Engaging parents of students with disabilities: Moving beyond the grief model

Introduction

In a recent issue of Improving Schools, Haley, Hammond, Ingalls, and Marvin (2013) asserted that parents of students who had recently been diagnosed with disability and were entering into a special education program experienced a variety of responses that the authors associated with grief and the traditional stages of grief as outlined in the Model of Parental Response to Disability proposed by Kübler-Ross (1969). This article responds to the deficit model of disability by (a) addressing the viability and utility of the stage model of grief as it pertains to 21st century parents of children with disabilities and (b) presenting an emergent, empowering model of parental response to disability.

History of the stages of grief model

The grief model of parental response to disability in education is based on the ‘medical model’ roots of special education, a perspective common in special education from the 1920s through the 1980s. Inherent in this was a perception of disability as ‘deficit’ (Ferguson, 2002), with suggestions of inherent family dysfunction as a result. For example, Roll-Pettersson (2001), and others, have noted that much of the professional special education literature over the past 100 years has portrayed parents as ‘neurotic, dysfunctional, suffering, or powerless’.

Traditionally, such a perspective was incorporated into the professional development of teachers. Allred and Hancock (2012) examined 60 years of special education professional literature with emphasis on textbooks commonly used in introductory special education courses to examine the evolution of professional educators’ perceptions of parental response to disability. They concluded that between 1970 and 2010 there was little change in how educators were taught to understand the parents of students with disabilities. After examining 50 years of introductory special education textbook portraits of parents, Ferguson, Ferguson, Kim and Li (2013) asserted that a common theme was psychoanalytic ‘mother blaming’, one of an array of perceptions tracing back to the deficit model.

From the late 1940s through to the late 1960s, school professionals were heavily influenced by the psychodynamic (Freudian) tradition in their conceptualization of parental response to disability. Rooted primarily in the medical model, the professional education literature frequently referred to such issues as the parents’ ‘psychic pain’ (Boyd, 1951), ‘mourning’(Solnit & Stark, 1961), and ‘chronic sorrow’ (Olshansky, 1962). During this period, the birth of a child with disability was considered a tragedy, given that the child was ‘defective’ (Wehmeyer, 2013).

The psychodynamic approach to conceptualizing the impact of tragedy in one’s life arguably reached its zenith with the work of Elizabeth Kübler-Ross (1969) in her book On Death and Dying. Her stage model of grief, proposed to better understand responses to death (and similar life-altering events), became near-universally accepted and largely unchallenged for decades as a way to understand parental reaction to the birth of a baby (or the subsequent diagnosis of a child) with disability (Allred & Hancock, 2012).

Questioning the stages of grief model for parents of children with disabilities

But is the Kübler-Ross model the most appropriate and efficacious model for considering parental reaction to disability? Kübler-Ross posited that in response to death, or in response to learning of a child’s disability, one ideally will move through five stages: denial, anger, bargaining, depression, and acceptance. After reviewing the stages of grief model relative to parental reaction to disability diagnosis in a child, Blacher (1984) found little empirical support for the model. She noted that the empirical research on the stage model of grief in parental response to disability was both very limited and methodologically weak or flawed, causing any findings based on this model to be suspect.

While Blacher’s (1984) analysis did not have significant immediate impact upon professional perceptions, since then a growing number of researchers have proposed alternate ways to consider parental/family response to disability (e.g. Allred & Hancock, 2012; Ferguson, 2002; Turnbull et al., 1993). In a study of families of children with significant disabilities, Roll-Pettersson (2001) concluded that the grief model was inadequate to accurately describe parental response to disability. Similarly, Bonanno (2009) called into question the relevance of the Kübler-Ross model while asserting that the research literature instead supported a more positive view of grief.

Factors influencing the discarding of the stages of grief model

Three developments in recent years have served individually and collectively to challenge the appropriateness of the traditional Kübler-Ross stages of grief model relative to families of children with disabilities. The first of these, the disability civil rights movement (Powers, 1995), influenced societal perceptions of disability in part by helping to redefine disability. Rather than disability being perceived as evidence of ‘degeneracy’ within the individual and family, disability is seen as simply one dimension of the human condition. Parents of children with disability have been an integral part of the disability civil rights movement, arguing persuasively that the Kübler-Ross stages of grief model devalued them by suggesting that they are victims of a ‘tragedy’ (Snow, 2001).

