Rehabilitation services for people with mental retardation and psychiatric disabilities: dilemmas and solutions for public policy.
* What are the dimensions and characteristics of the population in need?
* How can they be effectively identified and assessed to guide clinical service?
* What rehabilitative services and supports are beneficial and required in order to enhance their functioning, individually and socially?
* What organization structures, management frameworks, program approaches, and financing means are conducive to effective service?
Although a detailed review of the literature on MRPD relevant to policy is beyond the scope of a single article, some generalizations can be set forth. First, the principal emphases in research and evaluation have been on epidemiology, assessment, and to a lesser degree, programmatic responses. In the realms of epidemiology and assessment substantial progress has been made and there has been an emerging picture of the population and a small number of useful screening and assessment measures have been developed and reported in the international literature.
Unfortunately, program evaluation efforts and applied research on the organization of services have remained embodied by isolated or singular models (e.g., Fletcher, 1988; Reiss, 1988a), which are not linked by common themes (such as by normalization issues, integration concerns, or enhanced functioning, e.g., as discussed by Davidson & Adams, 1989; Jacobson, 1992; Jacobson & Ackerman, 1993) and there are no multi-site cross-sectional or longitudinal studies that sample the diversity of clinical activities or organizational approaches that are now used somewhat speculatively. At the same time it is not evident that effective rehabilitative practices for these people are consistently present in the local mental health sector and can be readily adopted by rehabilitation providers or accessed directly by people with MRPD (Jacobson & Ackerman, 1988). Thus, policy formulation and pragmatic rehabilitation efforts both appear to be hindered at this time by our limited knowledge of effective intervention practices, impacting on the ability of rehabilitation practitioners to directly intervene to support people with MRPD and the ability of specialists and consultants to contribute to these efforts. However, this may be more a matter of appearance than substance, and this issue will be considered in some detail in this article.
Rather than reviewing current progress in assessment and program description, this article will also focus on policy dilemmas stemming from the historical, system, and professional practice context within which MRPD issues are being addressed. These policy dilemmas impact on opportunities available to rehabilitation professionals and other clinicians to address MRPD service and support needs through treatment or program development. A first issue is that people with MRPD represent a diverse subset of the population with developmental disabilities and the profile of this population has considerable overlap with that of other participants in vocational rehabilitation services. Data on the rehabilitation services population with developmental disabilities are presented first, to help provide a policy context.
Next, historical, system, and professional practice factors that have affected the articulation and development of MRPD policy and programs are considered. Then, established literatures in behavior analysis (i.e., behavior modification) and emerging practices in the specialty of psychosocial rehabilitation with evident benefits for people with MRPD are noted. Finally, a rationale for placing a joint emphasis on planned treatment together with lifestyle improvement with immediate policy implications is presented. To the extent possible, clinical and program research is cited to support these standpoints, based on the rationale that evidence of feasibility and utility should inform policy formulation.
In brief, the policy analysis presented in this article avers that behavioral health and social adjustment needs of people with MRPD are probably underaddressed, underassessed, and undertreated in rehabilitation settings, but that the technology and frameworks to better address these needs are available and, as well, currently inadequately implemented. Although many of the reasons for inadequate implementation undoubtedly involve fragmented policy at the national and state levels (Gettings, 1988), and corresponding deficiencies in funding, the first step toward resolution of the social issues presented by MRPD is recognition that better practice and treatment is possible now.
The Service Population
Data regarding supported and sheltered workers with developmental disabilities are available for people living in New York State through the Developmental Disabilities Profile (DDP - Brown, et al., 1986) data base, a comprehensive registry for people participating in developmental disabilities services. The data reported here are for the entire population of workers registered as being in continuing receipt of supported work or are sheltered work services, without regard to duration of enrollment. The data items used here have inter-rater and test-retest reliability and internal consistency, concurrent, and predictive validity coefficients equivalent or superior to those for items in the most commonly used adaptive behavior assessment scales (Brown, et al., 1986). Selected characteristics of supported and sheltered workers were contrasted with the [X.sup.2] statistic. Table 1 shows the characteristics of 5,000 supported workers and 16,000 sheltered workers in New York. Although the majority of workers in both groups are in the age range of 21 to 44 years, a higher proportion of sheltered workers is age 45 to 64 years. The majority of workers are male and one-quarter of supported workers and one-sixth of sheltered workers are members of ethnic minorities. Four of ten supported workers and 5.5 of ten sheltered workers participated in ungraded public education during childhood and adolescence. Compared to sheltered workers, supported workers are more likely to be male and members of minority groups, and less likely to have attended ungraded education.
