As the parent of a child with osteogenesis imperfecta (OI), you need to become familiar with the federal and state services that are available to provide your child with a free and appropriate education designed specifically to meet his or her needs. You should be aware of and take an active role in obtaining these services, which are available as soon as your child is born and continue through age 21.
It is important for you to become familiar with your state special education law. The IDEA is a federal law and, as such, provides minimum requirements that states must meet to receive federal funds to assist in providing special education and related services. Your state law and regulations may go beyond the federal requirements, and it is important to know their specifics. You may want to contact your State Department of Education, Office of Special Education, and ask for a parent handbook on special education.
Early Intervention Services
Each state decides which of its agencies will be the lead agency in charge of early intervention services for infants and toddlers with special needs. The first contact person in any state may be an early interventionist (an early childhood specialist working with infants and toddlers), someone with the lead agency, or someone in your state's Child Find office.
To find out who can help in your area, call the National Information Center for Children and Youth with Disabilities (NICHCY) at 1-800-695-0285 to obtain a State Resource Sheet. Explain that you want to find out about early intervention services for your child and ask for a name in your area. (Be sure to keep a record of names and telephone numbers for everyone you contact.) The Resource Sheet will also list the names and contact information for support groups, parent groups, and groups concerned with specific disabilities. NICHCY also has the following brochures available: "Accessing Programs for Infants, Toddlers, and Preschoolers with Disabilities" and "Parents' Guide to Accessing Parent Programs."
You can also obtain information from your Superintendent of Schools or by getting the name of the Director of Special Education.
Obtaining Special Education Services for Your School-Age Child
The evaluation process should look at the "whole child" and include information about your child's total environment. Performed by a multidisciplinary team (including two or more appropriately selected specialists, such as a school psychologist, speech/language pathologist, occupational therapist, physical therapist, medical specialist, educational diagnostician, classroom teacher, and others), the evaluation process includes observations by professionals who have worked with your child, your child's medical history, and information and observations from the family.
There are at least three ways for your child to receive an evaluation: You can request an evaluation; the school may ask permission to evaluate your child; or a teacher or doctor may suggest that your child be evaluated.
Following the evaluation, if your child is found to be eligible, the evaluation results will form the basis for developing your child's Individualized Education Program (IEP). This is a written statement of the educational program designed to meet a child's special needs. It is designed to (1) establish the learning goals for your child; and (2) state the services that the school district will provide for your child. It is developed by a multidisciplinary team that must include one teacher or other specialist who is knowledgeable about OI, along with the child's teacher(s), a representative of the school system, the parents, and the child (when appropriate).
A child's IEP should include statements of the child's strengths and weaknesses and should describe the instructional program developed specifically for him or her. This plan shows the child's current educational level, short and long-term goals, and any special means or needs to achieve these goals. It also includes transportation and any related services your child will require. Accessible transportation, physical therapy, occupational therapy, adapted physical education, and the services of a "mobility facilitator" or "aide" are generally included for children with OI. The IEP may also call for adaptive equipment or assistive technology. As long as the equipment is used only at school, it should be provided at the district's expense, not yours. It is very important for parents to be entirely satisfied with the IEP prior to signing it as this document will direct the services your child will receive. Remember, however, that the IEP can be changed. You may request a review or revision of the IEP at any time.
If you are unable to reach agreement with the school on the placement of your child, a specific procedure is available called Due Process. This is a procedure that is guaranteed upon request if a disagreement arises concerning identification, assessment, or placement of a child. You should be notified of this process in writing when the school advises you of their recommended placement of your child.
Tips for Parents
After your child turns 16, the IEP must include mention of transition services. Transition services are defined by the IDEA as a coordinated set of activities for a student that promotes movement from school to post-secondary activities, including: education, vocational training, adult services, and independent living.
Additional Sources of Information
This information is brought to you by the
National Institutes of Health
The National Resource Center is supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases with contributions from the National Institute of Child Health and Human Development, National Institute of Dental and Craniofacial Research, National Institute of Environmental Health Sciences, NIH Office of Research on Women's Health, Office of Women's Health, PHS, and the National Institute on Aging. The Resource Center is operated by the National Osteoporosis Foundation, in collaboration with the Paget Foundation and the Osteogenesis Imperfecta Foundation.