Queen Essays

JOURNAL OF APPLIED BEHAVIOR ANALYSIS

BALANCING THE RIGHT TO HABILITATION WITH THE RIGHT TO PERSONAL LIBERTIES: THE RIGHTS OF PEOPLE WITH DEVELOPMENTAL DISABILITIES TO EAT TOO MANY

DOUGHNUTS AND TAKE A NAP

DLANE J. BANNERMAN, JAN B. SHELDON, JAMES A. SHuA.N, AND ALAN E. HARCHIK UNIVERS=Y OF KANSAS

In the pursuit of efficient habilitation, many service providers exercise a great deal of control over the lives of clients with developmental disabilities. For example, service providers often choose the client's habilitative goals, determine the daily schedule, and regulate access to preferred activities. This paper examines the advantages and disadvantages of allowing clients to exercise personal liberties, such as the right to choose and refuse daily activities. On one hand, poor choices on the part of the client could hinder habilitation. On the other hand, moral and legal issues arise when the client's right to choice is abridged. Recommendations are offered to protect both the right to habilitation and the freedom to choose. DESCRIPTORS: developmentally disabled, ethics, client rights, choice behavior, mentally re-

tarded

In the pursuit of efficient habilitation, many ser- vice providers exercise a great deal of control over the lives of clients with developmental disabilities (Guess, Benson, & Siegel-Causey, 1985; Kishi, Teelucksingh, Zollers, Park-Lee, & Meyer, 1988; Turnbull & Turnbull, 1985). Service providers often choose the dient's habilitative goals, choose their work or day treatment setting, impose inflexible daily activity schedules, and regulate access to pre- ferred activities. The choices made by the service provider may indeed promote habilitation, but these choices may not reflect the client's preferences. The purpose of this paper is to discuss the relation between the right to habilitation and the client's right to personal liberties. The following questions will be addressed: What does the "right to habil- itation" mean for people with developmental dis- abilities? What are personal liberties? What are the advantages and disadvantages of allowing citizens with developmental disabilities to exercise their per- sonal liberties? How might service providers better protect both the right to habilitation and the free- dom to choose?

Please address all correspondence to Diane J. Bannerman at the Department of Human Development and Family Life, 1034 Haworth, University of Kansas, Lawrence, Kansas 66045.

THE RIGHT TO HABIUTATION Habilitation involves teaching the skills needed

to live as independently as possible (Favell, Favell, Riddle, & Risley, 1984). A long history of inad- equate services for people with developmental dis- abilities has been the impetus for numerous class action suits and legislative reforms guaranteeing these citizens a general right to habilitation. In the most well known of the class action suits, Wyatt v. Stickney (1971, 1972, 1975), an Alabama court (and subsequently the Fifth Circuit Federal Court) determined that citizens with mental retar- dation have a "right to receive such individual habilitation as will give each of them a realistic opportunity to lead a more useful and meaningful life and to return to society" (Wyatt v. Stickney, 1975, p. 397). On the basis of this ruling, the court set minimum standards that included indi- vidualized habilitation plans, a humane physical environment, and assurance of enough qualified staff to administer adequate treatment (Wyatt v. Stickney, 1975, p. 395). Despite the Wyatt court's determined efforts to upgrade the standards for treatment, a constitutional right to habilitation has not yet been established. In fact, in a recent Su- preme Court case, Youngberg v. Romeo (1982), the Court guaranteed only as much habilitation as needed to ensure freedom from undue restraint.

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DIANE J. BANNERMAN et al.

Since 1976, federal and state legislatures have taken a much stronger position than the courts in securing the right to habilitation. Federal legislation indudes the Developmental Disabilities Assistance and Bill of Rights Act (1979), the Rehabilitation Act of 1973, The Education for All Handicapped Children Act of 1975, the Medicare Catastrophic Coverage Act of 1988 (Strauss, 1988), amend- ments to the Social Security Act induding the new Standards for Payment for Skilled Nursing and Intermediate Care Facility Services (1988), and the proposed Medicaid Home and Community Quality Services Act of 1987 (not yet enacted as of May, 1989). Not only has legislation mandated habilitation,

but most laws make funding contingent on com- pliance with specific habilitative standards that em- phasize the teaching of independent living skills as well as the provision of a safe and attractive living environment (Developmental Disabilities Assis- tance and Bill of Rights Act, 1979; The Educa- tional for All Handicapped Children Act of 1975; The Rehabilitation Act of 1973; Standards for Pay- ment for Skilled Nursing and Intermediate Care Facility Services, 1988). Proposed positive effects of contingent funding indude higher quality ha- bilitation programs. Possible unexpected effects, however, may be the compromise of clients' per- sonal liberties.

PERSONAL LIBERTIES: THE RIGHT TO

CHOOSE AND REFUSE

In a legal context, personal liberties indude free- dom of speech, freedom of religion, and other rights guaranteed by the Constitution. It may be argued, however, that personal liberties are even more basic than those detailed in the Constitution. Supreme Court Justice William 0. Douglas discussed the "right to be let alone," induding "the privilege of an individual to plan his own affairs, . . . to shape his own life as he thinks best, do what he pleases, go where he pleases … freedom from bodily re- straint or compulsion, freedom to walk, stroll, or loaf' (citations omitted) (Doe v. Bolton, 1973). This legal conceptualization of personal liberty im-

plies that people should have a variety of available options and be free from coercion when choosing between options.

From a behavior-analytic perspective, options in life are valued, but choice is anything but free (Skinner, 1971). Choice is, presumably, a function of historical and existing reinforcement and pun- ishment contingencies. Many of these contingencies are not readily apparent, making choice difficult to analyze and predict. How people make choices has been investigated in research on concurrent sched- ules of reinforcement (Catania, 1979) and has been described (with varying degrees of accuracy) with equations such as the matching law (Hermustein, 1970; McDowell, 1988) and with theories such as maximization and melioration (see Mazur, 1986). Because choice is difficult to analyze, some re- searchers have defined choice by the more apparent stimulus and contigency conditions. For example, Brigham (1979) defined choice as

the opportunity to make an uncoerced selec- tion from two or more alternative events, con- sequences, or responses. By uncoerced, we mean that there are no programmed implicit or explicit consequences for selecting one al- temative over the others except for the char- acteristics of the alternatives themselves. (p. 132)

The terms choice and choosing used in this paper correspond dosely to the term uncoerced selection as used by Brigham.

Even though behavior analysts may argue that choice is not free, many also recognize that perceived choice is extremely valued by many people. World history and current events are filled with examples of people striving to live "free." Further, the il- lusion of freedom and choice seems to play an important role in the individual's successful func- tioning (Lefcourt, 1973; Taylor & Brown, 1988).

Not only do people strive for freedom in a broad sense, they also enjoy making simple choices, such as whether to engage in unproductive, though harmless, activities, like watching sitcoms on tele- vision, eating too many doughnuts, taking the

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afternoon off from work, or taking a nap before dinner. People typically decide for themselves when to take a shower, what to eat, and with whom to spend their time. These choices are cherished by most people, induding those with developmental disabilities. At issue is whether service providers actually allow clients with developmental disabil- ities these liberties and whether it is in the clients' best interests (i.e., interests that lead to an inde- pendent, normal lifestyle most efficiently) to exer-

cise these liberties.

THE PRESENT STATUS: COMPROMISING LIBERTIES TO ACHIEVE HABIUTATION

Personal liberties can be compromised in many ways by service providers striving to meet standards for habilitation, be cost effective, and satisfy par- ents, board members, school administrators, neigh- bors, and other consumers. Some of the ways in which personal liberties may be compromised are

as follows. 1. Clients may have little or no input in decisions

regarding their priority treatment goals or on the procedures used to teach them (Guess & Siegel- Causey, 1985). As a consequence, clients may not

be motivated to achieve particular goals. They may resist particular teaching procedures. Staff may in- terpret this resistance as a failure in teaching tech- nology when it could merely be an expression of preference (Guess & Siegel-Causey, 1985; Hough- ton, Bronicki, & Guess, 1987).

