Kindergarten Entry Evaluation for Kids with a CHD

Children with high-risk heart defects should generally be evaluated shortly before they start formal schooling, which is usually when they are about 5 years old. Even when children with high-risk heart defects are developing well, experts still recommend that they have regular evaluations: 

• to monitor their development 

• to detect early signs of problems that may appear 

• to plan services 

The Kindergarten entry evaluation can help a family determine what supports a child may need when they enter formal schooling.

A neurodevelopmental evaluation is a set of special tests to assess a child’s learning and development and exploration of his environment. It can include pictures, blocks, games, and puzzles.  The exact tests depend on the child, and the questions the evaluator wants to answer.  A neurodevelopmental evaluation might test:  

• Problem solving   

• Visual-Spatial skills   

• Attention

• Memory  

• Language  

• Motor skills 

• Learning  

• Social skills  

Families, doctors, and teachers can use the results of a neurodevelopmental evaluation to understand how a child is doing, help a child learn, and make recommendations.   

Evaluations are slightly different from hospital to hospital, and provider to provider. However, an evaluation for a young child usually has these steps: 

1. Referral: The parent refers their own child for an evaluation, or a doctor refers the child. 

2. Scheduling: The parent talks with the scheduler, and sets up an appointment. There might be a long waitlist, so parents should consider setting up their evaluation about 6-12 months ahead of time. 

3. Questionnaires: Before the first appointment, the evaluator may send the parents questionnaires.  Parents should do their best to finish them before the appointment. If parents have questions, they can call the scheduler and ask for help. 

4. Interview: The evaluator usually starts with an interview with the parent. The interview might happen in the same appointment as the testing, or a different appointment. Sometimes the interview can be virtual, but is usually in person. 

5. Testing: The parent and child meet with the evaluator. The evaluator does activities with the child.  The evaluator may also ask the parents questions.  The parent may or may not remain in the room with the child during testing.

    

6. Feedback: The parent meets with the provider to discuss what they learned from the testing. This appointment can happen the same day as testing, or a different day. It may happen virtually, or in person. 

    

7. Report: The provider sends the family a written report. The report includes everything they learned from the testing, plus recommendations. Families can choose to share this report with their doctor, preschool teachers, other therapists, and/or local school district.   

Through the testing process, parents should always ask if they have questions, ideas, or concerns.  

Parents know their child best. They are the most important part of any evaluation team. Parents should tell the evaluators what they notice about their child, and how they understand their child’s development. 

Evaluators use many tools in order to learn about the development of a young child. They select tools based in each child’s strengths, needs, and goals.  When assessing 5-year-olds with heart defects, evaluators often use: 

• Tests of how children think, learn, use language, and solve problems 

• Tests of children's early school skills

• Tests of child's attention, focus, and memory

• Tests of children's fine motor skills

• Questionnaires for parents about children’s: 

• Living skills 

• Behavior 

• Social skills 

• Sleep 

• Emotions 

Families are the experts on their own children, and they have a right to understand everything that goes on during an evaluation. They should always feel welcome to ask questions and share ideas. 

Parents should always feel comfortable asking questions before, during and after an evaluation.   When choosing an evaluator, parents may want to ask questions such as: 

• What is your training in evaluation and assessment?  

• What is your experience testing children this age? 

• What is your experience testing children with my child’s conditions and diagnoses? 

• What tools will you use to answer the questions I have? 

• How will you adapt testing to meet the needs of my child? 

• Will I receive a report after my evaluation? What will the report cover?  

• After testing, how long will it take for me to receive the report? 

• After testing, are you available to attend meetings with my child’s school ? 

There is no right answer to these questions, but they may help families select a provider that is right for them. 

After an evaluation, parents may want to ask question such as: 

• How is my child developing as compared with other children their age? As well as compared to other children with his medical condition? 

• What are my child’s strengths? 

• In which areas does my child have developmental concerns? 

• Do you think my child may eventually have other developmental concerns? If Do you expect my child to grow out of any delays that you have noticed? 

• What challenges do you think my child might face in the next few years? 

• Do you think my child should qualify for Special Education and/or a 504 Plan? What school-based supports should my child receive? 

• What can I do at home to support my child’s development? 

• When should my child next be evaluated? 

• What signs should I look for that my child is making expected progress? 

• What signs should I look for that my child may need to come back to see you sooner than expected? 

These questions can help families to make sense of the report, and to move forward with recommendations. Parents should always keep asking questions until they are sure they understand.  

If a child has already qualified for Special Education, the family should send the evaluation report to their school Special Education team.  They should write a note that says: “I would like to request an IEP reconvene meeting to discuss the results of my child’s evaluation.” The team must schedule this meeting within 10 school days. 

If the child has NOT qualified for Special Education, the family may want to send the report to their local school district. If the evaluation showed signs of a disability or delay, the family should write a note that says: “My child has a history of congenital heart disease and has concerns in the domains of language/motor development (mention the specific concerns listed in the report). I would like to request a Special Education eligibility evaluation for my child.” This evaluation must take place within 30 school days, and the meeting within 45 school days. 

Once a child starts formal school, families should monitor their progress during the first years of schooling. They can reach out to their neurodevelopmental team with any questions or concerns, and plan to schedule an evaluation when the child is transitioning from 3rd to 4th grade.

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.