Abstract: Individuals with Autism, Intellectual and Developmental disabilities (AIDD) are one of the most vulnerable groups in society, hampered not only by their own limitations to understand and interact with the wider society, but also societal limitations in perception and understanding. Communication to express their needs and wishes is fundamental to enable such individuals to live and prosper in society. This research project was designed as an organisational case study, in a large secondary health care hospital within the National Health Service (NHS), to assess the quality of care provided to people with AIDD and to review the role of advocacy to reduce health inequalities in these individuals. Methods: The research methodology adopted was as an “insider researcher”. Data collection included both quantitative and qualitative data i.e. a mixed method approach. A semi-structured interview schedule was designed and used to obtain qualitative and quantitative primary data from a wide range of interdisciplinary frontline health care workers to assess their understanding and awareness of systems, processes and evidence based practice to offer a quality service to people with AIDD. Secondary data were obtained from sources within the organisation, in keeping with “Case Study” as a primary method, and organisational performance data were then compared against national benchmarking standards. Further data sources were accessed to help evaluate the effectiveness of different types of advocacy that were present in the organisation. This was gauged by measures of user and carer experience in the form of retrospective survey analysis, incidents and complaints. Results: Secondary data demonstrate near compliance of the Organisation with the current national benchmarking standard (Monitor Compliance Framework). However, primary data demonstrate poor knowledge of the Mental Capacity Act 2005, poor knowledge of organisational systems, processes and evidence based practice applied for people with AIDD. In addition there was poor knowledge and awareness of frontline health care workers of advocacy and advocacy schemes for this group. Conclusions: A significant amount of work needs to be undertaken to improve the quality of care delivered to individuals with AIDD. An operational strategy promoting the widespread dissemination of information may not be the best approach to deliver quality care and optimal patient experience and patient advocacy. In addition, a more robust set of standards, with appropriate metrics, needs to be developed to assess organisational performance which will stand the test of professional and public scrutiny.
Abstract: Background: In recent years we are witnessing a welcome trend in which more children/persons with disabilities are living at home with their families and within their communities. This trend is related to various policy innovations as the UN Convention on the Rights of People with Disabilities that reflect a shift from the medical-institutional model to a human rights approach. We also witness the emergence of family centered approaches that perceive the family and not just the individual with the disability as a worthy target of policy planning, implementation and evaluation efforts. The current investigation aims to explore economic, psychological and social factors among households of families of children or adults with intellectual disabilities in Israel and to present policy recommendation. Methods: A national sample of 301 households was recruited through the education and employment settings of persons with intellectual disability. The main caregiver of the person with the disability (a parent) was interviewed. Measurements included the income and expense surveys; assets and debts questionnaire; the questionnaire on resources and stress; the social involvement questionnaire and Personal Wellbeing Index. Results: Findings indicate significant gaps in financial circumstances between households of families of children with intellectual disabilities and households of the general Israeli society. Households of families of children with intellectual disabilities report lower income and higher expenditures and loans than the general society. They experience difficulties in saving and coping with unexpected expenses. Caregivers (the parents) experience high stress, low social participation, low financial support from family, friend and non-governmental organizations and decreased well-being. They are highly dependent on social security allowances which constituted 40% of the household's income. Conclusions: Households' dependency on social security allowances may seem contradictory to the encouragement of persons with intellectual disabilities to favor independent living in light of the human rights approach to disability. New policy should aim at reducing caregivers' stress and enhance their social participation and support, with special emphasis on families of lower socio-economic status. Finally, there is a need to continue monitoring the economic and psycho-social needs of households of families of children with intellectual disabilities and other developmental disabilities.