Chapter 76 – Niamh Delany (D5SOP15)

Advocacy

Advocacy is an inseparable part of the fabric of our daily working lives. Supporting service users to access and realise their rights is often a large part of the job description. We advocate to meet the needs of individual service users and for system changes when they are needed to improve the outcomes for both individuals and groups. Advocacy, when practised effectively, enables somebody to speak up for themselves through increased education and accessible communication tools. It can also mean speaking with a person, for example attending a meeting with them and providing support or advice if required. Even when a social care worker needs to speak for and on behalf of a service user to effectively advocate for them, any actions should be based on the service user’s needs, interests, will and preferences.

‘Advocacy can be a difficult concept to grasp … Some people only equate it with legal representation … Some believe it is simply about speaking up and out, on behalf of oneself and others. Advocacy is all of these things, but it is more. It is about a process; how one speaks or represents another, whether the principle person is involved, how people are involved, and the accountability we have to those we represent’ (Birmingham 2001:4).

There are four different types of advocacy: self-advocacy; representative advocacy; peer advocacy; and group advocacy. Each type includes the values of independence, autonomy, empowerment, equality and citizen engagement. Advocacy occurs in all social care settings and the type of advocacy will be determined by the underpinning values of both advocacy and social care.

Independence: The concept of independence in relation to the type of day-to-day advocacy that social care workers provide will almost always feature some level of tension between those on whose behalf they are advocating and external forces, including access to funding, legislation and policies (Drage 2013). Social care workers are rarely independent in relation to the funding systems they work within. However, the commitment to advocacy, social justice and equality as the founding values of their profession means that social care workers are duty bound to advocate against social injustice and inequality.

Autonomy: This can be described as self-directed decision-making. When working as an advocate in social care work, we must remain faithful to the autonomy of the person/people we are working with. How are they directing this advocacy process? Have we checked in with them at every stage of this process? How can we empower the person throughout this process? Some people may need support in relation to equal legal recognition of their autonomy.

Equality: It is part of a social care worker’s duty to establish what, if any, extra support is needed in order for equality to be realised. Equality and social justice are inextricably linked. Our primary role in relation to equality in social care settings involves ensuring that the people we work with can realise their human rights on an equal basis with their peers. Some people do not have access to adequate employment support due to a lack of accessible communication. Some residential settings may have ‘one size fits all’ policies, perhaps with regard to individual finances or visiting rules. This may not respect the value of equality. Our work in relation to equality begins with identifying systemic barriers to equality. The Irish Human Rights and Equality Commission website (www.ihrec.ie) provides information on human rights and equality.

Citizenship: Social conditions can lead people to be proactive and engaged or passive and alienated (Ryan & Deci 2000). Effective advocacy promotes the development of active citizenship. In order to promote active citizenship, social care workers may engage in supporting and facilitating self-advocacy groups; individual self-advocacy; and peer-based advocacy groups. In residential services, regular ‘house meetings’ are often facilitated in order to allow service users to give feedback in relation to the service provided.

Policy and Legislative Background

The code of ethics and conduct provided by Social Care Ireland describes the primary goal of social care work as ‘advocating for and with, supporting, enabling and empowering individuals, families and groups’. The values underpinning the code of ethics are described as ‘respect for dignity, the promotion of social justice and equality, honesty and integrity, and the recognition that human potential is most often realised within the interplay between the independence and interdependency’ (SCI 2021). CORU’s code of ethics and conduct for social care workers also refers to the responsibility to advocate for social justice under Section 31 of the Health and Social Care Professionals Act 2005 (SCWRB 2019).

The Jigsaw of Advocacy policy document was published in 2003. It describes advocacy as ‘the key which will unlock entitlement to services for those who are often bewildered by the bureaucratic complexity of access to social and other state services’ (Weafer 2003: 4). Our domestic legislation refers to advocacy in the Citizens Information Act 2007. Social care workers will often incorporate these supports into their day-to-day working life. The National Advocacy Service (NAS), established in 2011 by the Citizens Information Act 2007, provides issue-based representative advocacy to marginalised groups, particularly people with disabilities. A referral to NAS services can be made by or on behalf of anyone fearful that they are not receiving services on an equal basis with others or are being denied their rights. Often social care workers will facilitate advocacy in relation to these issues and, if necessary, escalate a referral to NAS. This is a nationwide service with regional offices. More information about NAS and making a referral can be found at https://advocacy.ie/.