A second movement has been a reconceptualization of disability in which disability is interpreted not simply as an attribute inherent to the individual. Instead, disability is seen as a systems issue characterized by a mismatch between a person’s resources and the behavioral demands of the environment (Buntinx, 2013; Wehmeyer, 2013). From this perspective, disability is a natural part of the human condition, rather than deviance or abnormality that must be corrected. The ‘social’ model of disability emerged in part from this movement.

A third development has been the emergence of positive psychology (PP) (Naidoo, 2006; Seligman & Csikszentmihalyi, 2000). PP is the empirical study of strengths and attributes that permit people to thrive. Focusing on healthy and optimal functioning, PP is as concerned with strengths as with weaknesses. In the case of parents of students with disability, from a PP perspective these parents would be presumed to (a) have an innate capacity, or the intrapersonal resources, to overcome a significant crisis (e.g. birth or diagnosis of child with disability) and (b) over time typically experience increased understanding regarding their role(s), an outcome that then results in further personal growth (Allred & Hancock, 2012).

The negative impact of Kübler-Ross’ grief model: the disempowerment of parents

For well over 40 years, the expectation among policy makers and school administrators in the United States and most Western nations has been that parents and professionals should work collaboratively so that students with disabilities obtain maximum benefit from their education (Knight, 2010). However, as Haley et al. (2013) documented, too often parents have not had positive experiences while working with school professionals to develop and implement programs for their children (Fish, 2006; Hammond, Ingalls, & Trussell, 2008). Some researchers have reported that the underlying message that parents perceived from educators was that parental input was unwelcome if not actively discouraged (Turnbull & Turnbull, 1997). Turnbull, Turnbull, Erwin, and Soodak (2006) asserted that many parents of students with disabilities felt disempowered while working with educators. When parents perceive that their contributions are not valued, they develop an understandable sense of disenfranchisement (Haley et al., 2013).

It is posited that the traditional stage of grief model held by many educators has directly contributed to dysfunctional teacher–parent relationships. This may be best understood through a combination of attribution theory (Weiner, 1986) and confirmation bias (Nickerson, 1998). According to attribution theory, people seek to explain and interpret other people’s behavior based upon either internal attribution (i.e. attitude, character, personality) or external attribution (i.e. environmental factors). In attribution theory, a defining attribute is some feature that is noticeable or influential enough that it comes to represent that person. For example, an individual might assume that a redheaded person is likely to have a strong temper. One of the dangers of assigning a defining attribute to another is that based on the specific attribute, stereotyping may occur. Confirmation bias is the almost automatic tendency to see what one anticipates finding or is looking for (Nickerson, 1998).

As an example of how teachers may be ‘primed’ to perceive parents through the grief lens, consider this passage from a fairly recent introductory early childhood textbook:

[F]amilies will cope with death (and, by extension, the disability of a family member) first by denying reality. Any educator who has worked with parents of newly diagnosed children knows that denial is a powerful impulse in parents. (Bowe, 2007, p. 11)

That passage exemplifies how teachers are taught to use the ‘stages of grieving’ model as a lens through which to view the parents of students with disabilities (Allred & Hancock, 2012).

When a particular lens becomes widely accepted, people tacitly accept an accompanying set of assumptions. Unfortunately, there are two assumptions associated with the grief model that may contribute to educator–parent tensions. The first assumption is that that the birth and/or diagnosis of a child with disability is a ‘tragedy’. The second is that the inevitable parent response is grief.

These implicit assumptions often have significant consequences in school–family relations. When an individual is perceived to be the victim of a tragedy, others understandably feel pity. However, when an educator feels pity for a parent because of the ‘tragedy’ of the birth of a child with a disability (whether consciously recognized by the educator or not), this perception is likely to undermine the quality (and equality) of subsequent interactions with that parent. More specifically, when educators anticipate and/or expect that disability is tragedy, educators are more apt to perceive the parent as needy, vulnerable, and more in need of support, rather than as an equal partner in a truly collaborative educational relationship. Ferguson and Ferguson (2006) have referred to this dynamic as professionals ‘pathologizing’ the parent.