2. Teachers or residential staff may teach be- haviors with no regard for the client's preference or past learning in the area. For example, staff members may teach horseshoes and jogging because they prefer those leisure activities as opposed to

determining and respecting the leisure preferences of the client. Or, staffmay teach wetting the tooth-

brush before applying toothpaste, even though the client may be accustomed to doing it in the reverse

order. Parents, guardians, or advocates who are

legally responsible for making decisions for clients deemed incapacitated may make decisions based on their own interests of time, money, protective- ness, and preference, instead of the client's pref-

erences (Turnbull, Turnbull, Bronicki, Summers, & Roeder-Gordon, 1989).

3. Choice making is not often taught. Shevin and Klein (1984) assert that "our profession has focused on choice-making as a permissible activity, rather than as a teaching target" (p. 60). Many people require teaching to help them discover their own preferences and learn to make responsible choices. Unfortunately, we have given little atten- tion to the development of curricula for teaching students to discriminate their preferences and make choices to obtain them (however, see Hazel, Desh- ler, Turnbull, & Osborne, 1988). Further, perhaps due to lack ofchoice-making curricula, professional teacher training does not often indude methods on how to instruct clients in choice making.

4. Opportunities for choice are not often given (Guess et al., 1985; Kishi et al., 1988; Knowlton, Turnbull, Backus, & Turnbull, 1988). The pres- sure to meet regulatory standards may cause some service providers to put too much emphasis on quantity and scheduling of habilitative activities. In fact, many service agencies, such as Intermediate Care Facilities for the Mentally Retarded, are re- quired to implement hour-by-hour daily schedules (Standards for Payment for Skilled Nursing and Intermediate Care Facility Services, 1988). Inflex- ible scheduling often precludes opportunities for choice. For instance, clients may not be allowed to choose the order or timing of activities. They may be discouraged from taking breaks or from choosing activities that are not scheduled. Staffmay pick out clients' dothes. A dietitian may plan clients' meals. Leisure materials may be locked in a cabinet until scheduled leisure times.

Additionally, the pressure to please funding agencies, parents, and other consumers may compel direct care staff and teachers to "put on a show" when visitors arrive. This is often done with little sensitivity to the clients' preferences at the time.

It is dear that personal liberties can be easily denied. At issue is whether it is in the client's best interest to be allowed to exercise choice (Griffith & Coval, 1984). Is it in the best interests of a client with significant independent living skill deficits to

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be allowed to skip a teaching session, choose a hobby over an academic habilitation goal, refuse to go on a shopping trip, or eat too many doughnuts and take a nap? Arguments supporting each side of the issue are discussed below.

ARGUMENTS OPPOSING THE RIGHT TO CHOICE The strongest argument against the right to choice

is that many people with developmental disabilities may make bad choices (Guess et al., 1985). For instance, some may have no leisure skills in their repertoire and, therefore, may engage in stereotypy, napping, or self-injury during free time. Other clients with limited skill repertoires may choose a skill that they have not mastered. For instance, they may make an incomplete lunch or attempt to to take a bus to work without knowing how. Although other members of society enjoy the right to choose an incomplete lunch, or engage in other unproductive, even unsafe, activities, they typically have a vast repertoire of learned skills and behaviors and are presumably aware of most of the consequences of their behavior. Further, they are occasionally com- pelled to work, cook, or study in order to meet the contingencies required to sustain their lives. The argument follows that people who do not have a repertoire of skills, and who do not understand the consequences of their behavior, require intensive teaching in these areas before being allowed to choose. Until that time, caring, responsible parents, advocates, or teachers should aid the client in de- ciding what activities can be refused and what types of choices he or she is capable of making (Shuman, 1975). Society has chosen to treat minors in a similar manner because of their presumed inability to make competent decisions due to age.

Another argument against giving clients the right to choose is that allowing this freedom may hinder their acquisition of critical independent living skills (Knowlton et al., 1988). For instance, if a client is allowed to choose to be dressed by staff each morning, then that client is not learning how to dress independently. If a client chooses to learn a hobby rather than a vocational task, this may hinder future opportunities for employment. Federal, state, and local funding agencies have a compelling in-

terest in teaching independent living skills to people with developmental disabilities because they are dependents who require considerable public finan- cial support (Griffith & Coval, 1984). The argu- ment follows that abridging personal liberties in order to teach independent living skills is an ap- propriate tradeoff (Griffith & Coval, 1984; American Bar Association, 1975). Some argue further that clients have an obligation to try to achieve the goals set in the interdisciplinary planning process (IPP) (Gardner & Chapman, 1985; VanBiervliet & Shel- don-Wildgen, 1981). VanBiervliet and Sheldon- Wildgen contended: "If the client fails to fulfill this responsibility [to attempt to achieve IPP goals) and the program has tried less drastic means of resolving the situation and has failed, the client can be asked to leave the program" (p. 132).

ARGUMENTS IN FAVOR OF THE RIGHT TO CHOICE A compelling argument in favor of allowing

clients the right to choose is that legislation guar- antees it. People with developmental disabilities are guaranteed the same basic rights as other citizens of the same country and same age (Declaration of Rights of Mentally Retarded Persons, 1972; De- velopmental Disabilities Assistance and Bill of Rights Act, 1979). In fact, the recently enacted Standards for Payment for Skilled Nursing and Intermediate Care Facility Services (1988) not only assert that clients have the right to make choices, but require that staffprovide opportunities for choice (p. 20500). Everyone has the right and ability to make choices on some level. Even a person with profound mental retardation can choose what to eat for a snack or which chair is most comfortable. People should be allowed to exercise as much choice as their abilities allow, whether it involves express- ing a simple preference or weighing the advantages and disadvantages of several options during com- plex decision making. A second argument is that the ability of a client

to exercise choice may prepare him or her to live in the community where individuals are expected to make decisions and choices (Knowlton et al., 1988; Perske, 1972; Turnbull et al., 1989; Veach, 1977; Wolfensberger, 1972). Because most clients

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are striving towards a more normalized lifestyle, learning to live as other community members do is an important goal.

Findings from experimental research with a number of different subject populations provide additional support for personal liberties. Research- ers have found that individuals frequently prefer situations in which they have choice and that choice rarely proves detrimental to the individual and may, in fact, be beneficial. Below, we briefly review some of this research and note a number of pertinent research issues (see also Harchik, Sherman, & Shel- don, 1989).

Effects of Choice on Preference In studies that examined preference for choice,

subjects were concurrently presented with two sit- uations that were equivalent, except that choice was made available in only one of the situations. In- dividuals most frequently chose the situation in which choice was made available. For example, children chose to participate in tasks in which they had a choice of reinforcers more often than when the experimenter chose the same reinforcers for them (Brigham, 1979; Brigham & Sherman, 1973; Brig- ham & Stoerzinger, 1976). Adolescents with de- velopmental disabilities who engaged in stereotyp- ic rocking more frequently chose a chair in which they could rock themselves over a chair rocked by the researchers at the same rate (Buyer, Berkson, Winnega, & Morton, 1987). Rats and pigeons also preferred situations in which choice was available (Catania & Sagvolden, 1980; Voss & Homize, 1970), suggesting that the effects of choice are not limited to humans.

