Youth Engagement

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Charting the LifeCourse Toolkit

This toolkit is designed to help caregivers understand the value of respite, learn from real life examples, and create a respite plan that enhances the lives of all family members. It’s meant for family caregivers of a child or adult with a disability, chronic condition, or functional limitation (or professionals who work with family caregivers). The toolkit, which is available in English and Spanish, is built upon the Charting the LifeCourse Framework, which was created BY FAMILIES to help individuals and families of all abilities and all ages: (a) develop a vision for a good life, (b) think about what they need to know and do, (c) identify how to find or develop supports, and (d) discover what it takes to live the lives they want to live.

Involving Your Child in the Decision-Making Process

Shared Decision-Making and Children with Disabilities: Pathways to Consensus, a clinical report published by the American Academy of Pediatrics (AAP), states that children, when cognitively able, should be involved in decisions about their care. Too often this is mistaken by parents and professionals to only mean “the big decisions,” but research shows that inclusion in smaller decisions as well can have a significant impact over time.

Presenting children with information—appropriate for their developmental age—can help in their understanding of their condition and treatments, reduce fear, and enhance self-confidence.

This article shares multiple tips for parents to ensure that their child is appropriately informed and involved. Read the article here.

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