Resources for Families

Why and How to Participate in Research! Learn about engaging in research as a family-advocate:

Choosing to join a research study is something you and your family can decide together. Before you make a decision, we will provide you with information about the study and answer any questions you might have.

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Resources for Families of Children with Medical Complexity and Disability

Connect with Family Voices National to learn more about child-health advocacy!

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If your child lives in Illinois, connect with The Division of Specialized Care for Children:

We partner with Illinois families and communities to help children and youth with special healthcare needs connect to services and resources.

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Learn more about Home and Community Based Service Waivers in Illinois

A waiver is a program that provides services that allow individuals to remain in their own homes or live in a community setting, instead
of in an institution. Illinois has nine HCBS waivers. Each waiver is designed for individuals with similar needs and offers a different set of services.

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Sibling Support Toolkit

PPCC and Courageous Parents Network have partnered to bring as many resources together as possible to help parents, caregivers, and medical professionals give that special attention to siblings who live and share their lives with a brother or sister with medical complexities..

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Medicaid Paid Family Caregiving for Children

This document was created in response to an overwhelming demand for resources on paid family caregiving. State laws, policies, and regulations vary greatly across the country. The information provided here reflects paid family caregiving options that are currently available or under consideration.

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