Effects of Choice on Participation Individuals appear to participate more in activ-

ities when opportunities for choice are available. Adolescents participated in group decision making more often when they determined consequences for their peers than when their teaching parents deter- mined the consequences (Fixsen, Phillips, & Wolf, 1973); women who chose their own exercises had better attendance at a fitness dub than other women who were assigned the same exercises (Thompson

& Wankel, 1980); undergraduates who chose whether to participate and what their reward would be, participated in a puzzle game during free time more often than others who had not been given either choice (Zuckerman, Porac, Lathin, Smith, & Deci, 1978); and when office workers chose lottery tickets, they were less likely to sell or exchange their tickets before the drawing, even for tickets with better odds (Langer, 1975).

Effects of Choice on Task Performance Opportunities to make choices in a situation may

improve performance. For example, children who were given a choice of treatments for recalling or recognizing words or losing weight performed somewhat better than other children who received that same treatment but had not chosen it (Berk, 1976; Mendonca & Brehm, 1983). Similar effects were found with undergraduates who chose treat- ments for improving reading and study habits or for reducing fear of snakes (Champlin & Karoly, 1975; Devine & Fernald, 1973; Kanfer & Grimm, 1978), with children who were allowed to choose art materials (Amabile & Gitomer, 1984), and with undergraduates and older adults who could control the termination or duration ofshocks or noise (Glass, Singer, & Friedman, 1969; Reim, Glass, & Singer, 1971). In a series of laboratory analogue studies, undergraduates who chose the words used in a paired-word learning task responded faster, learned the words faster, and learned more word pairs than others who did not choose (e.g., Perlmuter & Mon- ty, 1973; Perlmuter, Scharff, Karsh, & Monty, 1980). Conversely, however, Dyer, Dunlap, and Winterling (1989) and Newhard (1984) found the academic performance of children with severe disabilities to be the same whether or not they chose the task, materials, or reinforcers.

Finally, students have chosen their own conse- quences for performance on tasks. In some studies, student performance subsequently improved (Dick- erson & Creedon, 1981; Lovitt & Curtiss, 1969). In other studies, choice of consequences did not change the students' performance (Brigham & Sherman, 1973; Brigham & Stoerzinger, 1976; Felixbrod & O'Leary, 1973; Glynn, 1970).

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Effects of Choice on Problem Behavior Problem behaviors appear to be exhibited less

frequently when an individual has opportunities for choice. Autistic children exhibited fewer problem behaviors (e.g., aggression, self-injury) when they had a choice of tasks, materials, and reinforcers than when the therapist made these choices (Dyer et al., 1989), and they demonstrated less social avoidance (e.g., looking and moving away) when they were engaged in activities that they preferred (Koegel, Dyer, & Bell, 1987). Students with severe developmental disabilities demonstrated less aber- rant behavior and greater compliance when they could control the pace of instructions during vo- cational tasks (Dobbins, 1988). High school and college students demonstrated less noncompliance in completing tasks when they had opportunities for choice in the situation (Heilman & Toffler, 1976; Wright & Strong, 1982).

Effects of Choice on Responses to Aversive Stimuli

Subjects who could control an aspect of an aver- sive situation (e.g., choice of the termination, du- ration, or presentation of shock, noise, or written tests) reported less discomfort and had less extreme autonomic responding than subjects who received the same stimulus but had no control over it (Corah & Boffa, 1970; DeGood, 1975; Geer, Davison, & Gatchel, 1970; Geer & Maisel, 1972; Stodand & Blumenthal, 1964). Further, rats presented with escapable and avoidable shocks developed fewer gastric ulcers than those who received the same amount of shock that was inescapable and un- avoidable (Weiss, 1971); infant boys who had op- portunities to control the action of a mechanical toy were less likely to cry than other boys who did not have these opportunities (Gunnar-Vongnech- ten, 1978); and patients given a choice of two medical treatments were less likely to be depressed or anxious than patients assigned a treatment (Mor- ris & Royle, 1988).

Researrh Issues A number of issues should be considered in

attempting to analyze the generality and applica-

bility of the research findings on choice. First, some methodological issues deserve consideration. Few of the studies used within-subject analyses with repeated measurement of the dependent variables; most employed between-subject group designs (e.g., Amabile & Gitomer, 1984). This makes it difficult to determine the responses of individual subjects and the effects of the variables over time. Also, many studies used statistical procedures to analyze data. Although statistical significance was often ob- tained, inspection of the mean performance data presented for each group sometimes did not indicate strong clinical effects (e.g., Berk, 1976). Further, some of the studies were conducted in analogue or laboratory situations and, thus, if choice did appear to have an effect, it is not dear whether the same effects would have occurred in more naturally oc- curring situations (e.g., Zuckerman et al., 1978). Finally, undergraduates were the subjects in a num- ber of studies, and generality to other populations cannot be assured (e.g., Perlmuter et al., 1980). Recently, however, researchers have begun to ex- amine choice with single-subject designs under more naturally occurring conditions (e.g., Dyer et al., 1989; Kosiewicz, Hallahan, and Lloyd, 1981; Par- sons, Reid, Bumgarner, & Reynolds, 1988).

Another issue relates to the interaction between making a choice and receiving a preferred outcome; that is, the effects of choosing per se may be con- founded by obtaining preferred outcomes. A few studies have examined this issue. The benefits in task performance associated with being assigned a preferred outcome were similar to those associated with choosing a preferred outcome (Kosiewicz et al., 1981; Parsons et al., 1988); however, choice of outcome was preferred by subjects over assign- ment of singular outcomes (Brigham & Sherman, 1973).

Finally, in most of the studies, subject perception of whether or not they made choices was rarely assessed. As Langer (1983) noted, the perception of the individual, not the experimenter, may be most relevant. Many people with developmental disabilities may not perceive choice that is available and, moreover, many may not be skilled in making choices. Therefore, these people may require teach-

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ing to learn how to exercise choice to obtain what they desire.

In summary, this research indicates that indi- viduals frequently prefer situations in which they have choice. It also seems that choice may have benefits for the individual, especially in increasing participation and reducing problem behaviors. More research, however, will be needed to determine the conditions under which choice may have the most benefit for people with developmental disabilities.

PROTECTING BoTH THE RIGHT TO HABILITATION AND THE RIGHT TO CHOICE

Habilitation and the right to choose need not be thought of as conflicting goals. Although extra time and teaching are needed to help clients learn to make choices, this liberty may facilitate habili- tation by increasing client satisfaction with habili- tative goals and procedures, thereby increasing client willingness to participate. Thus, choice making should be integrated into the habilitation process. This does not mean that service providers should sit back and allow clients to "do their own thing," because clients may make a number of bad choices that would hinder habilitation. Rather, service pro- viders should challenge themselves to work harder at teaching and providing opportunities for choice within the context of habilitation. This integration of choice into the habilitation process may be worth the extra time and effort. The following are some possible ways to accomplish this integration:

1. Service providers should emphasize teaching independent living skills and other functional be- haviors that are preferred by the client. This will equip clients with a repertoire of appropriate, as well as preferred, behaviors from which to make choices.

2. Clients should have input in decisions about what skills they will learn and how they will be taught (Guess et al., 1985; Guess & Siegel-Causey, 1985; Turnbull et al., 1989; Turnbull & Turnbull, 1985). The preferences of clients with severe and profound disabilities can be assessed through ob- servation and analysis of their responses to various skills, teaching procedures, and other stimuli (see preference assessment procedures in Caldwell, Tay-

lor, & Bloom, 1986; Green et al., 1988; Mithaug & Hanawalt, 1978; Pace, Ivancic, Edwards, Iwata, & Page, 1985; Wacker, Berg, Wiggins, Muldoon, & Cavanaugh, 1985). For example, Pace et al. (1985) and Green et al. (1988) determined stimuli preferred by persons with severe and profound re- tardation by assessing each client's approach to and avoidance of each target stimulus.

