Advocating for Appropriate Educational Services for Students in the United States
Donna M. Owens

Donna M. Owens trained as a special educator and has over 30 years of experience in the field. She has worked as a teacher, administrator, and consultant in education and for mental health, mental retardation and developmental disability agencies. For 15 years she served as an advocate for parents of children with disabilities. She has written articles, training manuals and books for parents to assist them in education advocacy.

There are two laws that address the education of students with special needs. Knowledge of both laws, including their intent and their requirements, will be a help to parents of students with Transverse Myelitis in advocating for appropriate educational services for their children. Both laws provide protection for individuals with disabilities, but they differ in basic intent.

1. Section 504 of the Rehabilitation Act of 1973 was passed to prevent discrimination on the basis of disability; it is civil rights legislation. The nondiscrimination requirements of the law apply to employers and organizations that receive financial assistance from any federal department or agency, including schools. Section 504 forbids the exclusion or denial of services to any individual based on disability. It assures the rights of individuals with disabilities to participate in, and have access to, program benefits and services, including educational services.

Section 504 ensures access to individuals with disabilities through the provision of modifications and accommodations. For years Section 504 was thought of as addressing mainly physical access concerns, such as ramps to and inside school buildings, accessible bathrooms, and elevators inside buildings. Access can also refer to the ability of a student to benefit from an educational program and Section 504 is used to ensure that educational modifications and accommodations are provided for disabled students to allow them to benefit from general education instruction. You can learn more about Section 504 at this website: http://www.hhs.gov/ocr/504.html

2. Individual with Disabilities Education Act (IDEA) was passed in 1975 to ensure that all individuals with disabilities have access to a free and appropriate public education. Research at the time showed that over 50% of students with disabilities were NOT being educated in public schools. The intent of the legislation was to bring those students into the public educational system by providing funding to states and establishing specific guidelines for the provision of special education services.

These two laws differ in intent, as described above. They also differ in the areas of funding, eligibility, procedural safeguards, and enforcement provisions. Section 504 has no specific educational protections for students with disabilities unless the argument can be made that a child is being denied access to an appropriate education that that child’s non-disabled peers receive. IDEA, however, is very prescriptive regarding educational rights of students with disabilities by: listing types of disabilities to be served, enumerating requirements for evaluation procedures and requirements for the development of an individualized educational program, and by conferring specific rights to parents of children with disabilities to enable them to protect their children’s rights. Whereas IDEA is a distinct and whole piece of legislation, Section 504 was one statement included in the Rehabilitation Act of 1973 written to acknowledge the illegality of discrimination on the basis of disability. Therefore, in Section 504 there are no definitions, prescriptions or specified protections.

Funding

No funding is provided with Section 504. Neither states nor programs receive funding for the provision of accommodations or modifications required by the legislation. IDEA does provide funding to states for disbursement to local school districts to support the provision of special education services at the local school district level. Current statistics show that the federal government pays from 10-12% of the cost of special education services provided by local school districts. The funding provided to each state is based on the numbers of students identified under IDEA.

Eligibility

Section 504 does not define “individual with a disability.” It is defined in the regulations developed to implement the Rehabilitation Act. These regulations define a person with a disability as anyone who:

Has a physical or mental impairment which substantially limits one or more major life activities, has a record of such impairment, or is regarded as having such an impairment, AND whose disability substantially limits one or more “major life activities.”

Major life activities include such activities as caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working.

IDEA is specific to public educational services to children and young adults. Consequently, there is an age requirement related to eligibility. All infants and toddlers (up to two years old) “at risk” of disability are eligible under IDEA, although for this population, services include services to parents and families and may be the responsibility of the state’s health department rather than the state’s educational agency. All children three to twenty-one years of age are eligible for special education services, if they have a disability that has an adverse affect on the child’s education. If a state’s law extends the age range for educational services beyond the age of twenty-one, IDEA safeguards follow the state’s age limits.

Under IDEA a child with a disability can be defined as one with mental retardation; a hearing impairment or deafness; a speech or language impairment; a visual impairment, including blindness; emotional disturbance; an orthopedic impairment; autism; traumatic brain injury; an other health impairment; a specific learning disability; deaf- blindness or multiple disabilities. All IDEA students are eligible under Section 504, but not all Section 504 students meet the eligibility requirements under IDEA.

