Children with ONH may need many special evaluations, tests, and services.
As the parent of child with ONH, it is important to have a health care team that is knowledgeable about your child's condition.
The medical team should include a primary care provider, an ophthamologist, an endocrinologist,
a psychologist, a neurologist, and perhaps a social worker.
During preschool years, your child will need a developmental assessment. This must be done by someone who is skilled in working with children with poor vision. When your child is about to start school, testing for the most appropriate school placement should be performed. All children are entitled to receive education which meets their needs. To start the process for school placement, contact your local elementary school or local center for children with developmental problems (for example, regional center) both in person and in writing. You will need to request an Individualized Education Plan (IEP) for your child. This process includes an assessment of your child by either the school district or a center for children with developmental problems a specific educational program for your child. You will need to let the professionals know that your child has ONH and any other problems. Keep track of all letters and phone calls made to the district or developmental center. If your child is too young to start an in-school program (for example, if he or she is an infant), services may be provided on a weekly or monthly basis in your home via the local developmental disabilities center or visually impaired program. To make your child's educational experience the best it can be, repeat assessments must be done to insure that your child is learning and developing as expected.
Many children require placement in programs for children with poor sight
(visually handicapped). As your child gets older, he or she may benefit from visual aids such as an enlarger
(to increase the size of print) and/or a special computer for the visually impaired (e.g., a scanner which would take written words and turn them into spoken words).
If your child is not progressing well, additional services might be helpful. Other services may include language therapy (provided by a speech/ language pathologist), and vision therapy. If you have concerns about your child's development in any of these areas, contact the school or developmental disabilities center and request an assessment in these specific areas.
You should become aware of state and local programs that can help your child, such as early intervention programs (funded by state and federal funds), supplemental insurance programs, and special resources. In addition, find out about the national agencies that have interest in ONH; these include the Magic Foundation (Major Aspects of Growth In Children), (800)-3-MAGIC-3; the Human Growth Foundation, (800)-451-6434; the Foundation for the Junior Blind, (213)295-4555; the Braille Institute, (800) BRAILLE (272-4553); and the Lions Clubs.