The NADD BULLETIN A Person-Centered Approach to Problem Behavior: Using DIR®/Floortime with Adults Who Have Severe Developmental Delays Gene Christian, M.S., C.R.C.
Abstract cades, the medical model dominated services for The developmental disability field, especially people with developmental delays. Throughout adult services, is characterized by contradictory the nineteenth and much of the twentieth cen- paradigms as the “support” or “disability rights” tury, developmental disabilities were perceived, movement has established powerful consumer essentially, as medical conditions. The disease and professional credibility in a sector that has model implicit in this approach was part of the been dominated by educational and medical mod- array of failings cited by those who sought to re- els. The author proposes a practical resolution to place that model during the mid to latter part this paradigm clash by describing an integration of the last century. Gradually, the medical ap- of evidence-based principles with a person-cen- proach was supplanted by the “developmental tered approach to problem behavior. It is recom- model” - an educational paradigm based on op- mended that applications of essential teachings erant principles. For almost forty years, service in the field of infant mental health can forge an delivery has been guided by the behavioral orien- alliance between the historically incompatible tation that learning occurs most efficiently when approaches of the disability rights movement observable, measurable behavior is manipulated and applied behavior analysis. This resolution is through analysis of environmental events. rooted in a model of assessment and treatment However, in the 1980’s, a different approach known as “Floortime.” “Floortime” is a form of to developmental disability services began to interpersonally contingent developmental inter- emerge. As the disability rights movement action, formulatd by Stanley Greenspan, M.D., gained strength through a network of federally- that exemplifies Carl Roger’s “person-centered funded centers to encourage independent living, therapy” but that can be used with people who a holistic approach to adult support began to are nonverbal. Floortime is described as a way infuse the developmental disability field. A sig- of encouraging spontaneous, developmentally nificant part of the purpose of these independent appropriate interactions within the context of a living centers was “advocacy” – including, espe- clinical model called Developmental-Individual cially, “self-advocacy.” As a result of the disabili- Differences, Relationship (DIR®) as formulated ty rights personal and systems advocacy process, by Dr. Greenspan then later refined in collabo- the philosophical basis of developmental disabil- ration with Serena Wieder, Ph.D. For the past ity services has been slowly changing. A focus on six to eight years, the author has been adapting learning and other “needs” and, by implication, Floortime techniques to address problem behav- individual adaptive deficits is being gradually re- ior and developmental issues for adults with placed by concentration on inclusion and self-di- severe delays. Two brief case descriptions are rection. Founded on the disability-rights model, provided which demonstrate significant improve- the philosophy of self-determination has become ment in aggressive “problem behaviors.” All work the most widely endorsed paradigm in the field. was done in community settings using staff peo- Yet, there remains a fundamental tension in ad- ple who already provide direct support services dressing challenging behaviors between the op- for the subject individuals. erant conditioning paradigm, with its emphasis on external control and determinism, and the A Person-Centered Approach to values implicit in the concept of “self-determi- Problem Behavior: Using DIR®/ nation,” with its core concepts of internal control Floortime with Adults Who Have and spontaneous freedom. The reflective sup- Severe Developmental Delays porter of self-determination must ask – where is A paradigm clash is being played out in ser- the locus of control? If behavior is changed from vices for adults with developmental disabilities. the outside – even by the “positive” manipulation The field, historically, has been rooted in both a of environmental variables – who makes the final medical model and educational models. For de- decisions on which of those variables are changed
March/April 2011 Volume 14 Number 2 21 The NADD BULLETIN and how? How often are approaches to behav- A person-centered approach, using Rogerian ior change – even “positive” approaches – truly philosophical principles, would be far more con- based on consumer self-direction? sonant with the disability rights model of sup- The values of self-determination are often re- port. However, a major reason that Rogers’ per- ferred to as “person-centered” approaches. This son-centered therapy and other humanistic ap- revivifies ideas that were widely supported in proaches have not, historically, been used with humanistic psychology during the mid-twentieth people with developmental disabilities is because century - such as Carl Rogers’s “person-centered of the perceived reliance within these therapeu- therapy” (Rogers, 1961), Maslow’s theory of “self- tic models on “insight” – based on the subject’s actualization” (Maslow, 1968) and other like- ability to use symbols and abstract concepts. Be- minded orientations. There is a well-recognized cause challenges with abstract concepts and logi- theoretical discordance between person-centered cal thinking have always been a definitive char- approaches such as these and the field’s histori- acteristic of the developmental disability rubric, cal reliance on the operant orientation of applied the “insight” approach has been considered inap- behavior analysis (ABA). My contention is that propriate for this group of people. there is a similar discordance or tension between Another problem has been that these thera- the self-determination paradigm and our general peutic models have not, traditionally, provided approach to using behavioral analysis to inter- a strong evidentiary basis. The premium on vene with challenging behavior. The very notion evaluating behavior change interventions in a of “operant” action is the practice of manipulating systematic – observable and measurable – fash- environmental variables. Traditional behavioral ion is the greatest contribution that behavior- interventions tend to be based on the assumption ism has provided the developmental disability that settings and responses should be analyzed field. Operational accountability has been an by an outside agent – “the professional” – who incontrovertible boon for the quality of services manipulates environmental contingencies based provided to people with severe developmental on the subject’s responses and the achievement differences. Yet, data-based program design of “target behaviors” determined as “desirable.” need not, necessarily, be inconsistent with self- This is an inherently authoritarian model that, determination and person-centered approaches. through externalization of the locus of control, The critical tenet of positive behavior support – subtly undermines and calls into question the that problem behaviors should be replaced with person’s capacity for choice. behavior that is more adaptive, functional, and With the advent of “positive behavior support” individually meaningful – must remain para- (PBS), many behavioral practitioners have tried mount. Therefore, to reconcile the differences to reconcile this contradiction by relying solely between the authoritarian aspect of behavioral on positive reinforcement technology to address approaches and more person-centered ways of problem behavior. This movement has suggested supporting positive behavior, we need a theo- that the “function” or the purposeful meaning of retical model that includes that core demon- problem behaviors must be considered, so that strated strength of applied behavior analysis practitioners can understand the communicative – an operational foundation for service design, intent of a client’s behavior. However, for many evaluation, and modification – but that is guid- people with disabilities, who have little functional ed by the choices and personal interests of the input into the planning process, positive behav- individual. A new model of addressing problem ior support is still overly reliant on professionals behavior should provide an observable, measur- and support personnel to interpret behavior and able basis for intervention while finding a way direct the learning process. This approach begs to rely on the individual as the locus of control the question: how much of the time do profes- insofar as concerns the direction and nature of sionals guide the individual toward choices that the learning process. Ideally, that model would are perceived as desirable by support personnel harness the power of emotionally-invested – or but not, necessarily, by the individual? Often, self-determined – learning in assisting individu- the subject’s expression of desirability may be als with severe delays to overcome the barriers difficult to discern, but it is nonetheless critically presented by “problem behavior.” Reinforcing important in any self-determination-based mod- events, the timing and nature of which are con- el. Positive behavior support offers another way trolled by professionals, are, currently, the cen- of describing the process of using reinforcement tral tool used to establish motivation for positive technology as a mechanism for managing socially behavior with adults with severe developmental difficult behavior. differences. Primary reliance on artificial rein-