Procedures

As mentioned above, procedures governing Section 504 are drawn from the Code of Federal Regulations (CFR) which is prepared by federal employees after the passage of any legislation to guide its implementation. Procedural requirements for Section 504 are established in the CFR, including the definition of persons eligible, the definition of major life activities, identification of the responsible agency, and requirements for making a claim under the law.

According to the CFR, all school districts are required to appoint a 504 Coordinator who has the responsibility for ensuring the district’s compliance with the legislation. Districts can develop their own procedures in alignment with the CFR for implementing Section 504, or districts can choose to use procedures outlined in IDEA which would meet those requirements. This means that 504 procedures can be different from school district to school district. It is important to identify your school district’s 504 Coordinator and to request a copy of the district’s 504 procedures.

IDEA legislation, unlike Section 504, is very prescriptive. The law itself includes a number of fundamental concepts and procedural requirements that parents need to know. First is the zero-reject principle, meaning all students have a right to a free and appropriate education (FAPE). A student cannot be too disabled or service provision too costly to relieve a school district from the responsibility of educating that student appropriately.

Note that a school district is not required to provide the best or ideal education for a student, but an appropriate education. The word appropriate can become a matter of discussion between parents and school district personnel and the courts have been called upon to define appropriate. According to the courts, a child’s educational program must provide educational benefit, and the appropriate level of benefit must be determined on a case-by-case basis.

Another fundamental concept reflected in IDEA is the Least Restrictive Environment (LRE). This refers to the place where a student receives his/her educational program. At one point in time it was almost understood that students with disabilities needed separate classrooms. Most students were segregated from their nondisabled peers and educated in self-contained classrooms by disability, i.e., students with visual impairments, students with hearing impairments, students with mental retardation, and students with physical disabilities, also referred to as orthopedically handicapped or multi-handicapped. The segregation of students with disabilities was never the intent of IDEA. In fact, the legislation stated from the beginning that students should be educated with their nondisabled peers and provided with the necessary supplementary aides and services to address their unique needs.

During the past ten to fifteen years, there has been an effort to address concerns regarding perceptions and treatment of students with disabilities. Students with disabilities are now considered as students first and students with disabilities second, reversing the trend toward special schools and segregated programs. Another educational trend supporting the inclusion of students with disabilities in regular education classes has been standards-based education, with the assumption that all students can achieve. Students who are separated from the mainstream are less likely to be given access to the same curriculum as those students in regular class, and therefore are prevented from achieving at the same level as their nondisabled peers. Specially designed instruction and supplementary aides and services should be implemented according to the needs of the student with a disability to allow them access to and to benefit from the regular curriculum. The federal government has further mandated through IDEA that the achievement scores of students with disabilities be tracked and reported to ensure that districts are indeed providing IDEA students with an appropriate education aligned with the state-adopted standards.

“Individualized” is the watchword of IDEA. In general, educators approach the teaching of students in groups. Teachers are given responsibility for particular classes and subjects. IDEA, however, requires that each student be considered individually in regard to their strengths and needs, and that an educational program be developed specifically for the individual student. This program is called the Individual Educational Plan (IEP). This plan outlines the school’s service plan for the student for each year.

Another fundamental concept under IDEA is parent participation. School districts are required to seek out the participation of parents of students with disabilities in planning a child’s educational program. The concept is so important in the legislation that districts are required to document their attempts to involve parents in the discussion of their child’s individual educational program. Parents must be given notice and give consent if the school wants to evaluate their child for special education services under IDEA. And once a special education program is developed and agreed to by the school and the parents, parents must be notified if there is a significant change in the program.

One important aspect of the procedures mandated under IDEA is the multi-factored evaluation, referred to as the MFE. There are two purposes for the MFE: 1) to determine eligibility for services under IDEA, and 2) to determine the child’s strengths and needs to guide the development of the IEP.

The MFE must:

• involve a variety of assessment tools (not just an IQ test),
• be administered by a qualified person(s) using validated tests,
• be conducted by more than one person, or a multidisciplinary team (for example, the school psychologist, the teacher, and related service personnel), and
• address all areas of suspected disability.

IDEA also allows for parents to receive a separate, independent evaluation, at no cost, if they disagree with the results of the initial MFE. Based on the results of the MFE, the IEP team determines the special education services to be provided to the student.

