Ann R. Poindexter, M.D. F.A.A.P.
After more than 40 years of experience in the field of intellectual disability, particularly with individuals with behavioral/psychiatric problems, Im sure that Ive made many mistakes, but so has the rest of the field in general. A careful assessment of the history of services for people with developmental disabilities and significant behavioral/psychiatric problems shows that mistakes have been made which have involved philosophical, systems, management/administration, and clinical areas. Many, if not most, of these mistakes were made unintentionally, but the resulting problems are significantand solvable. The first major mistake, beginning many years ago, was (is) to blame everyones problems on a single, simple factor. As an example, for years experts taught that autism was due to problems with mothering. More recently some people have blamed autism on childhood immunizations, although this theory is not supported by any careful scientific examination. All sorts of problems have been blamed on the setting where people liveif they just move out into the community from institutions, everything will be alright. The solution to this first mistake is to recognize the complexity of affected individuals, particularly the complexity and multiplicity of etiology of their problems, then work together with them to help solve these problems. More than 15 years ago the late Robert Sovner noted that a given behavior may be due to: (a) learned maladaptive behavior; (b) central nervous system dysfunction; (c) pervasive developmental disorder; (d) classic psychiatric disorder; and/or (e) medical/medication issues (1990). These are by no means mutually exclusive.
The second mistake that many in the field of intellectual/developmental disability have made is to decide that if we just ignore problems, the problems will go away, saying lets not be too negative. The solution for this mistake is the same as for the first; recognize the complexity and work together for solutions.
In a third mistake, we have mis-assessed the dangerousness of individuals; either over-assessed it on one extreme, or actually denied the significant degree of dangerousness of the very few individuals who really are dangerous. To prevent this mistake we should objectively assess dangerousness with a goal of providing the least restrictive settings compatible with community safety (Mikkelsen & Stelk, 1999). An example of this problem is placing individuals who are predatory pedophiles in living situations near elementary schools, because that is where they choose to live!
Fourth, we have dumped our problems on others, often on Friday afternoon, with inadequate or even somewhat fraudulent, deliberately incomplete information. The solution to this mistake is to work together honestly to serve people with complex problems.
Fifth, a major mistake has been failure of cooperation between our systems, particularly between the intellectual disability and mental health systems. In relation to money, the tendency has been to say mine-mine, in relation to problems, yours-yours. Whatever happened to ours? The solution is to work together honestly and openly, as noted above.
Sixth, weve done in general a really poor job of training direct support staff, when weve trained at all, weve trained on what we think is important, and havent asked them what they need to know. The answer to this problem is to ask staff what they need, and then provide that for them.
In a seventh mistake, we have in the past thrown medication at behavior, without appropriate diagnostic consideration, and this practice still continues. We get into the habit of diagnosis of the month and/or drug of the month, with the former often dependent on the latter, particularly if the latter is a new and heavily advertised drug. Weve used very tiny, spit-in-the-ocean dosages or quite excessive dosages, without really working toward rational prescribing. Weve also missed drug reactions of all sorts, which we would probably have diagnosed if people could communicate with us, or if we had asked them or their close associates, or at least if we had looked for the reactions. The solution for this (these) mistake(s) is to carefully assess diagnostically (American Psychiatric Association, 2000; National Association for the Dually Diagnosed, 2007) and rationally prescribe as appropriate, always remembering to look for drug reactions and interactions. Some professionals in the field still believe that medication should be only used as a last resort, but we ethically should not deprive individuals of medication treatment just because they have intellectual disabilities.
Eighth, we have not kept long-term data on the people we serve, or if we have generated these data, they have often gone into the great data base in the sky. The answers to many of the complex problems we as clinicians see are usually in the history. Unfortunately, many of the computerized data systems currently in use are WOMBAT, a Waste Of Money, Brains, And Time (Hwang, 2002). A major solution is to go back and look at all available historic data for a given individual, summarize these data carefully, put that summary on the individuals chart, and never take it off, except to update as appropriate. The only solutions to problems of collecting data in meaningful ways for groups of people is to demand appropriate systemspeople who will be using the data, particularly for research purposes, should be involved in determining the type of systems used.
Ninth, weve carried personal choice to extremes that on occasion have been quite dangerous, and often very close to being really dumb. Weve refused to restrain individuals, or have told staff they arent allowed to restrain individuals, even though they are an immediate danger to themselves or others. Weve been told we cant prevent people we serve from being involved in the illegal drug culture, because thats their choice. Weve refused to provide appropriate services for individuals with significant health problems such as Prader-Willi syndrome, because its their choice to kill themselves with over-eating. We often talk a good game about personal choice, but weve not really listenedto the people we serve and/or those weve hired to help serve them. The solution to these issues is to remember that we are serving people and not philosophical ideas.
The tenth, and very serious mistake, is that weve often lost sight of the fact that human service organizations serve human beings, and the individuals providing the services are also human beings. The solution to this mistake is probably related to the other solutions; we can truly help people with disabilities lead more fulfilling lives if we respect their humanity and all their strengths, but also realistically assess the areas in which they need supports (American Association on Mental Retardation, 2002).
When someone with intellectual/developmental disability and behavioral/psychiatric problems is not doing well, a careful team-based approach can almost always improve their condition (Kolstoe, 1994). First, the diagnosis should be re-evaluated. No matter who made the original diagnosis, the history should by reviewed again, including all obtainable information. The history should be examined longitudinally, not just as individual snapshots. All past and current medical history should be reviewed thoroughly, particularly drug usage, both psychotropic and other. Second, a complete functional analysis of the behavior should be made, starting all over again, no matter who did the earlier analyses. Third, current experts should be re-energized. The involved individual should be asked first, then the direct contact staff. New information gleaned as above should be provided to regular consultants. Fourth, consideration should be made of utilizing outside, new consultants, usually utilizing networkingbe e-mail, phone, mail, or in person. We also need to remember that many of the problems we deal with are rare, and no one has a large series of any of these, no matter what they say. Fifth, we must never give up! We can certainly learn from interventions that arent successful, these interventions arent necessarily a failure, since they may help us develop a better intervention the next time.
American Association on Mental Retardation. (2002). Mental retardation: Definition, classification, and systems of supports (10th ed.). Washington, DC: Author.
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text revision). Washington, DC: Author.
Hwant, S. L. (2002, May 15). It was a WOMBAT for the meatware, but it was a good sell. Wall Street Journal, p. B1.
Kolstoe, P. D. (1994). Personal communication.
Mikkelsen, E. J. & Stelk, W. J. (1999). Criminal offenders with mental retardation: Risk assessment and the continuum of community-based treatment programs. Kingston, NY: NADD Press.
National Association for the Dually Diagnosed. (2007). Diagnostic manual: Intellectual Disability. Kingston, NY: NADD Press.