Early Intervention for Kids with Heart Defects
Ages 0 - 3 Years
Do you have a young child with a congenital heart defect (CHDs)? Did you know that your family probably qualifies for free developmental services in your home? Early Intervention (EI) is one of the best ways to support the development of your young child.
In this section
What is Early Intervention?
Early Intervention (EI) is a support program for young children (ages 0, 1, and 2) who have risk factors, including chronic illnesses or disabilities. Young children with heart defects nearly always qualify for EI. EI is a government program, and is free or affordable to families. It is part of the Individuals with Disabilities Education Act (IDEA).
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How to start receiving EI
When babies are born with a heart defect, they should be scheduled with EI before they are discharged from the hospital. If this does not happen, then families can ask their doctor for a referral to EI.
Families can also refer their own young child to EI. In order to make a referral, families should call their local EI program and ask for a free evaluation. Families can find their local program through the CDC or the ECTA Center Early Intervention Contacts Page.
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.
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How to qualify for EI
After a family is referred to EI, they are assigned a Service Coordinator. This Service Coordinator is a main point of contact through the EI process. They will tell the family what they will need to do for their child to qualify.
Parents should be sure to provide documents that prove their child’s medical history. Most babies and toddlers with a heart defect qualify automatically for EI.
If the child does not qualify automatically, then EI providers evaluate the child. Parents or guardians need to sign a consent form before the EI providers can do the evaluation.
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Deciding what EI services a child needs
After a baby or toddler qualifies for EI, the EI team does an assessment to figure out what services the child needs. Parents must give written consent for them to do this assessment.
During the assessment, the EI team usually:
Tests the baby’s or toddler’s skills
Observes the baby or toddler
Talks with parents about the baby or toddler’s history
Talks with parents about their concerns
Talks with parents about their supports and needs
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Early Intervention and the Individualized Family Service Plan
After finishing an assessment, EI providers and the parents create a document called an Individualized Family Service Plan (IFSP). This is a legal document that describes the services EI will provide the child and family. An IFSP must always include:
A description of the child’s current skills and knowledge
Information about the family, including their concerns and goals
Goals for the child and family
A description of the services the child and family will receive
Where the services will be delivered
Usually, they should be provided in the child’s natural environment. If they cannot be provided in the natural environment, then the IFSP must explain why not.
When the services will be provided
How often
For how long
Who will pay for the services
The name of the Service Coordinator who is organizing the child’s case
How the team will help the child transition out of EI when they no longer qualify, or when they turn 3
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Early Intervention timelines
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Parents or guardians must sign the IFSP before the EI providers can start the services. The IFSP is reviewed at least every six months. It is updated at least once a year.
After a child is referred to EI, the EI agency has 45 days to:
Decide if the child is eligible
Perform an assessment
Write an IFSP
Families should make sure to keep track of when the child was referred, to make sure that the process is as quick as the law requires.
What goals can EI services target?
EI services can serve many of a young child’s needs. For example, EI services can help a baby or toddler:
Move their body
Think and understand
Learn new skills
Solve problems
Interact with other people
Play in new ways
Feel calmer and happier
Eat and dress
Families should talk with their EI providers about what they are noticing about their child. They can help the EI providers identify strengths and goals.
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What services are included in EI?
Babies and toddlers enrolled in EI are matched with services that meet their needs. Some services are provided directly to the children, and some to the whole family. EI services can include:
Family counseling
Parent training
Physical Therapy (PT)
Occupational therapy (OT)
Speech and language therapy
Devices or tools that the child needs
Help with hearing
Medical/nursing care
Nutrition help
Help from a psychologist
Play that supports development
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How is EI provided?
EI services can be provided in different settings. The setting can depend on the needs of the child and family, and on the resources in a community. Usually, EI services should be provided in a child’s “natural setting.” This could be their home, daycare, or preschool. Occasionally, EI services cannot be provided in a natural setting. When this happens, the IFSP must clearly explain why a different setting is necessary.
This content was reviewed by a psychologist 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.
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