Self-Advocacy & Inclusion of Non- Low- Vocal Students with Disabilities in the Individual Education Plan (IEP) Meeting Process

 

The First Amendment of the Bill of Rights of the United States of America partially states that, “Congress shall make no law […] abridging the freedom of speech” (Bill of Rights, n.d.). Yet, one of the most disturbing trends found in special education is the exclusion of students from the process of the individualized education plan (IEP) meetings due to non- or low-vocal capabilities. It is not unfounded to believe that one with a disability which impedes vocal responses would be unable to express likes or dislikes when the belief is based solely on the lack of verbalized evidence. However, vocal communication is not the only form human beings have been endowed. Other forms of communication such as body language and facial expressions aid us in relaying our likes, dislikes, needs, or wants. Additionally, in the current era, technology has advanced to such a point as to make communicating with someone an easier hurdle to overcome than ever before. Addressing every aspect of the IEP with a student with vocal communication deficits might seem overwhelming. Therefore, in order for the schoolchild to have some amount of participation in an IEP, it might be more feasible to start with one area of planning.

An overarching concern for parents, guardians, and families of children who have little to no vocal capabilities is that of safety. Because of the potential mortal dangers that accompany lack of safety skills, this would be a good place to start including the child in the IEP process. It directs attention to one of the most important areas of a person’s life. Anderson, et al. (2012) wrote an article in which the focus was to promote awareness of the very real and dangerous issue of elopement in children with autism spectrum disorder (ASD). The researchers defined elopement as “a dependent person exposing him or herself to potential danger by leaving a supervised, safe space or the care of a responsible person” (Anderson, et al, 2012, p. 871). Among the chief alarms of elopement is the potential risk of drowning, abduction, or other perilous scenarios (e.g. motor accident). This information is given to illustrate the importance of including a child without vocal interaction skills in the portion of IEP conference which discusses safety skills.

One of the nicest features of a child being a part of the safety planning portion of their IEP is that it can start as early as elementary school, rather than waiting until the child is already in their teenage years. He or she can learn the value of being a part of planning for their future as well as the potential for self-advocacy at a primary age. Research has shown the importance of self-directed IEP meetings even for those who are vocally challenged. The research article written by Hagner, Kirtz, Cloutier, Arakelian, Brucker, and May (2012) demonstrated student participation in meetings through the use of note writing (by the student) which was then read aloud by another meeting member, the use of an assistive communication device, or a thumbs up / thumbs down response. In Murphy’s, Clegg’s, and Almack’s 2011 study, some of the student participants could only point or use sign language/hand gestures. Both of these articles show how even the most profoundly disabled person can be a part of their IEP meetings.

The child is not the only one who will benefit from safety planning. Parents of children who have previously encountered safety issues can help teachers and other staff members understand the extreme dangers and help establish ways to increase the child’s safety. And, when the family is part of the planning process, they provide important information regarding the life of the person of focus. The sharing of this information assists with person-centered planning, as the application of the data allows the focus to be on the individual’s goals (Whitney-Thomas, Shaw, Honey, and Butterworth, 1998). Among such aspects of the person’s life is the familiarity with the mannerisms (e.g. hand gestures, body language, etc.) that express just how the non- or low-vocal person is feeling or what they might be thinking. Just as parents can share vital details about the child’s life with the teachers and service personnel, the teachers and service personnel can make families aware of available resources that they may otherwise have been unaware of at the time of the meeting. Together they can tackle such issues as bullying, sexual abuse, wandering/elopement, and other general safety topics (e.g. poisoning, auto and bus safety, etc.), which are all especially concerning to families of children who cannot communicate vocally. One of the diagnostic criteria for those with ASD is a deficit in nonverbal communicative behaviors. (Centers for Disease Control and Prevention, 2015). Therefore, having them present and ideally involved in the safety planning area of their IEP meeting is critical.

The study by Anderson et al. indicated that a very large portion (49%) of children with ASD had eloped “at least once at the age of [four]” (2012, p. 873). Furthermore, enough time had passed for 53% of those who had eloped to be considered at a higher risk of injury or death (Anderson, et al., 2012). Specifically it was indicated that 65% of elopers came very close to injury through traffic, and 24% were at risk for drowning. (Anderson, et al., 2012) Those diagnosed with stage three autism (i.e. greater severity) were at an increased risk for elopement. The majority of parents indicated that the elopement behavior was driven by a desire to gain something, such as to go someplace they liked, just to play, or enjoy a special interest. Escape of sensory stimuli or anxious situations were also reasons for elopement, but were not as large of a percentage as the other motives. Plus, the latter causes were employed more often by children with Asperger Syndrome (AS). Usually a child who had bolted did so from a home, store, or classroom. Results also indicated that children who responded to their names were less likely to elope (Anderson, et al., 2012). Since ASD is considered a developmental delay, a child diagnosed on the spectrum might not learn as quickly about the dangers around them as a typically developing child would. It is due to these delays in learning that it becomes necessary to put in place certain safeguards and to teach safety skills. Including safety skill training as part of an IEP can make a huge impact from the initial meeting.

