Improving Special Education Documentation to Enhance Parent Understanding
Volume 44 Issue 1
By Laura Kerry-Henkel & Katie Eklund
Parental involvement is an essential component of promoting successful students and schools. Increased parental involvement in school systems has been positively correlated with academic achievement, school climate, and positive postschool outcomes in both general and special education contexts (Becker & Luthar, 2002; Hornby & Lafaele, 2011; Spann, Kohler, & Sorenson, 2003). Parental involvement includes not only inviting parents to participate in meetings and events, but also ensuring that parents are active participants in each aspect of the school community.
A unique aspect of special education is the mandate for parent involvement. The Individuals with Disabilities Education Act of 1990 (IDEA) and its reauthorization in 2004 require professionals to involve parents of students with disabilities in the educational decision-making process. Whether the student is engaged in initial assessment procedures for special education eligibility or is currently being served as a student with special needs, schools are required to involve parents throughout each step of the process. IDEA has specifically validated an emerging role for parents as collaborators, where families are expected to be "equal and full partners with educators and school systems" (Turnbull & Turnbull, 1998, p. 265). From assessment and eligibility, to program placement and learning goals, the policy recommends that school professionals not only inform parents of their rights, but also incorporate parents' knowledge of their child in the special education process.
Current research has identified a number of barriers that have made meaningful parental involvement difficult. Cultural insensitivity, linguistic differences, race, and socioeconomic issues have all been shown to affect parents' levels of trust and involvement in the schools (Banks, 2004; Peña, 2000; Salas, 2004). Additional obstacles to collaboration have included scheduling meetings at times that are inconvenient for parents, professionals making little effort to seek parental input when making decisions about a student's education, and English-only materials being provided to non-English speaking families (Harry, Allen, & McLaughlin, 1995; Linan- Thompson & Jean, 1997; Weiss & Coyne, 1997). The paperwork generated during special education procedures has also created a significant barrier to effective parental involvement. The sheer amount of printed materials, along with unfamiliar vocabulary, densely written forms, and high readability levels, can overwhelm parents and contribute to a sense of frustration with the process of obtaining support for their child (Fish, 2008). This paper seeks to clarify reasons why materials produced through the special education process may be limiting parental involvement and to identify strategies to improve access to such materials for parents of students in special education.
Special Education Documentation
A typical special education referral, evaluation, and determination of eligibility for a specific learning disability may easily contain more than 50 pages of printed material that is required by law to be provided to parents.
- Prereferral intervention report ................................................... 3 pages
- Permission for evaluation .......................................................... 1-3
- Procedural safeguards ................................................................ 10-15
- Prior written notice ................................................................... 1-2
- Multidisciplinary evaluation team report ....................................... 5-10
- Psychological evaluation report ................................................... 5-10
- Educational evaluation report ..................................................... 3-5
- Additional evaluation reports from related service providers ........... 3-10
- Individualized Education Program ................................................ 10-20
According to IDEA (2004), the IEP alone must contain information that includes present levels of academic performance, a statement of measureable goals, a description of how progress will be measured, a list of related services or supplemental aids, a statement of program modifications to be provided by school personnel, the extent to which a child will be educated with nondisabled children, a statement of required accommodations, and specific information about how and when services will be implemented. A second mandated document is a statement of procedural safeguards, many of which are found to be 15 pages or more. For example, the model procedural safeguards form provided by the U.S. Department of Education's Office of Special Education website is more than 40 pages in length (Office of Special Education Programs, 2006).
From the initial steps of referral to special education, to each subsequent phase of plan implementation, the amount of required paperwork can be overwhelming for many parents. Not only does the amount of paperwork serve as a deterrent, but the actual readability of special education documentation has presented an additional barrier as these materials have been found to range from fifth grade reading levels to postcollege readability (Fitzgerald & Watkins, 2006; Gomez Mandic, Rudd, Hehir, & Acevedo-Garcia, 2012; Lo, 2014; Pizur-Barnekow, Patrick, Rhyner, Folk, & Anderson, 2010). Given that over one third of Americans have basic or below-basic reading abilities (National Assessment of Adult Literacy, 2003), the elevated reading level found in special education documentation is potentially problematic. In addition, the genetic and environmental links among learning difficulties in families have been well-established (Snowling, Muter, & Carroll, 2007), pointing to the increased possibility that parents of children with reading difficulties are likely to experience similar difficulties themselves.
Written prior notice (§.403)
The early intervention program must give you advance written information about any evaluations, services, or other actions affecting your child. Parents know their children best. The information you share with us will make sure that the evaluations and services are right for you. The "paper work" assures that you get all the details before any activity.
