'How long are we able to go on?' Issues faced by older family caregivers of adults with disabilities

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 developmental disabilities were interviewed to explore their views and experiences regarding long-term care and service arrangements, health and psychological needs and 'future planning'. Findings show a severe lack of support, respite care and future planning which causes high stress levels for caregivers. Policy makers and researchers working in this field need to take into consideration the needs of older caregivers when making future plans for adults with disabilities.

Agency or Dependency?: The Mixed Peppers Theatre Arts Training Project for young people with disabilities

This article provides a reflection on my past practice as Creative Director of The Mixed Peppers Theatre Arts Training Programme. Drawing upon discourses of Disability Studies it considers how this ostensibly emancipatory project that sought to provide access to theatre activity for young people with physical disabilities living in Northern Ireland was flawed, and was eventually disbanded, partly due to a failure on the part of its non-disabled leadership to address imbalances of power in its relationship with its young disabled constituency. The article is framed within a survey of recent debates that focus upon the historical lack of a sustained, indigenous, disability-led theatre activity in Northern Ireland and the recent efforts by non-disabled professional arts practitioners to establish such activity in the region. It offers, as an exemplar to current discussion, an analysis of how the choice and agency of the young members of The Mixed Peppers were compromised by the well-meaning but potentially oppressive practices of its leadership. It questions whether the project was unduly influenced by parental desire to see their disabled children `normalized' in a high-profile theatrical production. Finally, it considers how The Mixed Peppers' institutional situation, as a project controlled and administered by a disability charity, was implicated in the premature demise of the initiative.

Echoes of the future: Adults with disabilities living at home with their parents

Almost 90% of all adult sons and daughters with disabilities live at home with their parents. Consequently, they have life experiences that are atypical for most of their adult peers and their aging caregivers are under stress due to failing health, financial pressures, bereavement, and worry about the future.

Adults with intellectual disabilities and aging parents took part in focus groups and interviews. results show a loving and caring home environment but evidence a lack of effective life skills development and futures planning. the paper draws attention to the inevitable crisis that occurs when aging caregivers are no longer able to care. The urgent need for skill development and timely futures planning is outlined.

The Millennium child with autism: Early childhood trajectories for health, education and economic wellbeing

Objective: Most of what we know about children with autism spectrum disorder (ASD) is based on post-diagnostic, retrospective, self-select studies. Oftentimes, there is no direct comparison between trajectories of children with ASD and children without ASD.

Methods: To circumvent both of these problems, the present secondary data analysis utilised a large-scale longitudinal general population survey of children born in the year 2000 (i.e. the Millennium Cohort Study; MCS; n=18522). Bi-annual MCS data were available from five data sweeps (children aged 9 months to 11 years of age).

Results: Pre-diagnostic data showed early health problems differentiated children later diagnosed with autism from non-diagnosed peers. Prevalence was much higher than previously estimated (3.5% for 11-year olds). Post-diagnosis, trajectories deteriorated significantly for the children with ASD and their families in relation to education, health and economic wellbeing.

Conclusion: These findings raise many issues for service delivery and the rights of persons with disabilities and their families.