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Developing an IEP
By Brian Denger, Parent Advocate Coordinator
Parents of a boy with Duchenne muscular dystrophy attending school naturally want him to have the same opportunities and choices as his peers. As physical ability is lost, it becomes increasingly more difficult for a boy with Duchenne to perform many activities and the need for assistance will increase. There may also be learning deficiencies or speech impediments that require specialized programs. Many parents are unaware that help is available for their sons or are unsure of how to navigate the process for obtaining services. While parents want their children to succeed, without the proper tools and guidance many will struggle and not receive an appropriate education.
This discussion will provide a broad overview of the process under federal special education and civil rights laws for obtaining special education and related services or accommodations to ensure access to school and how these services can apply to boys with Duchenne. Along the way you will find links to more in-depth information on essential topics imbedded in the text. You should take this discussion as an introduction to some of the basic principles and procedures that will come up as you seek services for your child and treat it as a ramp into more detailed and sophisticated information you can find in other locations. As you review this discussion you should keep in mind that individual states have additional rules for Special Education and that the laws governing these issues at both the state and federal levels can change significantly from time to time. (At the time of preparing this article, for example, you should know that IDEA, the federal special education law, was extensively revised recently, with the new changes scheduled to come into place in July 2005.) To help broaden your understanding of the issues we cover and to help you keep up to date with the changing landscape of special education and discrimination law, the IEP Glossary & Resources Section has links to a variety of topics and resources that can not be fully covered in this discussion.
A boy with Duchenne may only need assistance with physical activities and access or he may require accommodations and modifications that help him complete regular assignments or standardized tests, or develop speech and language skills or developmental skills, or he may need specialized instruction to address learning disabilities. Spending time to learn what services and supports may be available to benefit your son and how best to use the process to obtain those services and supports will help lessen any anxiety you may have and provide you the confidence and know-how to help your son prepare for the future. Becoming an effective advocate for your son takes time, patience and skill. Resources are available to help you to develop an understanding of special education and disability discrimination laws and to work effectively with your son's school. This discussion is not intended as a substitute for appropriate legal advice. Legal concerns are best handled by an attorney familiar in special education and disability law.
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When a school aged child has a "disability" that undermines his educational performance and requires specialized teaching methods to make effective progress, schools are required under federal law to provide appropriate supports and special education services tailored to his specific needs. Commonly referred to as "IDEA," the Individuals with Disabilities in Education Act, was written to ensure that children with disabilities are able to receive "FAPE" - a free and appropriate public education - in the "least restrictive appropriate environment" ("LRE") - the context where a child can participate as much as possible with his non-disabled peers.
Under a separate civil rights law known as "Section 504," accommodations must also be made for students when a disability restricts access to activities and programs available to their able-bodied peers Section 504 of the Rehabilitation Act prohibits excluding a child from participation in activities available to his non-disabled peers because of his disability when, with reasonable accommodations, he would be capable of participating with those peers.
A child with Duchenne may qualify for accommodations, special education services, and/or supports under these laws. Disabilities covered by IDEA include "severe orthopedic impairments" that "adversely affect a child's educational performance." Thus, a child may have a "disability" in the ordinary meaning of that word, but if that disability does not somehow "adversely affect educational performance" he may not be eligible for special education services. He may, however, still be eligible for accommodations and services that enable him to access the school building and its classes and activities under Section 504.
Services may be provided for infants and toddlers and preschool age children with disabilities under IDEA. Referred to as Part B and Part C, these services are designed to prepare a child for school and to determine what services and supports are necessary to assist the child when he begins school. Each state provides support through Early Intervention programs based on its definition of developmental disability and eligibility rules and requirements. A list of contacts for your state is provided in the resources section.
