Sustaining people with learning disabilities’ right to personal assistance in Scotland: the importance of promoting informal carers’ rights
Guest blog post by Lisa Paul, University of Glasgow[i]
This post is part of a series of guest blog posts written by PhD researchers and SHRC’s LLM Human Rights Dissertation Placement Student who took part in our Human Rights Research Knowledge Exchange Showcase last year.
There is a well-documented history of health and social care professionals holding disproportionate power over the lives of disabled people (Oliver, 1990). Personal assistance aims to right this wrong by giving disabled people a direct payment in place of top-down services so they can instead employ their own team of support staff, known as personal assistants (PAs) (Morris, 1996). Personal assistance has become central to realising disabled people’s right to independent living by positioning disabled people in the driving seat of their own lives (Elder-Woodward, 2023). In addition to promoting their own self-determination, disabled people who choose personal assistance take on the added responsibility of employing and directing a small team of personal assistants to support them (Kelly, 2013). Initially just those who had a physical impairment had access to a direct payment, however, overtime it has become increasingly common for people with learning disabilities to receive a direct payment (Turnpenny et al., 2021). This decision is often made on the pretext that an informal carer- commonly a parent- will assist them in managing their employer duties, or, will alternatively take up the entirety of this role on their behalf (Young, 2020). It was their experiences of personal assistance, in addition to that of their parents and personal assistants, which I set out to explore through my masters research over the summer of 2024.
Through interviews with PAs and mothers who employ PAs on behalf of their children[i], I learnt that personal assistance is having a profoundly positive impact on the lives of people with learning disabilities who have access to it in Scotland. I learnt that the support PAs provide goes further than that provided by a traditional care agency because the continuity of a small team of PAs who work 1-1 with the support user fosters supportive, long-lasting relationships. In addition to allowing people with learning disabilities to be more independent from their families, I found that their personal assistance relationships broadened their social horizons. This was particularly beneficial for people who had low support needs, for whom personal assistance helped bolster their sense of confidence and self-esteem in new social situations and environments.
Prior to the publication of the independent review of adult social care in 2021, there was limited political attention paid to the personal assistance workforce in Scotland due to the inherently informal and hidden nature of personal assistance work. After the review recommended that PAs be recognised as fully fledged members of the adult social care workforce (Scottish Government, 2021), the Personal Assistance Programme Board was set up in 2021. The purpose of the board is to improve the rights of PAs and provide a space for both them and their employers to influence policies related to personal assistance in Scotland. Echoing findings from the board’s most recent survey of the PA workforce, most of the PAs I spoke to had previously worked in traditional care jobs prior to becoming a PA (PA Programme Board, 2024). Unlike the working environment in their previous roles, PAs preferred how personal assistance was directed by the individual needs of the person they assisted, instead of by restrictive top-down managerial structures. Moreover, PAs often enjoyed knowing that by providing personal assistance they were inadvertently giving the families of the person they assisted some brief respite from being their full-time carer. However, due to the low monetary value of direct payments, and the precarious nature of personal assistance work, all of the PAs who I spoke to did not envision themselves doing personal assistance in the long-term and subsequently did personal assistance alongside other employment or higher education.
Feelings of unsustainability were also relayed to me by the mothers I spoke to who employed a PA on behalf of their adult child. They had all given up full-time employment to support their child, and although they felt that this was preferable to the services provided by their local authority, the extent of their caring obligations was both physically and emotionally exhausting. I found that this was obstructing their right to good health and wellbeing, and whilst they did benefit from the brief respite personal assistance provides, this did not offset the volume of additional work they put into orchestrating personal assistance and being a full-time carer. This was particularly so for those whose child had a small direct payment, which in some cases only provided four hours’ worth of personal assistance a week. Subsequently, some of the mothers did not view their role as an unpaid carer and PA employer to be sustainable long-term, especially as they did not know how their child would carry on using a PA when they were no longer around to facilitate it. As a result, some mothers were contemplating, or, already in the process of searching for more manageable but less personalised alternative support provisions.
So, what do these findings mean for the future of human rights in Scotland?
