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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Pioneer Resources

A non profit agency in Muskegon and Holland offering a wide array of individualized supports for persons with disabilities as well as seniors. Pioneer Resources provides: Supported Housing, Transportation Services, Employment & Training Opportunities, Recreational Programs & Camps, Autism Services, Senior Programming, and Low Income Housing.
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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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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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Pacer Center

The Pacer Center offers several programs for children with disabilities and mental health challenges including a parent information center, a national bullying prevention center, a health information center, a technology center, and newsletters and publications.
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The Catalyst Center

The Catalyst Center is a national center dedicated to improving health care coverage and financing for Children and Youth with Special Health Care Needs (CYSHCN). The center works with families and other stakeholders to promote strategies to cover more kids, close benefit gaps, pay for additional services, and build capacity. Includes resources for families and professionals.
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