Preference scales or checklists are also available to aid service providers in determining client choices (see Becker & Ferguson, 1969; Goode & Gaddy, 1976; Helmstetter, Murphy-Herd, Roberts, & Guess, 1984; Kishi et al., 1988; Turnbull et al., 1989). These assessments can be conducted by interviewing the client or by interviewing those who know the client well. These reports of client pref- erences can then be validated through use.

The crux of the issue is that interdisciplinary teams (educational or residential) should not make decisions about the client's future without client input (Bennett, 1981). Rather, client preferences, whether stated by the client or determined from observational data, should be considered highly. Further, once the residential or educational plan is implemented, service providers and teachers should continue to observe, evaluate, and talk to the client, being open to changes that reflect client preferences.

3. Clients should be taught how to choose (Brown et al., 1980; Guess & Siegel-Causey, 1985; Shevin & Klein, 1984; Turnbull & Turnbull, 1985). It should be part of their learning curriculum and "subject to task analysis, planning, implementa- tion, and evaluation" (Shevin & Klein, 1984, p. 160). Unfortunately, only a few tested curricula are available for teaching choice. For example, Ha- zel at al. (1988) developed and tested a curriculum to teach skills (including decision making, nego- tiation and communication) to adolescents with mild mental retardation. Their findings showed that the adolescents used these skills to obtain some of their preferences. A number of other materials may be useful in

teaching clients to make choices. First, Wuerch and Voeltz (1982) developed a leisure skills training program for persons with severe disabilities that includes suggestions for teaching choice making.

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Henning and Dalrymple (1986) presented a pro- gram for teaching a youth with autism to choose leisure materials. Guess and Helmstetter (1986), in their instructional curriculum for persons with severe disabilities, described teaching choice making in natural situations.

Other researchers and educators offer suggestions (as opposed to complete teaching curricula) about what to teach in order to prepare clients for making choices. For example, Shevin and Klein (1984) recommended teaching concepts like "choose, now, later, I want, and I do not want, etc." Guess, Sailor, and Baer (1976) described procedures to teach functional use of "yes" and "no." Reese (1986) showed that some clients learned to make complex decisions by listing options, discussing advantages and disadvantages of each option, and choosing the best option. To ensure that clients are taught to make choices,

teachers and other service providers should be well trained in this area and should be accountable for teaching and providing opportunities for choice. This means that institutions should address the need for teacher and residential staff training so that staffand teachers will be well prepared to encourage and teach choice making. Finally, educating teach- ers and staff about client's rights may decrease the likelihood of teachers or staff allowing competing interests (e.g., saving time and effort) to predude the dient's right to choice.

4. Clients at every functioning level should be given opportunities to make choices in their resi- dential and work settings, within and between scheduled activities. Some dients might only be able to make simple choices initially (e.g., what dessert to eat, when to go to bed). Other clients might learn to make more complicated decisions (e.g., how to spend a workshop paycheck, how to handle a problem with another client). Staff mem- bers must be motivated to provide these oppor- tunities for choice. Supervisors can enhance staff motivation by setting up contingencies for these activities (e.g., a program of observation, feedback, and reward). Also, activity schedules should be set up to allow time for choice.

Client refusals, bad choices, and off-task behav- ior should signal staff to examine the situation and

to determine whether allowing more choice or teaching more choices would be of benefit (Griffith & Coval, 1984; Guess & Siegel-Causey, 1985; Shevin & Klein, 1984). For instance, instead of immediately correcting a client who does not want to take her bath because she is watching her favorite television show, staff should evaluate whether it is reasonable to change the time of the bath. If a reasonable preference cannot be honored at a par- ticular time, staff should plan when and how it could be honored in the future. Ifa client repeatedly refuses to engage in habilitation activities after rea- sonable choices have been given, then an objective interdisciplinary review committee should consider whether that choice should be abridged.

CONCLUSION All people have the right to eat too many dough-

nuts and take a nap. But along with rights come responsibilities. Teaching clients how to exercise their freedoms responsibly should be an integral part of the habilitation process. While learning, clients should be encouraged to make as many choices as their abilities allow, as long as these choices are not detrimental to the client or to others.

Although this paper has emphasized the vul- nerability of people with developmental disabilities to rights abridgments, it is important to consider other populations that may be similarly vulnerable, such as children, research participants, and patients receiving medical care or therapy. These people may not be aware of their rights or may give up rights unwittingly in order to obtain desired treatment. Thus, clinicians, researchers, and other professionals must be vigilant in protecting the rights of all people to direct their lives as independently as pos- sible.

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BALANCING THE RIGHTS 89

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Received November 30, 1988 Initial editorial decision March 4, 1989 Revision received July 13, 1989 Final acceptance October 31, 1989 Action Editor, John M. Parrish

Exceptional Children, Vol. 60, No. 3, pp. 215-225. © 1993 The Council for Exceptional Children.

Self-Determination for Persons with Disabilities: Choice, Risk, and Dignity

PATRICKJ. SCHLOSS SANDRA ALPER DONNA JAYNE

University of Missouri-Columbia

ABSTRACT: Self-determination refers to the ability to consider options and make appropriate choices in the home, at school, at work, and during leisure time. A growing philosophical and legal base supports full participation of persons with disabilities in natural settings in the community, and empirical studies document the abilities of persons with severe and multiple disabilities to learn to make choices. Follow-up studies indicate that the majority of special education graduates have not made a successful transition from school to life as an adult in the community. Many remain underemployed or unemployed for reasons associated with lack of decision-making skills. This article presents a rationale for including self-determination in special education curricula. The article describes a framework for providing choices, based on an analysis of risk and benefits. Assessment approaches and teaching strategies are offered.

D Self-determination is the ability of a person to consider options and make appropriate choices regarding residential life, work, and leisure time. Teaching self-determination skills to people with disabilities is receiving increased attention for several reasons. First, there is a growing philo­ sophical base of support for providing choice op­ portunities to people with disabilities. Professional literature clearly indicates that nor­ malization and quality of life are closely associ­ ated with one's ability to choose from a range of life options (Blatt, 1987; Kishi, Teelucksingh, Zollers, Park-Lee, & Meyer, 1988; Mann, Harmoni, & Power, 1989; O'Brien, 1987). The most capable person, restricted from exercising free choice in critical areas, may not have a ful­ filled life.

Second, although limited, there are a number of empirical studies documenting that people with profound and multiple disabilities can learn to make choices (Dattilo & Rusch, 1985; Real on, Favell, & Lowerre, 1990). Studies such as these

Exceptional Children 215

have the potential to significantly alter training approaches for people whose daily lives are highly regimented and controlled by profession­ als. In addition, opportunities to make even the most rudimentary choices (e.g., what to eat) can meaningfully increase the quality of life.

Third, follow-up studies of special education graduates have produced disappointing findings. Researchers have reported that the majority of youth with disabilities have not made a success­ ful transition from school to life as a young adult in the community. It is likely that people with dis­ abilities have acquired basic skills in school. The problem, however, may be their inability to self­ direct the use of these skills when confronted with several options in functional contexts.

This article presents a rationale for teaching self-determination. Further, we present a frame­ work for expanding the choice repertoire of per­ sons with disabilities, based on systematic anal­ yses of risks and benefits.

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IMPORTANCE OF SELF -DETERMINATION

As noted earlier, self-determination is spurred by a growing philosophical base. Many proponents of nonnalization advocate for full integration of persons with disabilities in natural community settings (Brown et al., 1989; Stainback, Stainback, & Forest, 1989). These settings are in­ herently less predictable and harder to control than more restrictive settings. They contain many choices and demand prudent decisions. As we in­ creasingly enable all persons with disabilities to live, go to school, work, and spend leisure time in community settings, we must place greater em­ phasis on developing self-detennination. Wolfensberger (1972, p. 238) stated:

We should assist a person to become capable of meaningfully choosing for himself among those normative options that are considered moral and those that are not. If a person is capable of meaningful choice, he must also risk the consequences.

