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A strong connection and relationship between the child/youth, the family and the primary care provider is essential for patients with special health care needs. Management of the primary condition and prevention of secondary complications are important components of care for children and youth with special health care needs. Health promotion, treatment of minor illnesses, and maintenance of wellness are also important, although at risk of being neglected when more urgent care needs are present.
Parents are valuable partners in the care of their child or youth with special needs. Care is enhanced when the parental skills and input are validated. Parents know their child far better than others who assist in managing their care. As much as possible, parents should be given tools and permission to partner in managing their child’s care.
Chronic Care Management
- Develop a care plan with the family and child (see Provider Tools)
- Review and coordinate medications and treatments, especially when multiple providers are involved
- Provide anticipatory guidance, including expectations related to the specific chronic illness
- Address transitions (see Transition Timelines)
- At time of diagnosis
- Transitions in neurodevelopmental and educational programs
- Transition into adulthood
- Give information about their child’s condition
- Assist in accessing other sources of information
- Recognize the range of prognosis and possible outcomes for their child
- Acknowledge and build on child’s strengths
- Reinforce parent’s skills and abilities
- Validate parent’s participation in their child’s care
- Involve child, if appropriate, in their care
- Encourage knowledge of condition
- Support assent and consent to medical interventions
- Transition care tasks to child whenever possible
- Family stress
- Parent and family self-care needs
- Financial support
- Parent to Parent support
- Recognize and support family need
- Sibling support
- Give information about their child’s condition
We invite you to view the Washington Medical Home website Resources and Support pages Quick Key Contacts and Resources by County for links to local public health nurses, family resources coordinators and other service providers who can assist with with care coordination for your patients and families.
Care Coordination Toolkit from the Center for Children with Special Needs
Developed for professionals who coordinate care for children in Washington State. Includes resources for professionals, families and for teens and their families. This kit includes only resources developed with funding from the Children with Special Health Care Needs (CSHCN) Program of the Washington State Department of Health.
Care Coordination Resources and Information
From the Lucille Packard Foundation for Children’s Health Report and Implementation Guide.
Children with special health care needs have more difficulty obtaining adequate care coordination than typically developing children. An estimated 34% of CYSHCN in Washington receive care coordination, the majority of which takes place in a doctor’s office. This care coordination data monograph was created to describe components of care coordination within a medical home for these children with complex needs, based on national and state-level data.
WA State Action Care Plans
Two action care plans have been created by the Center for Children with Special Health Care Needs to provide a simple approach to tracking care coordination issues and who is responsible for action steps when caring for children with special health care needs.
Care Delivery Management Tools
Tools to assist in the coordination of care at the practice, community, and state level.
- Getting to Know Me (2 pg family-completed form introducing child)
- What’s the Plan? – One page worksheet to organize questions and concerns
- In Case of Emergency – One page form and wallet-sized form
- Teens In Case of Emergency Form
From the Utah’s Medical Home Portal, an overall description of care coordination, implementation advice, job descriptions for a care coordinator, examples of medical summaries, pre-visit questionnaires and care plans.
This packet contains information about the essentials of comprehensive care planning for children with special health care needs (CSHCN). Three distinct types of documents present medical information plans, emergency plans, and working (action) care plans. From the Medical Home Learning Collaborative led by the National Institute for Children’s Health Quality (NICHQ) and the Center for Medical Home Improvement.
Posted on the American Academy of Pediatrics website, this index of Current Procedural Codes (CPT) was originally published in November 2003 in Medical Home Crosswalk To Reimbursement. The information was developed by Margaret McManus, Alan Kohrt, Joel Bradley, and Linda Walsh in collaboration with the Center for Medical Home Improvement, the American Academy of Pediatrics, and the National Institute for Children’s Healthcare Quality. Funded by the Maternal and Child Health Bureau, U.S. Department of Health and Human Services through the Maternal and Child Health Policy Research Center. For information on the transition to ICD-10-CM see Transitioning to ICD-10.