Home > For Physicians & Professionals > Building a Medical Home > Care Coordination
Care Coordination
Overview
- 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.
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
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.
- 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.
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.
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.
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.
- 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; and
-
Care Coordinator Job Description
(
191 KB)
.
- 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
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.
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.
- 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
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.
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
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 (
133 KB)
is an example of an emergency treatment 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):
-
Pre-Visit Focus Sheet
( 38 KB)
-
Pre-Visit Focus Sheet
( 42 KB)
-
Working Care Plan
( 39 KB)
-
Working Care Plan
( 46 KB)
-
NICHQ Medical Home Learning Collaborative - Actionable Plan of Care
( 27 KB)
-
Hitchcock Clinic - Concord Pediatric Care Plan
( 37 KB)
-
Gifford Medical Care Plan Part 1
( 79 KB)
-
Gifford Medical Care Plan Part 2
( 96 KB)
Additional examples of care plans can be found at the American Academy of Pediatrics' Medical Care Plans / Assessment Forms page.
Advocacy
An advocate is defined as "one who pleads the cause of another." Advocacy can be for an individual or for a group of individuals.
Any individual or group can be an advocate. Examples of advocates include parents, physicians, nurses, clergy, social worker and ANYONE that meet the definition.
- 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
( 71 KB)
and Medical Necessity, Part 2
( 82 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.
- 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
(
- Group:
- Providing community presentations at schools, community centers, or committee meetings;
- Participating in creating or supporting legislation that improves services or benefits for CYSHCN, see State Government Links; and
- Sharing information about programs that encourage the health and safety of children, such as Healthy Child Care America and Prevent Child Abuse America.
In the Medical Home Model, all team members have the role of an advocate.
Funding
There are several different approaches to funding a care coordinator including:
- Utilization of care coordinator codes, see the Tools for Coordinating Care;
- 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
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. -
www.disAbility.gov/
Users can learn about what services the government can provide. Comprehensive federal web site of disability-related government resources.
-
www.govbenefits.gov
- Advocate groups:
-
Family Voices
A national, grassroots clearinghouse for information and education concerning the health care of children with special health needs; aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. -
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
This coalition of organizations increases the capacity of genetic advocacy groups to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions.
-
Family Voices
- Mental Health:
-
National Institute of Mental Health
The Child and Adolescent Mental Health menu for National Institute of Mental Health.
-
National Institute of 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.
-
American Academy of Pediatrics
- 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
( 2.7 MB)
Track your child's care, health, and other information in this care notebook with pages from 10 different states. -
Care Notebook
( 467 KB)
Track your child's care, health, and other information in this care notebook with pages from 10 different states, PDF version.
-
MCH Library Community Services Locator
Learning about Resources in Your State
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
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.
State Children's Health Insurance Program (SCHIP)
Official U.S. government site for SCHIP services; information includes eligibility, enrollment and general information about
health insurance for kids.
Utah Medicaid
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
( 3.7 MB)
A 429-page Resource Manual for Utah CSHCN and their families, completed in 2006.
State MCH & CSHCN Contacts
From the U.S. Department of Health and Human Services, a search page to find the state contct for your Maternal and Child
Health (MCH) and Children with Special Health Care Needs (CSHCN) contacts that receive federal Title V contract funds.
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
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.
211 Info Bank
Utah's online directory provides anytime access to information about providers of basic community services such as housing,
food, and health services. It allows you to search for providers in your community.
Salt Lake County Parks & Recreation Adaptive Programs
Adaptive programs designed for individuals with special needs, however, everyone is welcome to participate in any program
or class.
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
( 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
( 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 Helath 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
( 244 KB)
Medical Home newsletter from July 2005 that provides information about oral health issues and resources.
Salt Lake County Dental Resources Guide 2007
( 1.0 MB)
Listing of dental resources in the Salt Lake City area for families without insurance or with public insurance.
American Academy of Pediatrics Utah Chapter
American Academy of Pediatrics chapter site provides information about meetings, conferences, news, and other chapter activities.
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
A national, grassroots clearinghouse for information and education concerning the health care of children with special health
needs; aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
General
Utah Parent Center
A statewide non-profit organization, founded in 1984, to provide 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. The Center provides information on support and
advocacy for families of children with special health care needs.
Technical Assistance Alliance for Parent Centers
Funded by the U.S. Department of Education’s Office of Special Education Programs (OSEP), the Alliance provides technical
assistance for state Parent Centers - Parent Training and Information Centers (PTIs) and Community Parent Resource Centers
(CPRCs). Provides links to local Parent Centers.
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: | 2/2009 |