In a now classic article, Perske (1972) identi­ fied a vital connection between choice, risk, and dignity. People without disabilities, Perske noted, are faced with many decisions that involve some degree of physical or emotional risk. To deny the right to make choices in an effort to pro­ tect the person with disabilities from risk, he ar­ gued, is to diminish their human dignity. Blatt (1987) also argued eloquently for the rights of persons with disabilities, including their right to choice and risk. Blatt stated that freedom to make choices, even choices that may result in harm, is a freedom that most people cherish. Freedom of choice is one of the highest American ideals. Why then, asked Blatt, should we hold a different set of ideals and values for people with disabili­ ties?

Research on the abilities of people with intel­ lectual disabilities to make decisions and solve problems supports the efficacy of teaching self­ detennination. Zetlin and Gallimore ( 1980, 1983) have demonstrated that people with mild to moderate mental retardation are able to learn decision-making strategies with the aid of sys­ tematic verbal prompting in the form of teacher questioning. These researchers suggested that in­ structional strategies commonly employed in special education classrooms, such as teaching rote responses and providing limited options from which the student has to choose, may pre-

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elude opportuntities to learn decision-making skills.

Other researchers have focused on assisting people with severe disabilities to make choices and express preferences. Goode and Gaddy (1976) developed an observational technique for recognizing choices made by people with the multiple disabilities of mental retardation, deaf­ ness, and blindness. Parsons and Reid (1990) demonstrated how a repeated, paired-item as­ sessment procedure allowed people with pro­ found mental retardation to express food and drink preferences. Koegel, Dyer, and Bell ( 1987) described a procedure for identifying child-pre­ ferred play activities in children with mental re­ tardation and autism. These authors also reported a decrease in social avoidance behaviors when children engaged in play activities they selected, as opposed to activities arbitrarily chosen by an adult.

The need for self-determination skills by peo­ ple with disabilities has also been indicated by follow-up studies. These studies revealed that less than one third of all working-age adults with intellectual disabilities are employed, while the overall employment rate in the United States is about 95% (Harris & Associates, 1986). Fewer than 15% of all persons with disabilities who are out of school more than 1 year enroll in voca­ tional training, compared to 56% of high school graduates without disabilities (Wagner, 1989). More than 40% of employed adults with disabil­ ities earn below minimum wage (Hasazi, Gor­ don, & Roe, 1985; Neel, Meadows, Levine, & Edgar, 1988).

Investigators examining reasons for occupa­ tional failure among young adults with disabili­ ties report that few individuals f.µl to secure or lose jobs because of inability to perform required tasks. Rather, failure has been linked to lack of appropriate decision-making skills related to the job and inability to adjust to work situations (Benz & Halpern, 1987; Schloss, Hughes, & Smith, 1989). Johnson (1988) reported that the ability to identify problems, identify possible al­ ternatives, and select the best alternative are com­ petencies used by employers to define employ­ ability.

Harris and Associates ( 1986) indicated that approximately 8% of the U.S. gross national product is spent each year on unemployed or un­ deremployed people with disabilities. Most of this amount supports dependence rather than in­ dependence. Schloss, Wood, and Schloss (1987)

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compared the net disposable income of people with disabilities who were employed with the in­ come of those who received social support (e.g., Supplemental Security Income, food stamps, etc.). The authors reported no substantial differ­ ence in net disposable income regardless of em­ ployment or dependence on social welfare.

It is likely that the desire for physical and emo­ tional safety, coupled with lowered expectations, has restricted choices available to people with disabilities. Our inability to foster self-determi­ nation may be a major detriment to the full inclu­ sion of people with disabilities in the mainstream of American life.

BALANCING RISKS AND BENEFITS

Despite arguments supporting the rights of peo­ ple with disabilities to exert free choice, advo­ cates caution that granting unrestricted choice may be detrimental to the health and welfare of the individual. Also, the practice of self-determi­ nation by a person with disabilities may violate the rights of others. For example, parents may be­ lieve that their rights to make decisions about how much risk is reasonable for their child are being usurped when professionals advocate for the dignity of risk. Kaminer and Jedrysek (1987) maintain that while professionals have more ex­ pertise about disabling conditions, parents typi­ cally are more familiar with the behavior of their children and the specific dangers of their day-to­ day environment.

In a review of literature on physical risks and injury of children and adolescents with mental re­ tardation, Kaminer and Jedrysek (1987) found only a few reports on risk assessment. These au­ thors noted the need for more data-based assess­ ments of risk relative to age and abilities of the individual, nature of the dangers posed in the community settings frequented by the individual, and adequacy of resources and supports avail­ able. They emphasized the need to balance the freedom of choice for the person with disabilities with the rights and needs of families and other individuals. They further argued that decisions regarding self-determination and degree of risk tolerable are likely to be prudent if based on data, rather than solely on values.

It is important that all members of society be accorded liberties defined in the U.S. Constitu­ tion. The mere presence of a disability should not result in the suspension of constitutional guaran-

Exceptional Children

tees without further analysis (Alper, Schloss, & Schloss, in press).

Suspension of rights should occur only after judicial analysis. Unfortunately, this analysis has traditionally followed a simplistic plan and has been based on limited information. Cobb ( 1973), for example, has concluded that people with dis­ abilities have been subject to the negative pre­ sumption of society. That is, they are presumed to be ineligible for constitutional guarantees be­ cause of the disability. Accordance of rights oc­ curs only after the person demonstrates eligibil­ ity. Mainstream society, on the other hand, benefits from positive presumption. Our rights are suspended only after we are proven to be in­ eligible.

The following section describes a decision­ making model that is based on the positive pre­ sumption of constitutional guarantees. It pro­ vides a set of decision rules that ensure that rights are suspended only when self-determination is expected to produce unwarranted physical or emotional risk.

CHOICE CONTINUUM

The three-dimensional continuum allows for the systematic expansion of the choice status for peo­ ple with disabilities. It is based on the following premises:

1. Liberties are not denied for arbitrary or pejo­ rative reasons.

2. The individual has maximum opportunity to express preferences, with others according full respect to those wishes.

3. Services are not suspended when required for health and safety.

4. Risk and benefit are balanced. 5. The ability of an individual to make choices

is dynamic; that is, choice status may increase as a person benefits from new learning.

Use of the choice continuum recognizes that comprehensive assessment of an individual may indicate the need to suspend rights. In some cases, this decision is highly objective and socially val­ idated. For example, few would argue that people who are blind should receive drivers' licenses. In other instances, decisions regarding free choice are highly moot. Many would argue the merits of restricting sexual rights of individuals with mild disabilities (c.f., Rosen, 1972; Wolfensberger, 1972).

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No single authority or author is able to resolve these issues. The process outlined here, however, describes a systematic approach to ensure that due process occurs. We believe that this process begins with the careful study of the individual, his or her family, immediate social surroundings, and other factors. Based on this study, a group of concerned individuals, along with the person with disabilities, may make judgments. As has been emphasized, the ultimate goal of the judg­ ment is a thoughtful balance of the potential for risk with the benefit of personal responsibility and freedom.

Dimension 1: Source oflnput

The first dimension of the choice continuum con­ cerns how much input a person with disabilities has in making a particular decision. This dimen­ sion has five levels, ranging from no input to total control over the decision. These levels are as fol­ lows:

1. The individual has complete responsibility to make a choice regarding some event in his or her day-to-day life. Parents and professionals may be asked for their input and advice, at the discretion of the person with disabilities. A person with mental retardation may, for exam­ ple, plan 3 days of meals and then select a store in which to purchase the food.