IEPs must be developed each year and must include:

• a statement of the student’s present levels of performance,
• annual goals and objectives or benchmarks,
• a statement of the services and accommodations to be provided to the child,
• explanation of the extent to which the child will participate with nondisabled children,
• special education services to be provided (special education is defined as specially designed instruction), and
• modifications for state testing.

This IEP is developed by a team consisting of:

• the teacher(s) of the student, both regular education and special education,
• a person knowledgeable about the student’s evaluation results,
• a school district representative who can speak to the resources of the district,
• related service personnel working with the student,
• the parents,
• the student, when appropriate, and
• anyone knowledgeable about the student selected by the school or the parents.

There are procedural safeguards outlined in the IDEA legislation that are directed specifically at parents. According to IDEA, parents must be provided with a copy of these safeguards, including:

• prior written notice about any changes to the IEP,
• parental consent for evaluation,
• an independent evaluation,
• access to educational records,
• opportunity to present complaints,
• mediation, and
• an impartial due process hearing, if complaints cannot be resolved.

When You Have a Concern

There are steps parents should follow when they disagree with their child’s IEP as written, or when they question the appropriate implementation of the IEP. These progressive steps are as follows:

• Discuss the concern with the child’s teacher;
• Request a Case Conference with the IEP team to review the issue;
• Request an Administrative Review;
• Request an Impartial Due Process Hearing.

When parents have concerns about their child’s educational program, they should first talk to their child’s teacher. If their concern is not addressed, parents should request a case conference with the entire IEP team to discuss their concern. This request should be in writing and should state the parent’s concern. It should be sent to the principal of the child’s school.

If as a result of the case conference the concern is not addressed and resolved, then the parents can request, in writing, an administrative review. This request should be sent to the school principal. The special education director and the district Superintendent may be copied on this request. A copy of the letter should be kept for your files. This meeting will include the district Superintendent, or designee, and allows the district to review the information regarding the complaint and allows the district the opportunity to address the complaint to the parent’s satisfaction.

At this point, if the parents and the school cannot agree, parents have two choices. They can file a formal complaint with the state department of education. This is done by stating the complaint and your contact information in a letter addressed to the State Director of Special Education. You can find the name of the director and his/her address by calling your State Department of Education or by checking their website. By law, this action requires the state to investigate the complaint and make a determination on the issue within a specified period of time (60 days is common). The second option is for the parents to file a request for an impartial due process hearing.

Impartial Due Process Hearing

 To resolve conflicts as expeditiously as possible, IDEA requires states to make mediation available to parents and schools when disagreements occur. Mediation must be offered to parents who file for an Impartial Due Process Hearing, and, in fact, mediation can be offered by the school even before a request for a due process hearing is filed. Still, parents always retain the right to an impartial due process hearing to resolve their complaint. All problems are best solved close to the source, and it is advisable for parents to work their way up the system in addressing their disagreements with the school.

There is a great deal of help available to parents in obtaining information about the implementation of IDEA. This includes national, state and local parent and disability organizations, books, magazines and websites. IDEA provides funding for Parent Training and Information Centers in each state specifically designed to support the effort of informing parents about their rights. The following website provides a list with contact information for the parent training and information centers located in each state.

www.pacer.org

The mission of PACER Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.

 Through its ALLIANCE and other national projects, PACER, a national center, responds to thousands of parents and professionals each year. From California to Minnesota to New York, PACER resources make a difference in the lives of 6.5 million children with disabilities nationwide.

 You can also get the name and telephone number of the center in your state by asking your school district or your state department of education. These centers are great sources of information for parents of children with disabilities. You can get printed information, notices about training on IDEA, and individualized technical assistance with a phone call to your state’s center.

There are a number of other national and local organizations that provide parent information and advocacy services. These include disability-specific organizations, such as United Cerebral Palsy (UCP), the ARC, and Down’s Syndrome Association. Parents of children with disabilities are uncommonly generous when it comes to providing support to other parents. You don’t have to talk to someone who has a child with the same disability as your child. The law is not disability specific. In addition, there are local support groups created by parents for parents of children with disabilities where parents can learn from the experiences of others.

Communication Tips

 Knowing the law is a critical aspect of advocating for appropriate services for your child with a disability. Knowing good communication techniques is another. Remember that there are a number of factors that can affect your communication with school personnel. So, expect and be prepared to address these issues.