22 March/April 2011 Volume 14 Number 2 The NADD BULLETIN forcement, however, leaves the manipulation functional capacities that are the basis for es- of environmental variables to the professionals tablishing meaningful relationships and self-de- and support personnel. This inherently takes termined forms of environmental control. This control away from the individual. An approach individual processing profile also provides criti- is needed that allows the individual to lead cal clues as to how to best work with the person throughout the intervention process in order – using emotionally satisfying play to bring out to not only maximize self-direction but also to an individual’s best capacities. Intensive work – build increased relatedness, self-direction, and both with Floortime and with related therapies competence in daily decision-making. such as speech, occupational, and physical ther- The Developmental, Individual-Differences, apy – is necessary for each child – or seriously Relationship-Based (DIR®) model, developed challenged adult – to reach her optimum level of by Greenspan and Wieder, may provide such personal development. an approach. Through their work with chil- In traditional DIR® therapy, an individually dren affected by all kinds of regulatory, devel- attuned picture of the child helps to truly individ- opmental, and learning differences, including ualize the nature and direction of a child’s inter- autistic-spectrum disabilities, Greenspan and active learning. This constitutes the DIR recog- Wieder have offered a “road map” for develop- nition of “Individual-Differences” (“I”) in sensory ment which helps us use “Floortime,” and other reactivity, sensory processing, and motor plan- relevant therapies, in a way that encourages in- ning. This evolving picture of each child’s “sen- dividual self-direction and relational autonomy. sory profile” helps guide teaching and therapy. Grounded in the study of infant mental health, My own clinical experience suggests a compre- Greenspan and Wieder describe a functional- hensive understanding of individual differences emotional developmental progression that is just as critically important in working with tracks the child’s healthy emotional develop- and addressing problem behaviors for adults and ment from the initial capacity for self-regulation adolescents with severe delays. into the love relationship between the baby and The DIR model rests on the recognition that all her caregivers and on through the growth of critical early learning occurs through, and is me- emotional reciprocity, empathy, symbol forma- diated by, the nature of primary relationships. tion, and the ability to use ideas and the full Emotional interplay drives the dynamic process range of human emotion, freely and flexibly. of active, engaging relationship that teaches us This is the developmental contribution of the to hone our interpersonal sophistication, our sen- model – or the “D” in “DIR”. This developmen- sitivity to others, and to learn more flexible us- tal trajectory, described through the emergence age of ideas and symbols. “Relationship” is the of six core “functional/emotional” levels, is con- “R” in “DIR.” Critical learning is best embedded sistent with the most current neurobiological through the medium of modulated, but invested, knowledge of child development. The Greenspan interpersonal emotional experiences. That kind Social Emotional Growth Chart, based on these of emotion is elicited and regulated through sup- functional emotional levels, has been tested portive relationships. These supportive relation- with over a thousand infants and children and ships begin with an attitude on the part of the found to be a highly reliable screening tools for teacher, or caregiver, which effectively parallels developmental problems in young children. what Carl Rogers described as the fundamental The developmental trajectory described by therapeutic orientation toward the client: “un- DIR is only a part of the model’s potential ap- conditional positive regard.” Affirming the indi- plicability. As part of the DIR assessment and vidual, without conditions, is the basis for Floor- intervention process, specific strengths of each time interactions. It establishes the conditions individual are identified through the develop- for the mutual engagement that is the doorway ment of an individualized processing profile to developmental growth. that addresses sensory processing (including The usage of “Floortime” or “developmentally auditory and visual-spatial processing, tactile appropriate spontaneous interaction” is the prac- reactivity, proprioceptive and kinesthetic func- tice of following the child’s lead and interests and tioning) as well as motor planning. This “pro- letting the child become “the director” of the in- file,” a description of an individual’s dynamic teractive “play” while the support therapist is the and ever-changing biological, personal, and “assistant director.” As a result, the process be- developmental characteristics, can profoundly comes person-centered because the interaction is contribute to an evolving understanding of the directed and controlled by the subject. Similarly, person’s development within each of the core the DIR method and Floortime allow us to follow
March/April 2011 Volume 14 Number 2 23 The NADD BULLETIN the interests and directions of adults with severe the reinforcing power –negative or positive – of delays. Some recent research (Surfas, 2004), sug- affecting the environment – and, especially, in- gests that this interactive process can support fluencing the behavior of others – cannot be un- adults and adolescents in developing additional derestimated. As a result, it may be posited that communicative skills. My own clinical experience many forms of problem behavior are simply the strongly suggests that this process, and the com- effect of being stuck with limited ability to con- municative behavior that it engenders, very often tinue to develop further sophistication and speci- seems to replace problem behaviors with more ficity in two-way communication. My experience functional affective communication. Because is that adults who gradually move away from Floortime was developed for children who can of- problem behavior are those who have also devel- ten be limited in their ability to use language and oped more finely attuned and functional ways abstract concepts, it can also be used with adults of affect-signaling interaction. In other words, who face limitations with symbols and language. these adults develop more specific and precise The “insight” and reflective capacities that have ways of expressing their needs, wants, desires, seemed to be unreachable for many people with and emotions rather than being “trapped” with severe cognitive challenges can be replaced by a more diffuse and global increase in excitation using preverbal interaction, or “affective signal- and activation that can neither be adequately ex- ing,” as a basis for what Siegal calls “shared sub- pressed nor discharged. jectivity” (Siegel, 2001). “Lying” and “stealing” are two other examples The six core functional-emotional capacities of “problem behavior.” Wieder and Greenspan can, in my experience, be used to guide develop- teach us that, during the early development of mentally-appropriate spontaneous interaction proficiency in “representational capacity and with people of all ages and degrees of disabling elaboration,” the child can often misinterpret conditions. These interactions, on an intense cause and effect in the world of abstract thought. and regular basis, appear able to engender During the development of this capacity, chil- news ways of replacing problem behavior. Self- dren may think that taking something makes it regulation, engagement, the need for two-way belong to them or that saying something is true communication, and long flowing chains of prob- makes it become true. How many adults with se- lem-solving interactions are part the preverbal vere challenges, whose behavior is called “steal- communication that are tracked by Greenspan ing” or “lying,” are really in a state of having a and Wieder’s developmental “road map” to the very primitive capacity for representational elab- first four of their identified six core functional oration? How many are simply at the early level emotional capacities. They are critical to under- of elaboration in their thinking and believe that standing some of the issues in communicative wishful changes can be made real simply by say- development that give rise to what are called ing or acting as if they are? “problem behaviors.” These are just a few examples of how an un- One example has to do with the capacity for derstanding of the development of functional- two-way communication – the third level in the emotional capacities can enhance our ability to DIR developmental progression of functional interpret and understand challenging behavior. emotional development. Greenspan posits that Functional behavioral assessment is a process this capacity comes in as the developing infant through which professionals try to determine begins to recognize that she can influence the whether a given behavior is maintained through behavior of others with her behavior. As a re- either a positive reinforcement paradigm (get- sult, the child continues to use affect-signaling ting a particular kind of event) or a negative behaviors as a way of getting significant others reinforcement paradigm (escaping a particular in her life to respond. Over time, for the typical- kind of event). Also, functional assessment can ly-developing child, these behaviors grow more sometimes identify the key environmental barri- sophisticated and specific to particular needs, ers that may predict the function of a behavior in wants, situations, and people. The child contin- various different settings. From these elements, ues to use and develop these affect-signaling be- the clinical practitioner must generate predic- haviors because of their effectiveness. However, tions about when the targeted behavior is most adults with severe delays can often show dis- likely to occur and when it is least likely to occur. ruptive, rigid responses that, typically, serve as These hypotheses guide the initial development blunt mechanisms for environmental change and of a plan for supporting positive behavior. In typ- rough two-way communication. For adults who ical practice, the foundation for both hypotheses have a drastically limited behavioral repertoire, about a behavior’s function(s) and predictions for
