News and Knowledge

“Inclusion.” Just mention this one word in the field of autism and developmental disabilities (DD) and battle lines are almost immediately drawn in both the educational and community service arenas. When discussing the development of programming for children and adults with autism and other developmental disabilities who coincidentally present with serious behavioral and/or psychological challenges, ideology and practical reality often collide. The Olmstead decision (Olmstead v. L.C., 1999) in community services and the initiation and reauthorization of the Individuals with Disability Education Act in educational circles (IDEA: Congress, 2002; IDEA, PL 105-17; Turnbull, Wilcox, Stowe, and Turnbull, 2001) were not only landmark in both their mandate and scope, but also furthered an ongoing crisis experienced by service providers across the country.

Individuals with autism/DD who present with medical, psychiatric and/or behavioral challenges have been entering our classrooms and communities at an ever-increasing rate for years. The federal government has made the message clear: “Provide services for all individuals with special needs that are natural setting based and least restrictive in nature, and do it quickly.” The community has heard the message and responded with an unprecedented emphasis on community integrated housing and inclusive educational programming over the past seven to10 years (Sailor and Paul, 2004; Kormann and Petronko, 2002a; Daniel and King, 1997). Critical questions, however, remain unanswered: Has the practical reality of inclusion developed as smoothly as the philosophical underpinnings? Has the inclusion-based infrastructure developed sufficiently to ensure that a full range of appropriate services is available to this extremely challenged population? What clinical services are needed to best ensure that students and residents with autism/DD and behavioral challenges are supported in the most effective way possible?

The Dilemma That is Inclusion

Individuals that present with a combination of autism/DD and severe behavioral and/or psychiatric disorders have been labeled as dually diagnosed (Reiss, 1982) and make up a significant portion of the DD population (Reiss, 1985). When considered with medically frail individuals, this population has historically represented a group that requires more intensive, and sometimes segregated care in specialized residential (i.e. developmental centers) or academic (special education/self contained) programs. Treatment protocols are often complex, behaviors may be severe and the physical and emotional toll exacted on staff and families may be extraordinary. Maintaining the treatment environment as separate from the “typical” community may have been misguided but was nonetheless multi-functional: centralization of expertise and “protection” of the community from disruptive or dangerous behaviors often represented the philosophies that drove treatment decisions.

While the philosophy regarding the support of individuals with dual diagnosis has clearly changed, the debate regarding the impact of inclusion has not. The literature is mixed regarding the impact on academic progress for students with and without disabilities in traditional versus inclusive classrooms (Wallace, Doney, Mintz-Resudek, and Tarbox, 2004; Cole, Waldron, and Majd, 2004; Daniel and King, 1997; Kauffman, 1995) as well as on the effects of community acceptance, socialization, and attitudes (Kormann and Petronko, 2002b; Hieneman and Dunlap 2000; Luiselli, Wolongevicz, Egan, Amirault, Sciaraffa, and Treml, 1999; Koegel, Koegel and Dunlap, 1996). Therefore, as we begin to ponder clinical intervention, the question of “point of entry” seems to be critical in attempting to identify “who the client really is” and where exactly the burden of clinical intervention really lies.

Supporting Individuals in Community Settings

Developing an ongoing training and intervention mechanism for direct support staff (i.e. classroom teachers and aides; residential staff) faced with the frequent occurrences of challenging behaviors is critical. Such support must address the idiosyncratic needs of the individual, the staff, the environment, and the socio-political system in which the behaviors are displayed (Petronko, Harris and Kormann, 1994; Colond and Weisler, 1995; Kormann and Petronko, 2002). These variables must be reflected in any intervention approach as they represent the “natural setting” in which the identified individual exists. These needs can best be met by an on-site behavioral training model, which does not necessarily view the referred person as the “target client” and therefore does not direct its only attention to that individual. A service that focuses on the natural setting and earmarks the parent/staff as the designated consumer of training and the initial vehicle for change seems to be the most appropriate option (Petronko, Anesko, Nezu and Pos, 1988; Petronko, et al. 1994; Felce deKock and Repp, 1986; Carr, Horner, Turnbull, Marquis, McLaughlin, McAtee, Smith, Ryan, Ruef, and Doolabh 1999; Feldman, Condillac, Tough, Hunt, and Griffiths 2002; Kormann and Petronko, 2002).

