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.

Finding Care Coordination in Rhode Island

In Rhode Island, care coordination is a collaborative process that links children and families to services/ resources in a coordinated manner to maximize the potential of Children and Youth with Special Health Care Needs (CYSHCN) and provide optimal health care. This system is facilitated and implemented through the following largest partners/payment/delivery systems:

  • Rhode Island Maternal and Child Health Bureau (MCHB) Title V Program at Rhode Island Department of Health provides care coordination oversight and policy implementation.
  • Rhode Island Executive Office of Health and Human Services (EOHHS) which oversees the state Medicaid Program and Cedar Family Centers.
  • Patient Centered Medical Home-Kids Program (PCMH-Kids) through the American Academy of Pediatrics.
  • Rhode Island Department of Children, Youth and Families (DCYF) which oversees the Family Care Community Partnerships (FCCP).

Raising a child with special needs involves many systems. Parents and Caregivers as the over-arching “care coordinator” need to navigate the varying levels of care coordinator support. Eligibility criteria will determine access to Care Coordination programs.

  • Pediatric Primary Care Practices
  • Patient Centered Medical Homes Kids
  • Health Insurance Companies
  • Cedar Family Centers
  • Family Care Community Partnership
  • Diagnostic Centers and Specialty Clinics

Pediatric Primary Care and Family Practitioners can often serve as a “first stop” for many children/youth and their families when it comes to managing care among multiple providers. The Primary Care Provider office can assist families by performing initial assessments, connecting to various specialists, submission of needed referrals, and additional education regarding managing specific conditions/treatment. Many Primary Care practices in Rhode Island have gone through additional training and certification to achieve status as a Patient Centered Medical Homes. PCMH-Kids is a multi-payer, primary care payment and delivery system reform initiative that was convened in 2013 to extend the transformation of primary care to practices that serve children across Rhode Island.

Patient Centered Medical Home Kids is a primary care delivery system reform initiative that extended the transformation of primary care practices that service children/youth across Rhode Island. PCMH-Kids practices engage with health plans under agreements built around primary care practices implementing service delivery requirements and becoming patient centered medical homes that embed care coordinators to address the needs of children and families that are at high risk.

Health Insurance Care Coordination may provide members with a designated case manager who is available to assist with coordinating care services between multiple providers as well as ensuring that the service and providers utilized are covered in network by the insurance plan. Contact the number on the back of your insurance card to find out more information about benefits through your plan.

Cedar Family Centers Medicaid eligible families can access family-centered, intensive care management and coordination services through a Cedar Family Center (CFC).

Family Care Community Partnership (FCCP) Rhode Island Department of Children Youth and Families connects families to supports through community partners to address complex family concerns and needs.

Diagnostic Centers provide families with various testing, diagnosis, and assistance to develop multidisciplinary treatment plans for children/youth to facilitate appropriate level of care through multiple providers.

Specialty Health Care Providers and Clinics Specialty Health Care providers/clinics provide higher-level medical treatment, that often requires a referral from your primary care physician. Specialty care focuses on specific diseases or organ systems of the body. Multiple specialists are affiliated with the Specialty Clinics allowing for a comprehensive treatment plan. Rhode Island has several Specialty clinics for Autism, Complex Care, Cranial-Facial, Diabetes, Down Syndrome, Sickle Cell, and Spina Bifida.

Rhode Island's Early Intervention Program helps families coordinate care for children from birth to age three. Parent Consultants support families with information they need to begin their journey into the world of special needs. Lists of Early Intervention Programs


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

RI Doorways to Care Coordination (PDF Document 420 KB)
This PowerPoint presentation was created by Rhode Island Family Voices to guide parents through how to access care coordination. (RIFV 2023)

Patient-Centered Medical Homes
The Patient-Centered Medical Home is an approach to providing comprehensive primary care for children, youth and adults that facilitates partnerships between patients their personal physicians, and when appropriate, the patient’s family.

Health and Human Services ,State of Rhode Island-Children With Special Needs
Medicaid Early, Periodic, Screening, Diagnosis, and Treatment (EPSDT). If medically necessary, all children enrolled in Medicaid from birth to age 21 may qualify for additional health services and supports through the EPSDT benefit. Under the EPSDT Medicaid benefit, children with Medicaid coverage are eligible for preventive and routine health care as well as medically necessary specialized care or services.

Health and Human Services ,State of Rhode Island-Early Intervention Program
Rhode Island's Early Intervention Program promotes the growth and development of infants and toddlers who have a developmental disability or delay in one or more areas. Developmental disabilities or delays can affect a child’s speech, physical ability, or social skills.

Family Care Community Partnerships (FCCPs)
Family Care Community Partnerships (FCCPs) are the Department of Children, Youth and Families’ primary prevention resource for the state. FCCPs partner with families and communities to raise healthy children in a safe, caring environment.

Authors & Reviewers

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