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Care Coordination

Overview

"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
This process includes assessing, planning, implementing, and evaluating options and services to meet the child and family's individual needs. Care coordination is a vital component of the medical home. Building a sense of trust between families and the medical home and responding to their needs in a timely and coordinated manner is essential. Care coordination within a practice will:
  • Facilitate access to services;
  • Promote continuity of care;
  • Promote families with support;
  • Improve health, developmental, educational, vocational, psychosocial and functional outcomes;
  • Maximize efficient and effective use of resources.
Practice-based care coordination, deliverd by the Medical Home team, is the focus of this page. Children with complex conditions may have multiple individuals or agenices coordinating their care – insurance company case managers, public health agency care managers, charitable organization health navigators, etc. Parents often feel like they need to coordinate their coordinators, a need the Medical Home could strive to minimize.

The Care Coordination Process

  • Assessing and Identifying Needs - Activities performed by a care coordinator are based upon a comprehensive assessment that includes a psychosocial assessment of the child and family. Identification of needs is the first step in the care coordination process. Develop and use an assessment tool which will assist in gathering the information you will need to develop a plan of care.
  • Developing a Plan of Care - After identifying the needs, a plan of care is developed with the family and goals and outcomes discussed. The care coordinator may clarify with the family which action steps the family will address and which will be addressed by the care coordinator.
  • Implementation - The plan is implemented and actions are taken to work towards the desired outcomes. Identified service providers and programs all work towards fulfilling the needs of the family. The care coordinator organizes and assists the family with resources, referrals, coordination of care with specialty physicians, with schools and other agencies.
  • Evaluation - Periodic evaluations to reassess the plan of care and address new needs are performed continually.

Questions and Answers about Care Coordination

Who needs care coordination?
Children and families with multiple needs and those that require multiple services, providers and resources are usually a good place to start. Examples of children and families with multiple needs and services include:
  • Children who are newly diagnosed;
  • Families 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;
  • 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; and
  • Families who request assistance coordinating their child's care.
What are the benefits of having a designated care coordinator in a medical home?
  • Maximizes the opportunity to get to know the families and provides the opportunity for someone in the practice to become an "expert" in community resources and government programs;
  • Promotes coordination of specialty and ancillary services by having a designated person in the practice for specialists, hospitals and home health agencies to call; and
  • Provides the opportunity to learn from families and to pass along what has been learned to other families within the practice.
How does a practice identify children and youth and families with special health care needs?
Identification of CYSHCN within the Medical Home will facilitate planning care and referrals to needed services. Additionally, the identified child and family can be followed for the purpose of monitoring and improving the quality of their health care. The definition of a child with special health care needs by the Maternal and Child Health Bureau is as follows:
  • "Children with special health care needs are those who have or are at elevated risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount not usually required by children."

Other definitions may include:
  • An expected duration of the condition;
  • Presence of functional limitations; and
  • A need for increased use of services or devices.