24 March/April 2011 Volume 14 Number 2 The NADD BULLETIN its occurrence are founded on a data-base con- positive reinforcement outcomes. sisting of “Antecedent-Behavior-Consequence” The hypothesis of this paper is that a clinical (A-B-C) recording and informational interviews understanding of a person’s functioning in the with those who know the person best as well as context of these functional emotional capaci- “observation” time spent with the person. How- ties can provide sophisticated guidance for the ever, financial constraints, systemic rigidity and functional assessment process for adults. A core the subjectivity of recorders are examples of com- assumption in this formulation is the inference mon elements that can markedly decrease the that adults with severe communicative chal- reliability and limit the functionality of these lenges will follow a progression similar to that kinds of data. Hypotheses and predictions about of the developing child in developing increased targeted behaviors must often be inferred from communicative competence. Similarly, an un- less than optimal data. derstanding of specific individual differences The DIR model of assessment and interven- in sensory integration and auditory and visual- tion can provide a means of increasing our abil- spatial processing can also inform and direct the ity to understand the limited data that is im- functional assessment process in order to lead mediately available. These data are provided to more sophisticated and accurate predictions through interaction – and the observation of of behavior. As part of the DIR assessment and interaction – with the person who displays intervention process, specific strengths of each the problem behavior. The practitioner who is individual are identified through the develop- skilled in identifying individual differences as ment of a sensory processing profile that ad- well as a person’s functional-emotional devel- dresses sensory reactivity, processing strengths opmental progress can often develop very work- and weaknesses, and motor planning. What is able hypotheses as the result of engaging in and inferred about a person’s auditory and visual- observing direct interaction with the person. spatial processing is also informative. By formu- Although interviews with staff and others who lating this “processing profile” for each individ- know that person best, as well as recorded “A- ual, we begin to develop the basis of an evolving B-C” data, must still buttress or refine these understanding of the individual’s development assessment observations, the DIR data-base and, most critically, the processing barriers to provided by direct interaction and the observa- that development. Understanding a person’s tion of interaction, can add a critically impor- unique processing profile also provides critical tant information source. Taken together, all of clues as to how to best interact with the indi- these data sources can provide the skilled prac- vidual in a way that will be emotionally satisfy- titioner with the relevant information needed to ing for both the person and the therapist. That formulate sophisticated hypotheses about the interaction is then elicited through the process function of problem behaviors as embedded in of “following the person’s lead” while introducing an experiential and communicative context. The small problems as a way of maintaining interest Greenspan-Wieder progression of functional, and of gradually increasing a person’s repertoire emotional, developmental capacities can often of response. For children, the process of engaged, assist with interpreting and understanding the spontaneous, developmentally appropriate inter- communicative behavior of adults with severe action is called “Floortime.” For adults, a similar delays. Operational indices of the six core func- approach can be called “Intentional Interaction” tional emotional levels have been outlined by or “Coregulation.” For both children and adults, Greenspan, Wieder and others (Greenspan & the important role of affect must be emphasized Wieder, 1998; Greenspan, DeGangi, & Wieder, in the progression up the developmental ladder. 2000). Using these indices, DIR® can allow us Affect, when experienced within the context of to maintain the evidence-based approach that is regulated, emotionally-attuned relationships behaviorism’s core strength. with other persons, forms the basis for helping Understanding these functional emotional ca- children and adults with developmental and pro- pacities can guide the community clinician in cessing problems to experience “coregulation” – identifying the circumstances under which the the process of learning to manage internal states person will use problem behavior to escape or through shared subjectivity and the contingent secure certain outcomes. An understanding of responses of the caring other. This coregulation these capacities can also often lead to accurate forms the basis for therapeutic effectiveness in predictions about when and why problem behav- the DIR model and in “Floortime” interventions. iors will be used to achieve either negative or The core technique for DIR intervention –
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Floortime – rests on the recognition that all person. Focus on securing as many plea- critical functional emotional communicative surable circles of communication (back learning occurs through the medium of primary and forth exchanges) as possible. Try relationships. The use of relationship-based ap- to find out how to approach the person proaches with adults and adolescents recognizes and what kinds of interaction the person the continuing power of primary relationships likes. across the life span to affect and influence in- 2. Spend 5-20 minutes with the person. dividual growth. The position described in this Focus on doing what they do. Take an paper asserts that DIR provides a mechanism interest in their interest. Try to get the through which we can not only positively affect “dialogue” going back and forth. This can what have been called “problem behaviors,” but be through asking questions or slapping that DIR also effectively embodies the principles hands. It can be through mirroring what of person-centered approaches in the positive the person does. It can be through mak- behavior support process. “Unconditional posi- ing vocalizations that the person makes. tive regard” and other affectively supportive re- The goal is to actively go into the person’s sponses are expressed through facial expression, world and enjoy their experience while body language and voice tones as well as the pro- getting the person to share, even a little, cess of following the person’s lead and “tuning with you. Try to embrace what is in the in” to that individual’s pace and emotional set. person’s mind. This reciprocal and mutually influenced inter- 3. Try to get a back and forth exchange go- personal exchange is, fundamentally, a coregu- ing. You open a circle of communication latory process. Coregulation implies that the by putting yourself into what the person communicative partner assumes responsibility is doing. They close that circle and open for the nature of the helping interaction but also a new circle by any action that responds plays the supportive role of following the sub- to your action. Your responsibility is to ject individual’s lead in interaction. It implies insert yourself into back and forth inter- a nurturant commingling of shared regulation action by always finding a way of closing through sharing attention with the individual. the person’s circle of communication and The reliance on spontaneous, developmentally opening yet another circle. appropriate interaction embodies the belief that 4. Enjoy the process. Take pleasure in your human beings, even those who have been highly interaction with the other person and try stigmatized and devalued, have the propensity to convey that sense of pleasure. Be fun- to continue their communicative development ny. Laugh. Experiment with being dra- in positive, healthy ways if there is adequate matic and overblown in your responses relationship-based support. or being quiet, slow and warm. Encour- Greenspan’s notion of “playful obstruction” can age a response. Keep it all in the spirit be taught in a way that is intended to reduce dys- of genuinely liking each other and your regulation and frustration. Staff training for DIR time together. intervention with adults is geared to providing 5. Try to keep the rhythm going. Wait for staff with a “conversational” understanding of the person’s response. Always respond, the individual in the following areas: yourself, even if it’s a silly response. Keep 1. The person’s sensory processing profile: the flow going. the subjective experience of having sen- 6. Work in challenges to make the interac- sory integration, auditory and visual spa- tion longer and more complicated – but tial processing, and motor planning chal- keep up the connection and keep it enjoy- lenges; and able for you both. 2. The person’s current capacities in each of 7. Do this five or more times during the the six core functional emotional capaci- time while you’re with the person – when ties through teaching examples of the you feel the person might like playful in- person’s behavior in specific situations. teraction. Try to get the time longer dur- Adapted Floortime, relabeled as “Coregulation” ing each interaction session. Your goal is or “Intentional Interaction” for adults, is taught to have sessions that go continuously for using the following general approach: 15-30 minutes. Directions for “Coregulation” 8. Do as many sessions as possible for as 1. Experiment with interaction with the long as possible. Look for natural oppor-
