Protecting human rights has increasingly become a focus of regulation regarding individuals with Intellectual Disability (ID). While this focus on rights has succeeded in protecting people with ID from many of the most insidious abuses of the past, an over-emphasis on the human rights of people with ID while ignoring other aspects of their personalities and environments can create challenges. This article proposes the use of a dialectical model to address challenges raised by the relationship between two equally valid but often unequally considered approaches, namely, rights-based and person-centered. Suggestions are provided for using this model to meaningfully support individuals to reach their person-centered goals while continuing to recognize and address their individual rights, responsibilities, and challenges.
In philosophy, dialectics describes a method of exposition that weighs opposing facts or ideas with a view to the resolution of their real or apparent contradictions (Hegel, 1991). In psychology, the dialectal model has been used to assist individuals in finding a productive middle ground between two valid concepts which, taken in their extremes, are often counterproductive to effective functioning (e.g., self-acceptance versus change, novelty versus predictability, or caring for others versus maintaining boundaries; Linehan, 2014; Pederson & Pederson, 2012). In dialectical theory, neither side of the dialectic is “wrong”, and no conflict is as black and white as it first may seem. Rather, each side of the dialectic is viewed as containing a kernel of its opposite, meaning it is at the very moment of exclusive focus on one side of the dialectic that the need for focusing on the other side emerges as a way of balance. The aim of intervention in the dialectical approach is to find an appropriate middle ground that allows individuals to live full and productive lives (Pederson & Pederson, 2012).
In the field of intellectual disability (ID), dialectics can be observed in almost every aspect of a person's life; in education, the values of mainstreaming are often pitted against the benefits of specialized instruction. In residences, the mandate to protect is often weighed against the dignity of risk. In families, personal choice often rubs against family values or concerns, particularly as people with disabilities reach adulthood and attempt to live lives independent of their families of origin.
One dialectic that in today's climate we believe warrants a deeper analysis is that of “rights-based” versus “person-centered” approaches to service provision. The aim of this analysis (like that of all dialectical analyses) is not to argue the merits of one approach over the other; rather, it is an attempt to formulate a middle ground between these two approaches based on our belief that a current regulatory emphasis on the rights of individuals with ID often comes, however inadvertently, at the expense of supporting people to meet their person-centered objectives and live full, productive, and included lives. Furthermore, we assert that the reason for the current state of affairs is a tendency of some to over-equate the rights-based and person-centered perspectives, seeing them as identical or “two sides of the same coin” rather than as two equally important but somewhat conflicting sides of a dialectic. In other words, because current thought rightfully recognizes the validity of both rights-based and person-centered philosophies (thus making an “either-or” choice between the two approaches untenable), a tendency has developed in practice to view the two approaches as identical (i.e., being rights-based is being person-centered). It is our belief, however, that viewing the two approaches as one is not only misguided but often counterproductive to meeting the intended outcomes of either. To convey these points, we will discuss the underlying premises of rights-based and person-centered approaches. Then, we will attempt to show how a regulatory emphasis on rights-based approaches appears in practice to often be at the expense of person-centeredness. Using a dialectical model, we will then provide suggestions for how to find an appropriate middle ground between these two approaches to best meet the needs, achieve the desired outcomes, and protect the rights of individuals with ID.
The Origin and Need for Rights-Based Approaches
Borrowing a metaphor from the 19th century Unitarian minister Theodore Parker, Martin Luther King, Jr. said that, “…the arc of the moral universe is long, but it bends toward justice.” (Cohen, 1997). Indeed, the story of many minority groups in our society is one of the shift, sometimes rapid and sometimes painfully slow, from inequality towards equality, from prejudice towards tolerance, and from disenfranchisement towards inclusion. Typically, these shifts in feelings and attitudes towards previously misunderstood or negatively valued groups led to the practical extension of accepted “human rights” to those groups who had, often for centuries, been denied these rights.