With respect to disability conditions and intellectual abilities, compared to sheltered workers, supported workers were less likely to be classified with MR, moderate to profound MR, epilepsy, or PD, and more likely to be classified with learning disability. These data indicate that supported workers are a select population characterized primarily by intellectual skills in the normal range or the range of mild mental retardation. In contrast, substantially greater proportions of sheltered workers have intellectual skills in the moderate to profound range of mental retardation. Nevertheless, in combination with the data on PD, it appears that workers with co-existing psychiatric diagnoses and mental retardation will tend to have mild mental retardation. Moreover, compared to epidemiological samples (e.g., Lund, 1985), although PD is reported as present for 16% of supported workers and 19% of sheltered workers, these rates are lower than expected, indicating that presence of PD may be a factor that hinders entry of people with MR to supported or sheltered work (see Fletcher, 1988).
Table 2 shows indicators of needs for adjustment services among supported and sheltered workers with developmental disabilities. These data show the extent to which workers have physical or sensory disabilities and chronic medical conditions. Generally, workers walk independently; about nine of every ten workers have normal vision and hearing. However, substantial portions of workers have seizures requiring management, and a clinically significant proportion of workers has chronic cardiovascular conditions, with these factors more strongly represented among sheltered workers. Health-related service needs for these workers appear to be less marked than among people with developmental disabilities as a whole (Beange, McElduff, & Baker, 1995), but the rates at which health conditions are present indicate [TABULAR DATA FOR TABLE 1 OMITTED] that a subset of workers may benefit from treatment to enhance compliance with medical regimens and dietary or lifestyle restrictions and to enhance self-monitoring and self-management of health status for these recurring or chronic conditions (Davidson & Davidson, 1980; Kedesdy & Russo, 1988).
Table 2 also shows behavior disorders and behavior consequences among workers. Generally the listed behavior disorders occur among sheltered workers at twice the rate that they occur among supported workers, a significant difference. This probably indicates that the presence of these problems affects entry to supported work, referral from sheltered work to supported work, and longevity in supported work. Each of the behavior disorders listed is distinctively social in character and has self-evident implications for vocational performance, especially in service businesses. Among supported workers, about 9% are reported to be unable to transition to less restrictive circumstances (i.e., competitive employment) due to behavior disorders, whereas for 7% behavior disorders necessitate provision of special (treatment or management) procedures or a structured [TABULAR DATA FOR TABLE 2 OMITTED] environment. Over one-quarter (29%) of sheltered workers are reported to be unable to transition to less restrictive circumstances (i.e., supported employment) due to behavior disorders and one-fifth require special procedures or a structured environment.
Table 2 also shows that these workers generally are not in continuing contact with (psychiatric) nurses, psychologists, or psychiatrists at rates consistent with the presence of these problems. As the table indicates, the primary sources of mental health services for these individuals are social workers, which probably means that the services provided tend to be verbal and group counseling, since these are the modalities that are stressed in social work education. These low rates of contact, when contrasted with rates of PD and behavior disorders, may indicate that rehabilitation professionals are addressing the adjustment service needs of these people through provisions of individual written rehabilitation plans, or that these needs are undertreated due either to failure to refer for specialist services, possibly due to discounting of the need for, or efficacy of, treatment or problems accessing specialists (i.e., problems paying for specialist services, lack of appropriate clinicians to whom referrals might be made). Experience suggests that all of these considerations are relevant. In order to better understand why, the policy focus shifts here to contextual concerns.
Although people with MRPD have been recognized to be a group requiring specially tailored services to achieve consistent, positive rehabilitative and therapeutic outcomes for decades (e.g., Menolascino, 1965), several factors have affected implementation of comprehensive and specialized services. These factors can be exemplified as side effects of historical, system, and professional practice trends.
Historical and System Factors. There has been a massive reformation of developmental services in the past 25 years. Today, many fewer people with MR live in large, impersonal and depriving institutional settings, and most who continue to reside in institutions do so in facilities that have a rehabilitative focus and have established long term goals for residents that include living in community situations. Large numbers of former institutional residents now live in a variety of small group living situations in communities, situations which represent rehabilitative models (Janicki, Jacobson, & Schwartz, 1982) that differ in accord with the independence skills of participants (Brown, et al., 1986). In all of the states (as of 1995) more individualized support services are available to support more independent or semi-independent living. The capacities of sheltered work settings have increased dramatically and both treatment settings providing interdisciplinary care and supported employment now proffer alternatives to sheltered work as day service and employment options. Families of people with MR are able to obtain respite and other needed supports. Importantly, children and adolescents with developmental disabilities are guaranteed free and appropriate public education services and early intervention services have become increasingly available.
