Managing & Coordinating Care

Children and youth with special health care needs often have several health care providers. This subtopic is designed to help parents become a part of their child's medical home team (see About Medical Home). Subtopics included are:

Understanding Care Coordination

"Care Coordination is a collaborative process that links children and families to services and resources in a coordinated manner to maximize the potential of children and provide them optimal health care." AAP Policy Statement - Care Coordination: Integrating Health and Related Systems of Care for Children With Special Health Care Needs. Parents and family members may play a large role in coordinating care by tracking information, communicating with different providers, and more. Parents are often the “ultimate” care coordinator for their child.

Coordination of care may also be done by a professional working in your child’s doctor’s office or elsewhere. Professional care coordinators, also known as case managers, service brokers, services coordinators, health navigators, consultants, etc., help plan or coordinate your child’s care journey, find and communicate with various providers, and otherwise assist you. Even if you have help from a professional providing care coordination, understanding how care coordination works can help you work better with that person.

Professional Care Coordination

Care coordination professionals aim to help patients and families find needed services and support and to make the process as straightforward, clear, and helpful as possible. Check out our Care Coordination information for professionals for more information.

Where do care coordinators work?

Care coordinators may be available in your primary care or specialty physicians’ offices or a hospital, or through an insurer, public health program, or non-profit organization. Good care coordination includes a knowledge of available resources and how to use them, and skill at listening to families and understanding their needs. Roles of a care coordinator could be:
  • In your Medical Home (primary care or specialist office; medical focus, family approach): works with the physicians and family advocates to help with access to services, provides family support, and maximizes use of resources.
  • At your Health Care Payer or Insurance: verifies eligibility for insurance and benefits limitations, exclusions, co-payments and deductibles; assists with special situations or appeals; may aid in finding other funding programs.
  • With your Home Health Agency: explores choices and other services within the agency and looks at readiness for the next level of care or discharge; provides resources and patient training.
  • Working as a Hospital-based Care Coordinator/Discharge Planner: works as part of the health care team and collaboratively with other care coordinators, the family, and other providers on discharge planning and follow-up services.
  • Working as a Government Program Administrator (e.g., Medicaid, Social Security): determines eligibility for government programs, works closely with the family, other health care providers, and care coordinators to meet the needs of the child. Approves services and provides referrals and resources.


Information & Support

Care Coordination in Rhode Island Care Coordination can help families and professionals access care for their child/youth with special needs. Rhode Island families often have multiple care coordinators for their child/youth that are associated with their physician office, specialty program or insurer. The complexity of care needed can make it difficult for families and professionals to be aware of changes and updates to the child’s circumstances and condition. Communication tools such as patient portals, care mapping and a Care Notebook can assist families and multiple providers maintain adequate communication.

For Parents and Patients

Authors & Reviewers

Initial publication: January 2009; last update/revision: September 2020
Current Authors and Reviewers:
Authors: Mindy Tueller, MS, MCHES
Tina Persels