The history of people with ID is, in this regard, no different than the history of other marginalized, undervalued, and disenfranchised minorities. Institutionalization, forced sterilization, and, in some cultures, extermination have all stained the collective experience of individuals with ID well into modern times. And while, philosophically, such attitudes towards those with ID remain current in some circles (see, for example, the work of some biounitarianist thinkers such as Singer, 2011), and while negative distinctions still exist in the experiences of people with ID (Marks, 2008; Johnson, 2006), the very darkest days in the history of people with ID appear to be behind us. The recognition that people with ID (as compared to “intellectually disabled people”) are “people first” is a hallmark of current thinking in the field, and affording equal rights to individuals regardless of their level of ability has been codified in both US federal law (US Department of Justice, 2009) and international treaties (United Nations CRPD, 2006). From a regulatory standpoint, this approach has been expressed through requirements as general as making sure that individuals with ID are part of the decision making process in areas that impact their lives (i.e., the general requirement of “person-centered planning”) and as specific as demands that individuals with ID living in group homes or supported apartments have their own house keys and formal tenant agreements.
The underlying premise of rights-based approaches is the idea that people with ID have the right to be treated “like everyone else”. By recognizing the equal legal status of people with disabilities and by providing individuals with disabilities with the trappings of independence regardless of their level of intellectual ability, it is assumed that a person's quality of life will be enhanced and their full potential, perhaps with some reasonable supports and accommodations, will be met (Young & Quibell, 2000).
The Origin and Need for Person-Centered Approaches
Person-centered approaches are typically defined as approaches in which the individual being serviced is at the core of the planning process (Mount & Zwernick, 1988), with plan development focusing on the strengths, dreams, and aspirations of the person. Person-centered planning uses a discovery process that, through interviews, observation, and assessment, helps identify and develop the unique talents and interests of a person that serve as a foundation for developing an internally valued vision of that person's life. A primary goal of person-centered planning is to give people with ID greater control and choice in their lives and help them develop the skills and be placed within the circumstances they need to realize their vision and dreams (OPWDD, 2011). In contrast to rights-based perspectives, which primarily emphasize the “equality” amongst individuals, person-centered planning focuses to a large degree on the differences amongst people, as all people are unique and have their own specific goals and dreams. Not every resident of a group home wants to go on the same Sunday trip; not every person who wants “a job” would feel fulfilled by “any job.”
Beginning in the latter part of the 20th century, the use of person-centered planning has done much to improve the outcomes of people with ID. The focus on valued outcomes evolving from the individual's point of view has helped lead the field away from a sole focus on diagnosis and classification as well as from an institutional and often standardized agency-driven system (Shogren et al., 2009). Person-centered perspectives have also helped crystallize the subjective nature of many disabilities by distinguishing mere diagnoses and labels from what actually makes a person a unique individual, i.e., his or her internal strengths, capabilities, and aspirations (Weick, Rapp, Sullivan, & Kisthardt, 1989) as well as by recognizing the environmental roots (mismatches between the skills of an individual and the environmental expectations placed upon the individual) of many allegedly disabling conditions (Bogdan & Taylor, 1976; Johnson, 2006).
The Relationship Between Rights-Based and Person-Centered Approaches
There are those that argue that there is no meaningful difference between rights-based and person-centered perspectives at all and that the two approaches are in fact the same: People with disabilities of course want equal rights (thus, affording equal rights is being person-centered) and people have the right to be involved in developing their own life plans and choosing their own valued outcomes (thus, person-centered planning is an individual's right).
In practice, however, equating the two approaches can lead to unnecessary challenges. While the need for the provision of equal rights to those with disabilities and the value of a leadership role in the shaping of a life plan by the individual for whom the plan is being developed seem obvious, when taken to their extremes these two approaches can often be in conflict; stated differently, when viewing the relationship between the two approaches as one of equivalence rather than dialectical, the two approaches may, in fact, be seen to pose a threat both to themselves and to each other.
Regarding rights-based approaches, when it comes to basic protections (access to healthcare, freedom from abuse, etc.) the human rights of people with ID must remain the foundation of our attitude towards individuals regardless of their level of ability. Once we move beyond the minimal services and legal protections that rights-based approaches are meant to protect in the name of “equality,” however, the value of such approaches to address the positive needs of people with ID becomes somewhat less clear. As the emphasis on human rights in policies regarding the support of people with ID becomes more generalized, methods of supporting people with ID fall more and more into the domain of lawyers, politicians, and regulators and farther from the guidance of developmentalists, clinicians, family members, and others who may have a greater, more nuanced, and more personal understanding of the specific individuals being served. In other words, viewing “everyone as equal” runs the risk of viewing “everyone as the same,” and viewing “everyone as the same” is, by definition, not person-centered.