Because developmental services systems are engaged in a process of continued diversification and improvement, the magnitude of these accomplishments may often be understated by contemporary reformers. Nevertheless, the process of reform has had some notable side effects (Jacobson & Mulick, 1992; Jacobson & Otis, 1992). Although both the states and federal government have dramatically increased their investment in developmental services, for adults with developmental disabilities this investment has been primarily in the aspects of deinstitutionalization involved with downsizing or closing institutions and transition of residents from institutions to community living. A substantial proportion of new day and vocational services development has been consumed by former institutional residents (Jacobson & Schwartz, 1991). While access to services has improved for people who never lived in institutions and their families, adult services are not provided universally, in the sense that capacity to serve new individuals is constrained (Jacobson, 1991). As a result, a form of triage has emerged, in which those people with the greatest perceived need for services are enrolled first.
To understand this triage effect, epidemiological and service utilization trends must be contrasted. Data on the epidemiology of MR show that, relative to their presence in the general population, people with mild MR are under-represented, and people with moderate to profound MR are over-represented, in adult developmental disabilities services (OMRDD, 1990). Generally, and in reflection of the benefits of adult vocational and social adjustment conveyed through participation in public education, the people with mild MR participating in adult services are people who, in addition to needs for services associated with MR, also evidence service needs associated with the presence of physical, learning, or psychiatric disabilities, and consequently disproportionate needs for social adjustment and mental health services. Throughout the nation, the majority of people with mild MR do not participate in adult rehabilitation services (Richardson, 1978).
Development of community developmental and rehabilitation services was fueled by federal financing initiatives (Jacobson & Schwartz, 1991). These initiatives were targeted to people with developmental disabilities and represented funding mechanisms entirely separate from those for mental health services. As a consequence, in many states separate administrations, in terms of either formal or functional organization, emerged for these service populations, and separate groups of provider organizations developed for these populations, in turn organizing their services according to incentives and opportunities developed by these administrations (Gettings, 1988). This has been reflected in reduced capacity to respond to mental health issues in developmental disabilities agencies and a reduced capacity to respond to the needs of people with MR in mental health agencies. Hence, integration and coordination of services for people needing both developmental and mental health services has become a focus of concern in many local service systems (see also Jacobson, 1991; Kearney & Smull, 1992).
Professional Practice Factors. At the same time that a focus on community services development for people who had been institutionalized and the emergence of separate service systems were affecting development of rehabilitative services for people with MRPD, trends in professional practice emerged that have also had impacts. The initial impetus for deinstitutionalization arose in reaction to the recognition of the depriving and dehumanizing nature of institutional living in the 1960s and 1970s and of the effectiveness of behavior analysis as a methodology for teaching community living and other instrumental skills to people with MR, as well as for ameliorating aberrant behavior that had been previously considered to be treatment resistant (Landesman & Butterfield, 1987).
During the 1960s and 1970s in mainstream psychology and rehabilitation, applied behavior analysis - operant learning - was highly influential in shaping the evolution of treatment procedures, especially for populations with severe disabilities, such as those with MR or severe and persistent mental disorders (SPMD) whose social adjustment needs had not been well addressed by more conventional therapies in rehabilitation settings. Since the 1960s the initial efficacy of behavior analysis in treatment of SPMD has been overshadowed by the revolution in psychopharmacological treatments that began at about the same time, and there has been a continuing shift of mainstream psychological perspectives toward cognitive behavior therapeutic (including respondent learning) models embedded in a general biopsychosocial framework (Gardner, Graeber, & Cole, in press). This model stresses enhancement of social and vocationally relevant adjustment by addressing a combination of biological factors and historical, social, and environmental influences upon cognition, affect, and behavior that are variably salient in the individual case.
Over the same period, behavior analysis has become more oriented in theory and method to the ecology of behavior, especially to biological, social, and situational influences upon behavior, exemplified in what is termed ecobehavioral analysis (e.g., Repp, Barton, & Brulle, 1987). Behavior analysis has also demonstrated continuing utility as a treatment and intervention model in MR and other chronic disabilities, in particular both psychosocial and head injury rehabilitation, as well as special education situations for youth with a range of handicapping conditions. Both behavior therapeutic and behavior analytic treatment technologies show strong promise of benefit in improving the social adjustment of people with mild MR and PD.
