Middle School Evaluations for Kids with a CHD

Many children with heart defects should be evaluated before transitioning to middle school, which usually happens when they are between 5th and 7th grades, and between the ages of 10 and 12.

Children should be evaluated if they have a heart defect and are at high risk of neurodevelopmental disability. This usually includes children who:

• had a heart surgery as a baby

• had or have chronic low oxygen

• had a heart transplant

• had ECMO or a VAD

• had a cardiac arrest

• had a long hospitalization as a baby for their heart disease, or for a condition secondary to their heart disease

• had a stroke or seizure

• have a brain injury

Parents can ask their cardiac neurodevelopmental team or their cardiologist if they are unsure of their child's risk level.

Even when high-risk children with heart defects are developing well, experts still recommend that they should have regular evaluations: 

• to monitor their development 

• to detect early signs of problems that may appear 

• to plan services 

The 11-year evaluation helps caregivers understand how their child is progressing in school, how well their child is doing socially and emotionally, and whether their child requires additional interventions. It can help set up any necessary services before children transition out of elementary school and into middle school.

Evaluations are slightly different from hospital to hospital, and provider to provider. However, an evaluation 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, to be completed by the parent(s), child, and/or teachers.  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. 

    

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, other therapists, and 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. 

At the 11-year evaluation, the evaluators usually test skills such as:

• How the child thinks, understands, and solves problems 

• How the child learns and remembers

• How the child uses and understands language 

• How the child uses their hands

• The child’s attention, behavior, and mood 

• How the child is learning to take care of themselves 

• How the child plans, makes choices, and shows self-control 

• The child's social and emotional skills

• How the child interacts with others 

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 10-12-year-olds with heart defects, evaluators often use: 

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

• Questionnaires for parents and children 

• Structured conversations with the parent and child

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. 

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? 

• What school services, accommodations, and modifications does my child need?

• Should my child receive Special Education or have a 504 Plan?

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

• What services does my child need outside of school?

• 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.  

After an evaluation, families can use their new information to set up the right supports for their child.   

Parents usually share the evaluation with their child’s: 

• Pediatrician 

• Cardiologist 

• Any other medical specialists (neurologist, pulmonologist, etc.) 

• Teacher

• Psychologist  

• Therapists 

• School district 

After sharing the evaluation report, parents should schedule a meeting with their care team to discuss any new services or supports the child needs.  

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. 

If a child with a heart defect remains at high risk of a neurodevelopmental delay or disability, their next neurodevelopmental evaluation should usually be scheduled prior to their transition to high school, when they are approximately 14 years old.

Families should ask their evaluator when and how to schedule this evaluation. Since many clinics have long wait lists, families should consider scheduling their next evaluation early.

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.