The initial assessment is extremely important however, can be time consuming. Expectations need to be set with families explaining the importance of this foundational activity. The individualized evaluation includes information that will outline future frequency, mode, and time of contacts and is inclusive of defining cultural and religious preferences, literacy screening, and assessment of barriers to function and treatment engagement. The goal is to obtain a comprehensive and accurate baseline describing the child across a holistic set of domains.

The initial assessment is perhaps the most essential part of the process as it is extremely comprehensive and begins establishing the relationship of trust integral to optimal success. Assessment information is gained from a variety of sources including the child/family, current health care providers, records of past health care experiences, school educational plans (if applicable) and assessment of the community offerings of available services. Items included in the assessment cover domains inclusive of medical and psychosocial areas that best describe an individual in relation to their environment as well as questions to gauge specific needs and preferences of the child/family that may arise from cultural or spiritual beliefs (Table 1.2). The assessment does take some time so can be broken down into more than one session as needed to support family comfort (Table 1.3). Supplementing the assessment information are screening tools which may be initiated by the case manager, a primary care physician, or specialist.

The assessment information results are shared in a care planning session with the child/family creating clinical (medical/behavioral), social service, and wellness goals. Inclusion of the medical/behavioral home practitioners optimally occurs in real time or through communication by care coordination staff to create a shared care plan that is given to the child/family, the primary practitioner, and specialists or ancillary care providers as applicable. The team-created care plan creates a unified document to support coordination and consistency for service and to reach the child’s goals.

The National Initiative for Children’s Healthcare Quality and the Center for Medical Home Improvement held a working collaborative to develop contents and explanation of a comprehensive care plan for children with special healthcare needs (http://​www.​medicalhomeinfo.​org/​downloads/​pdfs/​ComprehensiveCar​ePlanning.​pdf). The document contains sample forms with topical areas of importance, stressing the need for a plan of care whether in paper copy format, contained on a memory stick or accessible through the internet.

Family Tip: Families are to be included in care plan development. It is important that your family’s needs and preferences are included in the document. Ask for a copy of your child’s care plan and ask that revisions be made when your child’s health condition changes.

Health Care Professional Tip: To improve compliance with your instructions for medication, treatment and testing, share those items with the case manager to improve continuity and outcomes. The goal is use of a shared electronic care plan enabling all practitioners to see and interact with the child/family in one document.

A care coordination team member employs a process of implementing activities to address barriers and prioritized goals as well as performs ongoing assessment and documentation to monitor the quality of care and services provided. During interim evaluation of the care plan, the case manager adjusts interventions based upon information drawn from the child/family and all care providers to ensure goals are addressed. Case managers review and update care plans as needed based on condition changes but no less frequently than on a semi-annual basis (see Table 1.4).