IDEA basics: the IEP Team is the engine that drives the process
For a child who is eligible for special education services under IDEA, schools must implement a program of supports and special education services based on his unique needs so he may benefit from the curriculum. An IEP Team meeting is convened to design this program. Schools in different states may use the term PET (Pupil Evaluation Team) Team, IEP (Individual Education Program) Team, MDT (Multi Disciplinary Team), or ARD (Admission Review and Dismissal) Team to describe the group that convenes for this purpose. A Team must include the child's parents or guardians, at least one regular education teacher (assuming the child will be in the regular education environment), at least one special education teacher, and a school representative who is qualified to provide or supervise special education services and who is knowledgeable about both the school's general education curriculum and the school's available resources. In addition, parents and school are each entitled to bring others who have knowledge about the child or special expertise. At least one member of the Team must be able to interpret the educational implications of the evaluations the Team is to consider.
The result of a Team's work, and the guiding blueprint for the delivery of a child's special education program, is a document that outlines measurable annual goals and describes what modifications, services and supports will be provided as well as when, where and how frequently they will be performed, and how progress will be measured. The document that details the child's program is called an Individualized Education Program (IEP). Parents are equal partners in the process of developing this program and need to work effectively with school personnel to ensure that their child's needs are adequately met. Needs for a boy with Duchenne may be very different from those of other children who receive Special Education and as a parent you need to actively participate in the IEP process, helping to educate the Team, for your child to fully benefit from Special and Regular Education.
Working with your child's school to develop an appropriate IEP can be a challenge, yet establishing mutually respectful relationships with school personnel, as much as possible, is important. Volunteering at school will make you more familiar to teachers and staff and is a way to help build a positive relationship and also to learn about the strengths and shortcomings of the school program as it works with your child. Many parents are intimidated because they do not have the same training or education as school personnel, yet your input and participation is important in determining what services will be provided for your child. The most knowledgeable and highly trained expert cannot make intelligent decisions without basic data about your child and you are the best source for much of that information. Considering all the members of the IEP team, including yourself, as partners can reduce frustration and is a more productive attitude than to think of yourself as an uninformed and passive recipient of the wisdom of experts. You should learn to be cooperative and courteous in all dealings with school personnel (even if provoked), but also knowledgeable and straightforward where you have information to give or rights to assert. Also, as any good doctor must listen to your observations when treating your child's illnesses, the IEP team will benefit from your insights about your child's abilities and needs when developing an IEP. Putting together a plan of what you want your child to achieve in school and a list of areas in which he needs assistance will also be helpful. Taking time to learn common special education terms and the rules of the process that leads to an IEP and its implementation will help make you comfortable and productive in meetings.
It is recommended that you keep a notebook with all correspondence and contacts with the school including past IEPs, evaluation reports and progress reports. Include any letters sent to or from home and notes you take of calls made to the school with dates and times. All requests that you make for documents, for changes to an IEP or to reschedule an IEP meeting should be in writing with a copy saved for future use. Also, whenever you have an important conversation with a school employee in person or by phone (especially if you think the person has agreed to do or not do something regarding your child), you should consider following up with a letter to that person thanking them for their attention to your child's situation and outlining what you believe they said. Try to maintain your file in strict chronological order, as many parents (and their advocates and attorneys) have learned from hard experience that any other way leads to lost documents and confusion. Having this information chronologically organized and in writing may help avoid misunderstandings and help resolve possible conflicts.
If your son is newly diagnosed or has not yet been identified as having a disability by his school, you will need to inform school administrators that your son has Duchenne. This is known as a referral and a parent a teacher or a representative of a state agency or a school district may refer a child for evaluation to see if he is eligible for Special Education. Schools are required to locate and identify all children with disabilities.
Upon referral the school is obligated to send written notice of what actions they intend to take and a procedural safeguards notice which includes parental rights to an independent evaluation, to examine records, and to request mediation and due process procedures. You should note that a school cannot provide special education services until a full individual evaluation has been completed and the Team has developed an IEP to which you consent. Nor may a school conduct an evaluation without your written consent. Because very generous timelines govern the completion of the evaluation and IEP development process, you should be sure to sign a consent form for an evaluation at the earliest possible date.
