Skills and Strategies for Healthcare Decision-Making with Children

Being a decision-maker for your own healthcare is important. Families and healthcare providers want
children to become good decision-makers. For some children this takes more support, practice, and
some special tools. Learning this skill should begin in childhood and continue into adulthood. This
guide and its resources help families and healthcare providers support children to learn the skills
they need. This resource was created in partnership with Jennifer Banna, former URLEND family trainee and
current Montana Family to Family Health Information Center Coordinator
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The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses

The Circle of Care Guidebook is intended to help Caregivers navigate through the varied experiences and challenges of rare and serious medical conditions, guided by the insights, achievements, and learnings of other caregivers and experts. The extensive array of topics covered in this Guidebook (nearly 100) underscores the many aspects of life and care that are impacted when caring for a child with a rare disease.
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Charting the Life Course Person Centered Tools

Charting the Lift Course Person Centered tools are flexible and can be used by anyone, for anything. Use them yourself or find someone that can help you explore, problem-solve, make decisions, or plan for the future. You can use the tools to capture what is important to you, plan for a life transition, set a vision, or think about how to solve any problem in your life - big or small, right now or in the future. The tools can help you to have more meaningful conversations with the people in your life.
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Child Neurology Foundation

The Child Neurology Foundation connects partners from all areas of the child neurology community so those navigating the journey of disease diagnosis, management, and care have the ongoing support from those dedicated to treatments and cures. Our expanding network of patients and caregivers, volunteers and advocates, researchers and clinicians is committed to helping one another along the path that leads to the best quality of care — and the highest quality of life—for every child. Provides tools, resources, disorder directory, peer support, and medical information.
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Centers for Disease Control Birth Defects

The CDC works to identify causes of birth defects and opportunities to prevent them. These websites have information in Spanish and specifically cover current scientific findings and public health interventions and practical information for families facing these disabilities.
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El CDC trabaja para identificar las causas de defectos congénitos y las oportunidades para prevenirlos. Estos sitios web tienen información en español y cubren específicamente los hallazgos científicos actuales y las intervenciones de salud pública e información práctica para las familias que enfrentan estas discapacidades.
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National Council of the United States Society of St. Vincent de Paul

National organization with locations associated with Catholic churches throughout the country. Assistance services are provided. For assistance, contact nearest Catholic church in your community and ask for a Society of St. Vincent de Paul Conference in the vicinity. There are also thrift stores and food pantries located throughout the nation.
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Understood

Our goal is to help the millions of parents whose children, ages 3-20, are struggling with learning and attention issues. Our programs for Families, Educators, and Young Adults focus on empowering people who learn and think differently and those who support them, offering customized, accessible resources and a compassionate community. Our Workplace program helps organizations across industries create inclusive workplaces, by developing and implementing best-in-class disability inclusion programs so they can hire, advance, and retain people with disabilities.
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Think College

Think College is a national organization dedicated to developing, expanding, and improving inclusive higher education options for people with intellectual disability. The website contains information, resources and learning materials for families and professionals.
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