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tunities to harness a person’s interests ings. During this period it was hypothesized that and wants in order to extend circles of Henry was hyperreactive to many auditory tones, communication. especially in the higher frequencies, as well as During their sessions with individuals, staff visually hyperreactive, especially to movement. persons are encouraged to focus on flowing inter- He also seemed very tactilely defensive. Also, action and shared enjoyment of the experiences. Henry appeared hyporeactive in proprioception They are also encouraged to continue interaction and balance. In terms of his functional-emotional as long as possible while the person appears to capacities, Henry had distinct challenges in self- be enjoying the interaction. They are told to quit regulation but a relative strength in his capac- interacting if the person appears to be becoming ity for engagement. Henry had developed some dysregulated or signals, in any way, an overall two-way communication and he, reportedly, had dislike of the experience. Role-playing is often a a history of using some 20 signs as well as an un- critical part of the process of teaching these in- specified number of picture cards to identify his teraction techniques to staff. wants to others. Yet, his capacity for a sustained, What follows are two brief case descriptions of continuous flow of interaction through shared individuals with severe developmental delays. preverbal, problem-solving was quite constrict- Again, there have been numerous occasions in ed. Henry’s ability to connect ideas also seemed which I have seen this adapted Floortime or “co- quite under-developed. regulation” have a dramatic effect on extreme During the second four week period, staff were behavior. Although these two examples involve taught – through informal lecture and discussion addressing physical aggression toward other peo- – the principles of Floortime including follow- ple, I have seen similar efficacy in working with ing the person’s lead, tuning in to the person’s a broad range of “problem behaviors” including pace and emotional set, ensuring reciprocity in self-abusive behavior, food-stealing, and inap- interaction, extending circles of communication propriate clothing removal. Both of the interven- and “playful obstruction.” A major teaching tool tions described below were implemented by staff in each of these sessions was the use of role-play- who worked with the person in community resi- ing. One staff person would role-play Henry or a dential settings. Data were taken from the be- housemate while the other staff tried to build on havioral recording systems used by the person’s the person’s typical behavior to create sustained, supporting agency. flowing interaction. Other staff would observe, comment, and make suggestions. After the com- Case I: Henry Henry had a history of aggressive and destruc- pletion of the second set of sessions, staff were tive behavior that had resulted in the dissolu- encouraged to begin adapted Floortime with tion of several living situations since he was first Henry as much of the time as possible. placed out-of-home at about age eighteen. He had a history of attacking other people – caregivers Outcomes as well as companions – and breaking items such During the month prior to intervention there as furniture and windows. Prior to intervention, were 13 episodes of aggression coupled with agency data showed an average of 9 episodes per property destruction. However, during the month that tended to last between 20 minutes month immediately after intervention, there and an hour and included both attacks on other were only three episodes of aggressive or de- people and significant property damage. structive behavior. An increase to 8 incidents occurred during the second month after inter- Intervention Process vention, then the frequency of these episodes During an eight-week period prior to adapted dropped steadily to zero per month over the next Floortime intervention, Henry’s core team met consecutive three-month period. The frequency with me once each week for a two-hour period. of aggressive behavior remained below two per During this time, I also observed and interacted month for the last nine months of the data peri- with Henry in his home setting. A DIR assess- od. Overall, the monthly frequency of incidents ment – seeking to identify Henry’s strengths and dropped from an average of 9 per month to an weaknesses in terms of his individual differences average of 2.2 incidents per month after the in- as well as each of the core functional emotional tervention across the 14 months that Henry was capacities – was developed as part of group train- followed. (See figure 1.) The following graph il- ing and discussion during the first four meet- lustrates this timeline.
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Figure 1. Henry – 22 Month Aggression Data
Mirroring Henry’s behavior in a jocular, friend- Case II: Minerva ly way was one of the first ways the involved staff Minerva was 22 years old when the assessment found to create interaction. Henry began to ex- process began. She had lived with her natural periment with various forms of nonverbal com- family until the age of 12 when her frequent run- munication in order to watch staff mirror him. ning away behavior, as well as other destructive Then he began, intermittently, to mirror staff be- actions, caused her to be placed with a foster fam- havior in the same playful way. Also, Henry loved ily. She did not show any significant history of ag- to eat and had no weight problem. While sharing gression as a child. The foster setting proved to be preparation for a range of foods, staff would con- successful for Minerva, and she lived there until sistently try to give Henry the lead in the process she was 18. At that time she had to move out of the by pretending not to remember steps in prepara- child-licensed foster home. What followed was a tion or needed items. (This is an example of play- succession of “placements.” The residential agency ful obstruction – a core principle of Floortime.) where she lived in September, 2002, when the as- Within months Henry began to consistently an- sessment period began, was her fourth such place- swer simple questions using gestures, sign, and/ ment. The functional assessment process was fo- or monosyllabic speech. cused on Minerva’s aggression toward other people It should be noted that a critical element in Hen- that was, by this time, a critical problem. Just as ry’s long-term success may have been staff consis- a written behavioral assessment was completed, tency and ongoing staff training as new people Minerva’s aggression became so pronounced that were employed to work with him. Throughout the she was placed in respite at the state institution fourteen-month period, staff trainings were held (beginning 9/11/02) for a period of up to 30 days. at least one time per month – more commonly, two Police intervention was required to transport her. to three times per month. These meeting focused Minerva returned home on October 10, 2002. on using adapted Floortime with Henry as well as his housemates. Discussion, role-play, group feed- Intervention Process back, and time with Henry and his housemates Minerva’s functional assessment was com- were all part of these trainings. pleted on 9/4/02 and submitted to the program
28 March/April 2011 Volume 14 Number 2 The NADD BULLETIN administrators. However, training on the conclu- in terms of visual/spatial processing… sions and hypotheses of the functional assess- Conversely, staff and her mother report- ment, as well as recommended coregulatory in- ed that they believe that Minerva under- teraction with Minerva, did not begin until the stands most of what is said to her. This first week of October – just prior to her return probably suggests a relative strength from the respite situation. At that time, a two- in the area of auditory processing…Mi- hour training was provided for each of the staff nerva’s motor planning is an unknown at who worked regularly with Minerva. This train- this point. Continued intervention and ing addressed her individual differences in sen- evaluation should shed light on this very sory and auditory processing. The potential of us- critical component of Minerva’s sensory ing individual differences as a critical part of the profile. functional assessment process is illustrated in In addition, her strengths and constrictions the following excerpts from Minerva’s DIR-based in each of the six core functional-emotional ca- functional behavioral evaluation: pacities were addressed in that report and briefly It appears that Minerva is extremely covered in the two-hour staff training session. hypersensitive through sight. Her mom Excerpts from that functional assessment report reports that she was always very sensi- are provided below: tive to bright light and movement, how- Calm and Interest in the World – This ever, she has always been attracted to capacity is the one in which Minerva ap- bright lights in controlled scenario’s such pears to have the most innate challenges. as Christmas decorations and toys with Her visual and tactile (hyper)sensitivi- lights on them. This apparent contradic- ties may well conflict with her under-sen- tion also illustrates a typical pattern for sitivities in balance and body awareness sensory hypersensitivities – stimulation causing remarkable difficulty in allowing which can be very aversive when imposed Minerva to attain homeostasis (a combi- from outside can also be quite reinforcing nation of both calm and external focus/ when people are able to control the dose interest)… and duration of that stimulation…Staff Intimacy or Engagement – Minerva has report that Minerva has some sound sen- a history of some strong and, apparently, sitivities such as to the ring of the door- successful emotional bonds… bell at her home. However, it appears Two-Way Communication – This is the that tactile hypersensitivity is also a developmental stage at which a person critical area for Minerva…This picture of learns that they can affect the behavior extreme sensitivity to light, movement, of others through their behaviors. Miner- sound, action, and touch is compounded va seems to have some strengths in this by the likelihood that Minerva is ex- area. Guiding or pushing people out of tremely under-reactive in two near sens- her apartment, requesting food by lead- es – proprioception and balance. Proprio- ing staff to the refrigerator, and opening ception is that part of our nervous system rounds of “pillow toss” are all examples of which helps us to know where our bodies two-way communication. However, Mi- are in space and to perceive pressure and nerva has an obviously limited repertoire weight. Balance, of course, is the ability in this area. to know where we are at all times in rela- Complex Communication – ... This ca- tion to gravity…Minerva’s behavior as a pacity is characterized by the ability to child was like children who are seeking sustain long, rapid and complex back and constant stimulation through movement forth communication. When the capacity in order to stimulate the proprioceptive first comes in for infants it is character- and vestibular channels…it is difficult to ized by preverbal reciprocal, rhythmic gauge her auditory and visual processing exchanges between the infant and care- capabilities. It should be noted, however, giver. These usually consist of vocaliza- that when catching a pillow thrown over tions, warm voice intonations, multiple her head, Minerva is not able to exercise subtle reciprocal facial expressions, ges- eye convergence to be able to track the tures and action behavior. In typical de- pillow through space past a certain point. velopment, this capacity flows out of the This strongly suggests serious challenges combination of the three prior capacities.
