Care Coordination

Overview

Care coordinators are an essential component of the Medical Home team. In this section of the Medical Home Portal, new and experienced care coordinators will find information, ideas, and resources to provide optimal care coordination in the Medical Home setting. Because the work of care coordinators varies in different settings, you may find some pieces are more applicable to your job than others. Periodically refer back to this section of the Medical Home Portal to consider expanding aspects of care coordination as you broaden your professional role.
Periodically refer back to this section of the Medical Home Portal to consider expanding aspects of care coordination as you broaden your professional role.

The Care Coordination Process

The care coordination process includes identifying the target population, assessing needs, planning care, implementing the care plan, and then evaluating options and services to meet the child and family's individual needs.
  • Identifying the Target Population
  • Assessing Needs
  • Care Planning
  • Implementation
  • Evaluation

Identifying 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 o 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

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. The Medical Home should 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. 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 Mapprovides 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 Medical Home team can work together to 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 1-3 documents 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. 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 Allergies
Principal diagnosis Transportation/equipment needs
Health history Assets and challenges unique to the individual child
Current problem list Other information the family wants caregivers to know about their child
Medications Needs from family perspective
Current providers/specialists/services Needs from medical personnel perspective
School placement and services Strengths of the family and child
Cultural, ethnic and religious beliefs Goals
Current therapies Needs from family and medical perspective

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.

Resources

Information & Support

Key resources include government insurance and benefits programs, advocacy groups, professional organizations.

For Professionals

www.benefits.gov
Free, confidential tool that helps you find government benefits children/families may be eligible to receive. Extensive.

Medicaid
Official U.S. government site for Medicaid services.

Medicare
Official U.S. government site for Medicare services.

Social Security Administration Application Process
Disability determinations are generally made by a disability determination service (DDS) and can take several months. However, if a child has a diagnosis that provides for presumptive eligibility, a letter from the doctor certifying the diagnosis and its severity will allow for the patient to begin to receive services for up to 6 months while the application is being processed.

Disability Resources
US Department of Labor's Disability Resources web page. See also Office of Disability Employment Policy (ODEP) homepage: https://www.dol.gov/odep/

American Academy of Pediatrics
Provides information for pediatric providers including health information; practice guidelines; publications including the journal "Pediatrics"; professional education resources; advocacy information; and links to local chapters. Also includes a Parenting Corner for families.

Commission for Case Manager Certification
Provides information about the Certified Case Manager credential, requirements, and test.

National Center for Education in Maternal and Child Health
The NCEMCH at Georgetown University maintains an extensive aggregation of print and full-text materials from projects and repositories. Search CYSHCN; Family Resources and School Resources.

Child and Adolescent Mental Health (NIMH)
Information about mental health conditions in children and adolescents, including a list of warning signs, featured videos, and health hotlines; National Institute of Mental Health.

For Parents and Patients

Support

Family Voices
A national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Locate your center or F2F HIC (Family-to-Family Health Information Center) by state on this site.

Parent to Parent USA
A national nonprofit organization that provides support to state Parent to Parent organizations; provides links to state organizations; provides a Matching Listserv to help organizations connect families to each other; and provides links to other organizations that serve families.

National Federation of Families for Children's Mental Health
A national family-run organization that provides support for local chapters; provides information for policy-makers and agencies that develop and provide services; provides training to parents and professionals to foster partnerships; and provides conferences to help improve practice.

Genetic Alliance
A nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities; their site provides access to myriad resources, services, policies, and publications.

Authors & Reviewers

Last update/revision: February 2019
Current Authors and Reviewers:
Authors: Jennifer Goldman-Luthy, MD, MRP, FAAP
Gina Pola-Money
Kathy Heffron, RN
Contributing Author: Mindy Tueller, MS
Reviewers: Alfred N. Romeo, RN, PhD
Barbara Ward, RN BS