2. Professionals or parents have input into deci­ sions, but the final and binding choice is made by the person with disabilities. Professionals may assist a young adult in locating two ac­ ceptable apartments, but the final selection is made by the person with disabilities.

3. Decision making is viewed as a mutual, recip­ rocal process in which the person with disabil­ ities is an equal partner. A student may attend her own Individualized Education Program (IEP) meeting and prioritize objectives in co­ operation with her parents and teachers.

4. Decisions are made by parents and profes­ sionals, with some input from the client. For example, a person with disabilities might be asked to state his preferences for living alone or with roommates, but the final decision would be made by others.

5. The individual with disabilities has no input into decisions regarding his or her day-to-day life. Every choice is made by parents or pro­ fessionals. This may be the case in some large, congregate residential institutions.

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Dimension 2: Degree of Risk

The second dimension of the choice continuum addresses the nature of the choice or decision. Specifically, the degree of physical, emotional, economic, or legal risk involved is considered. Of particular importance are dangerous conse­ quences that may result from an incorrect choice. This dimension includes four levels:

1. The choice involves some potential for imme­ diate risk, but little possibility of long-term harm to the individual or others. These activ­ ities generally include routine events (e.g., what to eat for dinner, which shirt to wear). A poor choice of food could result in nutritional imbalance or digestive distress.

2. The decision involves mild risk with minimal possibility oflong-lasting harm to the individ­ ual or others. One example might include choosing to spend one's lunch money on video games and having no lunch as a result. Another example is boarding the wrong bus and becoming lost. The adverse effect of this poor choice would be the inconvenience of ar­ riving late at the destination.

3. The choice results in a moderate probability for long-lasting harm to the individual or oth­ ers. Becoming sexually active without birth control, for example, has a moderate chance for yielding an unwanted pregnancy. Marry­ ing an abusive or chemically dependent per­ son is a related example in which there is a moderate chance for lasting harm.

4. The decision involves an almost certain out­ come that includes personal injury. A decision to abuse addictive substances on a daily basis, for example, is certain to produce long-term personal harm.

It is important to note that the risk dimension is evaluated within the context of high-probabil­ ity responses of the individual to the choice. For a normally prudent person, risks associated with the range of high-probability outcomes for the choices of snack food are fairly small. One would expect that the most hazardous choice would be a food high in fat, sodium, or calories. A young child with severe disabilities, however, may have a modest likelihood of selecting poisons given an unrestricted choice. Consequently, the same choice for two individuals may yield different risk projections. Further, the input status for the first individual would be unrestricted, whereas

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parent and professional input would be imposed for the second.

Dimension 3: Degree to Which Input Is Binding

The third dimension of the choice continuum em­ phasizes the degree to which the person with dis­ abilities is required to accept the input of others in decision making. The levels correspond to the five levels in Dimension 1, as follows:

1. Outside input is nonbinding. The individual chooses whether to solicit input on a given issue. Having received input, he or she may accept some or all of the advice received, or may reject it in favor of another course of ac­ tion. For example, the individual might seek advice regarding listings in employment ads, but makes the final decision on where to apply for work.

2. Outside input is binding only on a portion of the decision. A parent or professional points out items of clothing suitable to the antici­ pated environment, and the person with dis­ abilities makes the final choice from the items recommended.

3. Outside input is binding once the individual's input has been given equal weight in the de­ velopment of a range of choice options. The student's vocational interests are given con­ sideration in the development of job training sites.

4. Outside input is binding, with the individual's input considered only if deemed advisable by others. An individual with diabetes might be asked about food preferences. Whether or not those preferences are included in the diet de­ pends on the advice of medical professionals.

5. External individuals exert total control over the outcome. Circumstances have made op­ tions unavailable to the individual with dis­ abilities, or she is considered unable to meaningfully contribute to safe choices.

The extent to which an individual is granted responsibility in making choices (Dimension 1 ), the degree of harm that could result from making a bad choice (Dimension 2), and the degree to which outside input is binding (Dimension 3) must all be considered on a choice-by-choice basis when encouraging or limiting personal free­ dom. The determination of choice status will re­ late to the degree of confidence in the person's ability to make effective Judgments within each

Exceptional Children

risk category. The judgment of a person's capa­ bility is based on knowledge of basic skills the person possesses relating to the ultimate decision, past experiences with similar decisions, and the presence of social and emotional problems that may detract from an effective decision.

The ultimate goal for each choice is for the individual to exercise as much personal freedom as possible while minimizing personal risk. For example, a less capable person may be accorded maximum self-determination in low-risk situa­ tions. She is encouraged to exercise full freedom of choice regarding matters that pose no possibil­ ity for harm. Alternately, she is accorded less control (parent/professional judgment, with some input from the individual) for situations with moderate probability for lasting harm. An­ other, more capable individual may be accorded full freedom of choice in all but situations with potential for long-term harm. In these extreme situations, mutual participation of parents, pro­ fessionals, and the individual in the decision is required.

As we have emphasized previously, the care­ ful assessment of the learner is central to the iden­ tification of current choice status. Assessment is also important for establishing objectives and de­ veloping strategies for normalizing choice status. The following sections will discuss assessment approaches.

TRADITIONAL MEASURES RELATED TO SELF-DETERMINATION

Assessment methods must be appropriate to the purpose and provide the information necessary to make education and training decisions (Browder, 1987). Variables that are relevant to educational decisions about academic subjects are not neces­ sarily relevant to decisions regarding choice. For example, though the results of an intelligence test are highly correlated with success in school, they fail to address the behaviors relevant to sound de­ cision making. Sattler (1974) emphasizes that in­ telligence tests fail to measure the processes underlying a response, they may be ineffective predictors of functional outcomes ( e.g., employ­ ment success, community adjustment, etc.), and they are not sensitive to creative or unconven­ tional solutions to daily problems.

Similarly, adaptive behavior scales may not be effective when used in isolation to measure a person's ability for self-determination. Adaptive behavior refers to the ability to meet age and cul-

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turally normative standards of personal indepen­ dence and cope with the social demands of the environment (Grossman, 1983). Measures of adaptive behavior may indicate immediate train­ ing needs but are not predictive of long-term functioning. As Leland (1978) pointed out, deal­ ing with social demands is "the reversible aspect of mental retardation, and it reflects primarily those behaviors which are most likely to be mod­ ified through appropriate treatment or training methods" (p. 28). Instruments designed to assess adaptive behavior sample a limited number of be­ haviors. Choice-making is highly complex and contingent on the individual's dynamic interac­ tion with the environment. Behaviors reflecting this interaction may or may not be sampled by any one standardized test of adaptive behavior.

Finally, measures of objective physiological processes (e.g., visual acuity, auditory acuity, physical capability, etc.) are often invalidated by compensatory training and assistive devices. Short- and long-term goals within the dimensions of the choice continuum will be determined by the individual's current ability to recognize and deal with individual limitations. The decision to allow a person who is blind the choice to travel alone will be influenced by the skills attained in the use of a guide dog or an assisting device such as a cane. The choice to use a motorized wheel­ chair by a person who has limited mobility will be governed by that person's ability to operate the chair safely for self and others.

In view of these limitations, we are proposing an ecological approach to identifying current choice status, establishing methods for enhanc­ ing choice, and establishing objectives leading to normal choice status. The next section describes the situation-specific assessment of choice status.

SITUATION-SPECIFIC ASSESSMENT

and the second evaluation (risks associated with possible adverse choice); provides guidelines for the third evaluation ( the degree of input required for the learner to arrive at an optimum choice). Each of these appraisals is discussed separately.