Although there has been a continuing development of treatment approaches with applicability in rehabilitation for people with MRPD, it seems likely that a combination of evolving treatment practices and evolving social perspectives in the broad field of developmental disabilities have led to a tendency to underidentify and consequently to undertreat PD among people with MR as a whole (Jacobson & Mulick, 1992, 1994; Jacobson, Mulick, & Schwartz, 1995). In this regard, it is important to remember that the advent of community rehabilitation was enabled by deinstitutionalization as a social movement, fueled by civil rights precedents achieved by other segments of society, and built on a largely social and nonprofessional (i.e., institutional, and team versus professional practitioner) foundation of practice (Behar, 1988; Jacobson & Mulick, 1992).
Concurrently, the perspectives of normalization (Wolfensberger, 1972), the provision of services and supports in the most socially normative ways and settings possible, were embraced by developmental disabilities advocates (and later contributed to the emergence of psychosocial rehabilitation approaches). To some extent, normalization, as a formulation linked to social role theory, has become melded in common and contemporary use with other social perspectives that (1) emphasize the potential (and poorly validated) debilitating effects of the process of psychiatric diagnosis and classification itself, (2) minimize the relevance of individual learning and performance to the determination of disability, and (3) aver that provision of mental health or rehabilitative treatment, or certain treatments, is a non-normalizing practice (Mulick & Kedesdy, 1988).
The civil rights orientation, normalization orientation, and resulting (and ironic) non-clinical orientation of interdisciplinary teams and service settings have, unsurprisingly, led to a tendency to set rehabilitation goals that are singularly defined by achievement of an integrated lifestyle without regard to, or with decreased regard for, social adjustment issues that are not situationally determined but which instead reflect PD (e.g., Luckasson, et al., 1992). For example, the evaluation literature on successful community living and vocational adjustment has generally defined success narrowly in terms of continuing residence or participation, rather than in more specific ways (Emerson, 1985; Fabian, 1992). In contrast, rehabilitation and clinical intervention are more generally recognized, outside the field of developmental disabilities, to be processes that achieve a multiplicity of objectives, including not only overt lifestyle improvements, but also increased ability of a person with a disability to manage and regulate their own behavior (e.g., self-direction skills), form social relationships (e.g., social skills), and achieve enhanced influence upon their environments (e.g., instrumental skills) (Rusch, Wilson, Hughes, & Heal, 1994; Vandergriff & Chubon, 1994).
It is possible that stress on overt social outcomes and minimization of the effects of individual ability and performance upon successful adjustment reflect an immense pessimism in elements of the developmental disabilities community regarding the ability of people with MR to achieve gains in self-direction, social, and instrumental skills (see Dillon, Fenlason, & Vogel, 1994; Jacobson, Mulick, & Schwartz, 1995; for further consequences of pessimism). Certainly, rehabilitative intervention to promote the development of such skills can be readily provided in more individualized settings than has been the case in the past, and evidences greater ecological validity when training is provided in the contexts where skills will be used (Felce, deKock, Thomas, & Saxby, 1986).
However, it is also likely that, because of de-emphasis of the impact of individual skills on successful adjustment, people with MRPD generally receive unnecessarily and insufficiently specific preparatory and continuing treatment to enhance their social and vocational adjustment, and consequently many vocational settings achieve substantially less favorable social and vocational outcomes for these people than is possible. Briefly, the difference between what can be achieved now and what is typically achieved is largely a matter of the organization and implementation of social adjustment services for people with mild MR and PD, not of the need to develop new knowledge or treatment techniques.
Clinical Issues and Intervention Focus
Assessment. Assessment issues are closely linked with uncertainties with regard to the prevalence of PD among people with MR. Prevalence rates for combined presence of major mental disorders in this population range from about 15-20% (150 to 200 per thousand) to 30% (300 per thousand), with lower rates found in studies of service registries (e.g., Jacobson, 1982a, 1982b), higher rates found in studies that use epidemiological methods and consistent diagnostic screening methods (Jacobson, 1990a; Lund, 1985), and the highest rates are found in individual clinic and referral studies. For methodological reasons (see Jacobson, 1990a), the moderately high rates found in epidemiological studies are likely to be the most generalizable. Rates found in registries can be affected by poor access to appropriate diagnostic services; more ready diagnosis of behavior problems, rather than disorders or syndromes (see Kazdin, 1983), among people with moderate to profound MR; underidentification of anxiety disorders, including phobic and obsessive-compulsive disorders (Jacobson, 1990b); and anti-labeling bias of personnel who are reporting data (Jacobson, 1990a). A recent meta-analysis of the extent to which the particular anti-labeling bias termed diagnostic overshadowing affects identification rates of MRPD suggests that its impact is small to moderate overall and arguably small for appropriately trained and experienced clinical professionals (White, et al., 1995).
