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Approaching zero exclusion: the role of positive behavioral supports in community employment.

"Janet spent her adolescence and early adult life in an institution for individuals with severe developmental disabilities. The national movement toward deinstitutionalization offered her the opportunity to move to a small Colorado town. The move did not, however, eliminate the violent behaviors for which she was known. Within weeks, she had attacked other consumers, caused serious injury to staff, and had inflicted multiple wounds upon herself. The rehabilitation agency that served Janet does not believe in the use of restrictive procedures in controlling behaviors, but because it did not have training in functional crisis management techniques it returned her to the institution.

After several months, she returned to her new community and the staff explored a community-inclusive approach to meeting her needs. Through the development of a person-centered Career Plan and the development of a Plan for Achieving Self Support (PASS)(1) through Social Security, a nationally recognized nonaversive behaviorist was hired to analyze possible causes for her behavior and to explore possible interventions to minimize violent acts. Because Janet was new to the community and had been separated from her family for most of her life, there were few functional clues to explain some of her behaviors.

The approach evolved to one of exploring options that would provide more efficient ways for Janet to get her needs met, be they the need to be alone or have physical space, the need to control her daily life choices, or the need to feel comfortable with her new surroundings. Although she carried a label of severe mental retardation and used little verbal communication, she made it known that she wanted to spend time in well-lit areas and that she had an interest in arts and crafts.

The practice of functional assessment of behavior maintains that there are reasons for particular behaviors; that even with organically rooted behavior, the environment shapes actions into understandable forms. The challenge in supporting behavior change comes in restructuring or changing the environment to allow more efficient means of getting what a person desires, or teaching replacement behaviors that accomplish a task and satisfy a need. This approach differs from typical "extinction" methods; the assumption being that new, more practical skills naturally eliminate the need for the old, bothersome behavior. By considering Janet's interest in well-lit places and her artistic desires, a job search was begun.

A company was located in the small town that manufactures textile products, such as baby bibs. The agency job developer and David Hammis, a staff member of the Center for Technical Assistance and Training (CTAT), performed a thorough job analysis and discussed with the owner the possibility of employing Janet. The employer said he could use another seamstress, but Janet had few sewing skills. With the use of the PASS, however, a computerized bar tacker was purchased that Janet could operate. After more than 2 years, Janet has evolved into a valued employee; she is friends with several coworkers; and she performs sewing, trimming, and silk screening jobs for the company. She converses openly and is no longer violent.

When videotapes of Janet are shown in training sessions, the participants, unaware of her past, describe her as "moderately disabled," "pleasant," and "hard working."

Janet changed because her situation changed. Through the person-centered career process, she was taken seriously, and her desire to explore personal interests in artistic work led to her employment and the improved quality of life that is crucial to behavior change.

Many stories similar to Janet's are being heard throughout the United States and other countries. The progression towards supported employment, community integrated and individualized service/support, and the new emphasis upon school-to-adult life transition is making it necessary to rethink professional, parental, and consumer definitions of accomplishment. Still, CTAT's work nationally recognizes that persons with severe, challenging, and puzzling behaviors (such as violence, stereotypic, physical regulation, self-stimulation, screaming, pica, avoidance, et al.) are not leaving segregated settings for community jobs and individualized housing. In response, CTAT applied to the Rehabilitation Services Administration (RSA) to establish a Special Demonstration Project to teach a select cadre of professionals how to better support citizens with severe disabilities in real jobs of their choice. The Regional Employment Through Positive Behavioral Supports Project (ETPBS) was designed "to address the establishment of supported employment for persons eligible for such services, who also have an identified challenging or excess behavior which is the primary historical cause of their unemployment."

Program Components

ETPBS is designed according to the principles of human resource development, which recognizes that working professionals need training and consultation that is directly applicable to their daily work. In order to accomplish this functional learning approach, CTAT staff provides onsite assistance and training for a 1-year period to agencies selected for the program after applications are review by a committee of consumers, families, professionals, business people, and the vocational rehabilitation central offices in each of the region's six states - Colorado, Montana, South Dakota, North Dakota, Wyoming, and Utah.