Use of parent's native language or preferred mode of communication (§§.401 and .403)
It is your right to thoroughly understand all activities and written records about your child. If you prefer another language or way of communicating [explain relevant option, such as braille, sign language, etc.], we will get an interpreter [use your mode of communicating], if at all possible. The early intervention program wants you to understand so that you can be an informed team member and decision maker.
Parent consent (§.404)
The early intervention program needs your permission to take any actions that affect your child. You will be asked to give your consent in writing before we evaluate or provide services. Be sure you completely understand the suggested activities. By being involved, you can help the early intervention program plan services that match your family's preferences and needs. The early intervention program needs to explain what happens if you give your consent and if you do not give your consent.
Confidentiality and release of information (§§.401-404)
The early intervention program values the information you and other service and healthcare providers have learned about your child. We will ask others for this information, but we need your written permission to do so. Just as the early intervention program needs your permission to get your child's records from other providers, the records that the early intervention program will develop will not be shared with anyone unless you give your permission.
Examine records (§.402)
The early intervention record is your family's record. You can see anything in the early intervention program's records about your child and family. If you do not understand the way records are written, the information in the child's record will be explained to you in a way you understand. You are a team member and we want you to have the same information as other team members.
Accept or decline services without jeopardy (§.405)
With the other members of your child's early intervention team, you will consider which services can best help you accomplish the outcomes that you want for your child and family. You will be asked to give your consent for those services that you want. You do not have to agree to all services recommended. You can say no to some services and still get the services that you do want. If you decide to try other services at a later date, you can give your consent then.
If you and the early intervention team do not agree on plans or services, or if you have other complaints about your experience with the program, there are procedures for resolving your concerns quickly. When informal ways of sharing your concerns don't work, you may submit a written request for a due process hearing. Mediation will be offered as a voluntary first step. A trained, impartial mediator will facilitate problem-solving between you and the early intervention program. You may be able to reach an agreement that satisfies you both. If not, you can go ahead with a due process hearing to resolve your complaint. Mediation will not slow down the hearing process. Some locations offer mediation before a formal complaint is filed.
Due process procedures (§.420)
A due process hearing is a formal procedure that begins with a written request for a due process hearing. The hearing will assure that a knowledgeable and impartial person, from outside the program, hears your complaint and decides how best to resolve it. The early intervention program recognizes you right to make decisions about your child and will take your concerns seriously. You are given a copy of regulations that describe all these rights and procedures in detail, because it is important that you understand. If you have questions, call _______________________.
Note. Reprinted with permission from Hurth & Goff, 2002. Bold type: Section headings from regulations. Narrative: Sample of language that might be used by an early intervention system to explain implications of regulations to families.
Tools for Change
Increasing readability. Readability has been described as "the interactions that affect the successful use of the material, including the ability to understand the imparted information, read the information at optimal speed, and find the information of interest" (Dale & Chall, 1948, as cited in Pizur-Barnekow et al., 2011, p. 59). The readability of special education written materials is critical for parents and other caregivers. If parents can't read or fully comprehend the information that comes with entry into the special education system, they may not understand important procedures and rights, such as consent for testing, eligibility determination, and special education placement. If parents do not have adequate reading skills, they may not be aware of the nature of the student's disability or understand how the disability may impact important educational outcomes. Parents may also miss important changes to a child's educational placement or program. These barriers have important implications. If parents do not know their rights because they are unable to read them, they may not understand that they have an equal voice in all stages of the special education process, including eligibility, educational placement, creation of goals and objectives, description of the student's strengths and weaknesses, and postschool options.
A number of professional fields, including medicine and law, have adapted written materials to be appropriate for their intended audiences. Specifically, the medical field has modified written materials to become more user friendly for patients by making improvements in readability, length, organization, layout, illustrations, and other graphic supports (Hoffman & Worrall, 2004; Morgaine, Carter, Meldrum, & Cullinan, 2015). One study examining informed consent documents in a pediatric medical setting found that reducing length, increasing the use of graphics such as tables, and reducing the reading grade level significantly increased parents' understanding of these materials (Tait, Voepel-Lewis, Nair, Narisetty, & Fagerlin, 2013). The field of special education can apply similar changes by assessing the length and complexity of written materials provided to parents and school staff.
