Care Coordination


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. Within this resource is guidance on how to conduct a needs assessment and how to develop components of a written plan of care that includes any or all of these three parts:
  1. medical summary
  2. working care plan, and
  3. emergency treatment plan
Periodically refer back to this section of the Medical Home Portal to consider expanding aspects of care coordination as you broaden your professional role.

Key Resources for Care Coordinators

What resources are needed by CYSHCN?
An individual needs assessment should be completed with each child/family to identify the resources that are required. It is important to be aware of parental readiness for information. Timing is everything when interacting with people who are in crisis. Resources and services may come from a variety of sources, including federal, state, regional, and community or “local.” These resources may be publicly or privately funded.
Where do I locate resources for children and families?
In addition to those found in the Medical Home Portal (local service providers are listed for the six partner states in the Services Directory and many informational links are in the Other Resources tab), most national and many state and local resources can be found on the internet. These resources may provide information about government benefits, state programs funded by the federal government, and national and state advocacy efforts. Many times asking parents of children with special health care needs, social workers, case managers, and state and community organizations can identify a wealth of resources.
The following Resources list emphasizes key resources for care coordinators to know and access routinely:


Information & Support

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

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

Official U.S. government site for Medicaid services.

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:

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


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: November 2017; initial publication: October 2017
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