Autonomy, Person-centred Planning and Assisted Decision-making

The people we work with often need support in recognition of their decisions. This is particularly relevant to those with an intellectual disability, psychosocial disability or different communication needs. One of the most significant changes in relation to social care work practice in this area is the principle of respecting the will and preference of the person, which replaced the ‘acting in the best interests’ approach. This means that we now act on the evidence of what choices people want to make. We do not assume that we know what will be best for the person. Social care workers, with our relationship-led approach, are uniquely placed to effectively explore, discover and document the will and preference of the people we work with.

Recognition of legal capacity has traditionally worked on the premise that the self-contained person will make reasoned decisions to protect his own interests. Where someone was not considered capable of reason, they were considered no longer equal in the eyes of the law. The poet John Donne wrote, ‘No man is an island entire of itself; every man is a piece of the continent, a part of the main.’ Relational autonomy is an approach that takes account of the different social systems and supports that influence decision-making.

Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), is concerned with equal recognition before the law. In a commentary on Article 12 of the UNCRPD, Arstein-Kerslake and Flynn state that this Article has been identified as the catalyst for change in this area (Arstein-Kerslake & Flynn 2016). A focus on providing appropriate support rather than placing the onus of change on people with disability is consistent with the social model of disability, a key driver of the UNCRPD.

Ireland is poised to implement an Act loosely based on relational autonomy theory. This Act came about as Ireland was preparing the groundwork for ratification of the UNCRPD. We have, as Moira Jenkins explains, entered a ’new ecology for the exercise of rights’ (2018). She was referring to the new legal framework around decision-making in Ireland. The Assisted Decision-Making Capacity Act 2015 is a phenomenally important piece of legislation for the exercise of autonomy for people who struggle to be recognised as equal in the eyes of the law, such as people who have an intellectual disability or psychosocial disability.

Jo-Anne Watson, an academic in Australia, completed research in 2016 on the role that frontline support workers can play in recognising decision-making capacity through facilitating person-centred planning when providing support to people with very complex communication needs (Watson 2016). Her empirical study of five people with severe or profound intellectual disability provides an insight into what supported decision-making through person-centred planning can look like. It also highlights the effect of supporters having positive assumptions of decision-making capacity as a factor in supported decision-making. The study aims to influence practice and policy efforts to ensure that people with severe or profound cognitive disability receive appropriate support in decision-making.

Social care workers often practise the support of relational autonomy in their working day. ‘Through hanging in and hanging out social care workers learn the likes, dislikes and needs of the service user’ (Lyons 2017: 89). They may participate in an organisational person-centred planning programme. Many of these programmes exist; however, it is the relationship between the social care worker and the person they are planning with that determines the quality of the plan. If the plan is documented and progressed in a meaningful way, it can assist people in realising the right to autonomy and equal recognition before the law. These programmes can be used to establish will and preference in relation to finances, medical support, services offered, places to live and much more.

A Decision Support Service (DSS) is planned to assist in promoting the rights and interests of people who may need support with decision-making. The DSS is not operational yet. There is a plan to commence the service in mid-2022. Information on this service can be found at www.decisionsupportservice.ie.

Advocacy in Practice

The examples included here are an amalgamation of events experienced over the course of sixteen years of social care work in intellectual disability services. No example represents an actual event.

Being an Advocate

Social care work is a focus on individual relationships. We work with service users and discover what system change can help them. We build relationships with the people we support through the ‘doing’ (Lyons 2017: 307) of shared experiences, ‘hanging out and hanging in’ (Garfat & Fulcher 2011). The relationships that are built during this work enable empowerment and advocacy. Unlike other allied health care professionals, social care workers do not learn how to master our craft in one fell swoop. Our job changes with every individual and set of circumstances we meet. It is shaped by the relationship with the person who is being supported and their desires and needs. We master ourselves; we channel our skills, listen, adapt and empower. The outcomes achieved by people we work with are not our professional victories; they are the victories of a service user empowered to overcome barriers and achieve meaningful outcomes.

Social care workers need to think on their feet every day in order to react appropriately (Lyons 2017: 288, 387). Some days we will arrive at work to find the atmosphere chilled out and benign. We will adjust our energy to complement this atmosphere and will find opportunities to progress advocacy for desired outcomes and to develop the relationship. On other days we will need to use the relationship to ask the person to trust us enough to remain calm. Advocacy is an integral part of the everyday work of social care workers. Advocating through relationships and empowerment results in meaningful outcomes for the people we support. We may use the relationship to realise the function of a behaviour and in partnership with the person advocate change in the systems in place to support them.