March/April 2011 Volume 14 Number 2 29 The NADD BULLETIN
If an infant can focus on the caregiver, that month. During the first 11 days of Septem- a two-way infatuation or love experience ber, Minerva attacked others on 6 out of the 11 usually automatically develops. Out of days prior to her being institutionalized for re- that experience grows the desire for the spite care. She returned home on October 10th at presence of the other and the learning which time intervention was begun. During the that we can affect the behavior of the following 21 days in October, Minerva only at- other person. This naturally grows into tacked others on four days – or for an approxi- that complex, rich inventory of back and mate 19% of the days of that month. The follow- forth dialogue experiences that we char- ing graph shows the frequency of Minerva’s ag- acterize as “relationship”. gression over the next five months. (Figure 2.) My hypothesis is that Minerva is so challenged by her sensory and processing Minerva – Aggression* Toward Others system that she was never able to fully (*Hitting, biting, kicking, scratching and pushing) negotiate the first capacity for extended periods of time – being calm while sus- taining engagement with the world. As a result, even though she bonded as well as she could with caregivers, she was never able to sustain the focus and engagement to overcome severe restrictions in the fol- lowing capacities (that build upon self- regulation) – engagement, two-way com- $XJXVW munication and complex communication. 2FWREHU -DQXDU\ )HEUXDU\ 1RYHPEHU'HFHPEHU Minerva demonstrates only very slight 6HSWHPEHU capabilities in the fifth and sixth func- &RUHJXODWLRQEHJDQ tional capacities, using symbols and building bridges between ideas. A more 0RQWKO\SHUFHQWDJHRIGD\VLQZKLFKRQHRUPRUHLQFLGHQWV complete evaluation of her current ca- RIDJJUHVVLYHEHKDYLRURFFXUHG pacity and potential in these areas will Figure 2. Minerva – Aggression Toward Others require more extended interaction and observation. Minerva also enjoyed a range of food prefer- Finally, as part of the two-hour initial training, ences that staff would help her prepare. As with staff did some role-playing on ways of extending Henry, violating expectations and appearing not and building more complex interaction with Mi- to remember how to do something was used to nerva. assist Minerva in doing more of the food prepa- Prior to Minerva’s return home, an “interac- ration and to increase her intentionality. Also, tion kit” was created that included edible lotions, Minerva loved tossing balls, beanbags, or other various kinds of tactile balls for playing catch, small items. Staff used this as a way of beginning and several different kinds of sewing material, interaction then experimented with tossing the reflecting a broad range of different kinds of ball in various places and using Minerva’s habit touch sensation. Staff used this kit as a basis for of throwing the ball in a direction away from her attempting to create interaction with Minerva as partner to elicit choices such as “should I go get often as their duties would allow. For the next five it or should you?” This also served as a way of months, her three core staff – two of whom spent eliciting a yes/no choice from Minerva. Despite 40 hours a week with Minerva – received consul- the diagnosis of severe autism and no history of tation and coaching on interactive techniques at having followed or used finger-pointing, Minerva least monthly. During this time frame, one staff began to spontaneously point at the ball on the person estimated that his intentional interaction floor in an imperious gesture, telling the staff with Minerva occurred at least 6 times per day person to get the ball. for periods ranging between 10 and 30 minutes. Implications and Conclusions Outcomes Both of these individuals seemed to show sig- During the month of August, 2002, Minerva at- nificant improvement in their production of tar- tacked other people on 9 out of 31 days in the geted problem behaviors as the result of adapted month or for approximately 29% of the days in Floortime interventions. In the case of Minerva,
30 March/April 2011 Volume 14 Number 2 The NADD BULLETIN it is difficult to sort out the impact of medica- indeed warranted. Such research should include tion changes that were made during her brief better controls of significant life variables, such institutionalization from the impact of adapted as medication, and more careful tracking of the Floortime. Variables of this kind are difficult to amount of time spent in intentional interaction control in community services. However, it is cer- as well as better tracking of the relative skills tain that pronounced improvements in both the in “adult Floortime” used by the particular staff frequency and severity of aggression did occur. conducting the intervention. Two factors suggest that the intentional interac- tion may have been a significant contributor to References the reduction in problem behaviors. One factor is Greenspan, S.I. (1992). Infancy and early child- the steady decline in aggression that continued hood: The practice of clinical assessment and after Minerva’s return home. Despite the medi- intervention with emotional developmental cation changes, Minerva returned home with a challenges. Madison, CT: International Uni- continuing habit of attacking others. The second versities Press, Inc. factor that suggests a strong impact from the in- Greenspan, S.I., DeGangi, G. & Wieder, S. (2000). teraction was the fact that Minerva’s main staff The functional emotional assessment scale person – who did a significant part of the co-reg- for infancy and early childhood. Bethesda, ulatory interaction with her – had to leave em- MD: Interdisciplinary Council on Disorders ployment during March of 2002. In April, her ag- of Relating and Communicating. gression increased to the same level it had been Greenspan, S.I. & Mann H. (2001) Adults and in October1, the first month of intervention, and adolescents with special needs: The devel- only began to decrease again as the replacement opmental, individual-differences, relation- staff was also trained in the adapted Floortime ship-based approach to intervention. In interaction. (This is a naturalistic equivalent of The clinical practice guidelines (pp. 639- an A-B-A research design, where the “treatment” 658). Bethesda, MD: The Interdisciplinary (A) occurs, is removed (B) and is reinstated (A). Council on Developmental and