Introduction & Background | Elyza Z Polsky

Introduction

Problem Statement

The problem to be addressed by this study is that parents’ perceptions about their participation in the IPRC placement process for their deaf/hard of hearing (DHH) and autistic (ASD) child is not currently represented in research and literature. Understanding the perspectives of these parents may reveal important information about possible barriers to parent participation for other families and administrators looking to improve parent participation in the IPRC placement process for children identified with both hearing loss and autism.

Purpose Statement

The purpose of this action research pilot study is to examine the parents’ perceptions about their participation in the IPRC process for their DHH/ASD child. The problem to be addressed by this study is that parents’ perceptions about their participation in the IPRC placement process for their DHH and ASD child is not currently represented in research and literature. The researcher will conduct an interview with a parent of a student who is both DHH and ASD and who has been through the IPRC process. Findings are intended to indicate the need, if any, for changes to the interview instrument. Furthermore, the information will inform the future dissertation research of the doctoral candidate.

Research Questions

This action research was guided by one research question; if I interview and collect data from one parent of a student who is deaf/hard of hearing and has autism, and who has participated in the IPRC placement process, in what way, if any, will the information and feedback lead to changes in the interview instrument?

In addition to answering the question driving the pilot study, previously mentioned, this action research also focused on the two research questions and sub question from the overarching study. The following questions guided the choices made for the survey and interview questions:

What placement and outcome were parents hoping for during the IRPC process and were their preferences satisfied?

Sub question 1- How much consideration did the parents feel their input and preferences were given during the IPRC process?

In what way did the parent feel the school was able to meet their child’s complex educational needs?

Language Statement

Addressing the topic use of language and terminology related to hearing loss, autism, and children is essential prior to further exploring the subject of this study. There is an ongoing debate between both individuals and groups as to whether they prefer the use of people-first language or identify-first language. When discussing autism, this would mean referring to an individual an autistic person, or a person with autism. This is a personal preference, and it can carry significant meaning for the individual. The term autism and autism spectrum disorder (ASD) will also both appear throughout the paper. There are several terms used to refer to individuals with hearing loss. Most are born out of the medical view of hearing loss and describe the individual’s hearing in relation to aspects such as the severity of the loss. For example, the term hard of hearing is often used to refer to someone with a mild to moderate hearing loss, while the term deaf might be used to refer to an individual with a severe to profound loss. When the term Deaf is used with a capital D, it references members of the Deaf culture who use American Sign Language (ASL) as their main method of communication. Hearing impaired can still be noted in older studies, however, due to its implication of a deficit, it is now rarely used in any formal research. The term hearing-impaired or impairment appears only when referencing its use in another study. In general, the terms used throughout this paper will reflect the studies and articles from which they were taken. Regarding the problem of practice and this current study, the terms deaf/hard-of-hearing (DHH) and autism spectrum disorder (ASD) will be used. Person-first and identity-first language will both be used and mixed throughout this paper. Each individual has their own personal preference which should be respected when referring to them.

Prevalence

There are no current statistics on the number of children who are diagnosed with both DHH and ASD in Canada or in the United States. The most recent numbers referred to were published by the Gallaudet Research Institute (GRI) and according to their data 1 in 59 children with hearing loss also have autism (Gallaudet Research Institute, 2013). Their 2013 survey published data suggesting there was a higher rate of autism within the deaf population (Gallaudet Research Institute, 2013). In December 2021 the Center for Disease Control (CDC) released new numbers reporting that 1 in 44 children were being identified with autism, a change from the previous 1 in 54 in 2016 (Centers for Disease Control and Prevention, 2021). While there are no definitive rates of prevalence, it would be a reasonable hypothesis that as the rate of autism increases, the number of children who have both hearing loss and autism would increase as well.

Prevalence of Autism in Canada

The most current data available on the prevalence of autism in Canada was collected in 2019 and indicates that 1 in 50 children and youth aged 1 to 17 had received a diagnosis of autism spectrum disorder (Public Health Agency of Canada, 2022). The same report also shared a breakdown of the prevalence rates by provinces and territories. The rate in Ontario at the time was 2.1%, just marginally above the 2.0% Canadian average (Public Health Agency of Canada, 2022). As stated earlier, in a December 2021 press release, the CDC reported an increase in the prevalence of autism in the general United States population (Autism Prevalence Higher in CDC’s ADDM Network, 2021). Beers et al. (2014) in their review of the literature surrounding autism and peripheral hearing loss, noted the increasing rates of autism in 2000, and referenced other studies which suggested the explanation might be due to both an increased awareness of autism as well as the diagnostic criteria having been broadened.

Prevalence of Hearing Loss in Canada

There are currently no definitive estimates of the prevalence rates of hearing loss in the school age population in Canada (Millett, 2019). The most recent statistics available from Statistics Canada were shared in 2015. While data broken down by age, is available, it does not provide the school-age population in its own separate category. Statistics Canada reported that 30.1% of men and women aged six to 79 had low-frequency hearing loss, 52.9% had high-frequency hearing loss and 34.8% had speech-frequency hearing loss. This statistic does not provide information on the severity of the hearing loss. In 2017 Feder et al., conducted a cross-sectional population-based study in an effort to estimate the Canadian prevalence of hearing loss in children and adolescents. Their findings showed that 7.7% of children between the ages of six to nineteen had some degree of hearing loss in one or both ears.