The National Center of Medical Home Initiatives for Children with Special Needs has additional information to help in Identifying Children with Special Needs(PDF Document 21 KB).
What to call "it"?
The term "care coordination" is used interchangeably throughout many different systems and organizations. You may hear have heard the terms case manager, service broker or services coordinator. Regardless of the term, the concept of care coordination is to help families link to supports and services to meet their individualized needs.
Who uses care coordinators in their agencies?
Care coordinators are used throughout the healthcare arena in many different ways. Their expertise depends on the role, type of care coordination offered by the organization and the responsibilities delegated to the individual. Clinical experience is imperative and the greatest asset is knowledge of community resources and how to access them. Examples of the various roles of a care coordinator:
  • Healthcare Payer or Insurance - Validates eligibility for insurance and benefits limitations, exclusions, co-payments and deductibles. May assist with exploring other alternative funding programs.
  • Home Health Agencies - Explore options and other available services within the agency and determine stability or readiness for the next level of care or discharge. Provide community resources and patient education.
  • Hospital-based Care Coordinators /Discharge Planners - Function as an integral part of the healthcare team and work collaboratively with other care coordinators, the family and other providers on details for discharge.
  • Medical Home Care Coordinators (Medical focus, family approach) - Essential component of the Medical Home Team. Work with the primary care physicians and family advocates to facilitate access to services, promote continuity of care, provide families support, improve functional outcomes and maximize efficient and effective use of resources.
  • Government for Administration of Programs - Determine eligibility for government programs, work closely with the family, other health care providers and the care coordinators in meeting the needs of the child and family. Authorize services and provide referrals and resources.
What are some examples of day-to-day activities a care coordinator may perform?
  • Answering phone calls from families, addressing their needs, seeking information and solutions to problems;
  • Handling prescription refills, coordinating home care services and medical equipment and supplies;
  • Coordinating coverage with insurance and/or Medicaid. Assist with obtaining prior authorization for services, equipment and supplies;
  • Assessing needs, developing and implementing the plan of care and evaluating effectiveness of interventions and other needs;
  • Assisting families and providing tools (binders, forms, care plans) to help with organizing and tracking medical information about their child;
  • Providing referrals and resources;
  • Helping coordinate school programs. Attending and providing input for Individual Education Plans (IEP) meetings;
  • Advocating for families;
  • Conducting home visits when feasible;
  • Helping with transition issues;
  • Linking families with other families for support;
  • Providing education.
See the sample Care Coordinator job descriptions in the Resources section below.
How do we communicate within our practice?
  • Planned, weekly case conferences with the Medical Home Team;
  • Develop and use forms to capture important information that needs to be shared among the Medical Home Team; and
  • Spend time in the office and be available for families and team members.

Family Involvement

Quote from Gina Pola-Money, parent - "Remember that the child and family live minute by minute in the world of special health care needs. The family's involvement and agreement is crucial to the coordination of services that will help ensure that the child receives quality health care and is able to excel in life to the best of their ability."

Key Elements of Family-Centered Services:
  • Recognizing that the family is the constant in a child's life, while the service systems and personnel within those systems fluctuate;
  • Facilitating family/professional collaboration at all levels of service provisions: Services for an individual child; program development; implementation, and evaluation; and policy formation;
  • Honoring the racial, ethnic, cultural, and socioeconomic diversity in families;
  • Recognizing family strengths and individuality and respecting different methods of coping;
  • Sharing with parent, on a continuing basis and in a supportive manner, complete and unbiased information;
  • Encouraging and facilitating family-to-family support and networking;
  • Understanding and incorporating the developmental needs of infants, children, and adolescents and their families into service delivery systems;
  • Implementing comprehensive policies and programs that provide emotional and financial support to meet the needs of families. Helping to structure the system that best fits the family's needs instead of trying to fit the family into the system; and
  • Designing accessible service delivery systems that are flexible and responsive to individual family identified needs.
Child and Family Involvement
Involve the child into all decisions when appropriate. Listen to their wants, needs, and fears with an open mind.
  • Families participate in team decision-making regarding health care services and the development of the health care plan.
  • Expectations and roles of all team members are defined.
  • The family provides information regarding the child's strengths, needs, and culture, and feedback regarding services received.
  • Interpreter services are available if needed.
Tips and Ideas for Family Involvement
  • Ask the family how care coordination might help them. Offer a brief explanation or suggestions, if necessary.
  • Ask the family about past experiences have been with care coordination - what they liked or helped and what didn't.
  • Ask the family to tell you what they know (or wish they knew) about the child's condition so that you know where and how to begin giving information. You may be surprised to learn what families do or do not know.
  • Ask the family where or how they've learned about their child's condition.
  • Ask the family how they cope or handle stressful situations. Ask them what causes them the most stress. Learn what their coping mechanisms are so that you can assist them in identifying and redirecting negative response behaviors.
  • Ask the family if they would be interested in meeting or just talking with another family who has a child with a similar condition.
  • Ask if they have ever tried to become involved with a support group for families. If not, ask what stopped them from participating. Some families prefer one-on-one discussion vs. group participation. Always obtain family consent prior to giving out family's name and telephone number as a resource/support contact.
  • Ask the families what they like about the current health care delivery system. Then ask what things they would like to see changed. Listen and offer support and information about how the system works. Sometimes understanding why things are structured the way they are diffuses resentment towards the system. Or, there may be changes that you can clarify or accommodate, making the family more receptive to your partnership.
  • Ask about their child's developmental process. Parents like to hear that their child is doing well developmentally. If their child is not developmentally appropriate for age, ask what information they have regarding their child's development, and encourage discussion with the primary care provider, if appropriate. Find out what information and resources they may be getting from other service providers and programs that can assist them in understanding their child's developmental needs.
  • Keep the primary care provider informed of important health, developmental or psychosocial issues. By doing so you will create a working partnership between the family, yourself and the primary care provider (PCP/Medical Home). Remember that "short and to the point" is preferable.
  • Give the family a copy of a recent family-focused publication, such as the Exceptional Parent which can be purchased at Barnes & Noble or ordered on the internet.

