What is the COE CPK Approach to Care?

Families of children and youth with special health care needs have strengths, priorities, and goals that include all the medical realities of care for these children. With funding from the Lucile Packard Foundation for Children’s Health, in collaboration with providers and families, the Child and Adolescent Health Measurement Initiative (CAHMI), an initiative of Innovate Health, has developed a model and tools for engaging families of children with special health care needs that were pilot tested with families and provider teams. The COE CPK Approach to Care build on this foundation of strengths and priorities by engaging families as partners in developing and implementing plans of care.

The COE CPK Approach to Care is a three-step, whole child approach for families of children and youth with special health care needs. This model of care:

• Engages families in the care of their child with special health care needs
• Promotes partnerships between families and care teams to work together and build a shared plan of care based on family strengths, priorities, needs, concerns, goals, and their social and environmental context
• Includes the CPK engagement tools, including the Family Foundations of Care (FFC) Planner, the Family Foundations of Care (FFC) Plan, and CPK Shared Planning Meeting

The CPK process includes three ongoing steps:

1. Families take 15-30 minutes to reflect and share their needs, wishes, and priorities using the Family Foundations of Care (FFC) Planner.
2. Responses from the FFC Planner are transferred to the Family Foundations of Care (FFC) Plan through partnership between a family and their child's provider(s). Families and providers pick priorities, goals, and action steps.
3. The FFC Plan is used on an ongoing basis during visits with the child's provider(s) as a starting point for more comprehensive shared care plans. The FFC Plan can be updated periodically or as needed as new priorities arise or changes are made to a child's care. CPK recognizes that this family life is not just defined by one provider visit after another. Rather, the CPK presents opportunities to see the interactions between the medical and non-medical pieces of daily life. The CPK also creates a central information location to make sharing easy and efficient across a variety of providers, including doctors, therapists, and others.

Go to the CPK website

Read the CPK 2-pager

Watch an overview video on the CPK

The CPK is also part of the Cycle of Engagement (COE) model of care.

Learn more about the Cycle of Engagement

Go to the COE website

The Children with Special Health Care Needs (CSHCN) Screener is a 5-item screening tool to identify CSHCN based on the definition provided by the federal Maternal and Child Health Bureau (MCHB).

The MCHB defines CSHCN as: “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” The CSHCN Screener focuses on the health consequences a child experiences as a result of having an ongoing health condition rather than on the presence of a specific diagnosis or type of disability.

The screener can either be self-administered or given in a telephone interview as part of a parent/caretaker survey. It takes about 1 minute to complete. The CSHCN Screener is currently used in many national surveys and is available in English and Spanish.

CAHPS Supplement

The CAHMI, an initiative of Innovate Health, and the Consumer Assessment of Healthcare Providers and Systems (CAHPS©) project team co-developed a 31-question supplement to be integrated, along with the CSHCN screener, into the CAHPS® 2.0H Child Questionnaire or other core general patient experience survey. Four domains of care of particular importance for children with chronic or special health care needs are assessed:

• Access to prescription medications
• Access to specialized services
• Family-centered care
• Coordination of care

CSHCN Screener Resources

Download the CSHCN Screener

Read our paper: Taking Stock of the CSHCN Screener:
A review of Common Questions and Reflections

Access NSCH Codebooks on
the CAHMI’s Data Resource Center for Child and Adolescent Health for measure
specifications of the use of the CSHCN Screener in the NSCH

The CSHCN Screener was developed in partnership with: The David and Lucile Packard Foundation / The Robert Wood Johnson Foundation / Stephen Blumberg, Julie Brown, Treeby Brown, Paul Cleary, Christine Crofton, Susan Epstein, Jack Fowler, Shirley Girouard, Maxine Hayes, John Hochheimer, Charles Homer, Alice Lind, Margaret McManus, Merle McPherson, John Neff, Paul Newacheck, Debra Read, Donald Steinwachs, Ruth Stein, Joe Thompson, Deborah Klein Walker, and Nora Wells.

The Young Adult Health Care Survey (YAHCS) is a teen survey that assesses whether young adults (ages 14 to 18) are receiving nationally recommended preventive services during a well-care visit. Nine quality measures of care can be gathered and scored using the YAHCS, which measure the presence, helpfulness and experience of preventive screening and counseling in a private and confidential setting.

The YAHCS also gathers information useful for quality improvement and community assessment, including questions about:

• Teen health (items derived from the Child Health and Illness Profile-Adolescent Edition (CHIP-AE©) about health status and exercise)
• Teen participation in risky behaviors (items derived from the Center for Disease Control’s Youth Behavior Surveillance Survey)
• Teen’s health care utilization (last regular or routine care visit, place of regular or routine care, whether the teen filled out a checklist about his/her health at the health care provider’s office)
• Access issues (problems getting necessary care)

Learn more about the development and testing
of the YAHCS Go to the survey instrument

The YAHCS is endorsed by the National Quality Forum (NQF) as a valid measure for system and plan-level assessment. The YAHCS has been implemented nationally and in at least 5 state Medicaid programs, with over 10,000 surveys gathered. This survey can be administered by mail or phone and is available in both English and Spanish. Please contact the CAHMI at info@cahmi.org to receive YAHCS implementation materials, and let us know how you’re using the YAHCS.