Children with Special Health Care Needs (CSHCN) represent a significant component of the pediatric population. They often present to schools with multiple and increasingly complex health issues, including medical technology dependency. Their daily variation in health status requires close monitoring and communication among caregivers. Limited…

The Washington, D.C. suburb of McLean, Virginia is one of the most affluent areas in the United States. It is also a community of rare and remarkable power, where politics, military might, and corporate interests converge to create the perfect environment for successful non-profit efforts. On any given day of the week, there is a charity ball or…

This report accompanies House of Representatives bill 2088 and recommends passage of the bill to revise and extend programs established in the Temporary Child Care for Handicapped Children and Crisis Nurseries Act of 1986. The bill extends the programs for 2 years, strengthens reporting requirements, and requires the states to provide interagency…

Studies consistently have found that caregivers who use respite care are satisfied with and appreciate such care. However, preliminary evaluations of the effect of respite care on caregiver burden have had mixed, limited, and in some cases null empirical findings of program effectiveness. This study explored the relationship between caregiver…

The challenges that families face in caring for a child with a disability or a chronic illness are reviewed in this report on respite care. A parent's narrative describes the difficulties in providing around-the-clock care to a child with a chronic illness. The benefits of respite care are outlined as follows: gives the family peace of mind,…

This fact sheet offers basic information on developing and implementing rural respite and crisis nursery programs. It first defines "respite" as temporary relief for caregivers and families of children with disabilities, chronic or terminal illnesses, and/or for children at risk of abuse and neglect. It also defines "rural" and…

These guidelines are intended to assist states and local communities in developing quality respite services that meet the diverse needs of families and children with disabilities, with chronic and terminal illnesses, or at risk of abuse or neglect. The guidelines support the philosophy that all families can benefit from temporary intervals of rest…

This annual survey of respite care and crisis nursery programs funded by the Children's Bureau of the Administration for Children, Youth, and Families of the U.S. Department of Health and Human Services contains program information for 43 crisis nursery programs and 65 respite care programs. Data on crisis nurseries and on respite care programs…

This document consists of a combination of two separately published fact sheets, one on crisis nursery care for children at risk of abuse or neglect and one on respite care for families of children with disabilities or chronic illness. The fact sheet on crisis nursery care presents background information on the federal role in developing crisis…

In early 2000, the Center on Human Policy started to receive reports that children with complex medical needs were being placed in nursing homes because of home care nursing shortages. Sensing that framing the issue as a nursing shortage directed solutions that revolved around nursing agency staff recruitment and retention strategies, the authors…

This report describes a model designed to provide family-centered, community-based coordinated services for families and their children with chronic health care needs. The model, which was implemented to serve 208 children over a 5-year period, is based on three key concepts: families should have the choice to receive services in their homes and…