Without realizing it, under such circumstances educators may act in condescending ways toward parents (Hammond et al., 2008; Turnbull et al., 2006). When educators have low expectations of parents, those diminished expectations are likely to be manifested verbally and/or behaviorally (Turnbull & Turnbull, 1978).

During my 38 years as an educator (as well as parenting two children with disabilities), there have been numerous occasions when I have heard a school colleague state that a parent was in ‘denial’ (usually when the parent did not agree with the educator/team regarding a program issue). On many occasions, sincere educators have firmly informed me as a parent that I was in ‘denial’ regarding my child with disability (typically as a response to my taking issue with an educator’s position regarding my child’s proposed program).

When disagreements arise with parents regarding the best course of action to pursue with a student who has a disability, educators have a convenient tool at their disposal. Once an educator concludes that a parent is in ‘denial’, then the educator has a seemingly legitimate and professionally defensible rationale and justification for marginalizing the parent’s position and/or perspective.

For example, a parent may advocate for a particular annual goal or set of services. If one or more educators decide that the goal is unrealistic or unattainable, the parent’s insistence on including such a goal might serve as evidence to the teachers that the parent is ‘in denial’. Subsequent parental frustration and/or anger at the educator’s presumption of having more understanding of the child than the parent could be easily perceived by the educators to be additional evidence of the parental ‘grief’. The more a parent pushes to be heard and/or to be treated with respect, the more ‘evidence’ the educator(s) might collect in concluding that the parent is in some stage of the grief cycle.

Such a feedback loop results in what Nickerson (1998) has termed ‘spontaneous case building’ (a specific type of confirmation bias). It is hard to escape the pervasive sense of negativity that emerges when the primary perceptual lens that educators use when interacting with parents is that the parent is stereotypically in ‘denial’.

An emergent model of parental response to disability

The contemporary professional literature on parental response to disability arising from research in England, Australia, the United States, and elsewhere is clarifying a more productive model of conceptualizing the process of parental response to disability (e.g. Allred & Hancock, 2012). Two especially promising conceptual frameworks are (a) a strength-based approach to working with parents (Buntinx, 2013; Walsh, 2003) and (b) the PP orientation.

The strength-based approach identifies intrinsic resources that support parents as they respond to the presence of disability in a child. Once identified, these resources contribute to positive, long-term outcomes for both parent and child. From the perspective of PP, these resources have been referred to as general resistance resources (Anotovsky, 1993) and adaptive mental mechanisms (Valliant, 2000).

To illustrate, Taylor (1983), Taylor and Brown (1988), and Taylor, Kemeny, Reed, Bower, and Gruenewald (2000) have extensively studied individuals who developed positive illusions to cope more effectively with personal crises. Positive illusions are personal perceptions of physical and/or psychological status in a crisis experience that might be considered unrealistic (or even indicative of ‘denial’) by others. Counter-intuitively, though, there is increasing evidence that the presence of positive illusions is a strong predictor of positive long-term outcomes.

In a recent study involving fathers of students with autism (Donaldson, Elder, Self, & Christie, 2011), one of the fathers expressed his expectations for his son by declaring

I think he can just go sky’s the limit because of, he works so hard. He doesn’t have to be limited; he doesn’t have to be stopped. But we have to believe that, you know, and instill that in him . . . keep that optimism . . . (p. 204)

From a grief model perspective, such a parent would be perceived as being in denial regarding his son’s disability, rather than perceived as a parent who had adapted a positive illusion or simply hoped for the best.

Three decades ago, Affleck, Allen, McGrade, and McQueeney (1982) and Affleck and Tennen (1993) found that mothers of high-risk infants who used ‘cognitive adaptations’ (conceptually similar to positive illusions) were more likely to cope effectively. Turnbull (Summers, Behr, & Turnbull, 1989; Turnbull et al., 1993) examined the link between positive adaptation (one of several different types of cognitive adaptations) and coping in families, concluding that the use of such strategies facilitated success. Similarly, researchers such as Abbott and Meredith (1986) and Stainton and Besser (1998) reported various positive outcomes for parents (e.g. a new path to learning through experience and challenge) that unexpectedly emerged as a result of having a child with a disability.

