Background: Parenting children and young adults with intellectual disabilities, including individuals with fragile X syndrome and Down syndrome, is challenging, joyful, and complicated. Exploring how parents talk about their children, and the quality of the parent/child relationship can provide insight into the home environment and interactional…

A cohort of nearly 11,000 persons was traced over 8 years to determine those who had moved from family care and those who had remained. The majority (85%) continued to live with families, and, for two thirds (67%), no future move was deemed necessary. The 2 main predictors of moving were as follows: A need had been previously recorded and the…

Background: Specialist short break services aim to provide enhanced support to family carers as a means of preventing children whose behaviours severely challenge from being placed in full-time residential care. To date, there is limited evidence as to the functioning and effectiveness of such services. Methods: In all, 17 children were selected…

Although not inherent to the diagnosis, many individuals with autism spectrum disorders (ASD) display aggressive behavior. This study examined the experiences of families living with individuals with ASD who also demonstrate aggressive behaviors. Using a qualitative approach, semistructured interviews were conducted with parents of nine males with…

Background: Respite or short breaks are frequently sought by parents and demand for them usually exceeds their availability. Methods: Using data from a national database in Ireland of around 16 000 persons living with family carers, the availability of overnight respite provision was monitored over an 8-year period along with the recorded needs…

This study assessed factors that could influence equipment and respite services use among Australian families caring for a girl/woman with Rett syndrome and examined relationships between use of these resources and the health of female caregivers. Data was sourced from questionnaires completed by families (n=170) contributing to the Australian…

Background: As part of an international, multicentre project, the service and support needs of Australian family carers were investigated. Method: A sample of 1,390, 448 family carers completed a self-report survey, including an adaptation of the Family Needs Survey (FNS) and several open-ended questions. A mixed method design was used, employing…

Many parents of children with autism and other severe disabilities report heightened levels of stress due to the unique challenges their children present. Respite care is likely to alleviate some of the stress associated with caring for a child with a severe disability. However, it is often difficult for families to identify motivated and…

Children with disabilities receive most of their support from families. While most family caregivers are mothers or fathers, grandparents are increasingly providing care for children with disabilities. In addition, family caregivers come from diverse cultural backgrounds that impact their views on disability. This paper reviews the literature on…

The report contains the findings and recommendations of an evaluation of the Community Training Home program operated by the Connecticut Department of Mental Retardation. The section on background information provides details of the history of the program which currently provides foster care services for 478 people with mental retardation of which…

The case study describes a family residential service for three people with profound and multiple disabilities in Burlington, Vermont. The disabled individuals live with a couple and their two children who are also provided support services in the form of weekend relief and helpers for the late afternoon and evening period. The house is owned by a…

This booklet documents the ability of parents of children with special health needs and disabilities to achieve balance in their lives, by moving from crisis to control, from challenge to opportunity, from questions to answers. The booklet discusses concerns that confront parents of children with special needs, and answers the most common…

In focus group interviews, 39 parents of children (ages birth to 21 years) with developmental disabilities, emotional disorders, and technology-supported needs shared their perspectives regarding special needs, crisis situations, and parent/professional relationships. The purpose of the study was to determine what is necessary to keep children…

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 collection of articles and bibliographies provides a comprehensive guide to autism. Section 1 presents general information on autism such as characteristics, myths and facts about autism, factors associated with autism, and diagnostic criteria for autism and Asperger's disorder. Section 2, on the family, addresses such aspects as the…