Some form of organized and individually tailored assessment is a precursor to adequate treatment planning, regardless of the treatment context. For the individual, both diagnostic and functional assessment are important steps in determining whether conditions or disorders are present for which there are effective pharmacological or behavioral treatments and to help clinicians identify literature on treatment methods that have shown benefits for people with similar social adjustment problems. Screening instruments can be useful for identifying possible treatment focus. For people with severe or profound MR, the Aberrant Behavior Checklist (Aman, Singh, Stewart, & Field, 1985) is the screening instrument that has been researched most extensively to date. For people with mild or moderate MR, two instruments with demonstrated utility in screening are the Reiss Screen (Reiss, 1988b) and the Psychopathology Instrument for Mentally Retarded Adults or PIMRA (Matson, Kazdin, & Senatore, 1984).
In order to screen for treatment focus on social skills training, there is also a scale, the Social Performance Survey Schedule, available for this purpose (Matson, Helsel, Bellack, & Senatore, 1983) that has demonstrated pragmatic value. In addition, for people with mild MR, although multivariate and thematic personality measures may tend to elicit concrete, stereotyped, and repetitive responses, structured mental status examinations have been developed for this population, e.g., the PASS-ADD: Psychiatric Assessment Schedule for Adults with a Developmental Disability (a modification of the Present State Examination - Patel, Goldberg, & Moss, 1993). A comprehensive review of available instruments and their properties has been presented elsewhere (see Aman, 1994). Because the types of severe behavior problems that have been researched most frequently in the field of developmental disabilities are not especially predicative of PD (Rojahn, Borthwick-Duffy, & Jacobson, 1993) and are present in other elements of the population with MR (Jacobson, 1982a, 1982b, 1988), adequate screening and assessment instruments are required to promote effective clinical practice. Most of the existing instruments are readily completed by experienced rehabilitation professionals for screening purposes.
In addition to behavior that is socially disruptive or affects vocational performance, the presence of PD may potentiate cognitive difficulties that characterize MR (Jacobson, 1982a). These factors should be assessed as a possible focus of rehabilitation and include problems in sustained, selective, or alternating attention, orientation to the occurrence and passage of events, memory, verbal reasoning and problem solving, perceptual or analytic abilities (nonverbal reasoning), social reasoning, and executive functioning (including self-monitoring and self-regulation)(e.g., Levine, Horstmann, & Kirsch, 1992). Fletcher (1988) has observed that "limited attention span, high distractibility, impulse control difficulty, and poor interactional skills contribute to a high rate of termination from the sheltered workshop setting" (p. 260) for people with MRPD. These factors can be efficiently assessed primarily through individualized and standardized psychometric methods, and will typically lie outside the scope of functional assessment responsibilities that typify professional rehabilitation practice, necessitating referral to specialists.
In addition to addressing cognitive factors in assessment, there has been a growing appreciation of the importance of assessment of learning, training, task, activity, and vocational role preferences (Foxx, Faw, Taylor, Davis, & Fulia, 1993; Mithaug & Mar, 1980; Parsons, Reid, Reynolds, & Bumgarner, 1990). For example, Foxx et al. (1993) developed a structured interview to determine individual preferences for community living alternatives and systematic training and supports for people with disabilities to identify their strongest preferences, and obtain information about the availability of preferred alternatives.
For the rehabilitation practitioner working with people with MRPD, assessment of psychosocial assets and deficits will require a broad focus on motivation to complete training and ability to work independently, coping with work-based psychosocial and task completion stressors, and social skills required to work collaboratively with others, accept supervision, supervise others, and work with the public (Rubin & Roessler, 1979). Demonstrations and evaluations in psychosocial rehabilitation have stressed situational assessment (e.g., conducting rehabilitation and mental health assessments through observation of performance of targeted tasks in actual or simulated environments; Cook, Graham, & Razzano, 1993). Completion of functional assessments, which can identify recurring, precipitating events or situations as well as consequences of social maladjustment, may be conducted, as noted above, in the regular course of activity in the rehabilitation setting, or in assessment sessions where demands upon the person with a disability are systematically varied. These measures can be augmented by brief checklist measures, involving self-ratings or ratings by others of depression, anxiety, and other specific disorders that have evident value both as assessment devices and periodic measures of progress in treatment (Jacobson, 1994).