For more information on families and family involvement, visit The Institute of Family-Centered Care web site.

Assessment

Children and youth with Special Health Care Needs (CYSHCN), their families, physicians, and community providers all benefit from having a comprehensive assessment and written plan of care that includes three components: the assessment/medical summary, emergency treatment plan, and working care plan. The child's Medical Home can decide to use one or all three of these components.

The assessment phase is vital to the care coordination process as the information obtained becomes the basis for the interventions in the plan of care.

Assessing Needs
  • The assessment meeting is best done in person but can be by phone. In an effort to obtain the information some care coordinators have sent the forms home for families to complete and return.
  • Assessments involve a continuous process of gathering information and require input from a variety of sources.
  • Assessments for care coordination of CYSHCN not only focus on the medical needs but also on the family, psychological, socioeconomic and cultural needs.
  • The child with special needs together with the family, and Medical Home review health status and discuss problems and needs.
  • The medical summary is compiled from the information gathered at the assessment visit.
Medical Summary
When developing a form to be used to collect data, keep these elements in mind:
  • 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; and
  • Goals.

Plans of Care / Implementation / Evaluation

Emergency Treatment Plan
The medical summary can include emergency information and can function as both the summary and the emergency plan. Some practices like a separate plan for children with recurrent life threatening events. This plan can include baseline vital signs, lab and diagnostic tests, current medications and therapies. The Emergency Health Information Sheet(Word Document 133 KB) is an example of an emergency treatment plan.
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. The plan can be a written, organized note developed during a visit, a more detailed plan of care developed during a meeting with the family and Medical Home or a comprehensive, integrated plan developed by the child and family and a multidisciplinary team.

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; and
  • The due date for the intervention to be completed and/or re-evaluated.

Families must be the center of the care coordination process in order to accomplish a successful care plan.

Examples of various approaches to working care plans (you are welcome to use these as they are or improve them to fit your practice):
Additional examples of care plans can be found at the American Academy of Pediatrics' Medical Care Plans / Assessment Forms page.

Advocacy

What is an Advocate?
An advocate is defined as "one who pleads the cause of another." Advocacy can be for an individual or for a group of individuals.
Who is an Advocate?
Any individual or group can be an advocate. Examples of advocates include parents, physicians, nurses, clergy, social worker and ANYONE that meet the definition.
Examples of Advocacy in Action:
  • Individual:
    • Completing of a Letter of Medical Necessity for a child to obtain an insurance authorization for needed equipment or procedure, see Medical Necessity, part 1(PDF Document 71 KB) and Medical Necessity, Part 2(PDF Document 173 KB);
    • Participating in Individualized Education Program (IEP) meetings at a child's school; and
    • Parent Advocates within the Medical Home reaching out to touch base with a parent of a child with special health care needs.
  • Group:

In the Medical Home Model, all team members have the role of an advocate.