Young boys with Duchenne often do not immediately display noticeable physical characteristics that would elicit concern and, as a result, they may not be considered for referral until those symptoms begin to show up in the classroom. At a reasonably early stage of your son's development, you might volunteer to speak with the teachers and staff who interact with your child about Duchenne. An informal meeting can be scheduled for teachers and staff to discuss the diagnosis and your observations of your son's current level of ability and possible future needs. These meetings may be repeated each year as he advances to the next grade and has a new teaching team as a way to help them understand your son's particular needs and to help you develop a rapport with his team. It is often necessary to explain how muscle weakness occurs in Duchenne and that eccentric and strength building exercises must be avoided as they hasten the progression of muscle weakness. You should describe your son's specific abilities and needs based on your observations and concerns. There should also be a thorough discussion regarding the need to help your child develop self-advocacy skills and ways to maximize his inclusion with regular education classes and activities. While a child with Duchenne may eventually become totally dependent on others for physical needs, independent decision making and appropriate interactions with others are vital skills needed for maintaining maximum independence. These meetings provide good opportunities to solicit input for immediate accommodations to benefit the child's current needs. Getting school personnel involved early is essential for building a productive, involved team. People like to be asked their opinion and you might be surprised by their insightful suggestions.
Once a child has been referred and you have provided your written consent to an evaluation, school officials schedule an evaluation to determine eligibility provided they agree special education may be needed. If they disagree, they must inform you in writing with their reasons. You have the right to challenge their decision as outlined in the school's Procedural Safeguards Notice. If they agree, full and individual evaluations will be scheduled focusing on whether and how this disability (and any others) affects any aspects of educational performance and daily activities. Evaluations may include standardized testing, assessments of fine and gross motor skills, medical information such as vision and hearing tests, a home assessment, and evaluation of emotional and social well being. It is important for you to openly voice any concerns you have about your son's abilities and challenges: physical (including both gross and fine motor), speech and language, social, and cognitive, so that proper testing will be performed. The evaluations will be used to establish a base line of ability and necessary interventions. Schools must obtain parental permission for any evaluations and re-evaluations.
If, after the school's evaluation is complete, you disagree with any of the assessments or wish to obtain an assessment that the school refused to perform, you can request an independent evaluation at the school's expense. You should familiarize yourself with your state's rules governing how that request will be handled. In most cases, if the school refuses to fund an independent evaluation, you can obtain an order for funding if you can show that the school's evaluation was not comprehensive or appropriate. The work of an independent evaluator can be the most important resource you can get. Accordingly, you should be careful to investigate the options for experts to perform an independent evaluation and be sure that you find people who have genuine credibility in their fields, who are respected in the community, and who are willing to back up their results and recommendations by attending Team meetings, observing programs and even testifying if need be.
You must be informed about the evaluation process in writing prior to any testing and provide the school written consent for any desired testing. In any case when the school decides not to re-evaluate, they must inform you in writing about their decision and how you can challenge this decision through a complaint investigation process or in a due process hearing.
A child receiving Special Education Services will be re-evaluated at least every three years, but no more often than once annually unless the parents and school administrators agree otherwise. As parents, under IDEA 2004, you can also insist on a reevaluation on an annual basis even if the school believes it has enough data without such a reevaluation
If the team decides the child does not qualify for Special Education, the meeting may reconstitute as a 504 Meeting where a 504 Plan may be developed, or a different group may meet to discuss such an option. A 504 Plan lists all accommodations made to enable the child to participate in a similar manner as his able bodied peers, including whatever modifications may be necessary for him to participate in standardized testing, participate in the regular classroom and enjoy the extra-curricular activities that are available to his peers. Either plan can include PT and other related services if the team deems this necessary. There are different protections for the student under 504 and no federal funds are provided to schools to offset expenses incurred, but schools are no less required to provide accommodations under a 504 plan than they are to provide services to an eligible child under an IEP. Typically, the same agency that hears and decides due process cases under IDEA also can hear and decide disputes about Section 504.
