Ethical Dilemma
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.
REFERENCES
Amabile, T. M., & Gitomer, J. (1984). Children's artistic creativity: Effects of choice in task materials. Personality & Social Psychology Bulletin, 10, 209-215.
American Bar Association. (1975). The mental health- retardation legal services project handbook: Legalprin- ciples for representing the mentally different. Seattle: Author.
Becker, R. L., & Ferguson, R. E. (1969). Assessing ed-
BALANCING THE RIGHTS 87
ucable retardates' vocational interest through a non-read- ing technique. Mental Retardation, 4, 20-25.
Bennett, M. (1981). Reviewing an individual habilitation plan: A lawyer's guide. University of Arkansas Little Rock Law Journal, 4, 467-485.
Berk, R. A. (1976). Effects of choice of instructional meth- ods on verbal learning tasks. Psychological Reports, 38, 867-870.
Brigham, T. A. (1979). Some effects of choice on academic performance. In L. C. Perlmuter & R. A. Monty (Eds.), Choice and perceived control (pp. 131-142). Hillsdale, NJ: Erlbaum.
Brigham,T.A.,&Sherman,J.A. (1973). Effectsofchoice and immediacy of reinforcement on single response switching behavior of children. Journal of the Experi- mental Analysis of Behavior, 19, 425-435.
Brigham, T. A., & Stoerzinger, A. (1976). An experimental analysis of children's preference for self-selected rewards. In T. A. Brigham, R. Hawkins, J. Scott, & T. F. McLaughlin (Eds.), Behavior analysis in education (pp. 47-55). Dubuque, IA: Kendall Hunt.
Brown, L., Falvey, M., Vincent, L., Kage, N., Johnson, F., Ferrara-Parrish, P., & Gruenewald, L. (1980). Strat- egies for generating comprehensive, longitudinal and chronological age appropriate individual educational plans for adolescent and young severely handicapped students. In L. Brown, M. Falvey, D. Baumgart, I. Pumpian, J. Schroeder, & L. Gruenewald (Eds.), Strategiesfor teach- ing chronological age appropriate functional skills to adolescent and young adult severely handicapped stu- dents (pp. 10-34). Madison, WI: University of Wis- consin-Madison and Madison Metropolitan School Dis- trict.
Buyer, L. S., Berkson, G., Winnega, M. A., & Morton, L. (1987). Stimulation and control as components of ste- reotyped body rocking. American Journal of Mental Deficiency, 91, 543-547.
Caldwell, M. L., Taylor, R. L., & Bloom, S. R. (1986). An investigation of the use of high- and low-preference food as a reinforcer for increased activity of individuals with Praeder-Willi Syndrome. Mental Deficiency Research, 30, 347-354.
Catania, A. C. (1979). Learning. Englewood Cliffs, NJ: Prentice-Hall.
Catania, A. C., & Sagvolden, T. (1980). Preference for free choice over forced choice in pigeons. Journal of the Experimental Analysis of Behavior, 34, 77-86.
Champlin, S. M., & Karoly, P. (1975). Role of contract negotiation in self-management of study time: A prelim- inary investigation. Psychological Reports, 37,724-726.
Corah, N. L., & Boffa, J. (1970). Perceived control, self- observation, and response to aversive stimulation. Jour- nal of Personality and Social Psychology, 16, 1-4.
Dedaration of the Rights of Mentally Retarded Persons. General Assembly Resolution 2856,26, U.N.G.A. or Supp. 3 at 73, U.N. Doc. A/8588, 1972. In Evans, D. P. (1983). The lives of mentally retarded people (p. 180). Boulder, CO: Westview Press.
DeGood, D. E. (1975). Cognitive control factors in vas- cular stress responses. Psychophysiology, 12, 399-401.
Developmental Disabilities Assistance and Bill Of Rights Act, 42 U.S.C. §§ 6001 et seq. (1976 & Supp. III 1979).
Devine, D. A., & Fernald, P. S. (1973). Outcome effects of receiving a preferred, randomly assigned, or nonpre- ferred therapy.Journal of Consulting and Clinical Psy- chology, 41, 104-107.
Dickerson, E. A., & Creedon, C. F. (1981). Self-selection of standards by children: The relative effectiveness of pupil-selected and teacher-selected standards of perfor- mance.Journal ofApplied Behavior Analysis, 14, 425- 433.
Dobbins, M. (1988). Effects ofself-pacing on compliance, aberrant behavior, and work rates ofmentally retarded students. Unpublished master's thesis, University of Kansas, Lawrence.