Similarly, many professionals engaged in supporting those with ID have confronted the experience of a service participant's subjective preferences running into conflict with other deeply held values of our profession such as independence (“I don't want to dress myself; I want the staff to dress me”), productivity (“I don't want to go to work; I want to stay home”), and safety (“I don't want to take my heart medicine anymore. I don't like it”). When these conflicts arise, discussions regarding whether an individuals' subjective preferences are indeed “person-centered” in the fullest sense of the term often end with a restriction of rights in the name of person-centeredness (for example, restricting an individual's “right to self-medicate” on the assumption that staying alive is a subjective Valued Outcome). Furthermore, these restrictions are often defended by falling back on the very labeling and diagnostic tendencies from which person-centered planning was supposed to protect us (for example, diagnosing someone as “too low functioning” to responsibly be given the right to self-medicate).
To address these challenges, rather than viewing rights-based and person-centered approaches as either two sides of the same coin or coexisting systems in which emphasis on one leads to a diminishing of the other, we believe that viewing rights-based and person-centered approaches as two equally valid sides of a dialectical continuum regarding choice making opportunities can lead to a synthesis of the two approaches through which many of the challenges posed by the embracing of both systems can be addressed and the desired outcomes of each system can be met.
The Rights-Based/Person-Centered Dialectic
The values of a rights-based approach and those of a person-centered perspective could theoretically be viewed as falling on two completely different dialectical spectrums, namely rights versus protection and person-centered versus agency, family, or society centered. It is our belief, however, that these two systems can more adequately be understood as extremes on the same spectrum, namely, that of how one views the choice making opportunities of those with (and without) ID. This description does not reflect a singularity of rights-based and person-centered approaches, but rather a synthesis of the two approaches. In other words, because, in reality, the two approaches are not identical, in some contexts an over-emphasis on rights may not actually be person-centered. Similarly, an over-emphasis on person-centeredness (e.g., allowing a person to “choose to behave inappropriately”) may lead to exclusion by the community and decrease opportunities for equal treatment. From a dialectical perspective, the solution to this conundrum is to recognize that because rights-based approaches and person-centered approaches are two extremes on the same continuum, and because the middle ground of that continuum is, by definition, closer to the truth of life than either extreme, one need not be concerned that a shift to the middle is a reneging on the guarantees of either civil rights or person-centeredness; rather, a shift to the middle is a recognition that not every circumstance we find ourselves in allows for complete freedom of choice, and that it is not always appropriate to act solely on our subjective opinions or preferences. From this perspective, supporting people to, for example, live up to past commitments or refrain from acting on momentary impulses is neither a restriction of rights nor a turn away from person-centeredness; rather, it is an example of normalization on the grounds that behaving responsibly and interdependently despite momentary misgivings is what people living successfully in a society of equals do.
The challenge with incorporating this mindset into practice is that the current field of ID, particularly from a regulatory standpoint, has in our opinion fallen into the trap of seeing the relationship of rights and person-centeredness not as a dialectic in need of synthesis but as a conflict-free case of semantics. In other words, we believe that an overemphasis on the rights extreme of the dialectic in current regulation in the name of “person-centeredness” often stands in the way of people truly realizing their person-centered objectives. It is this contention that we now set out to prove.
The Over-Emphasis on Rights in Current Disability Regulation
Human rights lawyer and disability advocate Melinda Jones (2007) has stated that, “One of the biggest problems facing people with disabilities is the conceptualization of disability being a matter of welfare, not of rights.” This quote exemplifies what we contend to be a misguided emphasis on the rights-based extreme of the dialectic we are discussing by asserting that an individual's welfare needs (which, we assume, most rights-based advocates would agree those with ID have) can be addressed solely by assuring the individual's legal and equal rights (i.e., the view that assuring a person's rights is being person-centered). One way to frame this issue is to ask, “To which rights are rights-based advocates referring?”
The simple answer is, “The same rights that neurotypical individuals have.” The challenge with this response can be crystallized by asking the following question: Is it true that neurotypical individuals have the same rights that extreme rights-based advocates claim they do?