A powerful concept in PP is stress-induced growth (Pearsall, 2003). Scorgie and Sobsey (2000) spoke of ‘transformational outcomes’ or significant positive changes that parents experience and attribute to life with a child with a disability. These positive changes include (a) personal growth, (b) improved relations with others, and (c) enhanced philosophical or spiritual values. Ulrich and Bauer (2003) described parents as developing progressively deeper levels of understanding regarding disability and their child because of these experiences.

It is not uncommon for parents of a child with a disability to undergo processes of image-making, meaning-making, and choice-making as they seek answers to questions such as ‘Who am I as a parent?’ ‘Why did this happen?’ and ‘What will I do?’ (Scorgie, Wilgosh, & Sobsey, 2004). While these questions are unsettling, they need not represent ‘psychic pain’ or Kübler-Ross’ (1969) ‘anger’ stage. As Scorgie et al. (2004) noted, positive transformations ‘ . . . seem to occur in the midst of stress, pain, and difficulty’ (p. 105). The fact that they occur during such circumstances does not make the transformations themselves painful.

Scorgie and Sobsey (2000) concluded that the traditional one-sided perspective on the negative aspects of parenting a child with disability often blinded school professionals to the potential growth, for parents, contained within these transformational experiences. They asserted that educators may implicitly or explicitly convey to parents ‘catastrophizing professional myths’ (e.g. chronic sorrow or the stages of grief model), with such communications resulting in self-fulfilling negative prophecies.

Unfortunately, the too-common experience of school professionals failing to acknowledge legitimate parental wishes while asserting that the parents are in ‘denial’ about the child’s condition may have additional deleterious effects. For example, Scorgie et al. (2004) found that the ‘denial of choice and control’ hampers opportunities for parent and child growth. These researchers specifically linked these issues to school professionals who fail to acknowledge and incorporate parental wishes for their child’s educational program.

An Australian study examining parent–professional dynamics provided further insight into how perceptual differences can affect parent–educator relationships. Kearney and Griffin (2001) examined the experiences of parents of children with significant developmental disabilities from a phenomenological perspective. In the study, parents reported that their continuing hope and optimism were perceived as ‘defiant’, as they were aware that such beliefs were in opposition to those of professionals, and left them ‘open to accusations of ‘denial of reality’ and ‘nonacceptance’’ (p. 586). The authors concluded that such parents were ‘between joy and sorrow’, with joy coming from their experiences with their child and sorrow largely emanating from their experiences with professionals and others. Professional interactions characterized by implicit or explicit negativity had particularly significant impact.

In summary, the professional literature over recent decades increasingly is calling into question the viability of the traditional Kübler-Ross stages of grieving model as it pertains to parental responses to a diagnosis of disability in a child. Emerging in its place is an alternate positive model/lens that instead emphasizes and explains how parents often experience significant personal growth in responding to their child with disability (e.g. Nota, Soresi, Ferrarai, Wilgosh, & Scorgie, 2005; Scorgie & Sobsey, 2000; Scorgie et al., 2004; Scorgie, Wilgosh, & McDonald, 1999).

This alternate model does not deny that parents of students with disabilities experience stress, pain, and difficulty (e.g. Klein, 1984). The birth or diagnosis of a child with a disability is a profound, life-altering experience that may not (and perhaps cannot) be fully understood by those who have not gone through it personally (Snow, 2001). Many parents themselves have used terms such as ‘grief’ and ‘mourning’ to describe their experiences (Klein, 1984). Indeed, part of the staying power of the stages of grieving model is that it does resonate powerfully with certain parents and professionals.

Revisiting Haley et al. (2013)

This article asserts that the Haley et al. (2013) article exemplifies the deficit model of disability in regard to how parental response to disability is framed. In light of the challenges associated with the grief lens, the Haley et al. assumptions and conclusions deserve further examination.

For example, initially the parents were asked, ‘What was your first reaction when you were notified that your child was being referred to be assessed for special education services?’ When the parents’ response was vague enough that it could not be categorized into one of the three stages of grief, the parents were then asked, ‘How did you feel when you entered the room for the Individual Education Program (IEP) (ARD) meeting and saw the group of people who would be attending the meeting?’