Doe v. Bolton, 410 U.S. 179 (1973). Dyer, K., Dunlap, G., & Winterling, V. (1989, May). The
effects of choicemaking on the problem behaviors of students with severe disabilities. In G. Dunlap (Chair), Community-referenced research on behavior manage- ment. Symposium conducted at the fifteenth annual con- vention of the Association for Behavior Analysis, Mil- waukee.
Education for All Handicapped Children Act of 1975, 20 U.S.C. §§ 1401 et seq. (1976 & Supp. III 1979).
Favell,J. E.., Favell,J. E., Riddle, I., & Risley, T. R. (1984). Promoting change in mental retardation facilities: Get- ting services from the paper to the people. In W. P. Christian, G. T. Hannah, & T. J. Glahn (Eds.), Pro- gramming effective human services (pp. 15-37). New York: Plenum.
Felixbrod, J. J., & O'Leary, K. D. (1973). Effects of re- inforcement on children's academic behavior as a function of self-determined and externally imposed contingencies. Journal of Applied Behavior Analysis, 6, 241-150.
Fixsen, D. L., Phillips, E. L., & Wolf, M. M. (1973). Achievement place: Experiments in self-government with pre-delinquents.Journal ofApplied Behavior Analysis, 6, 31-47.
Gardner, J. F., & Chapman, M. S. (1985). Staff devel- opment in mental retardation services. Baltimore: Paul H. Brookes.
Geer, J. H., Davison, G. C., & Gatchel, R. I. (1970). Reduction of stress in humans through nonveridical per- ceived control of aversive stimulation. Journal of Per- sonality and Social Psychology, 16, 731-738.
Geer, J. H., & Maisel, E. (1972). Evaluating the effects of the prediction-control confound. Journal of Person- ality and Social Psychology, 23, 314-319.
Glass, D. C., Singer, J. E., & Friedman, L. N. (1969). Psychic cost of adaptation to an environmental stressor. Journal ofPersonality and Social Psychology, 12, 200- 210.
Glynn, E. L. (1970). Classroom applications of self-deter- mined reinforcement. Journal of Applied Behavior Analysis, 3, 123-132.
Goode, D. A., & Gaddy, M. R. (1976, December). As- certaining choice with alingual, deaf-blind and retarded clients. Mental Retardation, pp. 10-12.
88 DIANE J. BANNERMAN et /l.
Green, C. W., Reid, D. H., White, L. K., Halford, R. C., Brittain, D. P., & Gardner, S. M. (1988). Identifying reinforcers for persons with profound handicaps: Staff opinion versus systematic assessment ofpreferences.Jour- nal of Applied Behavior Analysis, 21, 31-43.
Griffith, R. G., & Coval, T. E. (1984). The mentally retarded and the right to refuse habilitation. In S. E. Breuning,J. L. Matson, & R. P. Barrett (Eds.), Advances in mental retardation and developmental disabilities (Vol. 2, pp. 237-268). Greenwich, CT: JAI Press Inc.
Guess, D., Benson, H. A., & Siegel-Causey, E. (1985). Concepts and issues related to choice-making and au- tonomy among persons with severe disabilities. Journal of the Association for Persons with Severe Handicaps, 10, 79-86.
Guess, D., & Helmstetter, E. (1986). Skill duster instruc- tion and the individualized curriculum sequencing mod- el. In R. Horner, L. Meyer, & H. D. Fredericks (Eds.), Education oflearners with severe handicaps: Exemplaty service strategies (pp. 221-248). Baltimore: Paul H. Brookes.
Guess, D., Sailor, W., & Baer, D. M. (1976). Functional speech and language training for the severely handi- capped (Part II). Lawrence, KS: H & H Enterprises, Inc.
Guess, D., & Siegel-Causey, E. (1985). Behavioral control and education of severely handicapped students: Who's doing what to whom and why? In D. Bricker & J. Filler (Eds.), Severe mental retardation: From theory to prac- tice (pp. 241-255). Reston, VA: Council for Exceptional Children.
Gunnar-Vongnechten, M. R. (1978). Changing a fright- ening toy into a pleasant toy by allowing the infant to control its actions. Developmental Psychology, 14, 157- 162.
Harchik, A. E., Sherman, J. A., & Sheldon, J. B. (1989). Choice and control: Do they make a difference? Un- published manuscript, University of Kansas, Lawrence.