Situation-specific assessment is conducted to identify the learner's choice status for any given choice situation. A choice situation is defined as any discrete opportunity in which the learner may select from one or more options. Three specific evaluations are made in the situation-specific as­ sessment.

As in the choice continuum, the extent to which the evaluation areas overlap depends on the degree of potential risk and the skill level of the person in question. A combination of the as­ sessment results from the first evaluation (the learner's potential for making an adverse choice)

220

Learner's Potential for Making an Adverse Choice

As emphasized previously, the degree of risk as­ sociated with a particular choice is limited by the range of possible responses by an individual. A youth whose past free-time pursuits in class have included only academically or socially enhanc­ ing activities may be allowed unrestricted future choices. Alternately, a child who has become ag­ gressive during some free-time activities may be restricted by the teacher. In the first case, risks associated with probable responses by the student are very low. In the second, the risks are much higher.

Similarly, a youth residing in a group home may be provided unrestricted choice over meal plans if a review of his or her discretionary food consumption indicates appropriate nutritional balance. If the review of discretionary food con­ sumption indicated an excess of fats and carbo­ hydrates and a deficiency of vitamins and miner­ als, staff members may guide food selections.

Assessment of the learner's potential for mak­ ing an adverse choice is conducted through three basic methods. The first includes unstructured in­ terviews with parents and other professionals. Questions asked in these interviews address the individual's past responses to similar choices. Note that the validity of interview data (i.e., ac­ curacy in predicting future responses to choice options) is related to the recency and the similar­ ity of the experience to the current situation. The more recent the experience, the less likely that maturation and education will produce dissimilar responses. The more similar the situation, the less likely that alternate variables will produce differ­ ent outcomes (Schloss & Sedlak, 1986).

The second assessment method includes un­ structured interviews with the student or student response samples. An initial question may ad­ dress the range of responses the individual has exhibited in past choice situation. For example, a teacher may ask students what leisure activities they participate in when given a choice. Simi­ larly, the teacher may ask a student to identify six of their favorite meals. Follow-up questions may lead to a ranking of possible responses based on

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the probability of occurrence or personal prefer­ ence.

Browder (1987) has described techniques for identifying preferences of individuals with lim­ ited verbal skills. The methods involve construct­ ing situations analogous to the natural choice sit­ uation but devoid of risks. For example, a driving simulator may reflect a student's ability to make safe choices behind the wheel without risks asso­ ciated with driving a real automobile. Consumer simulations may reflect how a youth may manage money without the risks associated with unwise use of credit cards or checks.

The extent to which student responses in sim­ ulated conditions reflect likely choices in the nat­ ural setting cannot always be predicted. In gen­ eral, however, simulations that include numerous salient stimuli found in the real situation may more accurately reflect natural performance when contrasted with simulations possessing few stimuli in common with the actual setting.

It is important to note that individuals who have been exposed to a limited number of activ­ ities and materials may react out of habit rather than free choice. They may need repeated expo­ sure to novel experiences before a true assess­ ment of preference can be made.

The third assessment method includes direct observation of the student in similar situations. Though this approach may be the most difficult and risky, it is also the most valid. Direct obser­ vation involves placing the student into the natu­ ral situation in which choices are to be made. For example, community-based leisure choices can be evaluated by permitting the student to go downtown during the evening with minimal guidance. Menu choices may be assessed by ob­ serving the person as he or she orders at a restau­ rant.

Risks Associated with Adverse Choices

We noted earlier that the extent to which an indi­ vidual is accorded freedom of choice is dictated, in part, by risks associated with a less than opti­ mum outcome. These risks are judged by the de­ gree to which any possible response to a choice situation may result in harm to the individual or others. For example, a decision that universally yields minimal possibility for harm is almost cer­ tain to be provided minimal external input. How­ ever, a decision that yields a moderate possibility for lasting harm may requfre substantial involve-

Exceptional Children

ment of parents, professionals, and the individ­ ual.

The assessment of risk for a particular re­ sponse to a choice situation is complex. We must consider several factors. Is the possible harm of a short-term nature (e.g., brief period of hunger resulting from spending lunch money on video games) or long-term (e.g., loss of income result­ ing from being fired)? Is the possible harm psy­ chological ( e.g., loss of friendship resulting from insulting an individual) or physical (e.g., weight gain resulting from poornutrition)? Finally, is the harm direct and predictable (e.g., physical injury from an untrained individual falling off a bicycle) or indirect and unpredictable ( e.g., getting a cold from drinking from a dirty glass)?

Input Required for Optimum Choice

The preceding assessment approaches collec­ tively indicate the range of possible responses to a choice situation and the risk associated with possible responses. As emphasized earlier, our major goal is to provide only the input necessary to mitigate against unwanted risk. This assess­ ment is conducted to balance input with risk.

Methods for assessing input requirements are similar to those used for evaluating probable stu­ dent responses to choice situations. Parent and professional interviews, student interviews, and direct observation can all contribute to determin­ ing the amount of input needed to limit risks as­ sociated with a given choice.

Questions asked during unstructured inter­ views with parents and other professionals ad­ dress the individual's past responses to similar choices given varying levels of structure. For ex­ ample, will the youth have a balanced and calo­ rie-controlled diet if no menu-planning assis­ tance is provided? If not, will consultation be sufficient to avoid the risks associated with a poor diet? Unstructured interviews with the student are also used to assess the extent of support re­ quired to mitigate against risk. Initial interview questions focus on the extent to which support from others may restrict the range of responses. Similarly, observations in analogue situations may be conducted with less verbal students to in­ dicate the extent of support required to minimize risk. Finally, direct observation of the student in natural situations may provide the most valid in­ formation on the extent of input required.

Situation-specific assessment has major social and cultural implications. Choices are deemed

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appropriate or inappropriate in relation to the individual's community and family background (Mercer, 1972). For some families, substantial risks are associated with dropping out of school. Education is substantially less important for oth­ ers. The possibility of choosing to enter the mil­ itary may be viewed highly favorably (low risk) by some families, but unfavorably (high risk) by others.

SETTING-SPECIFIC ASSESSMENT

Choice status is dynamic. As one benefits from maturation and new learning experiences, the ability to make optimum choices increases. Further, educational efforts consistently focus on the development of a student's ability to make optimum choices under increasingly risky and complex circumstances. Therefore, a student's current placement must be continuously evalu­ ated to ensure that available choice situations re­ flect his or her choice status.

It is important to highlight the distinction be­ tween expanding an individual's choice status

The preceding assessment objective focused on while maintaining his or her placement in a re­ the extent to which personal freedom is accorded strictive setting and moving the person to a less given specific choice situations. To a large extent, restrictive setting as self-determination skills in­ the range of possible choice situations is limited crease. Walsh and McCallion ( 1987) argued that by the settings in which an individual resides, placement in normalized, small community­ works, is educated, and participates in leisure ac­ based programs does not automatically preclude tivities. In general, the more normalized the set­ problems of humanity, rights, and quality of life. ting, the greater the number of choice situations. These authors contended that through proper or­ The less normal, the fewer choice situations. ganization and management, state-of-the-art pro­

Large institutions, for example, are largely grams can be developed in small institutions. void of choice situations commonly found in Our position is that as a person's skills in as­ mainstream society. By the very nature of the set­ suming input into potentially risky choices in­ ting, residents are not able to choose what to eat, crease, movement to a less restrictive setting is where to eat, where to sleep, what recreational preferable. Undoubtedly, it is possible to expand activities to pursue, what jobs to perform, etc. the range of choices available within an institu­ Choice situations are generally limited to very re­ tional or other sheltered setting. The very nature stricted options (e.g., watch TV or sit quietly, eat of these facilities, however, will limit this range. the meal that is served or wait for the next meal It is unlikely, for example, that any institution period, go to class or remain in the living unit, could operate with an open-door policy under etc.). Most often, each of the preceding restricted which residents could come and go as they choices is accompanied by a highly directive set pleased. However, even if such a policy were to of contingencies ( e.g., if you remain in the living be implemented, those persons who made appro­ unit during class periods, you are denied activity priate choices would most likely be able to move privileges). to a less restrictive domestic setting in the com­