Funding

How can a Medical Home afford a Care Coordinator?
There are several different approaches to funding a care coordinator including:
  • Utilization of care coordinator codes, see the Medical Home Practice-Based Care Coordination Workbook;
  • Utilization of physician coding that reflects actual practice
  • Using creative role definitions within the present staff;
  • Creating partnerships with large organizations, such as hospital systems or insurance companies, that will support care coordination activities; and
  • Seeking grants and foundation funding.

Learning about National Resources

Where do I locate resources for children and families?
National resources can be found on the internet. These resources may provide information about government benefits, types of state programs that are funded by the federal government, and national advocacy efforts.

Resources the team may need to know are:
  • Government insurance and benefits programs:
    • www.govbenefits.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.gov
      Official U.S. government site for Medicare services.
    • Social Security Administration
      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.gov
      Users can learn about what services the government can provide. Comprehensive federal web site of disability-related government resources with links to state information.
  • Advocate groups:
    • Family Voices
      Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care. Family Voices is national non-profit family-led organization with state affiliates in 42 states.
    • Parent to Parent USA
      A national non-profit 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 for support; 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.
  • Mental Health:
  • Professional organizations:
    • 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.
  • Other Resources:
    • MCH Library Community Services Locator
      This maternal and child health resources page from Georgetown University provides links to organizations that provide statewide or nationwide services for families; also provides links to web sites that provide listings of local services.
    • Care Notebook(Word Document 2.7 MB)
      Track your child's care, health, and other information in this care notebook with pages from 10 different states.
    • Care Notebook (UT Dept. of Health)(PDF Document 467 KB)
      Track your child's care, health, and other information in this care notebook with pages from 10 different states, PDF version.

Learning about Resources in Your State

Where do I locate resources for children and families?
State and local resources can be found on the internet also. Many times asking parents of children with special health care needs, social workers, case managers, state and community organizations can identify a wealth of resources. For lists of resources in your state, see "Resources" below.

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

Information & Support

The resources below include government insurance and benefits programs; state governments; state Title V programs for CYSHCN; early intervention programs; public education agencies; community resources agencies; mental health resources; dental resources; professional organizations; and advocacy and support groups.

For Professionals

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

Utah's CHIP Program
Web site for CHIP: the Children's Health Insurance Program, a state health insurance program for children of working families.

Children's Health Insurance Program (CHIP)
This is the official U.S. government site for CHIP services; information includes eligibility, enrollment and general information about health insurance for kids.

Division of Medicaid and Health Finance
Utah Medicaid's official website. Once a child is 18 years of age, s/he is eligible for medicaid independent of the family income.

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

Utah State Legislature
Official State of Utah web site with links to the Senate, House of Representatives, and other legislative information.

State Government Links
Hosted by the federal government, this web site provides links to official web sites of states and territories of the United States.

Utah Bureau of Children with Special Health Care Needs
Official site of the Utah Department of Health provides descriptions of its services and programs including infant screen, family resources, eligibility, clinics.

Topical Resource Guide for Families of CSHCN(Word Document 3.7 MB)
A 429-page Resource Manual for Utah CSHCN and their families, completed in 2006.

State Title V Contacts
Click on your state in the list and scroll down the page to find the contacts for the Title V program and/or the program focused on children with special health care needs (CSHCN); from the U.S. Department of Health and Human Services, Health Resources and Services Administration.

Baby Watch Early Intervention Program
Utah's network of service for children ages birth to three with developmental delays or disabilities.

State Contacts Part C, Early Intervention
From the National Early Childhood Technical Assistance Center, a list of state contacts for Early Intervention (Part C) agencies.

Special Education - Utah
Official site of Utah State Office of Education's Special Education program.

Utah School Districts
Listing of links to school districts in Utah.

Utah 2-1-1
A free information and referral line for health, human and community services. 2-1-1 provides information and referral on topics such as emergency food pantries, rental assistance, public health clinics, child care resources, support groups, legal aid, and a variety of non-profit and governmental agencies. The online directory provides anytime access to the same information.