Let's take, for example, the right to quit one's job. Most would argue that people in a free society do, indeed, have the right to quit their jobs. At the same time, recent statistics indicate that less than half of Americans report being satisfied at their jobs (Cheng, Kan, Levanon, & Ray, 2015). This begs the question of why the majority of American workers do not quit jobs with which they are dissatisfied. The reason appears to be that, despite a general dissatisfaction with their current employment and a frustration with their current status at any given moment, keeping one's job affords a person the opportunity to achieve other valued outcomes such as independence, productivity, socialization, and the acquisition of desired material goods. Furthermore, arriving to work on time, recognizing the hierarchical nature of the employer/employee relationship, and speaking, dressing, and acting in a manner defined as “professional” are all conventions that are physically within our power to transgress but which typically developing people generally refrain from transgressing because of the consequences of doing so (e.g., losing one's job, being rejected by others, etc.). That being said, does the typical worker without ID truly believe that she has the “freedom” to quit her job when dissatisfied or arrive at work whenever she pleases, as long as she is willing to live with the consequences of being docked pay or getting fired? Or, alternatively, do most neurotypical employees view trying to focus on the positive aspects of one's job and following workplace protocol even if they would prefer not to as requirements for them to meet their responsibilities, achieve their aspirations, live comfortably, and reach their potential, thereby seeing the “choice” to arrive to work randomly or quit reflexively as illegitimate choices or non-available options? Linked to that, although neurotypical people can theoretically choose when to wake up in the morning, is it not understood that the time at which we set our alarms is determined by when we need to arrive at work, drive the kids to school, or make it to that first appointment? And is the time one goes to sleep at night not generally determined by the time one has to wake up the next day?
It appears that, despite our theoretical ability to freely choose to engage in certain behaviors that are detrimental to our functioning and success in society, the need to engage in those behaviors in order to function and succeed (i.e., achieve our valued outcomes) in practice limits our options and determines our choices. It is therefore interesting (and, in our opinion, misguided) to see the number of times that phrases akin to, “just like people without disabilities” are used in many regulatory guidance documents. For example, the Guidance and Instructions for OPWDD's HCBS Settings Assessment, published by the New York State Office for People with Developmental Disabilities (OPWDD, 2014), states that, “Providers/staff are expected to encourage and support individuals to freely choose and control their own schedules and activities (e.g., when to eat, when to sleep, what to watch on TV, preferred community integration activities, etc.) in the same manner as people without disabilities” (OPWDD, 2014, p. 49). Other examples in this document include access to the community, “…in the frequency and manner that he/she wants, just like any other adult” (OPWDD, 2014, p. 28) and the right to make spontaneous choices. Regarding the right to spontaneous decision making, the document states that, “This is no different than non-disabled people who live with others and enjoy the freedom to pursue an interest on the spur of the moment, as well as live with the possible disappointment when lack of planning sometimes impacts being able to make necessary arrangements to participate or not participate” (OPWDD, 2014, p. 30). The example of potential “disappointment” given in the document is a service participant who spontaneously decides to visit a craft fair, only to find that the fair is only open for another two hours and sufficient time to either get to the fair or enjoy the fair is not available. However, this and similar examples given (lack of funds, lack of transportation, lack of accompanying friends or support staff) only account for scenarios in which spontaneous activities are unable to be attended because attendance would have needed prior planning. Each of these regulations is based on federal CMS regulations (see, for example, Medicaid Program; State Plan Home and Community-Based Services, 2014).
What is not discussed, however, are scenarios which are ill advised for the individual yet accessible, upon which decisions are made not based on “spontaneous” whims but on impulsive or superficial thinking, and the “disappointments” evolving from the decisions are not missing a craft fair but losing one's job, home, or independence. For example, if a person with ID wakes up and decides to go for ice cream at 2 A.M., should the staff “make every attempt… to honor the person's choice for unscheduled activities? (OPWDD, 2014, p. 30) All things being equal, the answer would appear to be yes, as having ice cream, like choosing what to watch on T.V, is a personal choice (particularly if there is a 24-hour ice cream parlor in the vicinity). But what if going to get ice cream at 2:00 AM would mean that, for this person, he would not be able to get up in the morning and therefore risk losing his job? Using the, “in the same manner as people without disabilities” approach, it would seem that the choice to get ice cream at 2:00 AM is not typically viewed as a legitimate choice people are free to make. Neurotypical people rarely say, “I'm choosing to go to sleep now because I choose to not be late to work tomorrow;” rather, they say, “I have to go to sleep now because I can't be late to work tomorrow.” Neurotypical individuals speak this way because most people learn from an early age that there is a distinction between personal decisions and the mandate to follow certain social conventions (Turiel, 1984). If true, then allowing a person with ID to view social conventions (such as arriving to work on time) as personal decisions (akin to what to watch on TV) is not an example of giving people equal rights but rather of giving people with disabilities freedoms that neurotypical individuals successfully living within the confines of society do not believe themselves to have.