Understanding Services: Determining what services would be helpful and appropriate and, in turn, which of those services your child may be entitled to under IDEA or 504 can be a confusing and frustrating exercise. Evaluations may offer direction as to what areas need attention, yet ensuring that proper modifications, supports and services are provided requires a thorough understanding of the progression of Duchenne and other factors. Speaking with other parents who have a child with Duchenne and have been through this process can bring many good suggestions. Some IEPs are developed by trial and error, but preparation and information may help you develop an appropriate plan with fewer such trials and errors.
There are three main types of services a child may receive. These are Special Education, Related Services, and Supplementary Aids and Services . Special Education is specifically designed instruction to enable a child with a disability to make effective progress in the general education curriculum. Related Services are non-educational services like transportation, speech and language therapy, occupational therapy, psychotherapy, and support services required to assist a child with a disability to benefit from special education. Supplementary Aids and Services are supports, aides and services provided in regular classes and other education-related settings to enable a child with a disability to be educated with nondisabled children in the Least Restrictive Environment.
Accomodations and Services: Typical accommodations and services found in an IEP for a child with Duchenne include transportation services, developmental and corrective services, preferential seating, modified lesson plans to minimize writing, Adapted Physical Education, PT and OT Services, and, occasionally, a 1:1 or shared aide to accompany the child during the school day. It is important to remember that "Related Services" in an IEP such as PT and OT must be educationally relevant and support Special Education. Especially for a progressive disability like Duchenne, PT and OT Services may begin with consultation to the classroom teacher and later become direct (hands on) services as the disability becomes more challenging. Again, self-advocacy and independence must be emphasized and included as a goal in the child's IEP to help alleviate the tendency to become dependent upon supports that can grow in a child who needs intensive physical assistance.
Perhaps the most complicated issue to prepare for may be the question whether your child needs specialized instruction because of his disability and therefore needs an IEP, or if he needs only accommodations in order to access the education program (including both academic and non-academic activities). If he has a related education issue such as a serious reading disability, there is no question he'll need an IEP to obtain the specialized instruction appropriate to that need, but if his academic skills and social skill development are on a par with non-disabled peers, it is likely that he may need only certain accommodations and, thus, a 504 plan. An expert in Duchenne and educational issues can help you sort this type of question out before your Team meeting so that you can approach the Team without being confused by the different types of intervention and the criteria for each.
Once all evaluations are completed, an IEP meeting will be scheduled within a predetermined period of time (under IDEA 2004, that time period is either within 60 days following the parent's consent to an initial evaluation or within whatever different specific time limit, if any, is required by a particular state) to determine the child's eligibility and placement in Special Education and to develop an IEP. The school must provide advance written notice of the time, place and agenda for each IEP meeting. Be sure to read the agenda and prepare for the meeting by writing a list of concerns, deciding what topics need discussion or focus, and making sure you understand what will be discussed at the meeting. If the meeting is at an inconvenient time, you may ask to reschedule for a time better suited to your schedule.
A child with Duchenne may qualify for Special Education under the categories "Multiple Disabilities", "Other Health Impaired" or "Orthopedic Impairment". While schools should be versed in providing Special Education generally, a child with Duchenne may require different levels and kinds of services due to changing physical and functional ability, and, as technology and care related issues change, so will the needs of a child with Duchenne. Up to date and periodic evaluations will provide insight into what services and supports are needed, yet will only serve as a guide. As each child has unique needs, every plan must be tailored to the needs of the child. It is the IEP team's responsibility to determine what is appropriate for the individual child and consensus should be reached to develop and change an IEP. If the Team members disagree on any important issues, the school district representatives must develop an IEP incorporating their proposed program; Parents can later respond to that by accepting the proposed program, rejecting it, or rejecting it in part, after which they may, if they choose, use due process to try to have their position upheld by an impartial hearing officer and/or mediation to try to reach a resolution by compromise.
