Early Childhood Intervention for Children with Retinoblastoma

Some young children treated for retinoblastoma develop some skills (such as self-feeding, finishing puzzles, etc.) later than other children their age. These are called developmental delays. This can occur even among young children whose treatment only involved removing an eye.

Early childhood intervention, also known as early intervention or EI, is a system of services funded by the federal government. EI services are part of a federal law, the Individuals with Disabilities Education Improvement Act (IDEA).

EI services help promote the development of children younger than 36 months. In some cases, EI helps prevent future developmental delays. In the United States, EI is available free, or nearly free, for children who qualify.

In some states, having retinoblastoma automatically qualifies children for EI services, even when developmental delay is not present. In other states, your child must demonstrate a certain amount of delay in one or more skills to qualify. 

Early childhood intervention services 

If you are concerned that your child is not meeting developmental milestones, here are some things you can do.

• Look up contact information for your state on the US Centers for Disease Control website. Then, contact your state’s EI program directly.
• Do an internet search using the words “early childhood intervention” and the name of your state/territory.

This will help you find a phone number to call or a link to use for self-referral.

• Contact your child’s pediatrician. Ask for a referral for an EI evaluation in your community.
• Talk to a social worker or ask a member of your health care team who can refer your child for an EI evaluation.

Contact your state’s early intervention office 

Be ready to answer some questions over the phone. You will probably need to give your name, address, child’s name, and more. Also, you will probably need to give details about your child’s health. Explain that you would like services to help promote your child’s development because of the retinoblastoma diagnosis.

Tell them you know in some instances retinoblastoma automatically qualifies children for services under Part C of IDEA. Explain that if this is the case for your home state or territory then you would like to start those services. If that is not true for your community, tell them you would like to have your child evaluated under Part C of IDEA. Once you formally request an evaluation, the EI office has 45 days to evaluate your child.

For more information

If you have questions about EI services, talk to a member of your health care team.