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About >> Care Coordination
Care Coordination
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.
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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.
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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.
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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.
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Evaluation - Periodic evaluations to reassess the plan of care and address new needs are performed continually.
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 families with special health care needs?
Identification of CSHCN 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.
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; and
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Care Coordinator Job Description.
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.
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.
Children with Special Health Care Needs (CSHCN), 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 CSHCN 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.
Examples of Medical Summaries:
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 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.
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 and Medical Necessity, Part 2;
- 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.
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 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.
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:
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www.govbenefits.gov
Free, confidential tool that helps you find government benefits children/families may be eligible to receive. Extensive.
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Medicaid
Official U.S. government site for Medicaid services.
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Medicare.gov
Official U.S. government site for Medicare services.
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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.
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www.disAbility.gov/
Users can learn about what services the government can provide. Comprehensive federal web site of disability-related government
resources.
- Advocate groups:
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Family Voices
A national, grassroots clearinghouse for information and education concerning the health care of children with special health
needs.
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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.
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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.
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www.geneticalliance.org/
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.
- Mental Health:
- Professional organizations:
- Other Resources:
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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.
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Care Notebook
Track your child's care, health, and other information in this care notebook with pages from 10 different states.
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Care Notebook
Track your child's care, health, and other information in this care notebook with pages from 10 different states, PDF version.
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.
What resources are needed by CSHCN?
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 the team may need to know are:
- Government insurance and benefits programs:
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Voices for Utah Children
User friendly web site provides information and tools you can use to find:
* The Utah KIDS Count Project collects and publishes statistics that measure the status of children in Utah.
* Use the Eligibility Wizard to see if your family qualifies for assistance and how to receive it.
* Learn more about issues and elected officials and effect change through web-based grassroots efforts.
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Utah's CHIP Program
Web site for CHIP: the Children's Health Insurance Program, a state health insurance program for children of working families.
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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.
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Utah Department of Human Services- Division of Services for People with Disabilities
Description of programs and services. Important for all families of children with special needs to be aware of this service-
the sooner, the better due to the waiting list.
- Utah government:
- State Title V programs for CSHCN:
- Advocate / support groups:
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Internet Resource for Special Children
Directory of useful information and links.
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State Family Council
Councils are families with members that have disabilities who join together to educate and support one another. Excellent
for parent-to-parent support and resources. The mission of the State Family Council is to improve the quality of life for
people with disabilities and their families.
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Utah Parent Center
A statewide nonprofit 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 at the Center are primarily parents of children and youth with disabilities. Information on support and advocacy for
families of children with special health care needs.
- Early intervention programs:
- Public education:
- Community resources:
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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.
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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.
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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.
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Diversity Outreach List
Includes listings of bilingual mental health providers, walk-in clinics for people with no insurance, and Hispanic resources.
- Mental health resources:
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Anxiety and Depression
Medical Home newsletter from June 2006 that provides information about mental health issues and resources.
- Dental resources:
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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.
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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.
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Start Seeing Teeth
Medical Home newsletter from July 2005 that provides information about oral health issues and resources.
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Salt Lake County Dental Resources Guide 2007
Listing of dental resources in the Salt Lake City area for families without insurance or with public insurance.
- Professional organizations:
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