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SDS and IEP’s By Nancy Miller and Susan Utz
While some children with Shwachman-Diamond Syndrome (SDS) may never require special services in order to benefit from their education, a significant number of them may. Before receiving these services, the child must be determined to have a disability in one or more areas. Recognized categories of disability generally include: autism, communication disorders, dual sensory impairment, early childhood delays, emotional handicaps, hearing impairment, learning disabilities, mental handicaps, multiple handicaps, orthopedic impairments, other health impairments, traumatic brain injury, and visual impairments.

Children with Shwachman-Diamond Syndrome may present with medical concerns only or they may exhibit additional characteristics from any of the above listed disabilities. The primary disability impacting his/her education would need to be determined, as well as any related problems. In cases where health impairment was determined to be the primary or the only disability, it would need to be determined that the health impairment adversely affects the child’s educational performance. This may be apparent in limited strength, vitality, or alertness as a result of chronic or acute health problems.

Eligibility for special education services for this disability would be determined based on an extensive evaluation of the child’s learning capability, academic strengths and weaknesses, present level of functioning, social and developmental history, adaptive behavior, and as needed, fine and gross motor skills, and communication. It would also depend upon a review of the medical history and would require a diagnostic statement from a physician with an unlimited license to practice medicine describing the health impairment. This should include a medical plan listing any medications, procedures, and special medical needs. In cases in which a child is identified as having a disability of any type, an Individualized Education Program/Plan (IEP) is to be written and implemented in order for the child to gain from his/her education. Information for parents regarding the education process can be found at www.ed.gov/parents. The process involving the development of the Individual Education Program consists of the following steps:

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The child is identified as possibly needing special education and related services through a referral or request for evaluation. This may be generated by the parent and/or teacher. Parent permission must be obtained before an evaluation can be completed.
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The child is evaluated in all areas related to the suspected disability. The evaluation must be completed in a reasonable amount of time. If the parents disagree with the assessment, they can take the child for an independent evaluation and may ask the school system to pay for it.
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Eligibility is determined. After reviewing the evaluation, the team (parents and school professionals) decide if the child has a disability according to the definitions stated in federal and state special education laws. Parents may challenge eligibility decisions.
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If the child is found to be eligible for services an IEP must be written within 30 days.
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An IEP meeting is scheduled. The parents are to be notified in advance of the time and place of the meeting, and it must be agreeable to them and the school.
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The IEP meeting is held and the IEP is written. The team gathers to discuss the child’s needs and to write the IEP. Parents may discuss their concerns with the team if they disagree with the IEP. The team must attempt to work out disputes. If the parents still disagree with the IEP, they may request mediation or a due process hearing.
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Services are provided. The school professionals must assure that the IEP is carried out as it was written. Each of the professionals involved should know their responsibilities including the accommodations, modifications, and support they are to provide. The IEP must be implemented in no later than 10 days after it is completed.
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Progress is to be measured and reported to the parents on a regular basis. The reports are to be given as often as that of the nondisabled children’s reports.
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The IEP is to be reviewed by the team at least once a year. This can take place more often if the parents and/or school request it. The IEP may be revised if necessary. At the end of the year, a new IEP is to be created based on the child’s needs at that time. At any time, parents can make suggestions and can agree or disagree with the goals or placement. The process for disagreeing may include, as necessary: presenting concerns, requesting additional or independent testing, requesting mediation, requesting a due process hearing, or filing a complaint with the state education department.
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The child is to be re-evaluated every three years.

Although IEP forms and paperwork may vary from one state or school system to another, they are based upon the nation’s special education laws as delineated in the Individuals with Disabilities Education Act (IDEA). Specifics to be included are:

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A statement of current performance,
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annual goals and short term objectives,
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the type and amount of special education and related services to be received,
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the amount of participation the child will have with nondisabled peers,
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how the child will participate in state/district tests,
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the dates and places services will be given,
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the plan for transition services for children 14 and over,
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a statement of rights being transferred at the age of majority, and
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the method for measuring the child’s progress.

The IEP is a legally binding written document created specifically for an individual child. It is to be written by a team including, but not limited to, the parents/ guardians, regular and special education teachers, school representative, and individuals with knowledge of the student or special expertise (e.g. diagnostician, Occupational Therapist, Physical Therapist, Speech/ Language Therapist, psychologist, social worker, etc.). The committee may also include the child, representatives from transition agencies, family friends and relatives, and other professionals. If the child needs specific related services in order to benefit from his/her special education services, these should also be included in the IEP and the personnel involved should be included in the process. Related services may include: audiology, counseling, medical services, occupational or physical therapy, orientation or mobility training, parent counseling, psychological services, social work, speech/language therapy (if not already considered as part of the disability), transition planning, etc. If the child’s medical condition warranted it, a medical plan should be included indicating medications required and any other special medical needs listed. The IEP team must consider certain other factors to determine their impact on the child’s ability to gain from his/her education.

These include things such as the child’s behavior, whether he/she has limited English proficiency, whether or not he/she is blind or visually impaired, and whether or not the child requires assistive technolgoy. Assistive technology may include low, mid, or high technology equipment that allows the child to participate in the educational process (adapted computer software/ hardware, communication devices, switches to activate equipment, environmental controls, mobility equipment, architectural adaptations, etc.).

In addition to the goals and short term objectives in the child’s IEP, a listing should be included that gives necessary modifications/adaptations/ and supports in order for the child to benefit from his/her education. These may include suggestions on the means of communicating with or eliciting communication from the child (such as, speaking slowly to him/her, providing visual and/or auditory cues, waiting a sufficient time for the child’s response, providing alternative communication systems, utilizing peer models, encouraging output, avoiding abstract language, gaining the child’s attention
prior to communication, responding positively to attempts, avoiding open ended questions, etc. Also included may be strategies for presenting materials, such as the use of written words/pictures/objects, the provision of information in sequential steps, the opportunities for repeated practice, the use of prompts/cues, the use of peer tutoring, the use of low or high technology equipment,etc. Assessments and assignment modifications may also be listed, for example, modifying the length or complexity of assignments, allowing for extra time, modifying question format, providing rehearsal, allowing choices, utilizing highlighting, or having allowable parts read aloud. Behavior issues may be addressed within modifications or if warranted, a separate behavior plan may be written. Strategies to assist with behavior may include methods such as the use of reinforcements or contracts, the use of visual and/or auditory cues, the use of timers, the presentation o choices, permission for frequent breaks, the use of redirection, and the provision of frequent feedback.

The committee can discuss and include these or other strategies they think will allow the child to gain from his/her special education program. By providing in Individualized Education Program to the child with a disability, he/she can be given the support needed in order to learn to the best of his/her ability. If a parent suspects that his/her child has a disability which may be adversely affecting his/her education, the school should be contacted and an evaluation should be requested to determine eligibility.

This especially applies to children with chronic health problems, such as SDS, who may already be facing a variety of challenges in their young lives. As their parents, we can and should advocate for their educational needs just as we have learned to do so for their medical needs. There are many excellent resources and individuals available to us as we learn the process for assisting our children in the world of education.

Works Cited:
“A Guide to the Individualized Education Program”. 11 Jul 02.
http://www.ed.gov/offices/OSERS/OSEP/Products/IEP_Guide

“Title 511, Indiana State Board of Education, Article 7, Rules 3-16, Special Education Rules”. 17 Aug 02.
http://babyindstate.edu/iseas/art71.html

Additional Suggested Reading:
“What Makes a Good Individual Education Plan for Your Child?”. 11 Jul 02.
http://www.pacer.org/parent/iep.htm