Ageing, Health, and Social Care: The meaningful engagement of autistic people with learning disabilities in supported living services in Scotland
Lead Research Organisation:
Heriot-Watt University
Department Name: Sch of Social Sciences
Abstract
Older autistic people with learning disabilities are not having their human rights met. There are inequalities in health and social care provision. Autistic people with learning disabilities are rarely involved with the design of services, but rather, services which are designed for non-autistic people are offered.
Autistic people are increasingly using a range of media to have their views heard. There is a growing movement which rejects the medical/deficit model of autism, a model which suggests that the autistic person requires 'fixing' or 'training' to meet the 'typical' norm. This can lead to the autistic person being labelled as abnormal, stigmatised, and potentially excluded from society. Models are evolving such as human rights-based models focusing on inclusive practices and understanding the lived experience of the autistic person to design and develop services.
Human rights implementation is a process and does not occur overnight. Part of that process will be to ensure that autistic people with learning disability are part of the decision-making process regarding service provision as they age and their lived experiences can direct and shape health and social care so that they can age well.
The project aims to use film and art to support autistic people with learning disabilities direct the discussion in relation to planning and designing care provision as they age. By using these creative methods, we aim to support autistic people with learning disabilities to direct a discussion around what happy and health ageing looks like for them, to understand the impact of these discussions on others, and to raise awareness and support discussion with providers and the wider public.
The project will have three main activities. The first will be to create a documentary film which will be led by a team of autistic filmmakers. Autistic people with learning disabilities (aged 55+) will be interviewed by the autistic interviewer on the experience of ageing in supported living services. Adapted and individualised interview methods will be used, allowing for a focus on visual cues and alternative means of communication.
The second activity will involve showing the film within supported workshops. One will be online, and one will be face to face. The film will be used to help initiate a dialogue around ageing, aspirations, concerns, and care provision for older autistic adults in supported living arrangements. Autistic adults with learning disabilities and care providers will be asked to contribute. There will be a "wall" /canvas similar to a graffiti wall upon which participants can add to the dialogue. Participants can contribute directly to the "wall" themselves or can be supported to contribute by an artist. To allow all contributors time to process the discussions, there will be the facility to send in contributions after the event (e.g. by sending in a comment, photograph, or drawing). These will be collated by the research team, and the artist will add these to the visual record.
The third activity will involve sharing the film and artwork across Scotland in a range of venues both online and in person with service providers, policy makers and the wider public.
We aim to understand the impact of engaging with the project and the activities on communities through a process of monitoring and evaluation. For instance, service providers and policy makers may desire to adapt their services and service provision, and the wider public may become more aware, and knowledgeable about older autistic people with learning disabilities and their aspirations for ageing well.
We will communicate the findings of the project through the documentary film, the artwork, as well as a film which will document the process of creating the documentary film (like an "out-takes" film). We will produce academic journal articles and present the findings to relevant communities including academic, health and social care, and policy makers.
Autistic people are increasingly using a range of media to have their views heard. There is a growing movement which rejects the medical/deficit model of autism, a model which suggests that the autistic person requires 'fixing' or 'training' to meet the 'typical' norm. This can lead to the autistic person being labelled as abnormal, stigmatised, and potentially excluded from society. Models are evolving such as human rights-based models focusing on inclusive practices and understanding the lived experience of the autistic person to design and develop services.
Human rights implementation is a process and does not occur overnight. Part of that process will be to ensure that autistic people with learning disability are part of the decision-making process regarding service provision as they age and their lived experiences can direct and shape health and social care so that they can age well.
The project aims to use film and art to support autistic people with learning disabilities direct the discussion in relation to planning and designing care provision as they age. By using these creative methods, we aim to support autistic people with learning disabilities to direct a discussion around what happy and health ageing looks like for them, to understand the impact of these discussions on others, and to raise awareness and support discussion with providers and the wider public.
The project will have three main activities. The first will be to create a documentary film which will be led by a team of autistic filmmakers. Autistic people with learning disabilities (aged 55+) will be interviewed by the autistic interviewer on the experience of ageing in supported living services. Adapted and individualised interview methods will be used, allowing for a focus on visual cues and alternative means of communication.
The second activity will involve showing the film within supported workshops. One will be online, and one will be face to face. The film will be used to help initiate a dialogue around ageing, aspirations, concerns, and care provision for older autistic adults in supported living arrangements. Autistic adults with learning disabilities and care providers will be asked to contribute. There will be a "wall" /canvas similar to a graffiti wall upon which participants can add to the dialogue. Participants can contribute directly to the "wall" themselves or can be supported to contribute by an artist. To allow all contributors time to process the discussions, there will be the facility to send in contributions after the event (e.g. by sending in a comment, photograph, or drawing). These will be collated by the research team, and the artist will add these to the visual record.
The third activity will involve sharing the film and artwork across Scotland in a range of venues both online and in person with service providers, policy makers and the wider public.
We aim to understand the impact of engaging with the project and the activities on communities through a process of monitoring and evaluation. For instance, service providers and policy makers may desire to adapt their services and service provision, and the wider public may become more aware, and knowledgeable about older autistic people with learning disabilities and their aspirations for ageing well.
We will communicate the findings of the project through the documentary film, the artwork, as well as a film which will document the process of creating the documentary film (like an "out-takes" film). We will produce academic journal articles and present the findings to relevant communities including academic, health and social care, and policy makers.