Each site identifies a minimum of five persons with behavioral labels that have kept them from being considered for supported employment. Support teams comprised of the consumer, staff, family, neighbors, and other citizens are established to identify the function of the behavior, analyze key quality of life concerns, and develop career plans with adequate, nonaversive supports that will help the individual become employed. These core teams receive regular training and consultation following thorough needs assessments and interviews. Training topics typically include: functional analysis, job creation/job carving, personal futures planning, Social Security Work Incentives, environmental analysis, community organizing, and a variety of nonaversive approaches for redirecting and replacing behaviors.

Guiding Values

Nationally, supported employment for persons with severe disabilities who also have puzzling or challenging behaviors has met with limited success. ETPBS was established based upon the extensive body of research related to behavior change and upon field experience collected by CTAT staff in their current consultative roles and as former direct service practitioners, from consumers, from families, and from rehabilitation personnel throughout the United States. The first step in approaching the establishment of career opportunities lies in the formulation of sincere beliefs. ETPBS is founded upon guiding principles that define service delivery from both a direct service and an organizational standpoint. It has become clear that efficacious frontline habilitation techniques are critical to proper consumer-directed service delivery, but often overlooked is the role of leadership in human service and rehabilitation agencies. Organizations must be values-based at all levels, and policy and procedures must be established that allow power to flow from individuals receiving services to the professionals who facilitate community supports (Griffin, 1994). Without this consumer-control focus, atypical outcomes, such as community inclusion for individuals with multiple and severe disabilities, do not occur (Lawhead, 1994). The first step towards inclusion begins with open examining, internalizing, and operationalizing of the following:

Zero Exclusion. The direct service implication is that all people, regardless of severity or type of disability have the right to live, work, and recreate in integrated settings in their chosen community. Operatively, holding true to this principle requires elimination of the concept that individuals have to get ready to work. Utilizing this guiding principle, it is understood by staff and consumers that all people are ready to work. The tough part is figuring out the people, places, and things that will assist them in being successful and how to acquire those supports.

The organizational implication is that systems must, in all aspects, respect the fulfillment of this belief, and management actions should direct the replacement of congregate/segregated facilities with options based upon consumer desire and the presence of people without disabilities. Further, the organizational implication contains the directive that all consumers and staff must be involved or have a true representative voice, regardless of position, in agency decision-making, planning, and operations.

In one ETPBS site in a small town in Utah, individuals recently deinstitutionalized were placed in a segregated day-activity program. These persons were considered "too disabled" to participate freely in the life of the community. But, over time, supervised trips were made into the center of town. Soon, these individuals left the program to visit downtown alone or in pairs. Concerned citizens phoned the program to voice their care and concern. The callers were thanked for their cautiousness, but were assured that everyone was safe. Within months, the community fully accepted these new citizens and two were offered jobs with the city maintaining flower beds and other accoutrements on Main Street (Simon, 1994). Had the program emphasized readiness instead of zero exclusion, these individuals would still be working on life skills in a classroom tucked safely away from interactions with typical adults.

Partial Participation. The direct service implication is that all people have something or some part of something that they can do and enjoy doing. It is our job as professionals to see that this "spark" or skill is utilized to begin the development of real work and/or civic involvement. It also holds true that staff must be allowed by the organization to utilize their strengths and creative talents in supporting individuals with excess behaviors (Hammis, 1993).

Partial participation holds that, in career development or in understanding behavior, success is found in moving towards strengths and enjoyments that currently exist, rather than training towards a predetermined job, role, or behavior. Using this values tenet as a guide, for instance, the lead author once helped establish a job for a young man who was quite violent. "Roger" was in a day-activity program and indicated he was extremely bored. He loved working with his hands. In fact, he was very competent with hand tools and enjoyed dismantling mechanical apparatus. He once took apart the kitchen plumbing in the house he lived in. The problem was that he could not put things back together too well and he actually had little interest in returning machinery to working condition.

His behavior was viewed as destructive and he was further segregated from the community for fear he might destroy property belonging to neighbors or local businesses. This restriction led to more frustration and the violence escalated. A forward thinking employment specialist called the CTAT offices, and consultation concerning the functional assessment of Roger's behavior began.