Over the last thirty years disabled feminists writing about disability have emphasised how support practices ought to be empowering for both those giving and receiving support (Morris, 1991). However, the main way that people with learning disabilities in Scotland are expected to access personal assistance is currently not empowering for informal unpaid carers and PAs; who are disproportionately over represented by women (PA Programme Board, 2024). This raises concerns under key international human rights frameworks including the right to decent paid work and health under CEDAW and ICESCR as budget cuts and unrealistic policy expectations currently overlook the value of both paid and unpaid care work (Sepulveda Carmona, 2013). These findings are particularly concerning for the longevity of people with learning disabilities’ right to personal assistance and subsequently their right to full inclusion in society under the CRPD. This is because their realisation of these rights currently depends on other people giving up their own right to health, wellbeing and decent paid work to facilitate and provide their personal assistance.
Thanks to the formation of the PA Programme Board significant steps have been taken to recognise and value the PA workforce in Scotland. Their work has included the creation of training resources for both PAs and employers, research into what determines PA wellbeing and further development of the Personal Assistants Network Scotland (Self Directed Support Scotland, 2025). The board, alongside Self-Directed Support Scotland, has also advanced the use of community brokerage as a means of meaningfully supporting people and their families to access personalised support (Self Directed Support Scotland, 2024). However, the future of personal assistance in Scotland is still uncertain (Elder-Woodward, 2023). Chronic underfunding of adult social care continues to dampen the capacity of self-directed support to provide transformative change (Pearson, Watson and Manji, 2018). Moreover, the Scottish Government’s decision to scrap the National Care Service Bill makes it unclear to see how a path to social care reform will be pathed and whether this path will lead people with learning disabilities, their PAs and unpaid informal carers to fully exercise their human rights in the future (CCPS, 2025).
[i] This blog is based on a presentation given at the SHRC’s Inaugural Knowledge Exchange Event on 11/12/24 which drew from the findings of Lisa’s MRes thesis in public policy research
[i] Only one month was available for data collection due to the compressed MRes course timeline. Subsequently more lengthy fieldwork was not possible for accessible data collection methods for people with learning disabilities to participate in this study. Current PhD research continues to explore personal assistance and will include people with a learning disability in the data collection process.
References
CCPS (2025) The National Care Service: Where Now? | Coalition of Care and Support Providers in Scotland. Scotland. (Accessed: 29 May 2025).
Elder-Woodward, J. (2023) ‘CURRENT ISSUES BULLETIN: Personal Assistance in Scotland: A Postcolonial Perspective’, The International Journal of Disability and Social Justice, 3(1), pp. 114–120.
Kelly, C. (2013) ‘Building Bridges with Accessible Care: Disability Studies, Feminist Care Scholarship, and Beyond’, Hypatia, 28(4), pp. 784–800.
Morris, J. (1991) ‘“Us” and “them”? Feminist research, community care and disability*’, Critical Social Policy, 11(33), pp. 22–39.
Morris, J. (ed.) (1996) Encounters with strangers: feminism and disability. London: Women’s Press.
PA Programme Board (2024) Personal Assistant Workforce Survey. Self-Directed Support Scotland. (Accessed: 17 July 2024).
Pearson, C., Watson, N. and Manji, K. (2018) ‘Changing the culture of social care in Scotland: Has a shift to personalization brought about transformative change?’, Social Policy & Administration, 52(3), pp. 662–676.
Scottish Government (2021) Adult social care: independent review. (Accessed: 5 August 2024).https://www.gov.scot/publications/independent-review-adult-social-care-scotland/pages/12/
Self Directed Support Scotland (2024) ‘Defining and developing Community Brokerage in Scotland’, Self Directed Support Scotland, 27 March. (Accessed: 23 April 2025).
Self Directed Support Scotland (2025) ‘Personal Assistant Programme Board’, Self Directed Support Scotland. Available at: (Accessed: 29 May 2025).
Sepulveda Carmona, M. (2013) ‘Unpaid Care Work, Poverty and Women’s Human Rights: Challenges and Opportunities for the Post-2015 Agenda’. Rochester, NY: Social Science Research Network.
Turnpenny, A. et al. (2021) ‘Family carers managing personal budgets for adults with learning disabilities or autism’, British Journal of Learning Disabilities, 49(1), pp. 52–61.
Young, K. (2020) Where is the person in personalisation? Experiences of people with learning disabilities and their families in Glasgow. PhD. University of Glasgow. (Accessed: 30 July 2024).