The IEP meeting is directed by the school's Special Education representative and all participants are provided an opportunity to comment and help develop the IEP. Participants in a meeting for a child with Duchenne must include not less than one regular and one special education teacher and may include other professionals such as a school psychologist, a physical therapist and/or an occupational therapist. IDEA 2004 (effective in July 2005) provides that parents and school districts can agree under some circumstances to excuse a member of the Team from attending. If you are asked for consent to the absence of any school employee, you should consider carefully whether agreeing to that member's absence may deprive your son's Team of valuable input. Other participants who may have expertise useful to the discussion may be invited by the parents or school. In that light, parents may want to bring an expert in education or in Duchenne, and/or an advocate and/or a friend familiar with the process for support. It is a good idea, if possible, to have a friend with you whose only job is to take excellent notes of the meeting as a more comprehensive record than any "minutes" you may later receive of the meeting. It is also a good idea to have for your own guidance a checklist of all points you want to make and all services or accommodations you want to request, with a column next to each to mark the school's response to your points and requests. Due to the importance of these meetings, to show a united front, and to help each parent feel supported and stay focused, both parents should attend if possible.
At the meeting, participants review evaluations and discuss the child's present level of ability. (Normally written reports of the school's assessments should be delivered in advance of the meeting, so time should not be spent reading those reports out loud.) Each will comment from their field of expertise on how the child's disability affects his ability to progress and participate in the general curriculum and a statement is written for the IEP.
Similar to the informal discussions you might have had with your son's teachers and staff, you may present information about "typical" progression of Duchenne during the PET meeting. Many people are unfamiliar with Duchenne and helping others to understand this disorder is important for obtaining appropriate services. You should bring any supportive information, medical records, documents, or publications that will help others to understand your son's disability, the known progression, and information about supports and services you think should be considered.
It is often helpful to have an expert in Duchenne accompany you to a Team meeting, or, better yet, an expert in education who understands the particular issues of your child related to his Duchenne and can speak to the best ways to accommodate and educate that child, rather that try to explain these matters all on your own.
Considering your child's current level of ability, measurable annual goals are written outlining what your child is expected to learn and achieve in the coming school year. These goals must be designed to meet your son's needs resulting from his disability, to enable him to be involved in and make progress in the general education curriculum, and to meet other educational needs. Updates of measured progress should be provided to you periodically through the school year at least as often as reports are given to non-disabled peers of their progress. (It should be noted, unfortunately, however, that IDEA 2004, as of July 2005, has eliminated for most categories of child the requirement to write measurable quarterly benchmarks, or short term objectives into an IEP.) Again, all aspects of the IEP are developed by the PET team and there should be consensus within the team in developing or changing the IEP, though parents and school personnel may disagree, with the possibility of a due process hearing or mediation to try to resolve the differences eventually.
Once goals have been written, the IEP Team should consider what kind of specialized instruction should be provided and which Related Services will be necessary for the child to benefit from that instruction. The committee decides which services are appropriate, who will provide each service, and the frequency and duration of the service. A boy with Duchenne may need the following and other related services:
Additional services may be necessary for a child to benefit from special education and/or to prevent him from having to leave the regular classroom for all or part of his education. Among other things, the IEP team will decide whether Extended School Year Services (ESY) are necessary and if accommodations are necessary for standardized testing. ESY services may include tutoring, physical and occupational therapy services and other services to help the child when school is not in session. The test typically applied to decide if a child needs ESY services is whether the child's skills will substantially regress without those services. A better way to analyze the question is to ask whether a child needs ESY services in order to make effective educational progress (FAPE). Either way, it is often more difficult to convince schools to provide ESY than to get services during the school year, and it is important to be prepared with expert documentation to show the likelihood of substantial regression without the ESY services.
Special accommodations for standardized testing may include additional time for completion, changes in testing format or an aide to scribe answers. The IEP Team should consider the use of an aide in the classroom for assistance with notes, scribing and other activities. For a boy with Duchenne a male should be requested for assistance when using the restroom. As defined in IDEA, the purpose of special education for all children is to "…prepare them for employment and independent living." By age 16 the IEP Team needs to determine if transitional services are needed and how they will be provided. These services are designed to prepare the child for employment, secondary education and independent living. As with Related Services, this list may be extensive and it is the Team's responsibility to decide what services and supports are necessary.