The authors indicated that after first learning that a child had been referred to special education because of suspected disability, the initial reactions of many (47%) of the parents were interpreted by the authors as being consistent with the initial stage of the Kübler-Ross model of grief. A small number (11%) of the parental reports were characterized by the authors as being in the intermediate stage of grief (split between guilt and depression). The authors characterized the remainder (45%) of the parental reactions to disability as the final stage of grief (acceptance and hope). Haley et al. did not indicate what proportion of parental responses to question one were too vague to categorize and/or what proportion of responses to question two were used to determine which stage of grief the parent was experiencing. This is an important methodological/measurement issue.

While acknowledging that qualitative research of this nature typically requires significant latitude in how data are collected and interpreted, the two questions posed to parents were so open-ended, and so disparate conceptually, that a remarkable range of responses were inevitably evoked. Given how broadly the authors conceptualized the grief process, it would be difficult to not find evidence of some type(s) of affect interpretable as evidence representing one of eight different emotions associated with their proposed grief model.

If the Kübler-Ross stages of grieving model were indeed an accurate representation of how parents respond to the suggestion and/or diagnosis of disability in a child, one would expect that most parents’ feelings would be consistent with the first stage in that model, denial, yet, only 15 percent actually did so. Moreover, Haley et al. made no attempt to explain the essentially bi-modal distribution of responses in which 47 percent of the parental responses to the assessment for special education were interpreted as being in the initial stage (shock, denial, and anger) of the stages of grief model and 45 percent in the final stage of acceptance and hope. Why were there significantly more parents in the final stage of hope and acceptance when first learning of possible disability than in the intermediate stage of guilt and depression? Did 45 percent of the parents bypass the intermediate stage? How often does this occur? What other explanations might there be for this unexpected outcome?

Under the traditional stage/grief model, educators are likely to perceive parents of students with disabilities as individuals who are in need and to be pitied (in light of the tragedy and their denial about their child’s status). Given the additional subtle effect of confirmation bias that can easily occur during program planning meetings, the findings of Haley et al. should be interpreted as (at best) weak support for the grief lens.

While the grief model of parental response to disability was undoubtedly well-intentioned, it likely has inadvertently contributed to an inaccurate and disempowering view of parents by educators, one that has inhibited the effectiveness of parent–teacher collaborative relationships for decades. Fortunately, emerging contemporary perspectives on parental responses to disability provide a means for educators to reframe their perceptions of parents in an empowering way.

Implications for school professionals

There is a growing recognition that the establishment of a strong relationship between parent and educator is a key element to effective collaboration and program development for students with disabilities (Blue-Banning, Summers, Frankland, Nelson, & Beegle, 2004; King, 2003). In fact, it is increasingly common to read and speak of parent/family engagement (Family Involvement Network of Educators [FINE], 2012), terminology that suggests a closer degree of involvement between parents and professionals than in the past.

Based on the increasingly questionable Kübler-Ross grief model, educators often hold well-established and deeply engrained maladaptive beliefs about parents of children with disabilities (Henderson, Mapp, Johnson, & Davies, 2007; Miller-Marsh & Turner-Vorbeck, 2010). Ferguson et al. (2013) noted that the traditional portrait of parents was ‘frustratingly incomplete’. Thus, these pre-established educator beliefs generally are not accurate or useful and are arguably counterproductive. So, how might educators and schools improve in this arena?

Unfortunately, any change in such a fundamental belief system as the grief model is likely to take place only over an extended period of time, due to what Nickerson (1998) identified as belief perseverance. Belief perseverance is the strong inherent psychological resistance that emerges when an individual is presented with a new or significantly different idea (Nickerson, 1998). Nickerson suggested that many people are so unaware of this tendency that they fail to recognize it in themselves even when presented with substantial evidence of it.

Consequently, most educators who have been socialized for decades to perceive parental response to disability through the grief lens will find reasons to reject and/or discount an alternate and more empowering perspective. However, a tenacious commitment by all educators to a strength-based approach to family engagement, in the context of the emergent ‘transformational’ model, will facilitate the acceptance of a more sophisticated and nuanced understanding of parental response to disability. In short, educators’ intent on improving 21st century schools can move beyond the grief model as a significant step forward in engaging parents.