Osteogenesis Imperfecta - FamilyEducation

Expert Advice

Osteogenesis Imperfecta

Expert Advice from Stanley D. Klein, Ph.D.


Our son has Osteogenesis Imperfecta (a brittle bone disease) from birth. His bones break sometimes for what seems like no reason. He has had two compression fractures of the spine this year, along with other fractures.

The school district provides a Chapter 15. How do we get an IEP for him? Is an IEP what we want for him? He has a paraprofessional full-time (shared with another child in his classroom). The bathrooms are not accessible to him. He cannot get a drink from the water fountains. There are not any provisions on the playground for him. This is just to name a few frustrations we face. He is small for his nine years. He uses a wheelchair. He needs help lifting the textbooks. The storage in the desk they provide him is not accessible for him. He can't lift the text from the storage area. The school buildings are newly renovated, supposedly meeting ADA guidelines.

They plan to build additional schools in the area and renovate the high school. How do we make sure they meet his needs for future school years?

Anyone in similiar situations? We will appreciate any input that helps.

To help me give a more specific answer, I need to know what a "Chapter 15" is. I assume it is some state program. Where do you live? When I know the state in which you live, I can sometimes be more specific in my answers.

An IEP (Individualized Educational Plan) ought to be part of the planning for your son at school. Under the various Federal classifications, your son would be considered to have an "orthopedic disability." Since he uses a wheelchair for mobility and has osteogenesis imperfecta, that is a reasonable category.

In fact, to qualify for an assessment of your child under the Federal law, Individuals with Disabilities Education Act (IDEA), all a parent needs to do is to ask for an assessment. After doing an assessment, the school can conclude that child does not have a disability. However, with your son, there should be no question. Even if your son does just fine in the academic aspects of his school and does not need any special assistance in learning, the IEP process could establish specific relevant goals for your son. In his situation, these goals could specify how he will participate in physical education class or recess activities -- for example, he might have adaptive physical education during the same periods as his classmates and work on specific skills relevant to his abilities. The IEP can also set specific goals for social relationships if that is an issue of concern.

Regarding the use of bathrooms and water fountains, there are two different issues. First, are the toilets, sinks, and fountains accessible to a child who uses a wheelchair. If so, in the IEP, specific self-care goals could be established such as learning how to transfer from his wheelchair to the toilet. The teaching of such skills can be within the IEP; they would probably be taught under the direction of a physical therapist, occupational therapist, or school nurse.

It also sounds like the school may need some help making the classroom more accessible to your son. Often, such things can be done at minimal expense if there are experienced parents or people with disabilities available to show the school how to do whatever needs doing.

One key resource for you would be the Parent Training and Information Center (PTI) serving your area. PTIs can help parents to: understand their children's specific needs; communicate more effectively with professionals; participate in the educational planning process; and obtain information about relevant programs, services and resources.

People at the PTI may know your school district and have experience with accessibility of schools. Overall, they are wonderful resource people.

I also urge you to contact the Osteogenesis Imperfecta Foundation (OIF). This group may be able to put you in touch with parents who have dealt with similar issues with schools.

Please note that since I have not examined the child in question personally, my suggestions need to be reviewed with appropriate professionals who do know your child.

Stanley D. Klein, Ph.D.
Licensed Clinical Psychologist

Stanley D. Klein, Ph.D., is the former Editor in Chief of Exceptional Parent magazine. A clinical psychologist and editor, Klein cofounded the magazine in 1971. Klein serves as a Research Associate in Medicine (Pediatrics) at Children's Hospital (Boston), where he teaches health care professionals about working with the parents of children with disabilities, with particular focus on the challenge of delivering difficult diagnostic news.

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