The Consequence of Favoring the Rights-Based Extreme
Continuing the example stated above regarding the right to quit one's job, the bias in current regulation towards the rights-based extreme of the dialectic being discussed was recently stated explicitly to the first author of this report when a policy maker, in response to a question regarding the impact of rights-based approaches in regulation, responded by saying, “You must stop looking at ID as a deficit” (OPWDD, personal communication). The context of this response was not an abstract discussion, but based on an actual event: A service participant at an adult program for people with ID who, after much effort, secured a job in competitive employment, decided to quit because he believed the hardware store in which he was employed should serve lunch to their staff (as had his previous job in a school; he quit his previous job because he did not like, “the teachers telling me what to do.” He had left his prior job at a supermarket because he did not fancy the way a fellow employee looked at him). When the notion of writing a behavior plan that included as one component an insistence that this individual return to his job on the grounds that his stated reason for quitting was not valid and that workplace responsibilities needed to be lived up to and workplace conventions accepted (including the notion that the boss does, in fact, have the right to tell you what to do), those adherents to a rights-based approach to intervention with people with ID took offense, stating that, similar to those without disabilities, this person has the right to quit his job if he is not happy for whatever reason as long as he is willing to live with the consequences of unemployment. One proponent of this approach asserted that the service participant has the right to quit his job, “Even if it becomes a lifelong struggle” for him to remain gainfully employed and achieve his desired outcome as a full and productive member of the community (personal communication).
When viewed solely from a rights-based perspective (he has the right to quit his job for any reason) the conclusion of allowing this person to repeatedly quit his job on the bases specified above makes sense. Similarly, when viewing the situation solely from a person-centered perspective, one might come to the same conclusion (if it is what he wants, then he should do it). However, when viewed from the dialectical perspective, one can ask a) do neurotypical people believe these are valid bases upon which to make such a decision, and b) is anything that leads to a “lifelong struggle” truly the Valued Outcome of the individual and, thus, truly the person-centered alternative?
While we embrace the values of self-determination and acknowledge both the dignity of risk and the right of individuals with ID to make their own choices even if others may view those choices as misguided or likely to lead to disappointment or failure, it is our contention that sometimes actions that are viewed as “decisions” are not true decisions at all, or, at the very least, that sometimes decision making opportunities afforded to individuals with ID do not pass the normalization test as decisions that neurotypical individuals living in society see themselves as having. In some cases, this is because circumstances in which people find themselves (such as that of employee requiring a paycheck to acquire other valued outcomes) predetermine some decisions and lead some potential choices to be viewed as invalid by those wishing to succeed and be included in society. Other times, it is because some “decisions” made by those receiving support are actually instances of acting on impulse, not grounded in an informed decision-making process and often rooted in the very challenges that led to a diagnosis of ID in the first place.
To be clear, this is not to say that there are not individuals diagnosed with ID who can, indeed, engage in truly informed choice making and abstract thinking; this fact has been shown clearly in the literature (Erez, 2001). It is also true that neurotypical individuals do not always engage in abstract or logical thinking and decision making (see, for the example, the work of Labouvie-Vief, 2009; Schaie & Zanjani, 2006; and Wehmeyer & Shogren, 2014). The point being made here does also not preclude the idea that choice making skills can be taught to and learned by some people over time. The literature is also replete, however, with examples of individuals with ID engaging in superficial decision making that, when not addressed, can lead to negative outcomes (see, for example, Willner et al, 2010, who found the overwhelming use of unidimensional thinking in people with ID during a computer-based choice making task; similar findings have been observed in the areas of Kohlbergian cognitive-moral reasoning by Taylor & Achenbach, 1975; general decision making by Zetlin, 1981; legal matters by Appelbaum & Appelbaum, 1994; safety concerns by Ottman, McVilly, & Maragoudaki, 2016; and relationship issues by Bates, Terry, & Popple, 2016). Indeed, the DSM-5 lists deficits in planning, abstract thinking, judgment, and learning from experience as potential qualifiers for a diagnosis of ID (APA, 2013). From the vantage point of dialectical theory, it is specifically at these times when a greater synthesis of the two sides of the rights-based/person-centered dialectic needs to be developed, often with the assistance (and, we would contend, sometimes with the insistence) of service providers to support service participants to see the “big picture” regarding how acting impulsively, even if one technically has the “right” to do so, might negatively impact the overall achievement of his or her own person-centered objectives.