Hazel, J. S., Deshler, D., Turnbull, H. R., III, & Osborne, J. A. (1988). Research into self advocacy as a tech- niquefor transition. Lawrence, KS: University of Kansas, Institute for Research in Learning Disabilities, Depart- ment of Special Education, and University Affiliated Fa- cility.
Heilman, M. E., & Toffler, B. L. (1976). Reacting to reactance: An interpersonal interpretation of the need for freedom. Journal of Experimental Social Psychology, 12, 519-529.
Helmstetter, E., Murphy-Herd, M. C., Roberts, S., & Guess, D. (1984). Individualized curriculum sequence and extended classroom models for learners who are deaf and blind. Curriculum development project for second- ary age severely handicapped deaf-blind students. Law- rence, KS: University of Kansas. Department of Special Education.
Henning, J., & Dalrymple, N. (1986). A guide for de- veloping social and leisure programs for students with autism. In E. Schopler & G. B. Mesibov (Eds.), Social behavior in autism (pp. 321-350). New York: Plenum.
Herrnstein, R. J. (1970). On the law of effect. Journal of
the Experimental Analysis of Behavior, 13, 243-266. Houghton, J., Bronicki, G. J., & Guess, D. (1987). Op-
portunities to express preferences and make choices among students with severe disabilities in classroom settings. Journal of the Association for Persons With Severe Handicaps, 12, 18-27.
Kanfer, F. H., & Grimm, L. G. (1978). Freedom of choice and behavior change.Journal ofConsulting and Clinical Psychology, 46, 873-878.
Kishi, G., Teelucksingh, B., Zollers, N., Park-Lee, S., & Meyer, L. (1988). Daily decision-making in commu- nity residences: A social comparison of adults with and without mental retardation. American Journal on Men- tal Retardation, 92, 430-435.
Knowlton, H. E., Turnbull, A. P., Backus, L., & Turnbull, H. R., III. (1988). Letting go: Consent and the "yes, but ..." problem in transition. In B. L. Ludlow, A. P. Turnbull, & R. Luckasson (Eds.), Transition to adult life for people with mental retardation (pp. 45-66). Baltimore: Paul H. Brookes.
Koegel, R. L., Dyer, K., & Bell, L. K. (1987). The influence of child-preferred activities on autistic children's social behavior. Journal of Applied Behavior Analysis, 20, 243-252.
Kosiewicz, M. M., Hallahan, D. P., & Lloyd, J. (1981). The effects of an LD student's treatment choice on hand- writing performance. Learning Disability Quarterly, 4, 281-286.
Langer, E. J. (1975). The illusion of control. Journal of Personality and Social Psychology, 32, 311-328.
Langer, E. J. (1983). The psychology of control. Beverly Hills, CA: Sage Publications.
Lefcourt, H. M. (1973). The function of the illusions of control and freedom. American Psychologist, 28, 417- 425.
Lovitt, T. C., & Curtiss, K. A. (1969). Academic response rate as a function of teacher- and self-imposed contin- gencies. Journal ofApplied Behavior Analysis, 2, 49- 53.
Mazur, J. E. (1986). Learning and behavior. Englewood Cliffs, NJ: Prentice-Hall.
McDowell,J. J. (1988). Matching theory in natural human environments. The Behavior Analyst, 11, 95-109.
Mendonca, P. J., & Brehm, S. S. (1983). Effects of choice on behavioral treatment of overweight children. Journal of Social and Clinical Psychology, 1, 343-358.
Mithaug, D. E., & Hanawalt, D. A. (1978). The validation of procedures to assess prevocational task preferences in retarded adults. Journal ofApplied Behavior Analysis, 11, 153-162.
Morris, J., & Royle, G. T. (1988). Offering patients a choice of surgery for early breast cancer: A reduction in anxiety and depression in patients and their husbands. Social Science and Medicine, 26, 583-585.
Newhard, M. K. (1984). Effects ofstudent choice on skill acquisition with deaflblind adolescents. Unpublished master's thesis, University of Kansas, Lawrence.
Pace, G. M., Ivancic, M. T., Edwards, G. L., Iwata, B. A., & Page, T. J. (1985). Assessment of stimulus prefer-
BALANCING THE RIGHTS 89
ence and reinforcer value with profoundly retarded in- dividuals. Journal of Applied Behavior Analysis, 18, 249-255.
Parsons, M. B., Reid, D. H., Bumgarner, M., & Reynolds, J. (1988, May). Improving vocational performance of developmentally disabled clients: Effects of choice and work preference. In A. J. Cuvo (Chair), Behavior anal- yses ofcommunity referenced skills: Issues in promoting and transferring stimulus control. Symposium con- ducted at the convention of the Association for Behavior Analysis, Philadelphia.