Learning When the target behavior is reduced under treat- Disorders. ment conditions, and recurs when the treatment Greenspan, S.I. & Wieder, S. (1998). The child with is stopped (B), more confidence can be given to special needs: Encouraging intellectual and the treatment’s efficacy.) emotional growth. Cambridge, MA: Perseus The picture is less equivocal in the case of Publishing. Henry. He maintained at least two core staff Maslow, A. (1968). Toward a psychology of being. over the next fourteen months and, although New York: Van Nostrand Reinhold the staff person to whom he was closest left just Rogers, C. (1961). On becoming a person. Boston: five months after intervention began, Henry’s Houghton Mifflin Company. aggression remained low as the two remaining Siegel, D. (2001). Toward an interpersonal neu- core staff continued the interaction on a regular robiology of the developing mind: Attach- basis. During the follow-up period, Henry’s ag- ment, relationships, “mindsight” and neural gression remained under control despite a range development. Infant Mental Health Journal of dysregulating factors. After about a year, he 22 (1-2) 67-94. moved with all of his staff and housemates. An Surfas, Sean (2004). The use of developmental, additional roommate moved into the home and individual difference, relationship-based there was turnover in virtually all staff except for “DIR” therapy with older students with the core two who were already mentioned. The severe developmental disabilities including consistent element was ongoing training in the autism. The Journal of Developmental and adapted Floortime techniques. Learning Disorders, 8, 65-76. These data, as well as my clinical experience with a range of other people and other problem For further information, please contact behaviors, suggest that adapted Floortime in- Gene Christian, M.S., C.R.C. teraction, maintained in a sufficient dosage over 707 W. Seventh Ave., Suite 220 time, may be a promising intervention for reduc- Spokane, Washington 99204 ing aggressive behavior in adults with severe and e-mail: [email protected] profound cognitive delays. Further research is 1 Minerva was aggressive on 6 out of 30 days in April (20%)
March/April 2011 Volume 14 Number 2 31 The NADD BULLETIN
Neuroscience Reviews Is There More Bipolar Disorder Than Meets the Eye Jarrett Barnhill, M.D., DFAPA, FAACAP
Bipolar Disorder. (2009). In J.I. Hunt & D.P. a high degree of certainty. For most, the forces Dickstein (Eds). Child and Adolescent Psy- leading to BD are in play long before its clini- chiatric Clinics of North America, 18(2). cal onset. In this sense the emergence of BD is one stage in a developmental process that is con- This volume updates our understanding of the stantly modified by life events, social experienc- genetics and bio-psycho-sociology of Prepubertal es, and various modes of treatment. Bipolar Disorder (PBD). This developmental ap- So let us begin with these basic findings: proach to BD can also enhance our understand- ϭ͘ *HQHWLFV %'GLVSOD\VDFRPSOH[SDWWHUQRILQ ing of BD in individuals with IDD. The next sev- KHULWDQFH&XUUHQWUHVHDUFKVXJJHVWVWKDWUDWKHU eral articles will take up this challenge. WKDQ VLPSOH 0HQGHOLDQ JHQHWLFV %' LQYROYHV Currently we rely on a descriptive model of BD PRGLILFDWLRQ RI PXOWLSOH JHQH FRPSRQHQWV H (Diagnostic Manual- Intellectual Disability) that J VLQJOH QXFOHRWLGH SRO\PRUSKLVPV RU 613V is based on adapted DSM-IV-TR criteria. This VSUHDGDFURVVVHYHUHJHQHJURXSLQJV 32 March/April 2011 Volume 14 Number 2 The NADD BULLETIN EHKDYLRUV UHJXODWLRQ RI EHKDYLRUDO LQKLELWLRQ Ϯ͘ +RZGRZHGHDOZLWKWKHKLJKUDWHVRIQHXUR QHWZRUNV H[HFXWLYH QHWZRUNV DQG VRFLDO EH SV\FKLDWULFFRPRUELGLW\DVVRFLDWHGZLWKFKLOG KDYLRUV%'LQYROYHVDFRRUGLQDWLRQRIWKHVH KRRGRQVHW%'" V\VWHPVDQGPD\KHOSGLIIHUHQWLDWHWKHVHIURP ϯ͘ +RZGRZHLQWHJUDWHWKHGHYHORSPHQWDOFKDQJ PRRGGLVWXUEDQFHVRULPSXOVHG\VFRQWUROVHHQ LQRWKHUEUDLQGLVRUGHUV HVDVVRFLDWHGZLWKWKHPDQ\VXEW\SHVRI,'' Each of these phenomena follows a develop- ZLWKWKHHYROXWLRQRI%'DVDV\QGURPH" mental trajectory that continues throughout the ϰ͘ +RZGRHV%'DIIHFWEUDLQGHYHORSPHQWLQFKLO life cycle. The developmental course of BD is in- GUHQZLWK,''" tertwined with that of the developmental trajec- ϱ͘ +RZGRWKHVHGHYHORSPHQWDOLVVXHVDIIHFW%' tory of IDD. This mosaic of interactions raises LQDGXOWVZLWK,''" several questions: ϭ͘ +RZ GR ZH LQWHJUDWH QRQF\FOLFDO LUULWDELOLW\ In future articles we will use the work of Dick- H[SORVLYHLPSXOVLYHDJJUHVVLRQDQGLPSXOVLY stein and others to make a stab at answering LW\LQWRRXUVFKHPDIRU%'" these questions. 863XEOLF3ROLF\8SGDWH The United States v the State of Georgia 2010 Olmstead Settlement Agreement: U.S. Public Policy Implications Joan B. Beasley, Ph.D., Associate Research Professor, University of New Hampshire, Institute on Disability, UCED In 1999, the United States Supreme Court to prevent institutional care. It clearly states ruled that the Americans with Disabilities Act that the responsibility of the states to provide requires people with disabilities receive care in for adequate community infrastructure is part of the most integrated setting possible. This led to the mandate for equal protection under the law. the consideration of a major change in the prac- The Georgia decision indicates that the state is tices of the State of Georgia, where what is now clearly responsible for quality of services offered called the “Olmstead” decision was made. The to prevent the need for congregate care or the precedent-setting decision affected policies and use of congregate care due to inadequate alterna- practices throughout the United States. Unfortu- tives. Money is not a reasonable excuse for this to nately, progress in Georgia was found to be lag- not be in place. ging at best. In September of 2010, after many The decision states that “The expansion of com- months of investigation and deliberation, the munity opportunities is critical to protecting the most recent Olmstead settlement agreement was civil rights of individuals under Olmstead.” The signed by the Federal Government and the State findings indicated that the lack of community re- of Georgia to comply with the Americans with sources undermined Georgia’s ability to comply Disabilities Act. with Olmstead. This Public Policy Update will highlight some Following are some points to consider based on of the most significant elements in the decision this landmark settlement. for people with intellectual disabilities and men- ͳǤ (DFK6WDWHPXVWEHDFFRXQWDEOHWRLQVXUHTXDO tal