Put simply, it is our contention that overemphasizing one's “right” to make a decision while not giving equal consideration (based either on accepted social conventions or the superficiality of the individual's decision making process) to how typically viewed the validity of the bases upon which the decision being made are, does not meet the standard for normalization even as defined by the rights-based perspective (i.e., “being treated like everyone else”). Put another way, the phrase, “Even if it becomes a lifelong struggle” can be rephrased as, “even if it means he remains dependent on others his entire life.” It is our belief that this conclusion meets neither the standards of a person-centered approach nor does it support the need or desire for inclusion and normalization that proponents of a rights-based perspective, as well as most individuals with ID, purport to advance.
Having said that, our approach should not be taken to imply that restricting a person's rights or insisting that individuals engage in behaviors that may not be of their immediate choosing are actions that should be taken lightly on the grounds that, “we know what's best”. Rather, using a dialectial perspective, our approach aims to point out that sometimes moving away from both rights-based and person-centered extremes should be viewed as a process leading closer to the truth of normalization. Sometimes, choices are dictated by society, and sometimes we do things we would prefer not to do in the immediate in order to achieve our longer-term valued outcomes. Sometimes, it is the very restriction of our individual rights and our engaging in necessary (but not necessarily immediately preferred) tasks that brings us greater freedom overall, allows us to reach our true person-centered goals, and enhances our quality of life.
Rights-based approaches have become a primary focus of recent regulation regarding individuals with ID. Extreme proponents of rights-based approaches would argue that such approaches are, by definition, person-centered. It is our contention, however, that rights-based and person-centered approaches are neither identical nor in true conflict with each other; rather, they are two extremes on one of the many dialectics encountered when working with people (or living one's life) with ID. While a focus on rights has done much to protect people with ID from many of the most insidious abuses of the past, an over-emphasis on the “rights” side of the dialectic while deemphasizing the personal and societal context of an individual's choice making opportunities often leads to a dismissing of the other side of the dialectic, namely, supporting the achievement of one's person-centered valued outcomes.
As noted, the objective of any dialectical discussion is to move away from either extreme of the dialect towards a middle ground, synthesizing the competing concepts and thereby reaching a greater truth. In this context, we suggest three shifts in our collective mindset aimed at pushing the field in this direction:
Our field should have a thoughtful and sober discussion regarding the distinction between social conventions (behaviors agreed upon as mandatory by society even while not being generalizable across societies) and personal decisions (areas of behavior truly viewed as falling within one's personal domain of decision making; Turiel, 1984). Just because a person has the physical ability to skip school, arrive late to work, or ride the subway naked does not mean that one has the right to do so in a given society even if they are “willing to live with the consequences.” The “right to maladaptivity” that is often given to people with ID in the name of both rights-based and person-centered perspectives should be seriously questioned, both with regard to whether or not allowing this “right” is helping or hurting people reach their person-centered goals, as well as from the standpoint of whether or not everyone in a given society truly has this “right.” In the same way that it is viewed by most as acceptable for a doctor to insist that a service participant be given her heart medication or that a behavior plan be written to restrict an individual from engaging in self-injurious behaviors, so too infractions of social convention that have a high likelihood of social harm (based on the mandates of society) and a low likelihood of “learning through consequences” (based on the cognitive skills of the individual) should, in some cases, not be viewed as personal decisions. Sometimes, the “right to fail” only leads to failure, and supporting failure purely in the name of exercising that right is not always person-centered, does not always reflect “normalization” in its truest sense, and is not always in the best interest or true desire of the individual. As others have noted (see, for example, Wehmeyer & Shogren, 2016), currently accepted values such as individual choice and self-determination must be viewed within the context of individuals' relationships with others and with society as a whole if they are to meaningfully bring about a more inclusive and accepted life experience for people with ID.