The obscure became obvious. The problem was not with Roger. The problem was the restrictive intervention designed by staff. There seems to be a natural tendency for human beings to react to "noncompliant" behaviors with punishment or restriction. Roger suffered from such an intervention. Instead of beginning by asking "What can we take away from this person to control them?" we must learn to ask: "What can we help this person get more off? What will make this person's life better? What is this behavior telling us? What competencies are represented by this behavior?" By approaching Roger's situation in this way, a job was sought for him at an auto wrecking yard. His first community job involved removing carburetors, bumpers, starters, and alternators from junked cars. As an added bonus, Roger was so tired at the end of the day that fighting with others became less desirable than relaxing in front of the television.

Zero Instructional Inference. This principle holds that for most people, with or without disabilities, the place to learn is in environments where the target skills will be used. Therefore, the practice of readiness (developmental continuum) and earning the right to a job or social activity is eliminated based upon solid evidence that preparatory training typically has little validity, especially when intellectual or behavioral disability is encountered.

Most of us did not learn how to do our jobs in high school or college. We learned perhaps to think, reason, and gather information, but the actual business of "doing our job" was learned by performing that job. The idea that "prevocational" training in a classroom or segregated facility gets one ready is largely fallacious. Considering that most individuals lose their jobs based upon the appropriateness of human interaction and that the only way to learn how people interact is to be around people, people of diverse backgrounds, the need for organizational emphasis upon facilitating community-based learning environments becomes clear. Parents seldom rehearse social skills with their children. Children learn social interaction by socializing. Changing behavior often demands the witnessing of how others behave in similar situations; and this modelling often takes a great deal of time due to the unlearning and relearning necessary for behavior change. There is no quick fix to behavior or education.

Mutuality. This concept implies that we must at all times attribute thinking and feeling to people with disabilities, regardless of type or severity of disability. Many times we hear staff describing an individual's behavior as "attention seeking" in design. Rather than trying to increase the amount of attention the individual might receive in healthy, natural ways, staff have typically been taught and encouraged to ignore the attention seeking behavior. Usually, the assumption is that the individual is already getting more attention than most people. What is often forgotten is that many people with disabilities, particularly those who were institutionalized, have never had their emotional needs met, and maintain "black holes" of emotional need. What seems like a lot of attention to us is barely enough to begin addressing typical human needs.

The golden rule should be strictly enforced in all interactions with people with disabilities and their friends and family. The organizational implication is that policies that restrict individual freedom, allow aversive and cost/response-based behavioral interventions, allow the hiring of ill-equipped staff, or continue to promote segregation in its many forms are no longer tolerated. Further, mutuality means that staff, especially those closest to the customer, are well-respected, well-paid, well-educated, and involved to such a degree that they truly provide world-class service. If frontline staff are viewed as expendable, and pay and training investment statistics show this to be a nationwide situation (Kiernan & Schalock, 1989), they are probably not prepared or motivated to assist individuals with excess behaviors in reaching their dreams.

Interdependence. The crux of creating community employment for individuals with excess behaviors lies in the interconnectedness of consumers, staff, and organizations. For far too many years, people with disabilities have been restricted politically, economically, and physically from interacting with "typical" citizens. CTAT's field work also reveals that many professionals are socially isolated and are, therefore, unaware of the capacity for support from the community; and that the image of many rehabilitation organizations as being apart from the rest of community life - as witnessed in charity/pity-focused fundraising and the low visibility afforded the rehabilitation process in segregated programs - only adds to the social isolation and subsequent impoverishment of individuals served.

While personal medical and health-related issues are always a starting point for investigating the cause and resolution of excess behaviors, quality of life concerns - largely based upon the opportunity for diverse human interactions - appear to be extremely critical in the majority of cases known to CTAT. Most of us rely upon a social network for support in our daily lives. When we have decisions to make or successes to share, we interact with others, generally those of our choosing. Individuals with severe disabilities often have no social network other than paid professional staff. When typical human interaction is denied, excess behaviors occur.