health needs. However it is recommended LW\PDQDJHPHQWRIDOOVHUYLFHVQHHGVWRUHYLHZ that stakeholders study the details, due to the GDWDDVVHVVVHUYLFHVDQGHQIRUFHVWDQGDUGV great significance of this important settlement. ʹǤ 7KH *HRUJLD GHFLVLRQ FLWHG VSHFLILF PRGHOV While the focus of the first Olmstead decision HYLGHQFHEDVHGSUDFWLFHVIRXQGWREHHIIHFWLYH was on active treatment in the institution and LQWKHFRPPXQLW\IRU630, $&7&63&67 discharge planning, and this is still required, the FDVHPDQDJHPHQWHWF DQGLQIUDVWUXFWXUHWKDW most recent interpretation broadened the focus LV VXSSRUWHG E\ PRGHOV OLNH 67$57 $G March/April 2011 Volume 14 Number 2 33 The NADD BULLETIN HTXDWHUHVRXUFHVDUHHPSKDVL]HGVRWKDWLWUH ͳͳǤ (PSKDVL]HVLQFUHDVHGVXSSRUWVWRIDPLOLHVZKR TXLUHVH[SDQVLRQRIVRPHVHUYLFHVWRPHHWWKH PHHW HOLJLELOLW\ EXW ZKR PD\ QRW UHFHLYH DQ\ QHHG RI WKH SRSXODWLRQ ZKLOH WKHUH DUH VRPH RWKHUZDLYHUVHUYLFHV $&7VHUYLFHVIRUH[DPSOHPRUHDUHUHTXLUHG The 2010 Georgia Olmstead Agreement is ͵Ǥ 7KHGHFLVLRQUHTXLUHVDSROLF\ZKHUHWKHUHZLOO important and must be considered by all policy VRRQEHQRPRUHDGPLVVLRQVIRUSHRSOHZLWK,' makers as they plan ahead. During these times of LQVWDWHKRVSLWDOVDQGIHZHUIRUSHRSOHZLWK63 very limited resources, it is essential that states 0,,WDFNQRZOHGJHVWKDWWKLVFDQQRWEHDFFRP plan carefully, assess how to improve upon their SOLVKHGZLWKRXWDUHPHG\LQWKHFRPPXQLW\ services, and focus on the development of an ef- ͶǤ 7KHGHFLVLRQFOHDUO\SURKLELWVWKHWUDQVIHUIURP RQHLQVWLWXWLRQWRDQRWKHULQFOXGLQJDQXUVLQJ fective community-based system of care. There KRPH XQOHVV WKH SHUVRQ QHHGV WKHVH VHUYLFHV are some locations where this is already taking EDVHGRQFOHDUFULWHULD place. An opportunity to share information, fund- ͷǤ $FWLYHWUHDWPHQWLVVWLOOHVVHQWLDOZKLOHLQSD ing to assess outcomes through research, and fo- WLHQWRULQ,'IDFLOLW\WRLQFOXGHFRQWLQXRXVORRN rums to help states problem solve and meet the DWGLVFKDUJHFULWHULD challenges they face is required. Ǥ 3HRSOH VKRXOG QRW EH DGPLWWHG WR LQVWLWXWLRQV For further information, contact Dr. Beasley at GXHWRODFNRIUHVRXUFHVLQWKHFRPPXQLW\ZKHQ [email protected]. WKHUHLVHYLGHQFHWKDWWKLVVKRXOGEHDYDLODEOH Ǥ 5HSRUWLQJDQGGDWDFROOHFWLRQDUHHVVHQWLDO ͺǤ 7KH2OPVWHDGSODQPXVWKDYHUHDVRQDEOHWLPH The “U.S. Public Policy Update” is an ongoing OLQHVZLWKUHVRXUFHVWRPHHWQHHGV column in The NADD Bulletin. We welcome your ͻǤ $FXWHFULVLVVHUYLFHVVKRXOGEHSURYLGHGLQWKH comments and submissions for this column. To FRPPXQLW\EDVHGVHWWLQJV learn more or to contribute to this column you ͳͲǤ /DUJHFRQJUHJDWHIDFLOLWLHVVKRXOGSOD\DYHU\ may contact Joan Beasley, Editor of the U.S. Pub- VSHFLILFDQGOLPLWHGUROH lic Policy Update, at [email protected]. Psychotherapy for Individuals with Intellectual Disability (GLWHGE\ 5REHUW-)OHWFKHU'6:$&6: This book provides the reader with insightful and useful ways to provide psychotherapy treatment for individuals who have intellectual disability (ID). It brings together all three modalities (individual, couple, and group), and a variety of theoretical models and techniques are discussed. The first section, Individual Therapy, offers a variety of approaches and techniques including dialectical behavioral therapy, positive psychology, mindfulness-based practice, and ³7KHPRVWFRPSUHKHQVLYHGLVFXVVLRQ relaxation training. Also included in this section are chapters on RISV\FKRWKHUDSLHVZLWKWKLV specialty populations including victims of abuse, people who SRSXODWLRQHYHUSXEOLVKHG´ have Autism Spectrum Disorder, and people in mourning. The 6WHYHQ5HLVV3K' second section is a chapter on group therapy addressing trauma issues. The third section is on family and couple therapy. The fourth section covers ³7+(0267&2035(+(16,9(',6&866,212)36<&+27+(5$3,(6 :,7+7+,63238/$7,21(9(538%/,6+('´ IURPWKH)RUHZRUGE\6WHYHQ5HLVV3K' Psychotherapy for Individuals with Intellectual Disability chapters on research, ethics, and training. The individual authors are respected au- Psychotherapy for Individuals with Intellectual Disability Psychotherapy Edited by thorities in the field of providing psychotherapy treatment for persons with ID and all Robert J. Fletcher, DSW, ACSW for 7KLV ERRN SURYLGHV WKH UHDGHU ZLWK LQVLJKWIXO DQG XVHIXO ZD\V WR SURYLGH SV\FKRWKHUDS\WUHDWPHQWIRULQGLYLGXDOVZKRKDYHLQWHOOHFWXDOGLVDELOLW\ ,' ,W have contributed to the professional literature. EULQJVWRJHWKHUDOOWKUHHPRGDOLWLHV LQGLYLGXDOFRXSOHDQGJURXS DQGDYDULHW\ RIWKHRUHWLFDOPRGHOVDQGWHFKQLTXHVDUHGLVFXVVHG7KH¿UVWVHFWLRQ,QGLYLGXDO Individuals 7KHUDS\ RIIHUV D YDULHW\ RI DSSURDFKHV DQG WHFKQLTXHV LQFOXGLQJ GLDOHFWLFDO EHKDYLRUDOWKHUDS\SRVLWLYHSV\FKRORJ\PLQGIXOQHVVEDVHGSUDFWLFHDQGUHOD[DWLRQ WUDLQLQJ $OVR LQFOXGHG LQ WKLV VHFWLRQ DUH FKDSWHUV RQ VSHFLDOW\ SRSXODWLRQV with LQFOXGLQJYLFWLPVRIDEXVHSHRSOHZKRKDYH$XWLVP6SHFWUXP'LVRUGHUDQGSHRSOH LQPRXUQLQJ7KHVHFRQGVHFWLRQLVDFKDSWHURQJURXSWKHUDS\DGGUHVVLQJWUDXPD 7KLVERRNLVDPDMRUFRQWULEXWLRQWRWKHHIIRUWWRPDNHSV\FKRWKHUDS\DYDLODEOH LVVXHV7KHWKLUGVHFWLRQLVRQIDPLO\DQGFRXSOHWKHUDS\7KHIRXUWKVHFWLRQFRYHUV Intellectual Disability FKDSWHUV RQ UHVHDUFK HWKLFV DQG WUDLQLQJ 7KH LQGLYLGXDO DXWKRUV DUH UHVSHFWHG DXWKRULWLHVLQWKH¿HOGRISURYLGLQJSV\FKRWKHUDS\WUHDWPHQWIRUSHUVRQVZLWK,' DQGDOOKDYHFRQWULEXWHGWRWKHSURIHVVLRQDOOLWHUDWXUH WRLQGLYLGXDOVZKRKDYH,'DQGVKRXOGVHUYHWRIXUWKHUVWLPXODWHLQWHUHVWLQWKH 7KLVERRNLVDPDMRUFRQWULEXWLRQWRWKHHIIRUWWRPDNHSV\FKRWKHUDS\DYDLODEOH WRLQGLYLGXDOVZKRKDYH,'DQGVKRXOGVHUYHWRIXUWKHUVWLPXODWHLQWHUHVWLQWKH SURYLVLRQRISV\FKRWKHUDS\WUHDWPHQWIRULQGLYLGXDOVZKRKDYH,'FRRFFXUULQJ ZLWKVLJQL¿FDQWPHQWDOKHDOWKSUREOHPV SURYLVLRQRISV\FKRWKHUDS\WUHDWPHQWIRULQGLYLGXDOVZKRKDYH,'FRRFFXUULQJ Edited by J. Robert Fletcher, DSW, ACSW About the Editor 'U5REHUW-)OHWFKHULVWKH)RXQGHUDQG&KLHI([HFXWLYH2I¿FHURI1$'' +HKDVHDUQHGDQLQWHUQDWLRQDOUHFRJQLWLRQDVDQH[SHUWLQSURYLGLQJVHUYLFHVIRU LQGLYLGXDOVZKRKDYHDQLQWHOOHFWXDOGLVDELOLW\FRRFFXUULQJZLWKVLJQL¿FDQWPHQWDO ZLWKVLJQL¿FDQWPHQWDOKHDOWKSUREOHPV KHDOWKQHHGV'U)OHWFKHUKDVRYHU\HDUVRIFOLQLFDOH[SHULHQFHLQSURYLGLQJ LQGLYLGXDO JURXS DQG IDPLO\ SV\FKRWKHUDS\ IRU SHUVRQV ZLWK D GXDO GLDJQRVLV +H KDV OHFWXUHG DFURVV 1RUWK$PHULFD DV ZHOO DV LQ (XURSH FRQFHUQLQJ PHQWDO Edited by KHDOWKDVSHFWVLQSHUVRQVZLWKLQWHOOHFWXDOGLVDELOLWLHV'U)OHWFKHULVWKHDXWKRURU HGLWRURIVHYHUDOERRNVLQWKH¿HOGLQFOXGLQJ7KHUDS\$SSURDFKHVIRU3HUVRQVZLWK Robert J. Fletcher, DSW, ACSW 0HQWDO5HWDUGDWLRQDQGLVWKH&KLHI(GLWRURIWKH'LDJQRVWLF0DQXDO±,QWHOOHFWXDO 'LVDELOLW\ '0,' 3ULFH 1$''0HPEHU Ɣ1RQ0HPEHU ISBN: 978-1-57256-128-1 Foreword by Steven Reiss, Ph.D. CT 11-051BCT 9LVLWWKH1$''2QOLQH6WRUHDWZZZWKHQDGGRUJWRRUGHU 34 March/April 2011 Volume 14 Number 2 The NADD