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

The purpose of this section of the website is to provide some general tips and tools for families as they navigate the health care system. These tips come from some of the suggestions made to service providers during quality improvement learning at the Improving Systems of Care Learning Collaborative, conducted by the National Initiative for Children’s Healthcare Quality. These also may be useful to family members as they journey through life with a child with special health care needs.

To access our condition-focused Epilepsy and Newborn Hearing Screening Family toolkits, click below:

Epilepsy Family Toolkit
Newborn Hearing Screening Toolkit

General Tips for Parents
The Maternal Child Health Bureau (MCHB) defines children and youth with special health care needs (CYSHCN) as those at “increased risk for chronic physical, developmental, behavioral, or emotional conditions that require health and related services of a type or amount beyond that required of children generally.” MCHB has articulated six components of a comprehensive plan to achieve such a community based system of care:

1. Family/professional partnership at all levels of decision-making.
2. Access to comprehensive health and related services through the medical home.
3. Early and continuous screening, evaluation and diagnosis.
4. Adequate public and/or private financing of needed services.
5. Organization of community services so that families can use them easily.
6. Successful transition to all aspects of adult health care, work, and independence.

There are many family leaders who are working on aspects of these components to improve the quality of health system for other families.

You may be a family that needs some tips on creating a good relationship with your Medical Home. Click on the following links below to help ensure that good communication exists between you and your doctor.

Identify your PCP: Who is your child’s doctor?

Give your doctor more than one contact number where you can be reached

Let Your Doctor Know What Language You Would Like Information In (Spoken and Written)

Family Leadership Resources Available in All States for Children and Youth With Special Healthcare Needs 



<< Back to CYSHCN Toolkits Intro Page

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