Research in the area of deaf/autistic students is relatively new. “There is a significant lack of evidence guiding our understanding of the needs of families of children who are deaf/hard of hearing (Deaf/HH) with an autism spectrum disorder (ASD)” (Wiley et al.,2018, p.378). It is necessary to draw on findings from studies that focus on students with autism, students with hearingloss, and students with other co-occurring conditions, due to the limited research available specific  students who are both DHH/ASD. Parents are key collaborators in their child’s education and they provide essential information for the school staff when discussions are made regarding placement intervention (Kurth et al., 2020). There is limited research however into the parents’ perspectives of the IPRC process specific to the field of education of DHH/ASD students. Research examining the perspectives of parents of students who are autistic, DHH, or who have other co-occurring conditions have focused on prevalence, power imbalance, collaboration, barriers and facilitators to parental participation, and placement issues. These areas of focus have been useful in organizing the investigation in the DHH/ASD research as well.

 

     The limited research available specific to students who are both DHH/ASD made it necessary to draw on findings from studies that focused on students with autism, students with hearing loss, and students with other co-occurring conditions. As is the case in the IPRC/IEP research, patterns and themes can be noted in similar areas of research which can be helpful in directing exploration and in finding appropriate theoretical frameworks to guide inquiry and in the area of DHH/ASD. Zaidman-Zait et al. (2016) in their research attempted to develop a clearer understanding of parents’ lived experience of managing their child’s disability. They touched on the issue of educational needs and placement in their discussion of their emergent themes. In their study they looked at only families with children who had hearing loss. Regardless, many of the themes which emerged can be used as guides when attempting to gain deeper insight into the phenomenon of parents of children who are DHH/ASD and their lived experiences.  It becomes necessary to not only look outside of this small population of students, but it requires a deeper search into less recent research in order to find literature and support upon which to draw. Realizing that prevalence rates and statistics are outdated, many of the findings can be synthesized to provide a background and foundation for investigation. 

While there is a need to further the research in all areas related to students who are DHH/ASD, the role that parents play in the educational system, specifically in the placement process, is a priority due to being largely overlooked. Parents are key collaborators in their child’s education, and they provide essential information for school staff when discussions are made regarding placement and intervention (Kurth et al., 2020). Given the limited research in the field, it is necessary to examine both studies investigating the IEP process mandated by the IDEA and the IPRC process outlined in the Education Act, when discussing the parents’ perspectives of the meeting process. There are several areas which have been discussed in the research regarding parent perspective in the IPRC process. It is essential to look at the most current data on the prevalence of the students.

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     The areas which are often discussed in the research related to the topic of parent perspective are: prevalence, power imbalance between the parent and school, collaboration, barriers and facilitators to parental participation and placement issues.  

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Collecting data on the number of students who are both DHH and ASD is not simple. Understanding the difficulties involved in determining the prevalence rate helps to develop an understanding of the issues which surface in other areas such as language, assessment, placement, and intervention. Both autism and hearing loss are conditions which manifest in different ways due to the variability of the characteristics. Controversy exists in the literature regarding the prevalence of hearing loss among individuals with autism (Beers et al., 2014). In their 2014 study, Beers et al. (2014) found no conclusive evidence that children with autism were at an increased risk for peripheral hearing loss. They suggested that the various study methodologies and sample sizes, as well as subject inclusion criteria, could be the cause of the variability in prevalence reports. Fitzpatrick et al. (2014) conducted a retrospective chart review which provided an estimate of the proportion of children with both permanent hearing loss and autism within a region in Canada. Their results were consistent with those of the Gallaudet Research Institute (2013) which suggested a higher rate of autism in children with hearing loss (Fitzpatrick et al., 2014). The data in this study, however, were collected using medical chart documentation of a clinical diagnosis from a developmental specialist (Fitzpatrick et al., 2014). Scott & Jansen (2020) noted that children who are DHH are in fact more likely to be diagnosed with autism than hearing children. They also noted that the reverse, children with autism were more likely to receive a DHH label than their typically developing peers. To support their position Scott & Jansen (2020) cited two studies, one of which was Beers et al. (2014). This was a misuse of the position stated in the Beers et al. (2014) study. Other factors which can influence the collection of data related to prevalence in the area is whether the co-occurrence of hearing loss and autism can cause one condition to be expressed differently as a result of the effect of the other condition (Young et al., 2019). This can also result in delaying or masking one of the conditions causing the identification to be missed. Additionally, there are reports of parents who do not pursue the assessment and evaluation for autism following a diagnosis of hearing loss. This may be due to the difficulty that parents have when faced with accepting and dealing with a second, additional diagnosis for their child. 

