By Elizabeth Baez
This issue of NASET’s Autism Spectrum Disorder series explores the challenges that parents or guardians of children with disabilities face in the education system when the child is placed in a special education setting. The results of the research were quite negative. According to the data collected by the researcher’s parents face many challenges in the special education decision making process for lacking the support and knowledge necessary to become informed advocates. Parents or guardians felt that their child’s needs were not met in the special education setting depending on the child’s functional needs. In one article the researchers interviewed 144 parents who concluded that the parents were concerned about the amount of knowledge teachers had when educating children with disabilities. Researchers used Log binomial regression to examine the relative risk for the child’s unmet needs. This review explores the fact that parents face issues in the school system as much as they do in their social lives.
Abstract
This literature review explores the challenges that parents or guardians of children with disabilities face in the education system when the child is placed in a special education setting. The results of the research were quite negative. According to the data collected by the researcher’s parents face many challenges in the special education decision making process for lacking the support and knowledge necessary to become informed advocates. Parents or guardians felt that their child’s needs were not met in the special education setting depending on the child’s functional needs. In one article the researchers interviewed 144 parents who concluded that the parents were concerned about the amount of knowledge teachers had when educating children with disabilities. Researchers used Log binomial regression to examine the relative risk for the child’s unmet needs. This review explores the fact that parents face issues in the school system as much as they do in their social lives.
Introduction
In the article “In Parents’ Voices: The Education of Children With Autism Spectrum Disorders”, the authors mentioned that there has been a dramatic increase in the number of children with Autism Spectrum Disorder (ASD) (Starr & Foy, 2014). Most of the students in special education settings are with ASD. There has been a variety of studies that are exploring the perspectives of parents of children with disabilities and the role they play when making education placement decisions. Children with autism have complex needs ranging from medical, educational, and social (Brown, et al., 2010). Parents or guardians with disabilities are the ones to be left with the burden of caring for the child and becoming their strongest advocate.
However, making decisions for their children could be quite stressful when they are not provided with all the information or when they are not involved in the decision-making process. Parent involvement is essential since the information they provide serves as a guide and pertinent information in designing these students Individualized Education Plans (IEP). Chen and Gregory state that children that require special accommodations in school become important members of the child’s prereferral intervention team (Chen & Gregory, 2014). Their study found that parent’s presence in the prereferral process was an important component to the child receiving related services and early interventions. However, studies have agreed that procedural safeguard documents provided by the state departments of education are written at excessively high levels. Some of the parents have trouble understanding the jargon written on these plans (Gomez Mandic, Rudd, Hehir, & Acevedo-Garcia, 2014). Nonetheless, adjustments must be made to make sure that parents or guardians are provided with the information necessary to help relieve any type of anxiety and help them become more involved in the child’s education process. By increasing parental involvement, we improve student achievement. (Valle, 2011).
Autism in a Nutshell
Under the Individual with Disabilities Education Act (U.S. Department of Education , 2019), Autism Spectrum Disorder is defined as a developmental disability significantly affecting verbal and nonverbal communication and social interaction, usually evident before age 3 that adversely affects a child’s educational performance. Other characteristics often associated with ASD are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. The term does not apply if a child’s educational performance is adversely affected because the child has an emotional disturbance (Introduction to Autism Spectrum Disorders, 2019).
Characteristics of Children with ASD
Individuals with ASD display a variety of symptoms and characteristics. According to the National Association of Special Education Teachers (Introduction to Autism Spectrum Disorders, 2019), it is imperative that one understands that individuals show different symptoms based on their uniqueness. Individuals with Autism Spectrum Disorder might have impairment in social skills, communication skills and unusual and repeated behaviors and routines. In addition, they may experience sensory issues, cognitive issues, seizures and echolalia. The severity of the symptom depends on the severity of the disability on the individual (Introduction to Autism Spectrum Disorders, 2019). Children with autism are unique and all display different symptoms and characteristics. Some of them might have social issues along with communication deficits while others might have just minor social issues. Children may also exhibit a certain behavior depending on what they are exposed to. There are some children that have sensory issues and are sensitive to sounds (U.S. Department of Education , 2019).
Autism Diagnosis and Student’s Functional Independence Needs
A group of six researchers concluded that families of children with high and low functioning would report a greater perceived unmet need that families with moderate functional independence. The researchers determined that this is for the following reasons: challenging behaviors and deficits in adaptive skill among children with ASD have a significant impact on parental mental health. Families do not experience the disability in the way that the child does. Therefore, the impact of the child’s disability might be reflected in changes that result in burden or social isolation (Brown, et al., 2010). In this study they focused on school aged children who had aged out of pre- school services. The research was conducted with five children where two were between 13 to 16 years of age. They classified the study into three categories: low functioning independence, moderate functional independence, or high functional independence. They used The Scales of Independent Behavior -Revised assessment which measures the child’s adaptive skills and the frequency and severity of challenging behaviors (Brown, et al., 2010).
