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Showing posts from May 22, 2022

Helping Children Cope with Frightening News

  From Child Mind Institute "The school shooting in Uvalde, Texas makes us feel sad, angry, and powerless. Through these tragedies, our children need us to provide structure, support, and hope to help them develop healthy coping skills. Here are some important articles from our Family Resource Center: How to Talk to Kids About School Shootings Helping Children Cope With Frightening News In addition, Jamie Howard, PhD, director of the Trauma and Resilience Service at the Child Mind Institute was on today’s edition of  CBS Mornings  to give practical advice for helping kids. Dr. Howard and I later appeared on  TODAY with Hoda & Jenna  to discuss talking with our children about terrible news. But I want to tell you that this feeling of powerlessness around gun violence doesn’t just affect us. It affects our kids. In 2019, in a piece on  called “ Children Hear the Message of the Gun ," I wrote about the endless stream of shootings: "What must our children

Leadership Training Opportunity: Learn How to Advocate for Change in Healthcare

The Midwest Genetics Institute and the Center for Strategic Health Partnerships are offering a Parents Partnering for Change Leadership training, which will teach parents how to get involved in advisory boards or committees where they can help improve programs and services available. They will learn alongside other parents in this informative and interactive training. The Parents Partnering for Change training topics include: How to share your family story in an impactful way What it means to be a parent leader Building the communication skills necessary to be heard How a board of directors operates and how to work with them Designing effective meetings How to handle conflict This training is being offered specifically for families with a child(ren) between the ages of 0-18 years old, who have an identified or suspected genetic condition, or other special healthcare needs. Space is limited, and the training is open only to families living in Kentucky, Minnesota, Illinois, Ohio, Wiscons

Child Mental Health Wrapround Advisory Group Survey

The Division of Mental Health and Addiction is planning to make changes to the Child Mental Health Wraparound services training and support for the unpaid caregiver and habilitation. We are forming a small advisory workgroup made up of family advocates, state staff and providers. This workgroup will meet virtual or in-person monthly for 4-6 months. The meetings will last between one and two hours and be focused, cover specific topics, include meeting minutes and the ability for participants to make recommendations. Please complete the survey,  available by clicking here,  if you are interested in participating. Providers who are selected to participate will be notified via email. Please feel free to forward this survey to CMHW families, past or present, and/or clinical supervisors who may wish to participate.

Remembering Julie Beckett

A founding member of Family Voices , Julie Beckett passed away on Friday, May 13.  Julie Beckett was a school teacher and mother who advocated for what was best for her child and family.  In using her voice and through her advocacy, she changed the lives of thousands of people across the country.  The first Medicaid Waiver, the Katie Beckett Waiver, was created, allowing disabled persons to receive services to remain in their homes and communities.  Today, we join so many others as we honor Julie Beckett for her tireless efforts and the legacy she has left behind.  We hope to be parents that continue to carry a small piece of the torch she carried to try to make systems and care better for our children and others like them.   To read more about Julie and her work, please visit

Help Change the Face of Autism Research


Minimizing Anxiety and Emotional Trauma During Patient Visits

Clinical visits can be stressful when CSHCN have difficulty communicating or when providers do not have information about what triggers or soothes the patient. This sometimes can result in compromised care and unsuccessful procedures. Mercy Kids in St. Louis has created a program, Keys to Me, to minimize anxiety and potential emotional trauma. The program bridges the gap between parents and providers by encouraging early parent communication, a portal to update information directly into a child’s medical record, and provider education.  Read more .