Where your son will receive his education is the last consideration of the IEP Team. IDEA requires that "[t]o the maximum extent appropriate, children with disabilities [be] educated with children who are not disabled…" Decisions for Related and Supplemental Services must reflect the Team's commitment to this philosophy. The term used to describe this principle is the "Least Restrictive Environment". When a child must be removed from the classroom or school, the IEP must explain the extent to which he will not participate with non-disabled children and why it is necessary based on the child's particular needs. For most boys with Duchenne, the regular classroom is the appropriate and least restrictive appropriate environment. In some cases an argument for additional services can be supported by pointing out to the IEP Team that denying a particular service would result unnecessarily in the child being removed from the regular classroom. Having an advocate or supportive documentation can help bolster such an argument.
Once all discussion has ended and the components of an IEP have been established, either by agreement or by the assertion of the school district representatives' conclusions in opposition to the parents' requests, the meeting is ended. Typically, minutes taken during the meeting will be copied or transcribed and distributed to all members of the Team. It is very important to review these minutes for errors and, as mentioned earlier in this discussion, copies should be saved for future reference. Again, having a set of detailed notes yourself, either your own or those of a person you bring with you to record notes, can be an important check against a superficial or erroneous report of the meeting in the "official" minutes.
The IEP is not an inflexible document and may be amended from time to time as necessary to help ensure appropriateness and student progress. IDEA 2004 (effective in July 2005) provides for parents and school districts, between annual Team meetings, to agree to make changes in an IEP without convening the Team. If you are asked to agree to a change without convening the Team, you should consider carefully whether the proposed change should really be made without the benefit of a full Team discussion; obviously, the decision may depend on how important the change is and how complicated the reasons for the proposed change may be.
If consensus is not achieved, there is an established process for mediation and/or due process hearings by impartial hearing officers. Schools must inform parents about these safeguards. There is no guarantee everything desired will be included in an IEP. Stand firm for what you believe is appropriate; be clear about what you believe are the priorities and reserve your energy for what is most important. Always treat others with respect, do not withhold critical information about your child, and avoid using anger or bullying. There may be differences in interpretation of specific findings and what a parent believes is important may not be considered necessary by the school. Also expect differences in what individual states, communities and schools perceive as appropriate. Sometimes compromise is necessary when seeking specific services or supports and there may be a time you will decide to pursue the matter through due process. It will be essential to be prepared and your chances for success will be greatly improved if you are able to show you went through the appropriate channels in a respectful and professional manner, sharing all information, making your child available for the school's evaluations and trying the services the school makes available (unless you think those services will positively harm your child) before declaring that they cannot work.
You should note that IDEA 2004 (effective in July 2005) has introduced a new set of procedural steps into the due process system, including, for example, a requirement that a "resolution meeting" be held between parents and their school district to attempt to resolve their differences after a complaint is filed and before any hearing process begins. The procedural requirements are complex, and considerations of cost and benefit as well as the likely outcome of a due process hearing should be well understood before parents initiate due process. It is wise, accordingly, to consult an attorney who is experienced in special education litigation well before taking that step.
Many parents have a good relationship with their son's schools and are able to develop appropriate IEPs that leave nothing to chance. It is still wise to take the time to learn as much about the process and "network" with other parents to improve your ability as an advocate for your son. Additionally there are many resources available locally and on the internet designed to help you understand special education law and maximize your ability to obtain necessary special education services that will benefit your son. Consider contacting the Parent Training and Information Center (PTI) in your area. These centers hold seminars and trainings for parents and advocates and provide informational materials that may help you get the most for your son as he attends school. Message boards and e-mail discussion groups for people affected by Duchenne may allow isolated parents a resource from those who have been through the process. Attending the Parent Project Annual Conference is another opportunity to meet and share ideas with other parents. These steps in self-education are even more important now in light of the many changes that have recently been made to IDEA in July 2005. Hopefully with a little work you will develop the confidence, enthusiasm and know-how to obtain an appropriate IEP for your son.