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     There may be a variety of reasons for parents perceiving an imbalance of power between themselves and the school IPRC team. Unfortunately, the result of the imbalance can make it difficult or even impossible to create a successful collaborative partnership (Friend & Cook, 2017). Zagona et al. (2019) shared a study in which fathers reported that their lack of legal background and special education knowledge made the school meetings confusing and overwhelming. These fathers perceived themselves unable to contribute to the decision-making process. Paccaud et al. (2021) noted that building trust between the parents and the school was key to leading to a collaborative relationship in which the parties mutually recognized the other’s expertise. The building of trust serves to create some balance of power between the two. In some cases, it may go beyond having failed to foster a collaborative relationship between the stakeholders. The imbalance can be created by a lack of awareness or cultural insensitivity on the part of the team members. There may be an actual hesitation and separation between the school and the families maintaining the imbalance of power. For example, parents come to the meetings potentially with different agendas and goals than the members of the school team. The two sides may not agree on the benefits and the long-term implications of the possible placement options. This can lead to contention and negative treatment from the school team towards the parents (Kurth et al., 2020). Paré (2015) in her chapter “Inclusion and Participation in Special Education Processes in Ontario, Canada” and Reid et al. (2020) in their study, both looked at the structure of the IPRC process and how it creates an environment of power imbalance. Parents enter the meeting and are faced by a team of individuals consisting of school professionals. They are most often attending on their own, and this environment is not conducive for parents to speak on behalf of their children (Paré, 2015). 

In their study, which examined the ways in which parents of children with disabilities were included or excluded from the educational decision-making process, Love et al. (2017) found several themes which emerged and which can be shown to support the idea of power imbalance. Parents reported experiences in which the schools initiated the decisions without consultation and in one case the author noted a parent shared their fear of not signing the IEP regardless of being unhappy with the content for fear of repercussions (Love et al., 2017). The same study discussed the barriers created by school hierarchies (Love et al., 2017). These hierarchies consisted of the upper administration who held the decision making power and had the ability to pressure teachers and other members of the team to follow along with their decision. Kurth et al. (2019) conducted focus groups with parents of children with an intellectual disability or a developmental disability and found that in some cases parents were not able to reach an agreement with the school regarding placement, while in the cases where they were able to come to an agreement it was described as having been a challenging process. One parent in their study commented that there was no choice in the placement process (Kurth et al., 2019). 

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     “Interpersonal collaboration is a style for direct interaction between at least two coequal parties voluntarily engaged in shared decision making as they work toward a common goal” (Friend & Cook, 2017, p.5). This definition of collaboration highlights the important aspect of the equality between members.  An imbalance in power between members, as previously mentioned, creates an immediate barrier to the collaborative process. Misunderstandings and miscommunications between parents and school staff can also impede the development of a strong collaborative relationship. Cultural factors which can affect the families’ perspectives, interactions and engagement levels can be perceived by the school team as uncaring or resistant (Olivos et al., 2010). The families maintain their cultural capital which is infused into their interactions with the school. At the same time the school staff transmit the dominant culture implicitly (Olivos et al., 2010). This difference in culture and resulting misunderstanding serves to undermine the collaboration process. Bourdieu’s theory of cultural capital (1977) provides framework for the phenomenon of the clash of cultural capital between the school and family. In their review of the literature, Kurth, Zagona et al. (2019) noted that parents were appreciative when schools wanted their input and listened to their concerns and requests. Specific to IEP meetings, they highlighted another study which “found communication, commitment, trust, and respect, among other qualities, as being important in successful collaborative partnerships” (Kurth, Zagona et al., 2019, p.108).  A similar comment was noted by parents in another study, where they prioritized collaborative relationships with the school when making decisions but pointed out that they seldom experienced the collaboration (Kurth, Love, et al., 2019).

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     Identifying the barriers to effective participation and communication are essential in order to be able to begin to work to dismantle them. Although there are differences between the IPRC process in Canada and the IEP meeting in the U.S., many of the issues that arise with regard to parental participation are similar. Parents have reported feeling excluded from the decision-making process for many reasons such as decisions being more heavily weighted on assessments rather than on parental input (Fish, 2008). 