For example, "Jim" grew up in a small town in South Dakota. He lived with his mother all his life, attended special education classes in the public school, and had the freedom to roam around town by himself. All the shop owners, post office employees, and library personnel knew him well and spoke with him frequently. When Jim turned 30, his family and the system decided it was time for him to move out of his mother's home. Rather than moving him into his own apartment, with support, in his home community, he was moved 80 miles away to a larger town. He is currently living in a large group home and working in a sheltered workshop. Staff are witnessing many behavioral changes, including violence, withdrawal, isolation, depression, and noncompliance. He no longer goes anywhere alone, has little personal privacy or freedom, and has lost all the connections that had provided friendship and support in his home community. The natural process of interdependence facilitated his membership at home; a bad management decision, based upon system convenience and a disavowal of Jim's fundamental right to live, work, and recreate in his place of choice, has created behavior issues that now jeopardize his standing as a citizen and will possibly end up costing the system more in resources than if no intervention had occurred.

To create social networks, the ability and opportunity to be in a variety of environments with a variety of other people is important. Eventually, a few acquaintances become friends and quality of life is increased through the interaction that results (Oldenburg, 1989). Our friends, families, coworkers, and acquaintances teach and support us. Rarely can individuals meet their needs alone. Unmet needs manifest themselves in many ways. Often, the loneliness felt by people with disabilities results in behaviors that bring rapid attention from those in view. The inability to communicate needs certainly causes frustrations that result in troubling behaviors; and being placed in situations where the urgency of one's needs are not acted upon - either due to a lack of funding or lack of staff technical knowledge - certainly fosters atypical behavior. The bottom line is this: if human beings do not have choice, power, and control in their lives, their behavior will reflect their frustrations. For persons with disabilities, adding a behavioral label to a primary disability label often results in more segregation and still fewer opportunities. ETPBS is attempting to focus attention. on how we - as rehabilitation professionals - provide necessary supports and - as "detectives" - seek positive clues for the use of existing talents, regardless of how obscure or seemingly inconsequential those talents may appear.

Person-Centered Planning.

Identifying available, affordable, and appropriate supports for individuals with challenging behaviors is often time-consuming and difficult. ETPBS emphasizes that many of the supports necessary for success on the job and at home are already found in the community, but that these options are seldom developed by or for individuals with disabilities. Typical behavioral interventions rely upon extinction of behavior through cost-response or punishment methods. This is a typical model we have all witnessed, such as when a parent instructs a child to "take out the trash or you don't get your allowance." ETPBS emphasizes asking first why I might not wish to take the trash out, concerns itself with whether this indeed is a necessary activity at this given time and place, and explores other means for accomplishing or circumventing the task. Above all, getting into power struggles with people is always avoided and healthy, mutually beneficial learning environments are developed by first focussing on those tasks we know to be essential in life. ETPBS concentrates on the belief that most behaviors, with proper study, can be explained or at least better understood and that the best approach to integration of folks with seemingly aberrant behaviors is to put them in environments where these actions are no longer necessary or where new, more efficient behaviors can be learned.

In determining what tasks are essential, it is more important to ask the individual and the family, rather than to consult a rehabilitation curriculum that presupposes what is important to all people with a particular disability ETPBS serves individuals with various disabilities, such as Down Syndrome, psychosis, brain injury, sensory impairment, and autism. Utilizing a person-centered approach minimizes the emphasis typically placed upon disability type and instead focuses upon the person, the necessary social network, the employment choices, and the various explanations for or uses of a particularly challenging behavior.

A review with staff, the consumer, available family, and volunteers or interested citizens is undertaken to identify key life issues and quality-of-life needs. These meetings typically last several hours and may be held weekly, monthly, or as often as necessary, or possibly until the individual decides they are no longer necessary. Behaviors are discussed and career plans are developed and revised based upon consumer desire. Staff and others receive training during the first several months of the planning process. Through the development of a series of life maps revealing personal history, dreams, preferences, friend/family supports, health status, etc., graphic information is revealed that allows the team to identify possible causes of inappropriate behavior, the absence of ingredients that could enhance enjoyment of life, and clues to aid in identifying vocational interests and strengths. Important in this mapping process is the identification of those things that do not work for a particular person and the restructuring or reprogramming of environments to eliminate such life irritants.