Plain language. The plain language movement started in the 1960s when consumer advocacy groups began encouraging the federal government and local businesses to provide understandable documents to the public (Petelin, 2010). There have been several organizations that have since formed to address the needs of the public in terms of accessibility to written materials. One of these organizations is the Plain Language Action and Information Network (PLAIN), which was first established in the mid-1990s by a group of federal employees to advocate for the use of clear, concise, and jargon-free writing in public documents. Plain language is described as "communication your audience can understand the first time they read or hear it... Written material is in plain language if your audience can find what they need, understand what they find, and use what they find to meet their needs" (PLAIN, 2012; p. 1). Recommendations for implementation of plain language include logical organization, writing in an active voice, addressing the reader directly, using short sentences and less complex words, and including design features that make the document easier to understand.
Universal design and technology. Universal design originated in the field of architecture in the 1970s to address the logistical needs of persons with disabilities by making buildings accessible, with the goal of increasing access and usability for all persons (King-Sears, 2009). Universal design for learning (UDL), an offshoot of universal design, highlights three key components of learning and accessibility including multiple means of representation, expression, and engagement (McGuire, Scott, & Shaw, 2006). These principles can be applied to the design and creation of special education documents for parents. Multiple means of representation and engagement can be applied to written materials by considering text readability and length; the layout and organization of documents; as well as the use of pictures, graphs, illustrations, and other visual supports.
In addition, emerging technologies hold much promise for improving how schools communicate with parents (Olmstead, 2013). For example, technology can improve the accessibility and transference of specific information about special education through videos and PowerPoint presentations that explain the special education process and via infographics that illustrate the IEP process. Smartphone and tablet applications (apps) can be used to help both teachers and parents plan for IEP meetings. These formats use plain language and universal design tenets, with a goal of enhancing parental access to information by modifying readability and formatting.
Improving Special Education Documents
As previously noted, the amount of printed material and procedural documentation provided to parents throughout the special education process can be overwhelming. Written materials provided in assessment and eligibility determination for special education include, but are not limited to meeting invitations, parental right documentation, descriptions of due process, evaluation reports, and the Individualized Education Program (IEP). A number of recommendations have been made to increase the successful use of printed materials in special education, including making changes in both the actual text and the overall design of the materials provided (Fitzgerald & Watkins, 2006; Lo, 2014; Pizur-Barnekow et al., 2010). Fortunately, several state departments of education as well as parent advocacy groups have made such adjustments to increase parent comprehension of the special education process (see Resources section). The following suggestions are offered as best practice considerations for schools, districts, or states considering modifications to written materials.
Simplify your writing. This could include using an active, conversational writing style and shorter sentences. IDEA 2004 requires that parents' rights "be written in an easily understandable manner" (Fitzgerald & Watkins, 2006, p. 507). Materials should be written no higher than a fifth-grade reading level and provided to parents in their native language. Lo (2014) recommends utilization of common software applications, such as the "show readability statistics" function on Microsoft Word, to examine readability levels of preexisting forms and documents.
Use graphic organizers. Graphic organizers can be used to increase structure in documents, provide a logical sequence for parents, and help the reader focus on salient points. Elements of strong organization within written materials could include liberal use of headings, bullet points, easy to read fonts, and a clear, simple layout. It can be helpful to include documents that use a question and answer format, highlighting common questions that may arise from each step of the special education process. Complementing text with illustrations or pictures may also increase parent engagement and comprehension.
- test for a possible disability
- change your child's educational services
Limit jargon. As the use of jargon and acronyms is a frequent complaint of parents in the special education process (e.g., Fish, 2008; Hurth & Goff, 2002; Salas, 2004), professional jargon should be minimized. If jargon or acronyms must be used, they should be accompanied by a user-friendly glossary of terms.
Reformat procedural safeguards. Many states require procedural safeguards to be offered to parents from the first invitation. It may be more effective to provide a one-page overview outlining parents' rights into five or six general categories (e.g., consent, language and preferred forms of communication, confidentiality, examining records, the right to procedures for resolving complaints). See page 17 for an example of such an outline. A second example of how to modify a typical procedural safeguards passage into a simplified, easy to read document is found in the sidebar below. Moving from a dense, formally composed document into a succinct and informative document provides parents with key points highlighting only the most salient information. Similar to modifications to informed consent documents in the medical field, procedural safeguards should be written no higher than a fifth-grade reading level.
Consider creating guidance documents. Helpful take-home documents can be a part of the literature provided to parents. Parents have been found to respond positively to special education informational documents and worksheets that are included in a handbook that guides them through the process, facilitating their ability to ask questions and otherwise contribute to the team (Hurth & Goff, 2002). This can include a list questions to consider during an evaluation or IEP meeting, basic school and district information, phone numbers, and important dates. The school may also want to consider providing a sheet of resources for parents to better understand their rights and the special education process. The Resources section provides examples of online resources that could be provided to parents seeking additional information on the special education process.
