OI Issues:


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.

The federal law that supports special education and related service programming for children and youth with disabilities is called the Individuals with Disabilities Education Act (IDEA). Under this law, which was originally enacted in 1975, all eligible school-aged children and youth with disabilities are entitled to receive a free appropriate public education (FAPE) in the least restrictive environment. The least restrictive environment would entitle most children with OI to be educated with nondisabled children, to the maximum extent possible, where they can benefit from the stimulation and social contact and where appropriate supportive supplementary assistance is provided when necessary. In addition to this law, amendments were passed in 1986 that include:

  • provisions to help states develop early intervention programs for infants and toddlers with disabilities, and
  • special funding incentives for states that make a free appropriate public education available for all eligible preschool children with disabilities ages three through five.

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
Early intervention services for infants and toddlers are designed to identify and treat a problem as early as possible. These services are offered through a public or private agency and are provided in different settings, such as the home, a clinic, a neighborhood daycare center, hospital, or the local health department. Often, they are provided at no cost to the family.

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 first step in obtaining special education services for your school-age child is to arrange for your child to receive an evaluation by the district's Committee on Special Education (CSE). This refers to the total process of gathering and using information to determine whether a child has a disability and the nature and extent of the special education and related services that the child needs. The public schools are required to conduct this evaluation of your child at no cost to you.

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
There are a number of things you can do to ease your child's transition into the classroom.

  • Meet with your child's teachers to explain OI and provide pamphlets and brochures from the OI Foundation.
  • Explain that fractures may occur and when they do, no one -- including the teachers and other children -- should feel that they are at fault. Emphasize that the benefits gained by the child's participation in a regular school program far outweigh the risk of a fracture, which could occur wherever the child may be. Provide a telephone number should an emergency arise, along with other instructions should a fracture occur.
  • Ask the teacher to explain to the other children about your child's condition. If your child is comfortable talking about him/herself and OI, the child could be present to hear the explanation and possibly participate in explaining or answering questions. However, if this would be embarrassing for the child, ask the teacher to talk about OI to the class when the child is not present.
  • Explain to the teachers that it is best for your child to be treated the same as the other students, equally and without special favor or attention. It is most beneficial if the teachers understand the child's strengths and limitations and know that they have the full support of the parents.
  • Arrange for an ambulatory child with OI to change classes a few minutes before the bell rings to prevent unnecessary physical contact in crowded halls.
  • Keep a separate set of books at home for the student to use to avoid the need to carry heavy books for homework.
  • Modifications can be made in the curriculum so that a child can participate in regular programs, including gym, to the fullest extent possible.
  • Many schools hire a full-time aide to assist a child using a wheelchair to get around. However, once a child has reached second grade, other classmates can sometimes be enlisted to assist the student in getting around or with other activities, when appropriate.
  • If your child uses special equipment to accomplish a necessary activity, you can offer to provide the same equipment for use in school.

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.

In most cases, the only deterrent facing the student with OI in choosing a college is optimum accessibility of both the learning and living facilities. Many colleges and universities have support services to assist in the accommodation of students with disabilities. Personnel providing these services can often be helpful in providing information to help prospective students determine whether the college will meet their needs. A visit to any college being considered is imperative to judge the degree of accessibility.

Additional Sources of Information

State Department of Education

Division of Special Education

State Capital

National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013
(800) 695-0285 (Voice/TTY)
(202) 884-8200 (Voice/TTY)

ERIC Clearinghouse on Disabilities and Gifted Education
Council for Exceptional Children
1920 Association Drive
Reston, VA 20191-1589
(800) 328-0272

HEATH Resource Center
(National Clearinghouse on Postsecondary Education for Individuals with Disabilities)
One Dupont Circle, NW, Suite 800
Washington, DC 20036-1193
(800) 544-3284, (202) 939-9320

Additional Reading

Anderson, W., Chitwood, S., & Hayden, D. (in press). Negotiating the special education maze: A guide for parents and teachers (3rd ed.). Bethesda, MD: Woodbine.

NICHCY (1997, Feb.). Parenting a child with special needs: A guide to reading and resources. 2nd ed., NICHCY News Digest.

This information is brought to you by the
NIH Osteoporosis and Related Bone Diseases~National Resource Center (ORBD~NRC)
and the Osteogenesis Imperfecta Foundation

National Institutes of Health
 Osteoporosis and Related Bone Diseases
 National Resource Center
1232 22nd St., NW
Washington, DC 20037-1292
Tel: 800/624-BONE or 202/223-0344
Fax: 202/293-2356, TYY: 202/466-4315
E-mail: orbdnrc@nof.org

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.

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