look at the socio-environmental factors that could be stressors on the person's life. Have we looked at the physical environment in which they spend their days? Do they have friends? Do they like who they live with? Do they get along with the staff? Is the staff able to support the individual? If the person is in a program, does he or she like it? Does it match their needs? All these questions and many more must be answered to perform an accurate assessment and allow us to work together as a support team. To recapitulate -- The assessment must focus on the person and highlight the person's capabilities. It must also search for natural supports and recognize and seek out family cooperation. And, lastly, the assessment must embody hope and be open ended.
Viable Treatment Approach
The treatment approach should reflect the assessment plan. It must be comprehensive in nature and involve all the transdisciplinary players. It must involve the individual and must never lose its consumer focus. Recent advances in medicine and neuropharmacology have brought the team to rely too heavily on the medicines being prescribed. There are substantial gains in the arena of biological psychiatry, but there is no silver bullet that will cure a person independent of all the other components of the support plan. There certainly have been dramatic advances in the medical treatment for mental illness, but these advances require an increased use of effective treatment techniques, not a reduction. Prescription of medications is a science; it is also an art. There is no "one size fits all" treatment that is effective for every person with both mental illness and mental retardation. There still remain many unknown parameters regarding how people process medications, how their ethnicity effects metabolism, and how particular medications interact with different body systems. It is essential that members of the support team be able to communicate effectively with the treating psychiatrist to insure accurate description of symptoms, which in turn ought to assure correct diagnosis and correct prescription of medication. Persons with poor verbal communication skills depend on staff and family to communicate. Positive Approaches and a person-centered philosophy have helped individuals immensely in enjoying a wider life. These, in concert with a biopsychosocial approach, bode well for the people we serve.
Consumer and Staff Oriented
The thrust toward a person-centered orientation has greatly enhanced our ability to support persons with poor reputations in the community. Careful analysis suggests that there is a correlation of staff centering that must also be in place. A recent article published in the AAMR Journal found that the turnover rate for community residential facilities was 65% and 73% for homes serving people with "challenging behaviors." This statistic strongly suggests that although we may want to be consumer focused, we need to come a long way to realize our dream. To provide supports to the people with dual diagnosis we must also provide supports to the staff providing that support. As we carefully analyze challenging behaviors of persons with disabilities, we must just as carefully pay attention to the needs of staff. Most often, direct care staff who are energetic and dedicated are placed with the most challenging persons. What sort of biopsychosocial approach is taken to support these personnel? Do they have the physical ability to handle the most challenging behaviors? Do the administrators offer a planned respite for the staff? Have the most basic needs of staff who are working double shifts in extraordinary situations been met? And, have we considered the maturity level of these personnel? Are they seasoned professionals trained and skilled in dealing with mental illness? Or do they consist of good intentions and concern, and an inability to discern between mental illness and grumpiness? Finally, we must consider the social matters. A 73% turnover rate suggests that challenging behavior flows into the social sphere of the staff. Can residential staff plan special occasions with their families when life runs amuck in the residence? What safeguards and backup systems can we build into programs to assure that challenging behaviors will be handled appropriately, aggressively, and via the correct process?
As science advances with synthesizing specific medications for particular disorders, the rest of the field must reassess and re-design specific staff programs for staff who work with individuals with mental illness and mental retardation who also display challenging behaviors. We must provide competency-based training and consultation along the way. We must pay attention to other psychosocial needs of staff and be prepared to meet them with flexible work schedules, respite assistance and non-blaming perspectives.
Mental illness is an equal-opportunity affliction, and we must be prepared to assist persons with disabilities and staff with precepts of prevention. We must assure that state of the art diagnosis and treatment exists for the person and state of the art administrative support exists for the staff. The field of dual-diagnosis is only 15 years old; it is in its adolescence and many bumps have occurred along the way. At this point, we know that the most effective approach is biopsychosocial in nature and that the overarching paradigm is person-centered.
Diversion and Acute Capacity
Our ability to provide support to individuals in crisis is the final thread in our therapeutic tapestry. This capacity, known as "diversion," involves supporting the person in their own home. This can be accomplished through counseling, support to staff, and, if necessary, by assisting the individual by bringing in more specially trained staff. If this is unsuccessful, one must be able to provide out-of-home respite if this is indicated. All of these resources must be preplanned, and the individual served must be part of this preplanning. Often respite is in response to a crisis. This not only significantly reduces the success of the plan; it may actually increase the person's anxiety and exacerbate the challenging behavior. The goal of these "diversions" must be zero inpatient hospitalizations. If all of this fails, then our goal must be to make the hospitalization as effective as possible while reducing the stay to the minimum. This requires increased expertise on the inpatient side and better capacity on the community side.
The cloth is now woven and we can begin to see the pattern. The best practices for supporting people with dual diagnosis derive from a value system that forms a foundation. We must be willing to spend the time necessary to accurately assess the individual. Don't accept the working diagnosis unless it is working. Much of the information is there if we ask the right questions. Based on an accurate assessment, plan the treatment supports. Do not design the treatment plan and then make the assessment fit the plan. Maintain the focus on the person being supported. Part of that focus must be on the people that are most important to the success of the plan. These are the direct care staff, who must also be supported in order for there to be success. Lastly, the ability to offer respite and a hospital unit must be based on the needs of the individuals we are attempting to serve.
All of this must occur on the provider, county, and region level. There have been some advances in the western part of our state, and of this we should be proud. We need to see growth across the state so that more of our citizens can enjoy fuller and richer lives.
The Pennsylvania Journal on Positive Approaches is published by the Pennsylvania Office of Mental Retardation (OMR) Statewide Training Initiative through Temple University, Institute on Disabilities, University Affiliated Program and Contract Consultants, Inc., 105 Old York Road, New Cumberland, PA 17070. For subscription information, please contact Contract Consultants, Inc. at  774 - 5455. Copyright © 1997 OMR/CCI. All rights reserved.
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