In her final post of a three-part series, Kyle Herma, School Intervention Specialist at Children’s Hospital of Wisconsin, details how to start advocating for a dedicated school liaison at your cardiac center. If you missed the series, you can find her first post here and Complete Resource Guide here.
Advocating for equal accesses to quality education for children with complex health needs is often a difficult process. At times, the numerous boundaries families face seem to make it almost impossible to get appropriate evaluations and support services in place, especially within schools. It is in the untangling of these messy webs of communication and information where I find some of my most fulfilling work. Having a dedicated school liaison position within your cardiac center (usually as part of a multidisciplinary neurodevelopmental follow-up team) is an ideal situation for receiving whole-child focused, comprehensive care; however, there are many ways for parents to step in and be the driving force in centers that have not yet established these types of innovative programs.
Neuropsychology is the study of the relationship between the brain and behavior. During a neurodevelopmental evaluation a child’s level of cognition and intellectual functioning, emotional and behavioral functioning, and social functioning are assessed. Each assessment will track milestone progress in areas such as: motor skills, play skills, feeding, language development, growth, nutrition, and hearing. The goals of this type of assessment are to identify the child’s ability to function in a group of same-age peers, identify the factors that influence their actions and reactions, determine how levels of functioning are influenced across different medical treatment/intervention stages, determine the response to or recovery from specific treatments, monitor overall brain development, and provide recommendations for schools in effort to implement appropriate special education services and other learning supports. A neuropsychological evaluation is typically recommended for children between the ages of 6 month to 18 years, who are at high risk for developmental disorders, disabilities, or differences. While the child’s age determines the way they are evaluated, this assessment usually consists of formal pencil-paper testing and interactive completion tasks such as match-making, completing patterns or sequences, and following oral directions. In addition, the neuropsychologist/psychologist will review psychosocial family factors, as well as the child’s developmental and medical history.
The Benefits of a Cardiac Neurodevelopmental Follow-up Program
Children with congenital heart disease are considered high-risk for developmental differences and delays due to many factors related to their medical history, including medication, treatments, and surgical repairs. Fortunately, research also shows that with early identification of these learning delays and appropriate follow-up services put in place, these children can go on to lives long and successful lives.
Neurodevelopmental follow-up programs are designed around a multidisciplinary team of experts who conduct regular, comprehensive assessments of a child’s growth and progress in all areas of functioning and development (also called “neurodevelopment”), and provide families with important information, recommendations, and resources needed to ensure the best possible educational outcomes. There are several school-age transition points that tend to show an increase of challenges (for example: 3rd grade is a time when children become more independent at school, thus learning difficulties become more evident; the transition from 5th to 6th grade requires a shift in complex problem-solving and organizational skills, and so on). Ongoing neurodevelopmental evaluation is recommended as it is typical for new concerns to arise at different developmental stages.
Once a neurodevelopmental evaluation has been conducted, families will have a better understanding of their child’s overall level of functioning and specific cognitive strengths and weaknesses. Recommendations may be given for academic assistance in terms of accommodation or modification in school or for further psychological or psychiatric therapies/treatments/evaluations. Recommendations may also include planning for transitional service from pediatric to adult care. Most evaluations will also conclude with recommendations for continued skill development at home, ideas for discipline and/or behavior management, and additional resources for support.
Advocating for Neurodevelopmental Follow-up, School Intervention, and Like-programs
I always recommend that my families educate themselves on the developmental milestones of “typically developing” children. I whole-heartedly believe that all children are different and hit “normal” milestones at all different times, but early identification of differences or delays (even if it’s just scheduling an assessment or evaluation) overwhelmingly leads to higher overall academic success rates.
Once you’ve noticed a concern it is important to talk to your child’s primary care provider (general pediatrician) or cardiologist right away. These medical providers will be able to listen to your concerns and help identify action steps (i.e. request an Individualized Education Plan, set up a Neurodvelopmental follow-up, etc). In the event that your cardiac center does not have formal programs in place to assess and assist with neurodevelopmental and educational challenges, there are still ways to seek necessary support. For example, most cardiac programs have a dedicated social worker. A family might request to work with a social worker to express school concerns and connect with existing resources or school support services found within the community. The social worker might be able to schedule a meeting with a hospital-based psychologist or child life specialist who can further assist if your cardiac center does not have these as dedicated cardiac positions.
Parents as Advocates
Parents are often the strongest driving force behind hospital innovation. If your cardiac program does not have access to neurodevelopmental or school support services, you should be asking the question, “why not?” I encourage families to ask their providers, “where do you send your patients for neurodevelopmental follow-up?” (as opposed to the question, “do you offer any neurodevelopmental follow-up?”) and push them to make those hospital-based and community connections to complete their child’s medical team needs. Stay vocal and active in this movement to make neurodevelopmental follow-up and school liaison services part of the expected standard of pediatric healthcare, specifically in the area of cardiology, where this type of comprehensive medical follow-up program is still very new.
Wan tot learn more about the Herma Heart Center’s Neurodevelopmental Follow-up Program? Visit http://www.chw.org/medical-care/herma-heart-center/programs/developmental-follow-up-program/
Want to learn more about the Herma Heart Center’s School Intervention Program? Visit http://www.chw.org/medical-care/herma-heart-center/programs/school-intervention-program/
Kyle Herma is the School Intervention Specialist serving the Herma Heart Center at Children’s Hospital of Wisconsin. Kyle has been at Children’s since February 2015 conducting a formal pilot study on school intervention and the impact it has on a child’s overall medical outcome and quality of life. Prior to this position, Kyle was a teacher at Milwaukee College Prep’s 38th street campus. In both roles, Kyle has shown her dedication to serving children who are placed at-risk for school failure and ultimate mission to achieve equal access to quality education for all.