SDS and IEP’s By Nancy Miller and Susan Utz
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:
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:
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
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.