One way to assist with IEP participation is to train the person through mock IEP meetings. Arndt, Konrad, and Test conducted a study that showed an increase in student participation from baseline to intervention (mock IEP meeting), which later could be generalized during the real IEP meeting. When Edward P. Snyder implemented an intervention to teach teenagers with intellectual, developmental, and behavioral disabilities how to lead their own IEP meetings, he found that “teaching self-determination as part of the IEP meeting process [improved the students’] ability to manage their IEP meetings across instructional sessions” (2002, p. 350). He encouraged the concept that including students who received special education services helps them to acquire and improve self-determination skills (Snyder, 2002). Results of a two-year study done by Woods, Martin, and Humphrey showed that students who had received self-directed IEP instruction increased their involvement in the meeting from year one to year two. Additionally, there was an increase in student development of post-school goals, confidence, maturity, and self-advocacy in one year from Self-Directed IEP intervention (2013). Not including the student of focus in the planning and conducting of their IEP meeting will reduce the possibility of their gaining self-determination skills.

A theme noted in the article “Student involvement in transition planning: Unheard voices” was a lack of student inclusion or consideration in planning for their future after high school graduation (Thoma, Rogan, & Baker, 2001). Their qualitative research was conducted on students with moderate to severe and multiple disabilities. The goal was to identify the level of student involvement in their own transition planning during their final year of high school. The article’s abstract stated that little was done in preparing students for their transition planning meetings. The students were present for the meetings, but it was regulated by school personnel who “interacted primarily with parents and other professionals” (Thoma, Rogan, & Baker, 2001, p. 16). The students were spoken about rather than with, and the student’s deficits were the focus of planning. While it is important to address weaknesses, it is more important to build on the strengths of the individual. A low- or non-vocal student who is able in some way to transmit personal information (e.g. name, emergency contact, phone number, etc.) is already headed in the right direction. Therefore, instead of focusing on their weakness (i.e. communication), build on the fact that the person is able to identify pertinent information.

Having a student with communication difficulties participate in the planning and conducting of the safety portion of their IEP meeting is the perfect opportunity for them to exercise the self-advocacy skills they will have learned through interventions (such as Self-Determined Learning Model of Instruction [SDLMI]). The use of such interventions can lead to significant changes in student goal attainment as well as increased self-advocacy skills. Plus, safety issues are critical to the well-being of the individual; therefore, having the focus person as a participant in this area also provides the opportunity for families and educators to emphasize the importance of safety skills. Sometimes, just having the student present in their IEP meeting is one way to involve them even if it is not ideally an active participation. Every child, even those communicatively limited, has a voice of some kind. The challenge for educators is to ‘listen’ to the child in order for that voice to be heard.

References
Anderson, C., Law, J. K., Daniels, A., Rice, C., Mandella, D. S., Hagopian, L., & Law, P. A. (2012). Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics, 130(5), 870-877. doi: 10.1542/peds.2012-0762

 

Arndt, S. A., Konrad , M., & Test, D. W. (2006). Effects of the self-directed IEP on student participation in planning meetings. Remedial and Special Education, 27(4), 194-207. doi: 10.1177/07419325060270040101

 

Bill of Rights. (n.d.) Retrieved from The Charters of Freedom website, http://www.archives.gov/exhibits/charters/bill_of_rights_transcript.html

 

Centers for Disease Control and Prevention. (2015, February 26). Diagnostic criteria for 299.00 autism spectrum disorder. Retrieved on October 13, 2015, from Center for Disease Control and Prevention website, http://www.cdc.gov/ncbddd/autism/hcp-dsm.html

 

Hagner, D., Kirtz, A., Cloutier, H., Arakelian, C., Brucker, D. L., & May, J. (2012). Outco mes of a family-centered transition process for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 27(1), 42-50. doi: 10.1177/1088357611430841

 

Murphy, Clegg, and Almack. (2011). Constructing adulthood in discussions about the futures of young people with moderate-profound intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 24(1), 61-73. doi: 10.1111/j.1468-3148.2010.00565.x

 

Snyder, E. P. (2002). Teaching students with combined behavioral disorders and mental retardation to lead their own IEP meetings. Behavioral Disorders, 27(4), 340-357.

 

Thoma, C. A., Rogan, P., & Baker, S. R. (2001). Student involvement in transition planning: Unheard voices. Education and Training in Mental Retardation and Developmental Disabilities, 36(1), 16-29.

 

Whitney-Thomas, J., Shaw, D., Honey, K., & Butterworth, J. (1998) Building a future: A study of student participation in person-centered planning. Research and Practice for Persons with Severe Disabilities, 23(2), 119-133. doi:10.2511/rpsd.23.2.119

 

Woods , L. L., Martin, J. E., & Humphrey, M. J. (2013). The difference a year makes: An exploratory self-directed IEP case study. Exceptionality, 21(3), 176-189, doi: 10.1080/09362835.2013.802233