Welcome to the CYSHCNet blog. Here we share stories and perspectives of children and youth with special health care needs (CYSHCN), their families and caregivers, and our academic researchers. Interested in sharing your story? Email us. ​​

  • Disability and Discrimination: A Call to Action for Creating Positive Change, Together

    A recent study by Dr. Stefanie Ames and colleagues sheds light on the problem of discrimination against children with complex medical needs by the medical community, emphasizing its significance for children, families, and clinicians. CYSHCNet enthusiastically applauds Dr. Ames’s efforts and appreciates the insightful commentary by Dr. Cook and colleagues, which effectively raises awareness of…

    Read more..

  • Disability, Discrimination, and Children with Medical Complexity

    New Pediatrics Study Begs the Question: How Can Knowing These Perceptions Improve Systems of Care Disability-based discrimination in health care is happening. And it results in low quality of care, limited access, and negative health consequences. A new study from CYSHCNet researcher Stefanie Ames, MD, MS, looks at the themes children with medical complexity and…

    Read more..

  • Research spotlight: Do caregivers of young people with asthma feel discriminated against?

    CYSHCNet researcher Stefanie Ames, MD, presents on social determinants of health and disparities for young people with asthma. Here’s the presentation on YouTube!

    Read more..

  • What Does True Family Partnership in Research Look Like?

    Nikki Montgomery shares her experience as program and communications manager of Family Voices AND as a parent of a medically-complex child. An expert in plain language and health literacy, Nikki is passionate about helping families and researchers come together to engage in work that matters.  Tell us about the goals you have in the role…

    Read more..

  • New Journal of Pediatrics Study Examines Colorado Medicaid’s Paid Family Caregiving Program

    Colorado allows parents to be employed as certified nursing assistants (CNAs) for their children. A new network study compared paid family CNAs providing skilled care to children with medical complexities to non-family CNAs, looking at retention and hospitalization rates. It’s a model we speculate could address workforce shortages while providing income to family caregivers. This…

    Read more..

  • Protected: Annual Meeting Recording and Documents

    There is no excerpt because this is a protected post.

    Read more..