Researchers created the Pediatric Integrated Care Survey, a validated tool that measures a family's experience with the integration of health care and related services for children and youth 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.
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.
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.
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.
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.
View the recording and slides of the pre-application webinar for the Request for Proposals: Developing Goals and Strategies to Improve the Care of Children with Chronic and Complex Health Conditions.
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.
Friends of Children with Special Needs has filled a niche by serving Chinese American children and adults with special health care needs in the Bay Area.