A critical goal that must be achieved in any naturally based support system, however, is that of behavioral competence. If the level of competence that a parent/staff member possesses can be increased through training, he/she can function as a natural support for the individual’s behavior without necessarily contaminating the environment with an observing behavioral consultant. Natural supports are frequently discussed as very attractive when building service plans that are “person centered” (Holburn, 2001; Mount, 1994). It seems clear that a service system that provides for the delivery of behavioral support from the people that are already a part of an individual’s life epitomizes the concept of “person centeredness.”

There are several obstacles, however, that must be overcome when attempting to implement a treatment model that utilizes parents/direct service professionals as the agents of change. The stress associated with providing services to individuals with autism/DD and behavioral challenges in both community residences and classroom environments is well documented (Bersani and Heifitz, 1985; Blumenthal, Lavender and Hewson, 1998; Hagopian et al., 2002; Hastings and Brown, 2002; Mitchell and Hastings, 2001). Low pay, long hours, inadequate training in behavior management, and the potential for personal injury are all obstacles that the disability community must overcome in its attempt to provide effective and consistent behavioral support to individuals with dual diagnoses. A consultation model that views parents/staff members as “the experts” who are a required component to any effective treatment approach seems to address several challenges at once.

First, burnout is often linked to a reduction of “self efficacy” (Bandura, 1977; 1986), which is defined as the perception of one’s skills and abilities to have a positive impact on life’s outcomes. The effect of stress on a parent’s sense of efficacy is described in reviews by Coleman and Karraker (1998), Dyson (1997), and Taylor (1983) and identifies one of the goals of behavioral consultation as the development of coping skills. The improvement in such skills is hypothesized to improve one’s perception of effectiveness and therefore one’s sense of self-efficacy. Moreover, burnout has been linked to the presence of chronic challenging behaviors, ineffective behavior management skills and negative emotional reactions generated in staff because of the targeted behavior (Mitchell and Hastings, 2002; Hastings and Brown, 2002). A behavioral consultation model that promotes self efficacy through the development of management skills and an intervention plan specifically tailored to the needs of the individual, caregiver(s), and environment, would engender a sense of control in not only the caregiver, but also in the identified consumer.

Second, behavioral competence increases the likelihood of mutually rewarding interpersonal experiences between caregivers and the referred individual. The easier it is for an individual with a dual diagnosis to obtain valued reinforcers through his/her behavior, the more likely it is that the parent will be in a position to deliver those rewards. It is quite likely that a relationship in which parents are frequently delivering reinforcers would be viewed as pleasant and ones in which consumers would like to engage more often. As the frequency of such instances increases, it stands to reason that quality of life variables for all involved would be enhanced. Stancliffe, Abery, and Smith, (2000), Campo, Sharpton, Thompson, and Sexton (1997) and Schalock (1994) agree that a clinical model that simultaneously promotes personal control and independence in the referred individual as well as self efficacy and the reduction in burnout in caregivers is critical for the enhancement of quality of life.

Finally, the improvement in behavioral challenges increases the likelihood that the referred individual can be maintained in more inclusive settings. Inclusion implies not only a presence, but an active participation in naturally occurring environments (residential or academic) for individuals regardless of developmental, psychiatric, or behavioral challenges (Holburn, 2001). Bridging the gap between the philosophy and reality of inclusion therefore, seems to rest with the dilemma of developing appropriate accommodations and naturally based supports. Our challenge as we continue into the new millennium is clearly to develop clinical protocols that can simultaneously support individuals with autism/DD in their natural settings while not forgetting the critical role that parents, teachers, and residential staff play in the future of our most fragile population.

References

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Russell Kormann, Ph.D. is the project director for Natural Setting Therapeutic Management (NSTM), a community-based behavioral support program at Rutgers, The State University of New Jersey, that serves individuals with developmental disabilities and severe behavioral challenges. Project NSTM provides on-site behavioral support to families and professional staff who work with referred individuals. Dr. Kormann has been with the Project since 1986 and during his tenure has focused his professional attention on issues of community and academic inclusion for individuals with behavioral challenges, as well as on community-based behavioral assessment. In addition to conducting extensive staff and parent training in behavior management, he has mentored many students in developing their professional expertise in this area. He serves as a behavioral consultant to over 20 school districts and residential programs throughout New Jersey and is both a licensed, clinical psychologist as well as a state-certified school psychologist.