BULLETIN DSP Interests and Concerns Practical Support Strategies for Day-to-Day Interaction: Schizophrenia .DWKOHHQ2OVRQ3K'.DQVDV8QLYHUVLW\&HQWHURQ'HYHORSPHQWDO'LVDELOLWLHV Direct Support Professionals working with items, provide them with a safe place to individuals with a dual diagnosis often support store items. people with schizophrenia. The symptoms of Encourage the individual to sit where he or schizophrenia may vary from day-to-day or from she can hear others. month-to-month. Treatment decisions are made Simplify the environment. by the individual and their team and may include · Individuals with schizophrenia may be more medications, environmental support, and other sensitive to visual and auditory stimuli. Re- therapies. Although each individual is different, duce these as possible. the following practical suggestions for day-to-day · Minimize clutter to minimize distractions. interaction have been effective in helping the in- · Avoid shiny surfaces to minimize visual hal- dividual make sense of the environment and to lucinations. sort out reality from psychosis. · Provide good lighting. When the individual talks about hallucina- When hallucinations, delusions, or disorga- tions (hearing, seeing, smelling, tasting or feel- nized thinking limit the ability to focus on a con- ing things that are not there) or delusions (firmly versation or activity: held false beliefs): · Keep conversation or directions simple and fo- · Be neutral and non-judgmental. Never make cused. fun of hallucinations or delusions. · Get the individual’s attention before speaking. · If the individual is frightened or concerned · Speak in a soft, calm, reassuring voice. about a hallucination respond calmly and · Be simple and truthful. truthfully. To “I see rats in the shower” you · Present information in small bits. Be brief. might respond by saying “I know you think · Repeat as necessary. you see rats, but I don’t see any. Your brain is · Allow time for the person to comprehend and playing tricks on you.” respond to what you are saying. · Encourage the individual to talk privately, · Ask questions to gauge comprehension and rather than publicly, about delusions or hal- thought processes. lucinations. · Only one person should speak at a time. · Stay calm. To remain focused and get things done at work · Do not give undo attention for talking about or home: hallucinations or delusions. You may uninten- · Assign meaningful tasks. tionally reinforce such talk. If possible, ignore · Establish a set routine to help the person un- statements about hallucinations or delusions. derstand what is going on. · Do not try to convince the individual that hal- · Assign repetitive work tasks. They may be lucinations or delusions are unreal. Arguing easier than those requiring continual change. will do no good. · Break tasks into small components. · If asked if you experience these same halluci- · Give directions simply, giving one step at a nations or delusions be truthful and say “no.” time. Minimize the impact of delusions by encour- · Be consistent in training. aging the individual to control the environment. · Provide visual and verbal prompts. This will vary for individuals. Some examples · Use graphic charts as reminders. are: · Provide frequent prompts and reinforcement. If they believe food is poisoned, encour- · Minimize clutter. age them to prepare own food. · Have person think aloud to monitor thought If they believe people are looking in the processes. windows, remove curtains. · Narrow down choices when the individual has If they believe others are talking about difficulty in making decisions. them, involve them in conversation. · Have individual write concerns in a journal If they believe others are stealing for discussion as appropriate. March/April 2011 Volume 14 Number 2 35 The NADD BULLETIN Stress and tension make symptoms worse, · Talk in terms of behaviors, not personality. thus minimize stress or teach coping strategies: Say, “ You are upset. Let’s talk about it,” not · Establish a predictable way to handle reoccur- “You’re acting like a child.” ring concerns. · Allow personal space. · Help individual learn alternatives when over · Avoid continuous eye contact. stimulated. · Don’t challenge the individual into acting out. · Allow person to withdraw and be alone when Other: he or she is overwhelmed by stimuli or upset. · Encourage the individual to take medications · Reinforce positive performance and behaviors. regularly. · Teach skills to handle situations in a socially · Meet with the psychiatrist to discuss alterna- appropriate manner. tives when noncompliance with medication is · Teach person to plan ahead. related to side effects. Make expectations clear. Assure that expecta- · Minimize consumption of alcohol and avoid tions are realistic. · use of illicit drugs. Set limits on how much abnormal behavior is · Minimize cigarette use (or at least make use acceptable. · consistent). In a crisis: · Remain calm. · Encourage sound and regular eating habits Decrease distractions (e.g., turn off TV, CD and exercise. · player). · Build a support network. · Talk in turns, one at a time. For further information, contact Dr. Olson at · Speak in a slow, clear, normal voice. Don’t [email protected]. shout. · Repeat questions or statements. Avoid re- phrasing them. DSP Interests and Concerns is an ongoing col- · Decrease number of people present (while as- umn in The NADD Bulletin. We welcome your suring safety). comments, suggestions, and submissions for this · Don’t argue with others who are present. column. To learn more or to contribute to this col- · Try saying “Let’s sit down and talk” or “Let’s umn, you may contact Kathleen Olson, Editor of sit and be quiet.” DSP Interests and Concerns, at [email protected]. DSW Resource Center The National Direct Service Work- rected services, and other topics. force (DSW) Resource Center (www. Covering the full range of DSW dswresourcecenter.org) is a useful consumer populations, resources website for anyone concerned with include web-based clearinghouses, issues related to direct support pro- technical experts, training tools, and fessionals. This extensive resource more. Funding and support for the database can be used to access in- Resource Center come from the Cen- formation, resources, and research ters for Medicare and Medicaid Ser- on training, recruitment, retention, vices, U.S. Department for Health wages, supervision, consumer di- and Human Services. 36 March/April 2011 Volume 14 Number 2