Perlmuter, L. C., & Monty, R. A. (1973). Effect of choice of stimulus on paired-associate learning. Journal of Ex- perimental Psychology, 99, 120-123.
Perlmuter, L. C., Scharff, K., Karsh, R., & Monty, R. A. (1980). Perceived control: A generalized state of mo- tivation. Motivation and Emotion, 4, 35-45.
Perske, R. (1972). The dignity of risk. In W. Wolfens- berger (Ed.), The principle of normalization in human services (pp. 194-200). Toronto: National Institute on Mental Retardation.
Reese, R. M. (1986). Teaching individual and group problem solving to adults with mental retardation. Unpublished doctoral dissertation, University of Kansas, Lawrence.
The Rehabilitation Act of 1973, 29 U.S.C. §§ 701-794 (1976 & Supp. III 1979).
Reim, B., Glass, D. C., & Singer,J. E. (1971). Behavioral consequences of exposure to uncontrollable and unpre- dictable noise. Journal ofApplied Social Psychology, 1, 44-56.
Shevin, M., & Klein, N. (1984). The importance of choice- making skills for students with severe disabilities. Jour- nal of the Association for Persons with Severe Hand- icaps, 9, 159-166.
Shuman, S. I. (1975). Right to be unhealthy. Wayne Law Review, 22, 61-95.
Skinner, B. F. (1971). Beyondfreedom and dignity. New York: Alfred A. Knopf.
Standards for Payment for Skilled Nursing and Intermediate Care Facility Services. 53 Federal Register 20495 (June 3, 1988) as amending 42 U.S.C. §§ 442 et seq. (1978).
Stotland, E., & Blumenthal, A. L. (1964). The reduction of anxiety as a result of the expectation of making a choice. Canadian Journal ofPsychology, 18, 139-145.
Strauss, P. J. (1988). Medicare catastrophic coverage act of 1988. New York Law Journal, 200, 3-4.
Taylor, S. E., & Brown, J. D. (1988). Illusion and well- being: A social psychology perspective on mental health. Psychological Bulletin, 103, 193-210.
Thompson, C. E., & Wankel, L. M. (1980). The effects of perceived activity choice upon frequency of exercise behavior. Journal of Applied Social Psychology, 10, 436-443.
Turnbull, A. P., & Turnbull, H. R., III. (1985). Devel- oping independence.Journal ofAdolescent Health Care, 6, 108-119.
Turnbull, H. R., III, Turnbull, A. P., Bronicki, G. J., Sum- mers, J. A., & Roeder-Gordon, C. (1989). Disability and the family: A guide to decisions for adulthood. Baltimore: Paul H. Brookes.
VanBierviiet, A., & Sheldon-Wildgen,J. (1981). Liability issues in community-based programs. Baltimore: Paul H. Brookes.
Veach, D. M. (1977). Choice with responsibility. Young Children, 32, 22-25.
Voss, S. C., & Homize, M. J. (1970). Choice as a value. Psychological Reports, 26, 912-914.
Wacker, D. P., Berg, W. K., Wiggins, B., Muldoon, M., & Cavanaugh, J. (1985). Evaluation of reinforcer pref- erences for profoundly handicapped students. Journal of Applied Behavior Analysis, 18, 173-178.
Weiss,J. M. (1971). Effects ofcoping behaviors in different warning signal conditions on stress pathology in rats. Journal of Comparative and Physiological Psychology, 77, 1-13.
Wolfensberger, W. (1972). The principle of normaliza- tion in human services. Toronto: National Institute on Mental Retardation.
Wright, R. M., & Strong, S. R. (1982). Stimulating ther- apeutic change with directives. Journal of Counseling Psychology, 29, 199-202.
Wuerch, B., & Voeltz, L. (1982). Longitudinal leisure skillsfor severely handicapped learners. Baltimore: Paul H. Brookes.
Wyatt v. Stickney, 325 F. Supp. 781 (M.D. Ala.) (Wyatt I), modified, 334 F. Supp. 1341 (M.D. Ala.) (Wyatt II), modified, 334 F. Supp. 395 (Wyatt IV).
Youngberg v. Romeo, 457 U. S. 307 (1982). Zuckerman, M., Porac, J., Lathin, D., Smith, R., & Deci,
E. L. (1978). On the importance of self-determination for intrinsically-motivated behavior. Personality and So- cial Psychology Bulletin, 4, 443-446.
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