Due to the dearth of empirical research in this area, future investigations should explore how IEPs and evaluation reports can be made more user-friendly while also encompassing all legal and ethical guidelines required by IDEA and other governing authorities. Future research should also explore the impact revised and improved written materials may have on parent involvement and parent perceptions of their role as team members in the special education process. It has also been suggested that local education agencies be provided with resources from state educational departments to create user-friendly and accessible special education documents (Gomez Mandic et al., 2012). These actions may increase the availability of such materials throughout the country and encourage parental participation that matches the true intent of the law. Being mindful of the impact of document readability, organization, and key messages for parents should be a prime consideration for general and special education professionals who desire to actively engage parents.
It has been well established that the climate of a school can have a direct impact on parental involvement. A school that welcomes parents, encourages participation, and provides user-friendly information and other supports will derive numerous benefits from increased parental involvement, including improved student achievement (Hoover-Dempsey et al., 2005; Hornby & Lafaele, 2011). In the area of special education, schools can make improvements in how they interact with and engage parents, including becoming more welcoming towards parents of students who may be struggling in the school environment. Improving the readability of special education documents is one way that we can improve relationships with parents by providing increased access and inclusion in special education decision-making and procedures.
Banks, S. (2004). Voices of tribal parents and caregivers of children with special needs. Multiple Voices for Ethnically Diverse Exceptional Learners, 7(2), 33-47.
Becker, B.E., & Luthar, S.S., (2002). Social-emotional factors affective achievement outcomes among disadvantaged students: Closing the achievement gap. Education Psychologist, 37(4), 197-214.
Fish, W. W. (2008). The IEP meeting: Perceptions of parents of students who receive special education services. Preventing School Failure, 53(1), 8-14. doi:10.3200/PSFL.53.1.8-14
Fitzgerald, J. L., & Watkins, M. W. (2006). Parents' rights in special education: The readability of procedural safeguards.Exceptional Children, 72(4), 497-510.
Gomez Mandic, C., Rudd, R., Hehir, T., & Acevedo-Garcia, D. (2012). Readability of special education procedural safeguards. Journal of Special Education, 45(4), 195-203. doi:10.1177/0022466910362774
Harry, B., Allen, N., & McLaughlin, M. (1995). Communication versus compliance: African- American parents' involvement in special education. Exceptional Children, 61, 364-377.
Hoffmann, T., & Worrall, L. (2004). Designing effective written health education materials: Considerations for health professionals. Disability & Rehabilitation, 26(19), 1166-1173.
Hoover-Dempsey, K. V., Walker, J. M. T., Sandler, H. M., Whetsel, D., Green, C. L., Wilkins, A. S., & Closson, K. (2005). Why do parents become involved? Research findings and implications. Elementary School Journal, 106(2), 105. doi:10.1086/499194
Hornby, G., & Lafaele, R. (2011). Barriers to parental involvement in education: An explanatory model. Educational Review, 63(1), 37-52. doi:10.1080/00131911.2010.488049
Hurth, J. L., & Goff, P. E. (2002). Assuring the family's role on the early intervention team: Explaining rights and safeguards (2nd ed.), National Early Childhood Technical Assistance Center. Retrieved fromhttp://www.nectac.org/~pdfs/pubs/assuring.pdf
Individuals with Disabilities Education Act, 20 U.S.C. §1400 (1990).Individuals with Disabilities Education Improvement Act, 20 U.S.C. §1400 (2004).
King-Sears, M. (2009). Universal design for learning: Technology and pedagogy. Learning Disability Quarterly, 32(4), 199-201.
Linan-Thompson, S., & Jean, R. (1997). Completing the parent participation puzzle: Accepting diversity. Teaching Exceptional Children, 3, 46-50.Lo, L. (2014). Readability of individualized education programs. Preventing School Failure, 58(2), 96-102
McGuire, J. M., Scott, S. S., & Shaw, S. F. (2006). Universal design and its applications in educational environments.Remedial and Special Education, 27(3), 166-175.
Morgaine, K. C., Carter, A. S., Meldrum, A. M., & Cullinan, M. P. (2015). Design of an oral health information brochure for at-risk individuals. Health Education Journal, 74(1), 60-73.National Assessment of Adult Literacy. (2003). United States Department of Education, National Center for Education Statistics. Retrieved from http://nces.ed.gov/NAAL/kf_demographics.asp
Office of Special Education Programs. (2006). IDEA Regulations: Individualized Education Program. United States Department of Education, Retrieved from http://www2.ed.gov/policy/speced/guid/idea/modelformsafeguards.pdf
Olmstead, C. (2013). Using technology to increase parent involvement in schools. Tech-Trends: Linking Research & Practice to Improve Learning, 57(6), 28-37.
