Early Intervention Guide for Kids with a CHD

A baby with a heart defect should be referred to EI as soon as they are discharged from the hospital.  

First, find your local Early Intervention program. To find your local program, go to the ECTA guide and select your state. Click on the website for your state, or contact your state-level EI coordinator. This will connect you to their local EI program.  

Next, refer your child. Ask your doctor for a referral to your local EI program. If the doctor does not give a referral, then you can refer your own child with a heart defect.   

In order to refer your own child: 

• Call your local EI program and say: “I would like to refer my child for an Early Intervention eligibility evaluation, under Part C of the Individuals with Disabilities Education Act (IDEA).” 

• Write an email or letter to your local EI program. The note should say: “I would like to refer my child for an Early Intervention eligibility evaluation, under Part C of the Individuals with Disabilities Education Act (IDEA).”  

• When making the referral, be prepared to share: 

• The child’s name 

• The name(s) of the child’s legal guardian(s) 

• The child’s address 

• Telephone numbers to reach the guardian(s) 

• The child’s birthday 

• The child’s doctors’ names 

• The names of any therapists or agencies that work with the child or family 

• Why the child is being referred 

• Their medical history 

• Any concerns about development 

• Any concerns about feeding and sleep 

• The child’s medical insurance 

These links are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites.

After the referral, the Early Intervention Program must decide whether or not a child qualifies within 45 days. In some states, babies and toddlers with heart defects automatically qualify for EI and do not need to be evaluated. In other states, they must be evaluated to qualify. 

After the referral, your family will be assigned an EI Service Coordinator.  The Service Coordinator may ask you to sign a form giving permission for them to assess the child. You should ask any questions you have about the testing before signing.  

After you sign the form and return it to your EI program, then the EI program may begin the testing process.   

Once you have given their consent, the EI program schedules the evaluation.  You should stay in touch with the EI program to make sure the evaluation is set up quickly and conveniently.  An evaluation may happen at home, in a child’s daycare, or in another facility.  

No more than 45 days after the referral, you meet with your EI team.  This meeting should happen at a time and place that is convenient for your family.  At the meeting, the team: 

• Says if the child is eligible for EI 

• Discusses what they learned from the evaluation 

• Shares a written Individualized Family Service Plan (IFSP), which includes the child’s goals and the services EI will provide 

 Remember: families are the most important part of the EI team.  You should share your ideas and concerns freely. 

At least every 6 months, the IFSP should be reviewed by the whole team.  You should tell your EI Service Coordinator if this review is not scheduled promptly.   You can invite anyone you want to the review meeting.  During this review, you and your providers discuss: 

• Your child’s progress 

• If your child is making progress as quickly as hoped 

• Any concerns you have about your child’s development 

• How well the services are working 

• If anything may need to be changed in the IFSP 

At this meeting, you should share your questions, concerns, requests, and goals. 

Once a year, the EI team meets to update the IFSP.  You should tell your EI Service Coordinator if this annual meeting is not scheduled promptly. You can invite anyone they want to this meeting. During the annual IFSP evaluation, you and your providers: 

• Discuss your child’s progress 

• Update the goals 

• Update the services your child will receive, if needed 

Parents are the most important part of the EI team.  You should tell the team what you are noticing and wondering about your child.  The team must consider your ideas, concerns, and goals in writing the new IFSP. 

If you want to review your child’s EI program sooner, you can ask for an IFSP Evaluation.   Early reviews are important if anything changes for your child, such as: 

• Faster or slower development than before 

• A new diagnosis 

• A surgery or long hospitalization 

• A major illness or injury 

• A major change in the family 

• New enrollment in daycare or preschool 

If you need an earlier review, you should call or write to your EI Service Coordinator and say: “I would like to request an early evaluation of my child’s IFSP.”  You should tell the EI Service Coordinator times and places that would be convenient to meet. 

When your child is age 2 years, 6 months, it is time to start thinking about transitioning out of EI. You should meet with your EI team, and ask them to write a Transition Plan. The transition plan should include:

• a description of options for your family

• an explanation of how transition will work

• recommendations for next steps

• information that will be sent on to the next provider

When you start thinking about transition, write or call your school district to request a Special Education eligibility evaluation. They can evaluate your child by the time they are age 2 years 9 months. Then, your child can make a smooth transition between EI and the school district.

This content was reviewed by a psychologist and an educator at Boston Children's Hospital.

Developmental care is best when it is local. Families local to Boston can receive care from the Cardiac Neurodevelopmental Program (CNP). Families from other regions can use the link below to find their local care team.