Unpaid (informal) family caregivers provide vitally important supports to people with intellectual and developmental disabilities (IDD), but receive little support or training. This study's aim was to examine how states across the nation supported informal family caregivers in their Medicaid Home- and Community-Based Services (HCBS) programs for…

Autism is associated with a range of costs. This paper reviews the literature on estimating the economic costs of autism spectrum disorder (ASD). More or less 50 papers covering multiple countries (US, UK, Australia, Canada, Sweden, the Netherlands, etc.) were analysed. Six types of costs are discussed in depth: (i) medical and healthcare service…

Family members of children with disabilities have become more involved in their children's care and have adopted the role of primary caregiver. Due to the varying degrees of the condition, children with cerebral palsy (CP) often require greater involvement from their caregivers. Fifteen caregivers for children with CP residing in rural communities…

Respite care is one of a range of support services typically available to carers of people with dependencies who need a break from caring, and the factors that influence the need for respite care are generally similar irrespective of the nature of the dependencies. Hence, the expectations of families potentially have policy and service provision…

Family caregivers of physically and cognitively impaired older adults face multiple challenges when providing care, including responses to tangible and anticipated losses. However, little is known about the grief experiences of family caregivers and how these might differentially influence the care-related behaviors of spouses and adult children.…

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: Families/carers relinquishing the care of family members with a disability into the care of out-of-home respite facilities is an under-researched area in the disability field. With this in mind, the aim of this study was to explore the factors that lead to families relinquishing care, the potential early indicators that families are…

Research-informed policy and practice is needed for older caregivers of adult sons/daughters with disabilities. These caregivers are often under tremendous stress because of failing health, financial pressures, bereavement and worry about the future of their sons/daughters. Twenty-nine older parents/caregivers of 27 adults with intellectual and/or…

Respite care services have been linked to variety of positive outcomes for caregivers and families alike. The purpose of the current study was to examine the association of receiving respite care with academic achievement for children with disabilities across time. The study employed a nationally representative sample of children to examine this…

Background: This study explored the experiences of working mothers with an adult child with intellectual disabilities to understand how they reconcile paid work and care responsibilities. Methods: Fifteen working mothers in Taiwan with an adult child with intellectual disabilities were interviewed, and an interpretative phenomenological approach…

Two-thirds of the people registered on the Irish National Intellectual Disability Database (NIDD) reside at home with family members frequently supporting them (Kelly et al., "National Intellectual Disability Database Committee Annual Report 2006," Health Research, 2007). Use of respite care services by parents with a child/adult with an…

In this study, a family support program was carried out for primary caregivers of children with disabilities. The program included respite care, recreation programs, counseling, and social support coordination based on individual needs of each family. In order to verify the intervention effects, parenting stress and family quality of life were…

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…

The evidence that the birth of a child with a disability leads to divorce or separation is equivocal, with the majority of recent research suggesting that such a birth and childrearing may be stressful, but not necessarily toxic, to the caregiver relationship. Such research has been limited by small sample sizes and nonrepresentative samples and…

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…