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\"Headshot<\/figure>\n

Cara Coleman is a nationally recognized family partner, speaker, medical educator, attorney, writer, and advocate for children with disabilities and medical complexity and their families. Cara is the founder of The Bluebird Way Foundation<\/a>, an organization dedicated to using the arts, humanities, storytelling, and narrative medicine to build understanding, connection, and change in healthcare and health profession education. Cara is a grantee and partner of the Lucile Packard Foundation for Children’s Health, strengthening our family partnership work through projects such as the Family-Led Academic Grand Rounds for Pediatrics<\/a>.\u00a0<\/strong><\/h3>\n

This Impact Story is a commentary on the JAMA Pediatrics <\/i>article, Measuring Childhood Disability Using the National Health Interview Survey<\/a>, published by Foundation grantee the DIVERSE Collective<\/a>. Cara highlights parents’ varied perspectives on how the measurement of disability impacts the lives of children and their families. Please refer to the journal article for more detail on the research findings.\u00a0<\/strong><\/h3>\n

More than a Measure: How Disability Identification Shapes the Lives of Children and Families<\/strong><\/h4>\n

When my daughter was born, a parade of diagnoses followed her. Throughout her over two-month neonatal intensive care unit (NICU) stay, the parade seemed to grow daily. A parade of words I could barely spell or pronounce, and all I wanted to really know was <\/span>what they had to do with my sweet baby girl. Disability was not invited to the parade. Perhaps this was because she was still so young, and we would have to \u201cwait and see.\u201d However, as soon as we took her home, disability became the diagnosis grand marshal of the parade and the key to unlocking services. But as we began to try to get services, such as Medicaid and early intervention, the parade seemed to splinter and go in different directions. Each program and service identified disability in different ways. Some doors opened and others closed.\u00a0<\/span>\u00a0<\/span><\/p>\n

I was confused. Did my daughter have a disability or not? Why were there so many different ways to identify and define disability? I found myself back at my original question in the NICU: What does all this have to do with my sweet baby girl? <\/span>\u00a0<\/span><\/p>\n

How does one identify or measure childhood disability? A recent research letter<\/a> in <\/span>JAMA Pediatrics<\/span><\/i> looks at four ways to identify disability to see if there is a difference between measures. Using data from the National Health Interview Survey (NHIS), a yearly survey of people living in households across the U.S., the authors investigated four different ways to identify disability in children ages 5-17: <\/span>\u00a0<\/span><\/p>\n

    \n
  1. have \u201ca lot of difficulty\u201d or \u201ccannot do it on their own\u201d on 1 or more of the core functioning domains of seeing, hearing, mobility, self-care<\/span>\u00a0<\/span><\/li>\n
  2. have autism spectrum disorder, intellectual disability, or attention-deficit\/hyperactivity disorder<\/span><\/li>\n
  3. have an IEP (individualized education plan)<\/span>\u00a0<\/span><\/li>\n
  4. have \u201csome difficulty\u201d on 2 or more of the core functioning domains<\/span>\u00a0<\/span><\/li>\n<\/ol>\n

    The study looked at each measure on its own, and in combination, all the while asking what happens when we use different measures of disability. The authors created an \u201cupset plot\u201d to share their results. And upset things it did! Here are a few things they found:<\/span>\u00a0<\/span><\/p>\n