Profile project

Children with developmental disabilities often have impairments that lead to extra care needs, like home adaptations, special education, or personal help. We developed the Capacity Profile (CAP) to classify the need for additional care in children with neurodevelopmental disabilities. The CAP consists of five domains: physical health, motor functions, sensory functions, mental functions, and voice and speech functions. On each domain, a score from zero (no need for extra care) to five (needs help with every activity) is provided by the rehabilitation team to quantify the need for additional care. The CAP can be established for children from age 2.5 and older. The CAP is developed for children with non-progressive disorders, like cerebral palsy and spina bifida. In children with stable disorders, the need for extra care will also be stable, despite medical treatment and the care provided by the rehabilitation team. Therefore, a CAP established at young age will give a good indication of the extra care that is needed throughout the childhood. The CAP is easily established by a trained physiatrist, and the construct validity and interrater reliability of the CAP have proven to be good.

For parents, it is important to be informed about the functional prognosis of their child. With the CAP, they are informed about their child’s extra care needs, for now and in the future. This will enable parents to start the arrangement of extra care in time. Parents experience the application procedures for extra care as complicated and time-consuming. They often need the assistance of social workers for completing these applications. The CAP will lead to a significant simplification and shortening of these procedures. By using the CAP, the information can be recorded and communicated in a uniform method. The use of the CAP can also improve the communication within the pediatric rehabilitation team and lead to more transparancy in setting treatment goals. Therefore, parents, rehabilitation teams, social workers and indication organizations could all benefit from the CAP.