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Toolkits for Children and Youth with Special Healthcare Needs

Welcome to the Children and Youth with Special Healthcare Needs Toolkits.

The tips and tools presented here were collected as part of learning collaboratives that were funded by the Maternal and Child Health Bureau (MCHB) at the Health Resources and Services Administration (HRSA) in the U.S. Department of Health and Human Services. Through learning collaboratives such as the Improving the System of Care (ISC) for CYSHCNs Collaborative, the Newborn Hearing Screening Learning Collaborative, and Project ACCESS (Epilepsy), NICHQ and the MCHB developed a successful framework for partnerships among state Title V leaders, clinical teams and families in quality improvement work to assist CYSHCNs and their families. These collaboratives identified and tested a number of tools that families and providers could use to support quality improvement within systems of care. Families initiated and led a number of “small tests of system change” throughout these collaboratives, including testing of communication tools such as the Family Newborn Hearing Screening Roadmap, and the use of care notebooks and seizure action plans. These projects also tested ways to improve links with the medical home such as ensuring correct identification of the PCP prior to discharge from the birth hospital, and gaining families’ permission to share intervention data with their PCP.

Click HERE for a full introduction to the toolkits

We have divided the most promising tips and tools developed in the ISC collaboratives into a series of toolkits. Please click on the links to access the toolkit most relevant to your work. Many of these tools and tips are relevant for all CYSHCNs, not just those with epilepsy or hearing loss. Please explore all of our toolkits, and let us know where we can make improvements. We hope you find these tools useful and invite you to provide feedback to Karen Errichetti, Senior Project Manager for Evaluation, at kerrichetti@nichq.org.

Toolkits for Providers:

Providers Serving Children with Epilepsy

Providers Serving Children with Hearing Loss

Toolkits for Families:

General Tools and Tips for Families of Children and Youth with Special Healthcare Needs

Families of Children with Epilepsy

Families of Children with Hearing Loss

Toolkit for Newborn Hearing Screening (2005):

Newborn Hearing Screening Toolkit (2005)


The materials assembled in these toolkits were developed over the course of several collaborative projects funded by the Maternal and Child Health Bureau (MCHB) Division of Services for Children with Special Health Needs at the Health Resources and Services Administration (HRSA) including cooperative agreement #U23MCO3889 and the following contracts: HHSH240200735007C, HHSH240200535016C and HHSH250201000021C

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