• Insights

    Family Stories from Super Parents

    Deanne Fitzmaurice, a Pulitzer Prize-winning photographer, shadowed 10 families living throughout California - from rural farms to large urban centers to the suburbs surrounding Silicon Valley - who provide care for their children with special needs every day and every night. 

  • Event and Webinar Recaps

    Beyond Checklists: Care Planning for Children with Special Health Care Needs

    What does it take to create and implement an effective, family-centered plan of care for a child with special health care needs? Two expert speakers discussed their approaches to the process of care planning in two very different settings—Children's Hospital of Philadelphia and a small private practice in Vermont.

  • Insights

    Opinion: A Parent’s Call to Train a New Workforce for In-Home Care

    Diane Stonecipher’s son, now 24, is blind, quadriplegic, profoundly delayed, and has been in hospice twice. Yet he doesn’t qualify for nursing care at home. Stonecipher, herself a nurse, says it’s time to train a new kind of workforce for in-home and residential care.

  • Insights

    ABC's "Speechless" Gives Voice to Kids with Special Needs: Q&A with the Show's Producer

    On September 21, ABC will premiere its new sitcom, Speechless, about a family with a child who has special needs. The show stars Micah Fowler, a young actor who in real life and in the show has cerebral palsy, and Minnie Driver, who plays the mother of Fowler’s character, JJ. We talked to Melvin Mar, one of the show’s executive producers, to get a behind-the-scenes look at Speechless.

  • Research & Reports

    Family Engagement and Leadership in Title V Programs

    In 2014 and 2015, the Association of Maternal and Child Health Programs conducted a survey about family engagement policies and practices in federally funded Title V maternal and child health programs and programs for children and youth with special health care needs. The findings provide a snapshot of strategies to support meaningful family engagement, effective and innovative practices, and areas of need for improvement and technical assistance.

  • Event and Webinar Recaps

    Coordinating Care for Children with Social Complexity

    The lives of children with chronic or complex medical conditions often are complicated by psychosocial issues and family problems such as poverty, poor parental health, substance abuse, domestic violence, and homelessness. This webinar highlighted advances in research and practice that aim to improve the well-being and health outcomes of these children with "social complexity" while reducing costs.

  • Insights

    Meet Susan Tom, the Super Mom of 11 Children with Special Needs

    Ten years ago, My Flesh and Blood, a documentary about Fairfield, California-based Susan Tom and her 11 children with special needs, was broadcast. Since then, her home has undergone an Extreme Makeover, and her children are now adults. Read an interview with Susan discussing the transition of her kids to adult health care and making legal and financial preparations for their continued well-being.

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