Peña, D. C. (2000). Parent involvement: Influencing factors and implications. Journal of Educational Research, 94(1), 42-54.
Petelin, R. (2010). Considering plain language: Issues and initiatives. Corporate Communications: An International Journal, 15(2), 205-216.
Pizur-Barnekow, K., Patrick, T., Rhyner, P. M., Folk, L., & Anderson, K. (2010). Readability levels of individualized family service plans. Physical & Occupational Therapy in Pediatrics, 30(3), 248-258. doi:10.3109/01942631003780869
Plain Language Action and Information Network. (2012). What is plain language? Retrieved fromhttp://www.plainlanguage.gov/whatisPL/index.cfm
Salas, L. (2004). Individualized educational plan (IEP) meetings and Mexican American parents: Let's talk about it. Journal of Latinos and Education, 3(3), 181-192.
Snowling, M. J., Muter, V., & Carroll, J. (2007). Children at family risk of dyslexia: A follow-up in early adolescence.Journal of Child Psychology and Psychiatry, 48, 609-618.
Spann, S. J., Kohler, F. W., & Soenksen, D. (2003). Examining parents' involvement in and perceptions of special education services: An interview with families in a parent support group. Focus on Autism and Other Developmental Disabilities, 18(4), 228-237. doi:10.1177/10883576030180040401
Tait, A., Voepel-Lewis, T., Nair, V., Narisetty, N., & Fagerlin, A. (2013). Informing the uninformed: Optimizing the consent message using a fractional factorial design. JAMA Pediatrics, 167(7), 640-646. doi:10.1001/jamapediatrics.2013.1385
Turnbull, H. R., & Turnbull, A. P. (1998). Free appropriate public education: The law and children with disabilities, (5th ed.), Denver, CO: Love Publishing.
Weiss, B. D., & Coyne. C. (1997). Communicating with patients who cannot read. The New England Journal of Medicine, 337, 272-274.
National Center for Learning Disbailities
- Parent information video: What is Special Education? (https://www.understood.org/en/school-learning/special-services/special-education-basics/video-a-crash-course-on-special-education)
- Infographic: At a Glance: Your Rights in the IEP Process (https://www.understood.org/en/school-learning/your-childs-rights/basics-about-childs-rights/at-a-glance-your-rights-in-the-iep-process)
- Infographic: At a Glance: Your Rights in the 504 Plan Process (https://www.understood.org/en/school-learning/your-childs-rights/basics-about-childs-rights/at-a-glance-yourrights-in-the-504-plan-process)
Pacer Center & the Minnesota Parent Training and Information Center
- Parent information video: Special Education: What Do Parents Need to Know? (http://www.pacer.org/flashplayer/?video=WhatIsSE.flv)
- Parent information video: Preparing for Your First Evaluation Planning Meeting for Your Child (http://www.pacer.org/parent/videostrainings.asp)
- Additional parent resources: Top 10 Topics: Parents Concerns and Matching Resources (http://www.pacer.org/parent/top10-parentconcerns.asp)
The Parent Educational Advocacy Training Center
- PowerPoint for parents: Special Education Tour (http://www.peatc.org/peatc.cgim?template=special_education)
- App: IEP Checklist (http://www.peatc.org/peatc.cgim?template=IEPChecklistiPhone)
Advocates for Children of New Jersey. A Basic Guide to Special Educationhttp://acnj.org/downloads/2014_07_09_a_basic_guide_to_special_education.pdf
Pacer Center. A large selection of handouts, including some with audio supporthttp://www.pacer.org/publications/specedrights.asp
Parents Reaching Out (New Mexico)
- Acronyms, Abbreviations, and Definitions http://parentsreachingout.org/cd/pdfs_en/comacro.pdf
- The Handbook: Parental Rights & Special Education Procedureshttp://parentsreachingout.org/cd/pdfs_en/sehandbook.pdf
- Let's Begin the Journey: An Overview of Special Education and the IEP Processhttp://parentsreachingout.org/cd/pdfs_en/sebeginj.pdf
The Wisconsin Statewide Parent-Educator Initiative. An Introduction to Special Educationhttp://sped.dpi.wi.gov/files/sped/pdf/intro-se.pdf
Laura Kerry-Henkel is a school psychology doctoral student at the University of Arizona. Katie Eklund, PhD, NCSP, is an assistant professor at the University of Arizona