Although it is not discussed specifically as an obstacle in the IPRC process, Papoudi et al. (2021) in their scoping review of parents of culturally and linguistically diverse children with autism, discussed some issues which could hinder the success of the team meeting. Specifically, they noted the variation between various ethnic groups regarding their understanding of autism. For example, different cultures have been shown to hold different views and beliefs which would directly influence their understanding or approach to education regarding autism (Papoudi et al., 2021). More et al. (2013) addressed the issue of language interpretation for diverse families in their study and pointed out how cultural and linguistic barriers prohibit parents from meaningful participation in educational planning. In their conclusion, the authors commented that in addition to ensuring that the voices of parents are heard, teachers, through the use of quality language interpreters, can make certain that the parents’ voices are valued in the decision-making process. Fish (2008) referenced several studies which found correlations between low socioeconomic status and cultural diversity and challenges to collaboration in the IEP meeting. All of these factors could easily impact the parents’ involvement or lack of involvement in the IPRC meeting. Language barriers have been noted to create challenges for parents with respect to their ability to comprehend the jargon and terminology related to IEP meetings (Fish, 2008). The language barriers can also be caused by lack of appropriate or adequate interpreting services (Love et al., 2017). The gap in the literature around culturally and linguistically diverse families who are additionally marginalized by their membership in the world disability, is one that needs to be addressed.

Barriers in the form of implicit bias from the school staff can alienate and impede the decision-making process. “Implicit bias refers to unconscious attitudes, reactions, stereotypes, and categories that affect behavior and understanding (Yale University, n.d.).”  When teachers focused on a student’s deficits rather than their strengths, parents reported feeling that the staff were not accepting their child (Kurth et al., 2019). The critical disability theory view of disability as a difference rejects the use of a deficit model. Kurth et al. (2019) shared a parent’s concern regarding the focus on their child’s deficit and their belief that it could potentially have been a cause of the failure to implement the IEP services. Parekh et al. (2018) in their exploratory study of teachers’ perceptions of learning skills, the skills evaluated on a report card separate from curricular achievement, found the presence of implicit bias towards special education students. Students who had been identified and/or had been in a full-time special education class were less likely to receive an ‘excellent’ on their learning skills. This study provides insight into the implication of implicit bias, and although it is focused on learning skills rather than its impact on the decision-making process, it illustrates the issue. “The consequences of presuming certain students do not embody the values and skills espoused in the Ministry’s Learning Skills is the marginalization through the exclusion from rigorous programming opportunities and venturing into precarious pathways through school” (Parekh et al., 2018, p.21).

Studies have focused on the factors which facilitate collaboration and parental participation in the IPRC process. Participants in one study noted that educating themselves proactively on the process and learning about special education law was one way to improve the quality of the meeting (Fish, 2008). The participants in this particular study had several suggestions and the majority noted positive perceptions of the IEP meeting. It is worth noting that the demographics of the participants were 80% white, non-Hispanic and the majority were from middle to upper middle-class socioeconomic families (Fish, 2008). The use of case managers as a tool to help liaise with the school staff and other professionals during the collaborative discussions improved satisfaction levels for the families of children with dual sensory impairments (Whicker et al., 2019). Case managers are not utilized in the IPRC process in Canada.

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     Looking solely at students with ASD in the United States, Kurth (2015) in her study noted that once placement decisions were made for a child, they typically remained in that placement. This highlights the need to ensure that placements are done correctly from the start. It also brings forward the idea that the education system is not properly meeting the students’ needs if it is not periodically re-evaluating their strengths and challenges to determine if a change in placement is necessary. The study focused on the factors which were involved in determining placement. It gave additional information regarding how decisions were made when it came to the decision-making process. The author pointed out that some decisions were based on what was available in the area, rather than the most appropriate factors, such as the child’s needs. As well, child-specific factors and external factors such as teacher training and financial motivations, were all cited as contributing to the placement decision. Findings from this study showed that environmental factors weighed heavily in the decision-making process and that these had a greater impact than child characteristics. “Children with hearing loss and ASD (or hearing loss with other co-occurring disabilities) are often placed in inappropriate educational settings with inappropriate interventions (Guardino, 2008)” (Myck-Wayne et al., 2011, p.380).  The decision-making surrounding educational placement can be challenging as a result of the difference of opinions, goals and expectations that the different team members bring to the IEP meeting (Kurth, Love et al., 2019).