In view of the critical relationship between munity. placements and the availability of high- to low­ A student who frequently faces choice situa­ risk choice situations, settings should be selected tions with numerous adverse consequences for only after a careful consideration of the responses that he or she is likely to engage in may individual's choice status. The only justification require additional input available through a more for a restrictive placement is to provide for the restrictive setting. Conversely, a student who is safety of an individual with a history of making placed in a setting void of choice situations that choices resulting in physical or emotional harm make use of his or her ability to provide optimum (low-choice status). Thus, the safety of a person responses with minimal input, would benefit who had made frequent attempts at suicide could from a less restrictive setting. only be guaranteed in a restrictive setting. In It is important to note that beyond potential other instances, a high degree of safety for a low­ risk, available input for choices also indicates the status choice maker may be provided through appropriateness of a given placement. Main­ building prosthetics into a less restrictive setting. stream classrooms generally include a large num­ A young man with a history of elopement may be ber of students with a single teacher. The teacher given access to community settings with an ap­ may not be available to provide input to the vast propriate staffing plan and predetermined contin­ majority of choice situations faced by the stu­ gencies in the event he tries to run away. dents. A self-contained class may include a small

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number of students with a teacher and a parapro­ fessional. This setting may provide a substantial amount of input for all possible choice situations. Even within placements, additional services can be offered to increase the availability of input to the student. Extraordinary-care aides, interpret­ ers, and consultants can all increase available input in a particular setting.

ENHANCEMENT OF CHOICE STATUS

Exceptional Children

of the class, reading assignment must include one of eight classics, recess activities cannot include physical contact).

3. Provide a reasonable period of time for the student to self-initiate with no input. If no choice is made, provide unrestrictive guid­ ance.

4. Provide a reasonable period of time, and if no response is made, provide partially restrictive guidance. If no choice is made, provide fully restrictive guidance.

Choice status, as determined by the relationship 5. Provide a reasonable period of time, and if no between input and situations, should not be static. response is made, choose on behalf of the The goal of every education and rehabilitation learner. program should be to reduce the level of input 6. If at any time in the preceding process a high­ while increasing the degree of risk in the situation risk choice is made or the choice conflicts with under which any individual may make choices. a prior restriction, negate the choice and pro­ Just as the normal child is accorded little input vide more restrictive guidance. over most decisions early in life, so do we expect

The preceding sequence of prompts makes use that input will be restricted for most young indi­ viduals with developmental delays. As educa­ of naturally occurring choice situations. This ap­

proach is favored because it does not require the tional services expand the experiences and student to generalize from training to natural set­capabilities of the individual, so do we expect the tings. The approach is highly concrete, and all choice status to normalize. natural cues are available. Finally, this approach The ultimate goal is for an individual to ap­ is consistent with choice situations most likely to proach Level l or 2 input for the most provoking

situations in their current setting. Once this is face the learner. Consequently, little time is spent

achieved, the student may be moved to a less re­ preparing the learner for choice situations that in­ strictive setting that offers more complex choice frequently occur. The largest number of trials are

devoted to the most frequently occurring choice situations and more limited input. situations. The principal method for enhancing choice

status in a particular setting is through prompt management. The objective of effective prompt management is to provide only the level of input necessary to ensure an appropriate response in the choice situation. Levels of prompts common to most choice situations coincide with the input dimensions on the choice continuum. From least to most intrusive, they include: total indepen­ dence in making a choice; guidance that does not restrict the actual response of the student; guid­ ance that may partially restrict the actions of the individual; guidance that more fully restricts the actions of the individual; and the parent or pro­ fessional who fully restricts, or acts on behalf of the student.

The preceding prompts are used in a particular choice situation in the following manner:

l. Identify the discrete choice situation (e.g., op­ portunity for the student to select a seat in the classroom, choose a reading assignment, de­ termine recess activities, etc.).

2. Provide a priori restrictions in the choice ( e.g., choices of seats are limited to those in the front

CONCLUSION

We have presented a rationale for teaching self­ determination skills and have described a frame­ work for enhancing an individual's choice status. This framework includes a decision model for ex­ panding naturally occurring situations that in­ volve choice. Expanding or restricting the range of choices available to an individual is based on a systematic risk/benefit analysis.

The approach we recommend for identifying a learner's choice status emphasizes criterion­ referenced situation- and setting-specific assess­ ments over other, more traditional, assessment devices. The setting, particular choices involved in that setting, learner's degree of input into mak­ ing the choice, and potential risks and benefits are all carefully assessed.

Guidelines for teaching self-determination skills to people with disabilities are based on sys­ tematic prompt management within naturally oc­ curring situations that involve choice. Simulated training may be used in those situations in which

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the choice is important, but rarely occurs, or in which a high degree of risk is involved.

The preceding approaches to self-determina­ tion address the student's reactions to specific choice situations. Equally important is the learner's general preparation to benefit from op­ tions. As Gardner ( 1977) emphasized, freedom is the ability to select from a wide range of response options under specific circumstances. He argued that students with limited learning and behavioral abilities may have a limited repertoire from which to draw appropriate responses. Conse­ quently, expanding one's choice status depends largely on the development of skills applicable to choice situations. All prosocial responses devel­ oped by parents and professionals may ultimately enhance a student's competence in making inde­ pendent and appropriate choices in complex and potentially risky situations.

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Hasazi, S. B., Gordon, L. R., & Roe, C. A. (1985). Fac­ tors associated with the employment of handicapped youth exiting high school from 1979-1983. Excep­ tional Children, 51, 455-469.

Johnson, C. (1988, October). Reauthorization of the Carl D. Perkins Vocational Education Act. Paper presented at the Missouri LINC: Vocational Special Needs Fall Conference, Columbia, MO.

Kaminer, R. K., & Jedrysek, E. ( 1987). Risk in the lives of children and adolescents who are mentally re­ tarded: Implication for families and professionals. In R. F. Antonak & J. A. Mulick (Eds.), Transitions in mental retardation: The community imperative revisited (pp. 72-88). Norwood, NJ: Abkx.

Kishi, G., Teelucksingh, B., Zollers, N., Park-Lee, S., & Meyer, L. (1988). Daily decision-making in com­ munity residences: A social comparison of adults Alper, S., Schloss, P. J., & Schloss, C. N. (in press). with and without mental retardation. American Jour­Families of persons with disabilities: Consultation nal on Mental Retardation, 92, 430-435. and advocacy. Boston: Allyn & Bacon.

Koegel, R. L., Dyer, K., & Bell, L. K. M., (1987). The in­Benz, & Halpern, M. (1987). Transition services fluence of child-preferred activities on autistic for secondary students with mild disabilities: A state­ children's social behavior. Journal of Applied Behav­wide perspective. Exceptional Children, 53, 507-514. ior Analysis, 20, 243-252. Blatt, B. ( 1987). The community imperative and human

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ABOUT THE AUTHORS

PATRICK J. SCHLOSS (CEC #89), Professor and Director of the Office of Research; SANDRA ALPER (CEC MO Federation), Associate Professor of Special Education; and DONNA JAYNE, Doctoral Candidate, College of Education, University of Missouri-Columbia.

Manuscript received October 1991; revision ac­ cepted January I 993.

Exceptional Children 225

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