Parents have the idea that when their child is low functioning, their needs are not met at school. These children require complex support from school districts and often they may have a person working directly with them. Only the burdens of unmet needs were examined and a not whether the types of unmet needs identified differed depending on the child’s level of functioning. By this the authors mean that families of children with high functional independence may experience unmet needs for recreational activities or social engagement while families with low functioning independence may experience unmet needs for respite or professional support (Brown, et al., 2010). Therefore, the researchers suggested that more research needed to be done to determine the factors and understand what needs are not met according to the parents.
Challenges Parents Face as Special Education Advocates
John W. Valle (2011) describes that parents experience Special Education as being part of the movie “Alice in Wonderland”. The mother of a child with autism or learning disabilities plays the role of Alice. They are trying to understand their child’s exceptionality while at the same time having to adhere to other people making decisions for their child. The parents just seem to sit at meetings and not understand the jargons that the multidisciplinary team use. Valle focused her research on mothers of children with special education because mothers engage more frequently with school staff (Brown, et al., 2010).
Additionally, mothers are more likely to be perceived by school personnel as “too biased” just for being a woman. The author stated that in the past few decades she has listened to mothers share their experiences as advocates for their children in special education settings. There is a correlation between a mother’s experience and their involvement in the decision-making process. The author of this article accompanied parents to meetings in every grade level and in both private and public school for ten years. She used the data of 15 mothers with children who had learning disabilities to conduct this research. The author determined that mothers described their experience as an advocate for a special need’s child as a disorientation as they gradually gain their bearings in an unfamiliar place. Mothers reported that when they participate in a meeting it is as if they were joining a “Mad Tea Party” like in the movies (Brown, et al., 2010).
Readability of Special Education Procedural Safeguards
In this study the researchers focused on exploring the literacy related barriers that parents face at meetings or when exposed to their child’s educational information. The authors determined that 16% of their participants scored in the high school range, 55% scored in the college range and 39% scored in the graduate or professional level (Gomez Mandic, Rudd, Hehir, & Acevedo-Garcia, 2014). This data for this study was collected through procedural safeguard documents from state department of education website for each of the 50 states. The authors determined that the procedural safeguards provided by the department of education are written at excessively high levels. Parents of students with disabilities suggest that there is a disproportionate burden of limited literacy among these parents compared to the general population (Gomez Mandic, Rudd, Hehir, & Acevedo-Garcia, 2014). When literacy and language demands exceed people’s skills, access to information, services and rights is contained (Gomez Mandic, Rudd, Hehir, & Acevedo-Garcia, 2014). Parents need to be able to understand the information given to them.
Conclusion and Recommendations
Parents or guardians are very important assets in a child’s education. Especially, if the child has special needs, parents become advocates to ensure that the child’s needs are met. Parents feel that children who have lower adaptive functions have complex needs that are not met. Also, parents feel as if they are not included in their child’s educational and academic decisions because sometimes the information given to them is written at a high level. In a recent study, mothers were also seen as biased for being the mother of the child. Whereas, fathers are viewed differently.
Providing parents with information and all the tools necessary to succeed at home and in school are imperative to student achievement. Parents spend more time with their children, if everyone is on the same page, the child will benefit a lot and excel in any setting. Schools can provide workshops to these parents that perhaps have a language barrier and do not understand the procedural safeguards as it pertains to their child.
References
Brown, H. K., Quellette-Kuntz, H., Hunter, D., Kelley, E., Cobigo, V., & Lam, M. (2010). Beyond an Autism Diagnosis: Children’s Functional Independence and Parents’ Unmet Needs. Journal of Autism and Developmental Disorders, 1291-1302.
Chen, W.-B., & Gregory, A. (2014). Parental Involvement in The Prerefferal Process: Implications for Schools. Hammill Institute on Disabilities, 447-457.
Gomez Mandic, C., Rudd, R., Hehir, T., & Acevedo-Garcia, D. (2014). Readability of Special Education Procedural Safeguards. Hammill Institute On Disabilities, 195-203.
Introduction to Autism Spectrum Disorders. (2019, December). Retrieved from National Association of Special Education Teachers: www.naset.org/index.php
Starr, E. M., & Foy, J. B. (2014). In Parents’ Voices: The Education of Children With Autism Spectrum Disorder. Hammill Institute on Disabilities , 207-216.
U.S. Department of Education . (2019, December 6). Retrieved from U.S. Department of Education : sites.ed.gov/idea/
Valle, J. W. (2011). Down The Rabbit Hole: A Commentary About Research on Parents and Special Education. Learning Disability Quarterly , 183-190.