Group size and familiarity with those in the group

As a parent, or one of two parents, it is likely that school personnel will outnumber you in IEP meetings. Also, remember that IEP meetings are held at school, a place where educators are comfortable, but where you will likely feel less comfortable, especially if you have some negative feelings about what is happening (or not happening) at school.

Lack of common experience

Educators know the workings of the school and how things are done. Unless you are also an educator, you don’t have the value of that experience. This lack of common experience can be a barrier to good communication in any setting or context.

Listener’s preoccupations and speaker’s assumptions

These factors can affect what you communicate and what you think is being communicated to you. You can believe that you’ve stated your case clearly, because your case is so clear to you, but your perception of what you have communicated may not be accurate, and on the other hand, your own assumptions about what you will hear, may affect your perception of what has been communicated to you.

Be aware that clear communication requires care and attention, and not just from you, as parents, but also on the part of the team members you find yourself working with. Give attention to clarifying what is being communicated to you. When you are speaking, check your audience for signs that they understand your message.

Here are some tips to ensure clear communication:

• Take a friend with you to IEP meetings, someone you trust who can be another pair of ears that you can check your perceptions with later, someone who can help you clarify what your concerns are when they sense that the message is not being heard.
• Listen for the content of the message and paraphrase the message back to the speaker: “So what you’re saying is….”
• Attend to the speaker’s body language and factor that in to your understanding of the message being communicated.
• Check your perceptions: “It looks like you’re nervous about including Libby in the 4th grade science class…?”
• Give I messages: “I’m concerned because you say Jeff will have support in completing his work in class, but I haven’t heard what support that will be or how it will be provided, or who will provide it.”
• Give feedback: “I was worried when I came today because I didn’t think you understood how important it is that Laura stay with her class as much as possible throughout the day, but your response has shown me that you do understand.” Or “I was worried when you said that individual OT would be limited, but I do understand how Adam’s needs for OT can be met in the classroom setting.”

There are some common mistakes parents can make in advocating for services for their child:

• Focusing on minor procedural issues, and thinking that “this is the moral equivalent of war.” This is not war; this is a process of working with a system to bring about change that will have a positive impact on your child’s educational program.
• Being too trusting of educators --assuming they will always do what’s best. This issue of trust is a balance. You should be involved and aware, but also vocal about what you know your child needs to succeed.
• Assuming an all or nothing approach, expecting instant change and becoming angry and vengeful when this does not happen. It does take time to create and support change.
• Not understanding that sometimes educators need to be educated by parents about their child. Education takes time and credible information delivered in a way that the listener can hear it.
• Not even trying programs or services that are suggested by educators, assuming that you know the only way a change for the better can occur.
• Trying to “micro-manage” every event during the school day. Choose the issues that are most critical and focus there.
• Not responding in a timely manner to a proposed IEP. Educators are required by law to develop IEPs for students and not providing them with feedback leaves school personnel in the dark about what your concerns and preferences are. This would be the same as an educator ignoring a letter that you write trying to explain your concerns about an issue.
• Not documenting conversations and meetings with educators regarding issues of concern. Keep a notebook and refer to it: “When we met on the 31st, you said that Scott would have an aide for physical education class, but that hasn’t happened.”

Remember that clear communication can make the difference between an IEP team that wants to work with you and one that doesn’t know how to respond. Educators are a part of a system that is operated by rules and regulations, and they are bound by their contracts to follow those rules. Here are some things to remember about communication with systems:

Learn the system’s rules.

• Seek out the system’s resources to help with learning the rules, such as websites and publications.
• Always communicate on paper; date and keep a copy of your correspondence for your own records.
• Follow appeal procedures when agreements cannot be reached.
• Remember that expressions of anger are unproductive. Use your energy to learn more and to plan your next step.

School systems, and the people in them, want to provide the best programs and services they can for their students. Assume that your child’s educators have good intentions -- they do. Educators work under constraints of limited resources, fiscal and human, training and time. A part of a parent’s job is to find out what the educators serving their son or daughter need, and work with them to obtain it. While you may have different perspectives -- the parent’s and the professional’s --the law is designed to include both for the benefit of the student. There really is only one team; try to be a good team member.