Prevalence of DHH/ASD in Canada & the United States

There have been Canadian and American based studies which have commented on the prevalence of hearing loss among individuals who have autism. Beers et al. (2013) in their Canadian based study, did not find any conclusive evidence that an increase rate of prevalence exists. They noted however that when the two conditions co-exist, one the diagnosis of one often causes a delay in the diagnosis of the other. Fitzpatrick et al. (2014) conducted a retrospective chart review using a Canadian sample and found results which supported the Gallaudet Research Institute survey which suggested a higher prevalence of autism in children with hearing loss (Gallaudet Research Institute, 2013). At one time it was estimated that 9% of deaf children receiving special education services were also identified with autism (Young et al., 2019). It has been challenging, however, to compile and report on these rates and to gain consensus (Nelson & Bruce, 2019).

National Context

The Canadian government sets out legislation regarding removing barriers and improving accessing for individuals with disabilities. Specific to the implementation of legislation related to education, each province or territory is responsible for its own governance.

With respect to children with hearing loss, the most obvious difference between province/territory has been the implementation of the Early Hearing Detection and Intervention programs (EHDI). The goal of the program is to proactively address infant hearing issues. As of 2019, seven out of the 13 provinces/territories in Canada were deemed ‘insufficient’ on the report card created and graded by the Canadian Infant Hearing Task Force (Speech-Language & Audiology Canada & Canadian Academy of Audiology, 2019).

Each provincial government is responsible for the creation and implementation of legislation related to special education, an example of which is presence of the IEP in only select provinces/territories. Variations exist in how students with additional needs are accommodated within the school system. “Despite, or perhaps because of, a lack of a national strategy for inclusion, boutique programmes have been introduced within various provinces that serve as exemplars of the innovation and creative ways that Canadians are approaching academic and social inclusion” (Sokal & Katz, 2015, p.43).

Situational Context

The province of Ontario follows the most detailed legislation regarding special education procedures, specifically those addressing identification and placement of students, of all the provinces and territories in Canada (Paré, 2015). School boards in Ontario follow the rules laid out in Ontario’s Education Act (Education Act, 2001). Within the Education Act are regulations and policy/program memoranda as well as policy and resource documents which pertain specifically to special education. Regulation 181/98: Identification and Placement of Exceptional Pupils outlines the details and information regarding IPRC process (Education Act, 2001). This ensures a consistency in the manner in which the IPRC meetings are structured, however, there are no regulations to address the follow up once the decision has been made.

There are 72 school boards in Ontario, including 31 English public boards, 29 English Catholic boards, four French public boards, and eight French Catholic boards (How Ontario’s Education System Works | Publicly Funded Education, 2017). The Toronto District School Board (TDSB) is the largest of the school boards and is also the largest school board in Canada. The TDSB was created on January 1, 1998, as a result of the amalgamation of six school boards from the Toronto region. Services for students with hearing loss and autism became centralized in one office which now served a city which previously covered six school boards. Centralizing the services allowed for consistency in the procedures and routines followed and provided. A challenge, however, became and continues to be meeting the needs of the extremely diverse population of families that spans this large board. While the categories and terminology used regarding exceptionalities for identification and placement of students is largely consistent across school boards in Ontario, the placement and learning conditions implemented by each board tends to vary (Parekh & Brown, 2018).

Personal Context

Since beginning my career in deaf education, I have taught in both self-contained classes for deaf/hard of hearing students and have worked as an itinerant teacher. In both roles, I worked with students who were engaging and eager to learn and who also had areas of challenge in addition to their hearing loss. The term deaf plus is often used within deaf education to refer to a student who has hearing loss and has an additional exceptionality (Gillinger, 2020). In my current position as a special education hearing itinerant teacher for students who are deaf or hard of hearing for the largest school board in Canada, I have witnessed as the number of students on my caseload who are considered deaf plus grows from year to year. The specific population of students, however, which seems to be growing at a faster rate, are those who are both DHH and ASD.

As a hearing itinerant teacher, I have the unique opportunity to work with students from kindergarten to grade 12. I also often work with the same student(s) for multiple years, allowing me to build relationships, not only with the student, but with their family and their non-school board support providers. The students on my caseload who are DHH/ASD are in a variety of class placements and receive a variety of supports from the school board. Some students are learning in a general education class with no additional support, while others are in the same type of class but receive one-on-one support for some amount of time during the day. Other students learn in a self-contained class with other students who have hearing loss and are taught by a teacher of the deaf. There are also students who are learning in a self-contained class for students with autism and they are taught by a teacher who has taken some additional qualification courses in special education and autism. Finally, there are some students who are learning in other self-contained classes, such as those for students with learning disabilities or mild intellectual disabilities. Self-contained classes provide a low student to teacher ratio, along with specialized support offered by a teacher with additional qualifications in special education. Self-contained classes are organized by exceptionality.

Over the years I have observed that not only is there a large variation in placements, but it is difficult to determine based on observation, how the placement decisions were made. Having seen some of the student records, I have noted many students who moved from placement to placement. In some cases, the movement involves a change of school in addition to a change of class.

The placement of students who are both DHH/ASD is an area which requires significant attention. The placement process is often the beginning of the education journey and it’s at this point where parents’ input can be invaluable but is also overlooked. Unfortunately, parents have not been consistently involved in the decision-making process to determine the best educational placement for their child. I recognize the need to focus research and expand our knowledge in this area.