Further measures might include, for social skills deficits, role-playing probes, skill probes, and ratings of video-taped interactions, for affective or anxiety disorders, medication counts, and periodic self-ratings or daily diaries (perhaps maintained on audiotape; Jacobson, 1994). However, when performance of daily and instrumental activities of daily living is inconsistent because of difficulties in self-monitoring and self-management, there may be no substitute for in situ functional assessment to indicate compensatory procedures or routines, or skill improvements that are ecologically valid and compatible with the person's present performance ability (e.g., Emerson, 1993; Iwata, 1994; Mace, 1994; Schlinger & Blakely, 1994; Tustin, 1994). Continuing monitoring of treatment effects, through probes, continuous counts of behavior, sampling behavior, or ratings in sessions will be necessary to guide continuation, modification, or discontinuation of treatment, and should be considered to be an inherent component of treatment (e.g., Lloyd & Cuvo, 1994), as well as an obligation of practitioners. Unfortunately, the literature on MRPD is silent on whether therapist monitoring of treatment effects is typical, but experience suggests that when it does occur, it is cursory and incomplete in nature. However, the combination of the developing literature in assessment of PD in people with MR and the methods of functional assessment in behavioral analysis and focused problem assessment constitutes a usable foundation for assessment and psychosocial treatment planning for people with mild MR and PD in rehabilitation settings.
As noted previously, in some instances (e.g., Gardner, et al., in press) clinician researchers have set forth assessment and treatment frameworks grounded in behavior therapeutic models for people with MRPD. More commonly, however, in program descriptions the foundation for adjustment services is not well explicated or entails a mainstream mental health services approach blending psychopharmacological and verbal or cognitive behavior therapy components to address primarily emotional and cognitive factors. Such recommendations reflect the perspective that people with MRPD require access to "mental health services." However, mental health services are quite diverse in character, and over the past two decades there has been continuing evolution of more specifically defined models characterized as psychiatric or psychosocial rehabilitation (Anthony, 1977). As a mental health services model, psychosocial rehabilitation represents a seemingly underappreciated framework for the provision of adjustment services for people with MRPD. In particular, there are many similarities in the principles and practices of psychosocial rehabilitation and prevalent organizational and rehabilitative practices in the field of developmental disabilities, requiring little reconciliation of perspectives or general methods, although the goals of treatment in psychosocial rehabilitation are expanded to comprehensively encompass primary psychosocial skill and performance deficits associated with PD.
Psychosocial rehabilitation places emphasis on coordination of needed services; teaching of practical skills in the client's own environment, active participation of the person with a disability in the development of individual plans of care (e.g., individual service, individual program, or individual written rehabilitation plan), and ongoing monitoring of progress (Carling, 1992; Cook, Graham, & Razzano, 1993; Willer, Guastaferro, Zankiw, & Duran, 1992). In a review of the psychosocial rehabilitation literature, Mueser and Liberman (1988) reach three conclusions regarding skill training:
"(1) psychiatric patients can be trained in behaviors that will improve their social skills in specific interpersonal situations;"
"(2) patients show moderate to substantial generalization of trained behaviors to untrained scenes and items (they have greater difficulty learning more complex behaviors, e.g., conversational content, than simpler behaviors, e.g., eye gaze)"; and
"(3) comprehensive, intensive social skills training can reduce clinical symptoms and relapse in psychiatric patients" (pp. 84-85; paranthetics added; see also, Carling, 1992).
Early treatment of psychosocial deficits of people with MR involved a primary emphasis on goal setting, feedback on performance, and token economies (Bellamy, Inman, & Yeates, 1978; Close, 1973; Trybus & Lacks, 1972; Warner & Mills, 1980). Applied behavior analysis has been used successfully in the treatment and improvement of a number of key behaviors that have ramifications for the vocational performance of people with PD, including recognition of environmental events, improved social interaction, work behaviors, personal habits, sitting and sleeping, actions that annoy others, "crazy talk", and aggressive behaviors (Freestone, 1974). More specifically, behavioral treatment procedures have been applied to address symptomatic verbal behavior and psychotic verbal behavior such as mutism, delusional speech, and description of auditory hallucinations; compulsive and hand-washing, phobias, responses to social overtures by others and conversational skills, neurotic avoidance, personal habits, pacing and wandering, weight-reduction, pill-taking and self-medicating, affective responses, and continence (Stall & Leitenberg, 1976).
