Building an evidence-based multi-level system of quality disability support for adults with acquired neurological disability

People with acquired neurological disability have the right to quality disability support, yet there is still limited user insights shaping disability services. This research aimed to develop a comprehensive understanding of quality support for adults with acquired neurological disability based on lived experiences. Using a constructivist grounded theory approach, this project engaged 12 adults with acquired neurological disability, 12 support workers, and 10 close others in individual interviews. Each perspective was analysed independently and subsequently merged to construct a holistic model of quality support grounded in lived experience. The model of quality support encompasses interconnected themes spanning dyadic relationships, support worker competency, team dynamics, provider practices, and sector-wide considerations. Key elements include recognising the individual’s expertise in their support needs, nurturing effective support relationships, fostering a capable support team, and upholding sector accountability. Authentic choice and personal agency emerged as paramount factors in achieving quality support. The findings align with disability rights and individualised funding principles, emphasising the centrality of people with lived experience in shaping support services. The research underscores the need to prioritise authentic choice and individual empowerment, offering valuable insights for both practice and policy development in the disability support sector. The perspective of people with lived experience is paramount to designing quality disability support services aligned with people’s needs and preferences.The person with disability needs to be at the centre of all decisions regarding their support and needs to be supported to lead their supports.Quality disability support relies primarily on the interaction between the person with disability and their support worker, and therefore quality support relationships need to be developed and maintained. The perspective of people with lived experience is paramount to designing quality disability support services aligned with people’s needs and preferences. The person with disability needs to be at the centre of all decisions regarding their support and needs to be supported to lead their supports. Quality disability support relies primarily on the interaction between the person with disability and their support worker, and therefore quality support relationships need to be developed and maintained.</p