By listening to the consumer and family - rather than judging and guessing - quality job development has resulted and prompted the establishment of ETPBS. For example, one young woman accused of "noncompliant" behaviors was dismissed from a program because she lost several jobs. Upon listening to her and her parents, it became clear that she needed to work around others, have a variety of tasks to perform so she did not get bored, and be able to recreate with coworkers on an afterhours sports team. This listening led to a job for the consumer with a Fortune 500 insurance company that provides her with a variety of tasks in several departments. When she and her job coach arrived, there was no sports team; now, there is a bowling team, and the job coach's role has faded and been replaced by assistance from her coworkers, who teach new tasks as necessary.

Another emphasis of person-centered planning is upon the seeming lack of motivation to work, of which some people with disabilities stand accused. In one case, a middle-aged gentleman was referred to a day-activity center and deemed ineligible for work due to his label of "severe" mental retardation and lack of interest in work. After spending time with this person, the job developer noted that the words, "horse," "cow-cow," and "NO," were spoken often and were, in fact, the only words the man spoke.

Using this language as a clue, businesses related to farming and farm animals were explored. At present, the owner of a riding stable has agreed to hire the individual as a stable hand and, to supplement his income and create a capital investment, a PASS was developed and approved for an Arabian stud horse to be owned by this man, launching his career as a horse breeder and career capitalist.

The process is simple but requires listening and creativity.

Conclusion

People with severe disabilities, their families, friends, and professionals are raising their expectations. Partnerships are being formed to release service consumers from continuums of care and the traps that artificial labels create. The Rehabilitation Act Amendments of 1992, the Assistive Technology Act, the Americans with Disabilities Act, and other major pieces of legislation are establishing community referenced guidelines for the improvement, expansion, and normalization of lives and opportunities. Individuals with challenging, excess, and puzzling behaviors must also have their rights guaranteed. ETPBS is one effort aimed at realizing full citizenship for individuals with disabilities.

In the coming years, monographs, a field-based training video series, and journal articles will be produced for consumers, families, and professionals to assist in the training and adaptation of nonaversive behavior strategies. The Center for Technical Assistance & Training, located at the University of Northern Colorado, also offers telephone and onsite consultation on positive behavior support, as well as training programs, a free lending library, and a free newsletter, The Field Report. CTAT hopes to eventually expand ETPBS nationwide, after field work has refined the various, individualized approaches now being explored.

The authors wish to express their appreciation to Pamela Martin and Juanita Bowe, Rehabilitation Services Administration, U.S. Department of Education, for their ongoing technical advice and high spirited support and to the consumers, parents, and staff in the first-year demonstration sites: Boulder County Enterprises, Boulder, Colorado; RISE, Inc., Provo, Utah; Oahe Industries, Pierre, South Dakota; and Pride, Inc., Bismarck, North Dakota.

Note

(1.) A PASS Plan, or Plan for Achieving Self-Support, is a Social Security Work Incentive that allows a Supplemental Security Income (SSI) recipient to set aside money for a specified period of time for the purpose of accomplishing an employment goal (Prero, 1993; Social Security Administration, 1988).

Bibliography

1. Griffin, C.C. (1994, in press). Organizational Natural Supports: The Role of Leadership in Facilitating Inclusion. Journal of Vocational Rehabilitation. 2. Hammis, D. (1993). Supported Employment and Career Planning: Ask Another Question? Unpublished concept paper. Greeley, Colorado: CTAT/UNC. 3. Kiernan, W.E. & Schalock, R.L. (1989). Economics, Industry, and Disability. Baltimore. Paul Brookes Publishing. 4. Lawhead, B. (1994). Personal correspondence with Bob Lawhead, Executive Director, Boulder County Enterprises, Boulder, CO. 5. Oldenburg, R. (1989). The Great Good Place. New York: Paragon House. 6. Simons, W. (1994). Personal correspondence with Wendi Simons, Team Leader, RISE, Inc., Blanding, Utah, site.
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Author:Griffin, Cary
Publication:American Rehabilitation
Date:Jun 22, 1994
Words:4161
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