Similarly, as treatment strategies to build skills, Mueser and Liberman (1988) have recommended use of role plays, direct instructions, modeling, coaching to gradually modify behavior, and the introduction of strategies to induce generalization of skill gains. Role playing, direct instructions, modeling, and coaching techniques are all readily incorporated in small group therapeutic processes (Rose, 1977). For example, if a person with MRPD can identify opportunities for social reinforcement and structure the environment to advantage, can self-monitor behavior, and can regulate one's own behavior by attending to more distant consequences and learning when social contingencies change (Follette, Bach, & Follette, 1993) then that person can more effectively develop and use social skills in a vocational context. Small groups provide opportunities to acquire these skills and also present opportunities for time efficiencies for treatment that may be necessary in the rehabilitation setting. Behavioral intervention explicitly addresses social skill concerns, with respect to coping skill deficits (Miller, 1992), self-management skill deficits, and performance deficits (including inadequate incentives, competing emotional arousal, and competing behaviors - Gardner, et al., in press).
Gardner (1988) and Gardner et al. (in press) have identified a wide range of effective behavioral assessment and treatment procedures with demonstrated applicability for people with MR and psychosocial disability, together with other comprehensive sources, including Cipani (1989), Gardner and Cole (1993), Gardner and Sovner (1994), Matson (1991), Matson and Barrett (1993), Nezu, Nezu, and Gill-Weiss (1992), Repp and Singh (1990), Thompson and Gray (1994), and Van Houten and Axelrod (1993). As well, research continues to be done with particular relevance to psychosocial rehabilitation services for these individuals, as is evident in recent work by Foxx, McMorrow, Bittle, and Fenlon (1985), Lalli, Pinter-Lalli, Mace, and Murphy (1991), Stewart, Van Houten, and Van Houten (1992), and Wong, et al. (1993).
Nonetheless, Scotti, McMorrow, and Trawitski (1993) have identified a trend toward diminishing publication of behavioral research in the treatment of PD, with the exception of anxiety disorders, and to a lesser degree, affective disorders. They note that the presumed, but largely unjustified, sufficiency of psychopharmacological treatment, decreased funding for research, difficulties in implementing treatment in community care, a tendency of behavioral researchers to eschew theory development with respect to specific psychiatric disabilities, and failure to apply functional analysis to psychotic and other disorders are possible reasons for decline in research and publication.
Also salient, however, are changes in the array of procedures that are considered to be "treatment." As Gardner et al. (in press) report, lifestyle modification based on engagement in preferred activities has shown clinical benefit in alleviation of severe behavior disorders. The compatibility of life style modification with more ideological features of the fields of developmental disabilities and psychosocial rehabilitation, which stress, among other values, integration and empowerment, may encourage clinical workers and referral sources that lifestyle modification is a generally effective approach to treatment of PD in MR, and discourage the design of treatment that focuses on the behavior and performance of the individual rather than their circumstances, activities, and routines. Such a trend is not distinctly evident in psychosocial rehabilitation, in that integration is often seen as providing opportunities for treatment involving situational changes or the addressing of skill or performance deficits (e.g., Willer, et al., 1992). As well, the parameters of lifestyle modification effectiveness in alleviating behavior disorders, and especially severe and persistent PD, are not well established (National Institutes of Health, 1991), and current knowledge does not provide a firm foundation for disregarding the possibility benefit to be achieved by focusing the primary emphasis of treatment on a person's abilities, performance, and disruptive or dysfunctional behavior rather than their ecology.
Policy in Treatment
The notion that people with MR can and should be engaged in competitive or sheltered employment is not new for the 1990s (e.g., Nettleback & Kirby, 1981). As well, there has been longstanding recognition that social and work related skills are important to vocational success, perhaps because many workers in early efforts of this sort, including competitive work and volunteering in community jobs by institutional workers, had both mild MR and unreported PD (e.g., Adriano, 1977; Burrow, 1974; Neuhaus, 1974).
On the one hand, workers with (predominantly mild to moderate) MR have been found to engage in co-worker interactions similar to those of people without disabilities, appear to be able to develop work roles that reflect socialization within work groups, and establish social networks in this socialization (Rusch, et al., 1994). On the other hand, only about 14% of people participating in supported work have chronic PD; and retention rates for people with MR in supported work have been in range of 66% for six months and 33% for one year (Fabian, 1992). The related literature suggests that reports that failure in supported work is associated with medical health, aberrant behavior, social reasons, and behaviors exhibited on the job, rather than diagnosis (Fabian, 1992), findings that parallel those for people with PD, but without MR, wherein work history and ability to get along with others, were predictive of competitive employment outcomes (Anthony & Jansen, 1984).
