Daniel S. Levine
Parents of children with a serious, chronic illness often fail to make the time to give themselves a break, spend time with partners and other children, or do things necessary to recharge their batteries. A new resource from the Children’s Neurology Foundation is intended to help.
The organization, which provides education and support for caregivers and their children with neurologic conditions, recently issued a Respite Care Notebook. Though created for caregivers of children with neurologic conditions, it will have value to a broader audience of rare disease caregivers.
The notebook, which is customizable, is designed to record information about a child so a parent who engages respite care can make sure the respite care provider has necessary information about the child’s medical needs, behavior, background on the family, and list of emergency contracts.
Sandra Cushner-Weinstein, a clinical social worker with a long history of working with families with chronic health disorders and a member of the Child Neurology Society board, said respite care not only provides parents with needed breaks, but also opportunities for children to interact with other children.
Cushner-Weinstein notes that the notebook is designed for people already using respite care services or considering doing so. While there are resources listed in the notebook, she notes that one of the barriers caregivers face in using the respite care services is the cost. Respite care services vary from county to county and people may be eligible for fee waivers depending on their finances and where they live. To learn more about that, she suggests people view The ARC website [http://www.thearc.org/]
The full, customizable Respite Care Notebook is available for download. It was made possible in part through development and funding support from GlaxoSmithKline and additional production support from the Association for Creatine Disorders
November 2, 2017