Similarly, the distinctions between and implications of impulsive behavior, superficial thinking, and truly informed decision making needs to be evaluated and accepted, and a supported decision making process should take seriously the objective cognitive limitations of the individuals being supported as well as the relational and cultural contexts in which these decisions are being made. The stage of one's cognitive development does not mean a person should not be supported to make her own decisions, but it does mean something. While we recognize the cultural foundation of many disabilities as well as recent advances in teaching informed choice making as a skill (see, for example, Dukes & McGuire, 2009; and Wehmeyer & Bolding, 2001), it must also be recognized that sometimes disability still matters. The purpose of speaking person-first is to make sure that we do not define a person solely by his or her disability. It is not, however, meant to have us ignore the disability altogether; he or she is still a “person with a disability,” and that disability often has an objective impact on a person's skills and life. It is imperative, therefore, that thoughtful consideration be given to whether a person's thought process or actions are based on a deliberative decision making process or whether they are based on the person's atypical cognitive skills or impulsivity. There is a meaningful difference between impulsive decision making and spontaneity, and while acting spontaneously may be a right of people with ID that is worthy of protection, acting impulsively may be a symptom worthy of intervention.
That being said, it is dangerously easy to cross the line between determining clinically that, “the actions an individual is taking are based on an impulsive or a superficial thought process secondary to his or her objective cognitive limitations rather than a reasoned decision making process and acting on that superficiality or impulsivity will bring the individual further from achieving his or her long term person-centered objectives” and determining dismissively that, “I know what's best for you.” Therefore, it is imperative that decisions aimed at a synthesis of the rights-based/person-centered dialectic be based on objective clinical evaluation of an individual's decision making behaviors. There is a difference between saying, “My boss is mean because he makes fun of me” and saying, “My boss is mean because he tells me what to do.” Freedom from verbal abuse is clearly an issue of rights, and quitting one's job to escape such an environment can easily be seen as an exercising of those rights. At the same time, understanding that an employer does, indeed, have the capacity to insist that an employee engage in work-related tasks (“tell me what to do”) can just as easily be viewed as a skills issue that, if not currently present in an individual, should arguably be taught. Allowing someone to quit because he misunderstands his position as an employee is not an exercising of his rights, but a dereliction of the habilitative responsibility of a service provider. Thus, writing a behavior plan that precludes permitting a person to quit one's job based on superficial thinking, impulsive behavior, or a misunderstanding of one's role in society should not be viewed as a restriction of one's rights, but rather as an intervention to support one's achieving his person-centered objectives. Support professionals should recognize that the impact of a person's cognitive skills, sensory processing challenges, or behavioral atypicalities (as well as the often more easily addressed consequences of one's past restricted opportunities) often requires direct teaching of socially mandated behaviors as opposed to simply supporting the “right” of individuals to engage in maladaptive behavior or assuming that all individuals with ID have the skills to abstract and apply information in order to learn from consequences. To address this very delicate balance (and, in our view, different from the current regulatory structure), it should be left in the hands of clinicians (or clinically-minded supports) to walk this fine line of the dialectic and not simply regulators or legislators with an often less nuanced understanding of intellectual and developmental disability.
Viewing the relationship between rights-based and person-centered approaches from a dialectical perspective should allow all involved in supporting those with ID, as well as those with ID themselves, to more adequately recognize both the limits and freedoms that derive from true decision making opportunities. Supporting individuals with ID to find a middle ground closer to the truth of normal decision making will, we believe, not only lead to greater levels of independence and a more adequate fulfillment of their person-centered goals, but will better protect their overall human rights as people with ID become more accepted, included, and successful members of the community. It is only through acceptance and recognition of one's limits (not limitations), both personal and societal, that one's challenges can be recognized and overcome and alternative means of reaching one's goals can be developed. Ignoring those limits in the name of human rights even if doing so leads to “lifelong struggles” is not being person-centered.
Future research in this area should address the suggestions above by continuing the study of how distinctions between superficial and abstract thought as well as between personal decisions and social conventions are viewed by those with and without ID. To this end, synthesizing the ideas presented here with relevant research findings from within the field of ID such as Shogren and her colleague's work towards reconceptualizing a functional model of self-determination (Shogren et al., 2015), as well as from research outside the specific field of ID such as Turiel's (1984) and Smetana's (2006) research investigating differing domains of social cognition, may be a worthwhile place to begin.