Advocating for your Child at School

Kids with physical or mental disabilities can face academic hurdles for a variety of reasons. 504 accommodations are put into place for any child that suffers from a physical or mental impairment that affects their ability to function within school. These limitations can affect or limit

  • Walking, breathing, eating, sleeping
  • Communicating, seeing, hearing, speaking
  • Reading, concentrating, thinking, learning
  • Standing, bending, lifting, or working

The goal of a 504 plan is to allow for students to be educated in regular classrooms with accommodations, modifications and related services if needed. A 504 plan is created by a team. The team usually consists of the parents, teacher, and other related service providers (such as school nurse, guidance counselor or school psychologist). The classroom teacher is responsible for implementing the plan.

The plan should be reviewed annually to assure that the accommodations are up to date and appropriate based on the student’s needs. Any member of the 504 team, including you the parent can call for a review during the year if there is an educational concern or change in the student’s needs.

Consider this information as a starting point for a successful school year for your child. Each child has different limitations, if any at all. Regardless of the limitations it is still very important to communicate with your child’s school.

Teachers and other school personnel may have never heard of juvenile scleroderma. In order to properly care for your child, they should be educated about the disease. Careful education about the illness, information about the specific healthcare requirements, and added resources can help alleviate any anxiety or misunderstandings.

A meeting with teachers and school administrators is often useful for educating school personnel concerning a child’s diagnosis and the potential ways that the child’s school performance might be impacted. A meeting should be requested even if specific school services are not requested. For example, it is helpful for the child’s teacher to understand that the child may have difficulty with writing if his/her hands are affected by the juvenile scleroderma. This may lead to slowness in completing their work. At times it may be helpful if you give permission for your child’s doctors to share information with the teachers and school personnel. You will need to fill out a HIPPA form in order for your doctor to release any information to school personnel. A 2 way communication release is also needed for your doctor to communicate with school via phone or email.

As the parent it is very important to not only communicate with the teacher and school personnel at the beginning of the school year, but all through the year as well. Your child may go through “ups” and “downs”. Because a child with juvenile scleroderma may be more susceptible to illness, you may want to request that the school nurse contacts you right away when the school is notified of any contagious illness, i.e. chickenpox. Throughout the school year your child may miss many days of school due to pediatric rheumatology appointments, physical and/or occupational therapy, counseling, and other health related medical appointments. There may be times too that your child may not feel well enough to go to school because of his/her juvenile scleroderma and/or their medications.

A parent-teacher-child meeting is strongly encouraged for children who need modifications in order to have a successful school year. Be sure to put in writing some of the modifications that all of you have come up with. Make a copy for the teacher to have on hand.

Some of the modifications may include:

  • Loop scissors, instead of regular scissors and big crayons
  • (this is good for kindergarten students)
  • Use of a soft grip pen and pencil, instead of standard pencil
  • A set of textbooks at home and a set of textbooks in the classroom
  • Extended time for classroom assignments or shortened classroom assignments
  • Additional time to complete homework assignments
  • Testing accommodations including additional time to take tests, oral tests, or dictation of long writing test items to teacher
  • Short breaks between assignments
  • Early out pass for an extra 5 minutes to stand in a shorter line for lunch
  • Early out pass for an extra 5 minutes to get to lockers and report to the next class
  • Note taking support from teacher or peer, copy of class notes and/or study guides
  • IPad or chrome book
  • Speak to text devices
  • Use of elevators if your child has limited lung function and shortness of breath
  • Gym accommodations for any physical limitations
  • Air conditioning or room temperature indications
  • Any bus accommodations that may be beneficial for you child

A child with juvenile scleroderma may require either special services or adaptation of the school environment in order to function at his/her highest ability in the classroom. Children identified as having health conditions which may interfere with their educational process and/or school performance are eligible for an evaluation to determine if special services are needed to meet their unique needs. An Individual Educational Plan (IEP) can be requested by the parent. This would require a CSE referral.

Once requested a multidisciplinary evaluation must take place. Your child would be tested for a psychiatric evaluation and multiple academic tests to determine how their disease is affecting their ability to learn. Based on the testing results, the parents and educators discuss the evaluations and develop an IEP which fits the child’s specific needs with goals and objectives.

Most children with an IEP are eligible to stay in a regular classroom under the Least Restrictive Environment. The teacher can make modifications in the student’s classroom curriculum, including the modifications included above if necessary. Most students with juvenile scleroderma qualify for services under the category of “Other Health Impaired” and/or “Orthopedic Impairment.” At times a different learning environment may be necessary and may take your child out of the regular classroom

Other services that may be included in your child’s IEP if eligible are:

  • Adaptive P.E. – a modified version of P.E. that meets your child’s limitations.
  • Physical and/or Occupational Therapy – this is not physical or occupational therapy that your child would receive at a medical facility.
  • Assistive Technology – additional equipment or adaptions, i.e. a computer or special writing adaptions.
  • Nurse Monitoring – your child may need to take their medication at school and/or the nurse will know how to respond to your child’s medical needs at school.
  • School counseling – the school psychologist should be able to help the child with coping strategies. Children can become frustrated trying to keep up with school work due to absences. Their self-esteem can be lowered by teasing, and/or their appearance.


Your Legal Rights

Specific timelines ensure that the development of an IEP moves from referral to practice as quickly as possible. Be sure to get a copy of your parent rights when your child is referred. These guidelines outline your rights as a parent to control what happens to you child during each step of the process.

Know that the rights of children placed in private schools by their parents are not the same as those of kids with disabilities who are enrolled in public schools. Private schools may not provide the same or any services .In addition state regulations vary as do the services that may be provided. Familiarize yourself with the regulations of your state. Be aware that if you have to move for any reason to a new state, that services available for your child may be different.