Personal Assistance - What should personal assistance look like?

Teodor Mladenov, Senior Lecturer at the University of Dundee and Coordinator of ENIL’s Independent Living Research Network

Introduction

This article is part of a special issue on Personal Assistance (PA) of the Disability Rights Defenders Newsletter published by the Independent Living Institute.

I begin by considering PA as key for Independent Living. I then briefly define PA, drawing on a definition created by the European Network on Independent Living (ENIL), and I explore the features of PA identified by the UN Committee on the Rights of Persons with Disabilities. I proceed by contextualising PA in relation to the other ‘pillars’ of Independent Living. Finally, I explore the relationships between PA, peer support, and supported decision-making.

Readers interested in learning more about PA and Independent Living may find this special issue on Independent Living of the International Journal of Disability and Social Justice useful. It was guest-edited by me and my colleagues from ENIL and contains articles by the members of ENIL’s Independent Living Research Network, as well as video-recorded interviews with Independent Living activists.

PA is key for Independent Living

PA is a key prerequisite for Independent Living and is often considered as one of its ‘pillars’. This understanding of PA has characterised the Independent Living movement since its inception in the late 1960s. A major preoccupation of the first Centre for Independent Living (CIL), formally established in 1972 in the US city of Berkeley, California, has been to support disabled people with hiring and managing their personal assistants. The CILs created subsequently by disabled people in other parts of the world (including Europe) have continued this tradition by embracing support with PA as a core activity.

The importance of PA for Independent Living has also been recognised in Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD) – the legally binding human rights treaty that has guided disability policy internationally since it came into force in 2008. Article 19, whose provisions are clarified in the General Comment No 5 of the UN Committee on the Rights of Persons with Disabilities, posits ‘living independently and being included in the community’ as a human right and enlists PA as one of the supports needed to realise it.

What is PA?

At its most basic level, PA is one-on-one support, but unlike other forms of support provided by one person to another (such as home care), PA is controlled by the disabled person. This helps the person avoid confinement in residential institutions or at home by enabling freedom and community living. ENIL defines PA as:

a tool which allows for independent living. Personal assistance is purchased through earmarked cash allocations for disabled people, the purpose of which is to pay for any assistance needed. Personal assistance should be provided on the basis of an individual needs assessment and depending on the life situation of each individual. The rates allocated for personal assistance to disabled people need to be in line with the current salary rates in each country. As disabled people, we must have the right to recruit, train and manage our assistants with adequate support if we choose, and we should be the ones that choose the employment model which is most suitable for our needs. Personal assistance allocations must cover the salaries of personal assistants and other performance costs, such as all contributions due by the employer, administration costs and peer support for the person who needs assistance.

This definition suggests that to create opportunities for Independent Living, PA needs to incorporate certain features that also distinguish it from other types of one-on-one support. Awareness of these features helps unmask ‘fake’ PA or one-on-one supports misrepresented as PA. A useful list of such features is provided by the General Comment No 5 of the Committee on the Rights of Persons with Disabilities, which also reflects a prominent PA model developed by the members of the Independent Living movement in Europe and described by Adolf Ratzka. Let us now have a closer look at these features.

PA according to General Comment No 5

To begin with, General Comment No 5 states that the funding for PA should be allocated to the disabled person and controlled by them. This is in line with the Independent Living movement’s endorsement of ‘direct payments’ (or ‘earmarked cash allocations’ in ENIL’s definition of PA) as the most empowering mechanism for resourcing PA. In a direct payment, the money for PA is sent by the funding agency directly to the disabled person’s bank account.

General Comment No 5 also states that the level of funding for PA should be personalised by reflecting individual needs and life circumstances. Moreover, funding should be adequate. Indeed, insufficient funding may create difficulties with finding assistants, which may push disabled people towards recruiting family members, potentially reproducing paternalism in support and leading to institutionalisation at home.

Proper PA enables disabled people to determine who, how, when, and where assists them – either by employing their assistants directly, or by instructing the provider of the service on all these aspects. This also requires control over recruitment, training, and supervision of the assistants. Attempts by policy makers to professionalise any of these tasks lead to ‘recolonising’ of PA by the service providing industry. As with inadequate funding, such ‘recolonising’ may create institutionalisation at home – in the words of Adolf Ratzka:

Not being in charge of important functions, such as recruitment, training, scheduling, supervision of your assistants can turn your home into an institution.

PA and the other pillars of Independent Living

PA is a necessary but not a sufficient prerequisite for living independently – it is but one of the ‘pillars’ of Independent Living. The latter include peer support, accessible and affordable housing, transportation, financial support, assistive technology, adequate healthcare, and other enablers. Some disabled people may not need PA, but for people with multiple and complex support needs, PA is often a crucial pillar of Independent Living.

Having the other pillars of Independent Living in place is a prerequisite for the proper function of PA. Conversely, when other supports are lacking or inadequate, PA may be used to compensate for such absences, which diminishes its power to enable Independent Living. For example, funding for PA may be used to plug gaps in family budgets or solve unemployment issues created by economic crises, austerity measures, neoliberal retrenchment, and social abandonment. In such cases, disabled people may be directly or indirectly pressurised to hire family members as a way of helping their relatives back into employment or of alleviating the poverty experienced within the family. This leads to PA being misused for the purpose of solving problems created elsewhere in the welfare state.

PA, peer support, and supported decision-making

Peer support – or support provided by other disabled people who use PA – needs special attention because it is very important for helping the person gain or retain control. Peer support helps avoid professionalisation of PA and, by extension, reassertion of professional power or ‘recolonising’ of PA.

Moreover, peer support is indispensable for raising awareness among disabled people about their rights – to paraphrase Jim Elder-Woodward, empowering the individual is impossible without an empowering collective. Peer support also helps give and receive practical advice with the management of PA without relying on professionals. It is best provided and organised by CILs and constitutes another of their core activities. According to Hale Zukas, the first CIL – the one in Berkeley, California – became possible via peer support:

[the founders of the Centre] were in close, continuing contact with other people having similar problems and concerns. A sense of unity and self-confidence gradually developed, largely as a result of the free flow of communication and sharing of experience. The residents’ political consciousness grew as they became aware of the degree to which control over their lives had been taken over by medical and rehabilitation professionals.

Another ‘pillar’ of Independent Living akin to peer support and crucial for widening the access to PA is supported decision-making. The principles of supported decision-making as an alternative to substitute decision-making (e.g., guardianship) are elaborated in the General Comment No 1 of the UN Committee on the Rights of Persons with Disabilities. Without supported decision-making, some people with intellectual and psychosocial impairments, as well as some autistic people (who are often disproportionately marginalised among disabled people), are not able to use PA.

Peer support may be considered as a kind of collective support with decision making, although one-on-one arrangements are also prominent. A clear and comprehensive model for the provision of supported decision-making has been created by the disabled people’s organisation People First Scotland. Another prominent mechanism has been developed and implemented by the Swedish cooperative of people with intellectual impairments JAG.

Conclusion

In conclusion, PA is key for Independent Living but often misunderstood or misrepresented. Such misunderstandings and misrepresentations can be countered by paying attention to the features of PA identified by the members of the Independent Living movement and summarised by the UN Committee on the Rights of Persons with Disabilities in its General Comment No 5. Moreover, PA is key but not enough – other pillars of Independent Living need to be in place for PA to work properly. This becomes clear when we consider the relationships between PA, peer support, and supported decision-making. Independent Living requires a holistic approach to support that is led and controlled by the people using it.

The next article in the Disability Rights Defenders Newsletter September 2023 is:

• Peer support and independent living - Alessandra Grotta and Kamil Goungor