Title: Future Planning for persons with autism and intellectual disabilities: Developing a person centered support app and a multimedia training course for aging carers.
Summary: The aim of this project is to support aging carers to plan the future care of loved ones with severe autism. A significant barrier to the planning of future care is a fear that no one else will understand the needs of their loved one. It is believed that only they can provide the best possible care. As a family carer, the researcher understands the importance of a person centred approach and the urgency to find practical solutions that contribute to evidence-based policy making.
Two related supports are proposed: An app that enables carers to record video, pictures and notes to inform future carers. 2. A training course to address the practical and emotional challenges facing aging carers. Elderly parents of severely autistic people often continue as carers for too long, this may be at the expense of their health and with risk to their charge. There is a lack of research in this area because, until recently, most people with severe difficulties pre-deceased their parents.
App: Those with severe autism often have rituals that help them to remain calm and happy. The app will make it easy for family carers to record and catalogue key aspects of daily living. Writing notes, recording and uploading videos and images will be simple and user friendly. Future carers can then view the videos and notes quickly to understand the needs of each person e.g. when eating, dressing or meeting people. Typically, family carers experience less stress when they contribute to the continuity of care.
Course: The course will include technology training, information about service providers and legal advice. It will be informed by Applied Behavioural Analysis parent training techniques. The app and course will dovetail into one another to be the first comprehensive resource for future care. They will then be tailored for people with dementia, intellectual disability and brain injury.
Dr Aviva Cohen Bio
In 1994, Aviva began lecturing in Philosophy, Psychoanalysis and Communications Theory. She combined her academic work with a career as a Senior Communications Consultant, working with both public sector and private sector clients. In 2006, Aviva’ husband survived a stroke. This motivated her to create projects to support those living with severe disabilities.
In 2008, Aviva launched the Research & Hope website. It explains clinically tested but non-standard treatments for stroke. Shortly after that she started the Carers’ Sanctuary Magazine, an online publication to support family carers.
Aviva founded Neuro Hero Ltd. in 2011 to develop low cost therapeutic and educational apps for people with severe speech and language difficulties. This work received numerous awards from institutions such as the Arthur Guinness Fund, Social Entrepreneurs Ireland and Enterprise Ireland.