The Care Coordination Process

Overview

The care coordination process includes assessing needs, planning care, implementing the care plan, and evaluating options and services to meet the child and family's individual needs.
  1. Identify the Target Population – Children and families with multiple needs and those that require multiple services, providers and resources are usually a good place to start. The term “Children and Youth with Special Health Care Needs (CYSHCN)” is defined in the Questions section, above. Examples of children and families with multiple needs and services include:
    • Children who are newly diagnosed with special health care needs
    • Families of CYSHCN who recently have moved into the state or to a different area of the state
    • A child with a progressive condition that requires multiple interventions, hospitalizations, or interferes with attendance at school
    • Families with multiple agencies involved in the care of their child
    • Families with limited financial resources
    • Children who have a parent who is developmentally delayed, has a severe physical or mental condition, or a demonstrated lack of knowledge and skill needed to care for their child
    • A child who has been abused or neglected
    • Families who request assistance coordinating their child's care
  2. Assess Needs - First, conduct a comprehensive assessment that includes a biopsychosocial assessment of the child and family as well as input from members of the child’s medical care team. See Assessing Needs below for details on how to develop an assessment tool and medical summary.
  3. Develop a Plan of Care - After identifying needs, develop a plan of care with the child and family and the Medical Home team. Discuss goals and steps needed to reach those desired outcomes, and determine who will do each of these steps and when they should be done. Information from the assessment may be incorporated into a document that can be easily shared with the family as well as other care providers. The purpose is to quickly summarize key information relevant to the child’s current and future health. Written components may include a Medical Summary, a Working Care Plan, and/or an Emergency Treatment Plan. See Care Planning, below.
  4. Implementation – Next, implement the care plan. The care coordinator organizes and assists the family with resources, referrals, and coordination of care with specialty physicians, schools, and other agencies. See Implementation below.
  5. Evaluation – Periodically reevaluate the plan of care and address new needs. See Evaluation below for process nuts and bolts.

Assessing Needs

Children and Youth with Special Health Care Needs (CYSHCN), their families, physicians, and community providers all benefit from having a comprehensive needs and strengths assessment. Assessments for care coordination of CYSHCN not only focus on the medical needs but also on the family, psychological, socioeconomic and cultural needs. The assessment phase is vital to the care coordination process as the information obtained becomes the basis for the medical summary and the working care plan.
Optimally, the child and family review the child’s health status with members of the Medical Home team and discuss problems and needs. The assessment meeting is best done in person but can be done by phone. In an effort to obtain the information some care coordinators have sent forms home for families to complete and return. Assessment involves a continual process of reassessing by gathering information and input from a variety of sources at different points in time to update the plan of care.
Gabe's Care Map provides an example of the needs of a child with special health care needs. The CMHI Pediatric Care Coordination Assessment (PDF Document 157 KB) is an example of a family and patient needs assessment form. The Utah Pediatric Care Coordination Information Checklist (PDF Document 171 KB) is another.

Care Planning

Once the assessment is complete, the family and care team can work together to develop 1-3 key documents to facilitate care and communication among multiple providers. These documents include the Medical Summary, the Working Care Plan, and the Emergency Treatment Plan. These documents may be shared in print versions as well as electronically. Talk with the family about their preferences for how this information is stored and shared. You can also help the family develop a care notebook to keep these and other documents organized.

The Medical Summary

The care coordinator can develop a medical summary for the child’s care that concisely conveys important information for the family and other care providers. The following is a list of components of a medical summary that may be incorporated into a Medical Summary form.
Components of a Medical Summary:
Demographics and emergency contact information
Principal diagnosis
Health history
Current problem list
Medications
Current providers/specialists/services
School placement and services
Cultural, ethnic and religious beliefs
Current therapies
Allergies
Transportation/equipment needs
Assets and challenges unique to the individual child
Other information the family wants caregivers to know about their child
Needs from family perspective
Needs from medical personnel perspective
Strengths of the family and child
Goals

Working Care Plan

The working care plan is a written framework combining the needs, concerns and desired outcomes of the patient, family and Medical Home team along with the medical treatment plan. These plans range from an organized note written during a visit, to a more detailed plan of care developed during a meeting with the family and Medical Home, to a comprehensive, integrated plan developed by the child and family and a multidisciplinary team. Regardless of how complex the Working Care Plan is, families must be the center of the process in order to accomplish a successful care plan.
The critical components of the working care plan include:
A prioritized list of needs, concerns and desired outcomes
Medical, educational and social information pertinent to the identified need, concern or desired outcome
A plan/intervention for each need, concern or desired outcome
The person(s) responsible for each intervention
The due date for the intervention to be completed and/or re-evaluated
Additional examples of care plans can be found at the American Academy of Pediatrics' Medical Care Plans / Assessment Forms.

Emergency Treatment Plans

Sometimes the Medical Summary includes emergency information (so it functions as both the summary and the emergency plan). Some practices prefer a separate Emergency Treatment Plan for children with recurrent life threatening events. This plan can include baseline vital signs, lab and diagnostic tests, current medications and therapies. The family can keep this information readily available by keeping it on the fridge at home or putting it in a small container that stays with the child’s gear (wheelchair, backpack, etc). As electronic medical records improve the ability to share information, emergency plans will be easily shared among care providers in different settings.

Implementation

The next step is to implement the care plan. Hopefully while you developed the Working Care Plan, you listed discrete tasks, timeframes to complete these tasks, and names of the people who will carry out these tasks. The care coordinator organizes and assists the family with resources, referrals, and coordination of care with specialty physicians, schools, and other agencies. The care coordinator also assists the primary care provider in tasks necessary to implement the care plan.

Evaluation

Periodically reevaluate the plan of care and address new needs. Keeping the medical summary updated involves a continual process of reassessing by gathering information and input from a variety of sources. Again, family-centered care is critical to the ongoing success of all aspects of their child’s care, and the child and family should be paramount to this process.

Authors

Contributing Author: Mindy Tueller, MS - 2/2015
Reviewing Authors: Alfred Romeo, RN, PhD - 4/2008
Barbara Ward, RN BS - 11/2006
Content Last Updated: 11/2017