Salt Lake County Parks and Recreation Adaptive Programs
Adaptive recreation programs designed for individuals with special needs, however, everyone is welcome to participate in any program or class. This site lists socialization activities, classes, sports, and other adaptive programs in the Salt Lake Valley.

Child Health & Safety Information
A website by Primary Children's Medical Center that offers links to brochures in English and Spanish on everything from car seats to child abuse prevention.

Diversity Outreach List(PDF Document 95 KB)
Includes listings of bilingual mental health providers, walk-in clinics for people with no insurance, and Hispanic resources in Utah.

Anxiety and Depression(PDF Document 248 KB)
Medical Home newsletter from June 2006 that provides information about mental health issues and resources.

National Institute of Mental Health
The Child and Adolescent Mental Health menu for National Institute of Mental Health.

Regence Caring Foundation for Children
A non-profit organization that provides free dental care to children in Utah and Idaho; care provides cleaning, x-rays, and more-extensive treatments.

Oral Health Program
The Oral Health Program at the Utah Department of Health provides information about fluoride supplements and sealants for children; information about best practices; links to information about local water source fluoride levels; and links to other resources.

ASTDD: Oral Health for CSHCN Best Practices
The Association of State and Territorial Dental Directors (ASTDD) provides the best practices report "Oral Health of Children, Adolescents, and Adults with Special Health Care Needs."

Start Seeing Teeth(PDF Document 244 KB)
Medical Home newsletter from July 2005 that provides information about oral health issues and resources.

Utah Chapter, American Academy of Pediatrics
American Academy of Pediatrics chapter site provides information about meetings, conferences, news, and other chapter activities.

American Academy of Pediatrics Chapter List

American Academy of Family Physicians Chapter List

Practice-based Care Coordinator sample job description (Word Document 28 KB)
The care coordinator works within the context of a primary care medical home, from a team approach, and in continuous partnership with families and physicians to promote: timely access to needed care, comprehension and continuity of care, and the enhancement of child and family well-being.

Care Coordination Curriculum (Boston Children's)
This page describes and links to an extensive curriculum for training practice-based care coordinators; developed by Richard Antonelli, MD and others at Boston Children's Hospital.

Health Advocate sample job description(Word Document 29 KB)
The role of the Health Advocate is to provide exceptional patient care both clinically and by creating a customer/patient service experience that is phenomenal for each and every patient visit.

Pediatric Patient Care Coordinator sample job description(Word Document 29 KB)
A Pediatric Patient Care Coordinator is an unlicensed individual working in an appropriate healthcare setting to assist with client care coordination. The major focus of care coordination is to ensure the client is receiving the most appropriate care to meet both their physical and psychosocial needs.

Genetics in Primary Care Institute (GPCI)
Increases collaboration in the care of children with known or suspected genetic disorders. Includes health supervision and management guidelines, and other useful resources; a collaboration among the Health Resources & Services Administration, the Maternal & Child Health Bureau, and the American Academy of Pediatrics.

For Parents and Patients

Support

Utah Family Voices
Local chapter of a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs.

Family Voices
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care. Family Voices is national non-profit family-led organization with state affiliates in 42 states.

General

Utah Parent Center
This statewide nonprofit organization, founded in 1984, provides training, information, referral and assistance to parents of children and youth with all disabilities, including physical, mental, hearing, vision, learning, behavioral, and emotional. Staff consists primarily of parents of children and youth with disabilities.

Center for Parent Information and Resources
This site includes links to local Parent Centers which serve as resources for education and training for parents of children with disabilities, as well as listing local conferences, support groups, autism information, advocacy tips, and suggestions for finding school and other local services. Funded by OSEP.

Internet Resource for Special Children
Directory of information for parents and medical providers caring for children with disabilities.

Authors

Authors: Carrie Carter, RN - 12/2003
Kathy Heffron, RN - 12/2003
Gina Pola-Money - 12/2003
Reviewing Authors: Alfred Romeo, RN, PhD - 4/2008
Barbara Ward, RN BS - 11/2006
Content Last Updated: 8/2013