Nationwide, throughout the past decade there has been continuing growth of supported work; however, states continue to invest principally in segregated settings (McGaughey, Kiernan, McNally, & Gilmore, 1995). Although this growth involves trends toward increasing engagement of people with PD and people with MRPD in supported work, there are substantial proportions of managers, counselors, teachers, parents, coworkers, and policy makers who question whether supported work has evident value for people who have severe or profound MR (Black & Meyer, 1992). Conceivably, indeed probably, large segments of the public who are not working in developmental disabilities services may question the social validity of supported work for these people, an important concern because many are potential coworkers of supported workers.
Although there is an immense literature on public and professional attitudes toward what might be called non-categorical disabilities, usually anchored to physical disability such as spinal cord injury, research that is anchored to MR generally demonstrates differentiated attitudes and social judgements that reflect severity of disability and behavior disorder (e.g., Gething, LaCour, & Wheeler, 1994; Rasnake, Martin, Tarnowski, & Mulick, 1993). Many attitude change interventions in the literature involve conveying accurate information and increasing contact by naive, public school or university, students with people with disabilities, in order to alleviate stereotyped attributions.
In contrast, the factors affecting attitudes of clinicians and staff toward people with MR involve somewhat different issues, in that they have more knowledge about the effects of MR and about people with MR as individuals, and have had continuing contact with them (Jacobson & Ackerman, 1992). For example, Gething et al. (1994) found that nursing home administrators held more positive attitudes toward people with disabilities than did nurses, and suggested that nurses possibly had more stressful, sustained and intensive contact with these people that involved assistance to compensate for individual functional limitations.
For clinicians and staff in rehabilitation services, their responses on attitude measures may reflect actual differences in skills and performance among groups of people with disabilities, or may sometimes be inflated and reflect social desirability biases because many of the measures that have been used are highly transparent and politically correct responses can be easily discerned. Moreover, attitudes are usually characterized as more or less positive (e.g., those held by clinicians compared to managers) without regard to a clear threshold beyond which attitudes are gauged to be positive, and thus less positive attitudes cannot be clearly judged to be negative. There is also little evidence that beyond the extremes of comparison embodied by institutional and nonrestrictive community settings, there is a close relationship of attitudes toward people with MR and their lifestyles or the manner in which they are served (e.g., among workers in group homes, Jacobson & Ackerman, 1992).
Proponents of inclusion for children with disabilities have suggested that negative public attitudes toward people with MR should not constitute a rationale for foregoing social integration or establishing it as the foundation of rehabilitation services (e.g., Cole & Meyer, 1991). However, for most people with MRPD, lifestyle enhancement requires that psychosocial and social skills deficits that are not present for other people with MR be addressed for one crucial reason: disorganized and socially disruptive behavior is poorly tolerated by coworkers and supervisors in work environments, particularly if consistent and reliable performance is important, as it is in most work. The DDP data from New York show that supported workers are significantly less likely than sheltered workers to engage in behavior "that prevents movement to a less restrictive setting." This appears to reflect a blend of clinical prognostication that coworkers will not tolerate present behaviors and a relative scarcity of treatment resources or efforts to alleviate these behaviors. This is not to say that entry into supported work should be contingent upon successful treatment regimen for these people.
Proponents of supported work for people with moderate and severe disabilities have underscored that these workers require a combination of behavioral skill training to improve work performance, social skills, and skills to recruit social support from co-workers, as well as continuing monitoring of improvement in work speed, proficiency, and needs for staff assistance (Wehman & Kregel, 1985). There is very little literature on rehabilitation of people with MRPD that would indicate the relative success of "train-and-place" versus "place-and-train" models for this population, and thus it would be unjustified to assume that the former would demonstrate greater success. If people with MRPD are to be successful in supported work, however, they will require skilled and diverse treatment to address psychosocial skill and performance deficits that will hinder social integration and vocational socialization. The assessment and treatment technology to address these concerns is in hand; the key issues to be addressed today are limitations presented by scarce fiscal and personnel resources, and possibly a lack of candor in acknowledging the utility of supportive clinical treatment in vocational adaptation.
Development of this article was supported in part by New York State Office of Mental Retardation and Developmental Disabilities. The perspectives and conclusions presented here do not necessarily reflect the policies of the sponsoring organization.
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|Author:||Jacobson, John W.|
|Publication:||The Journal of Rehabilitation|
|Date:||Jan 1, 1996|
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