System-level Change

As well as recognising the role of advocacy in promoting the needs and interests of service users, this proficiency acknowledges the importance of understanding how system-level changes in your social care service can also improve outcomes, including access to care delivery, especially for marginalised groups. According to the World Health Organisation (WHO 2017), ‘people with disabilities are among the most marginalised groups in the world’. System change is the introduction of new practices or structure which are aimed to improve the performance of the service (Birney 2015). This proficiency draws our attention to the importance of change within organisations and how, if managed correctly, it can have a positive impact on outcomes for service users. According to Burnes (2004), organisation change is influenced by both internal or external forces. Leonard (2014) provides an example of how her organisation implemented the New Directions Policy (external force) to change a ‘sheltered occupation service’ into a ‘training and activation service’.

One example of an internally motivated change is based on my own experience. I worked on a Self Advocate and Family Forum in my service, which lobbied the management for a system-level change that would make easy-read appointment letters the norm for correspondence given to service users. This system-level change was driven by the need to empower service users to have easy access to information that was relevant to their care. Making system-level changes can be difficult, especially if the change has an impact on the culture and practice norms of the organisation. Leonard (2014) demonstrates that giving staff time, having lots of meetings focused on the proposed change and the possible impact on each individual, and providing training when needed, helped with the introduction of new practices. This chapter concludes with some tips for practice educators on how to help students understand the important role of advocacy in social care practice.

References

Arstein-Kerslake, A. and Flynn, E. (2016) ‘The General Comment on Article 12 of the Convention on the Rights of Persons with Disabilities: A roadmap for equality before the law, International Journal of Human Rights 20: 471-90 <https://doi.org/10.1080/13642987.2015.1107052>.

Birmingham, D. (2001) Advocacy: A Rights Issue. Forum of People with Disabilities.

Birney, D.P (2015) Challenges for an Interdisciplinary Consideration of Cognitive Training. In E.L. Grigorenko (Ed.). New Directions for Child and Adolescent Development, 147, 21-32.

Burnes, B. (2004) Managing Change (4th edn). Harlow: Pearson Education.

Drage, J. (2013) ‘New Zealand’s National Health and Disability Advocacy Service: A successful model of advocacy’, Health and Human Rights Journal, 19 August. Available at <https://www.hhrjournal. org/2013/08/new-zealands-national-health-and-disability-advocacy-service-a-successful-model-of- advocacy/> [accessed 17 April 2021].

Dworkin, G. (1988) The Theory and Practice of Autonomy, Cambridge Studies in Philosophy. Cambridge: Cambridge University Press. <https://doi.org/10.1017/CBO9780511625206>.

Garfat, T. and Fulcher, L. (2011) ‘Characteristics of a child and youth care approach’, Relational Child and Youth Care Practice 24: 7-19.

Jenkins, M. (2018) ‘The Social Care Professional as Accomplice in the Era of Assisted Decision-making. Working within a New Legal Frame to Help People Realise their Will and Preferences’. Paper presented at the Social Care Ireland Conference: Working with Abilities and Strengths (March).

Leonard, C. (2014) ‘Supporting a Team to Direct and Lead Change in Social Care’, in N. Howard and D. Lyons, Social Care: Learning from Practice. Dublin: Gill and Macmillan.

Lyons, D. (2017) ‘Social Care Workers in Ireland: Drawing on Diverse Representations and Experiences’, doctoral thesis, University College Cork.

Ryan, R.M. and Deci, E.L. (2000). ‘Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being’, American Psychology 55: 68-78.

SCI (Social Care Ireland) (2021) Code of Ethics and Conduct for Members. Available at <https://socialcareireland.ie/membership/code-of-ethics-and-conduct-for-members/> [accessed 18 March 20].

Social Care Workers Registration Board (2019) Social Care Workers Registration Board code of professional conduct and ethics. Dublin: CORU Health and Social Care Regulator. Available at https://coru.ie/files-codesof-conduct/scwrb-code-of-professional-conduct-and-ethics-for- social-care-workers.pdf.

Watson, J. (2016) ‘Assumptions of decision-making capacity: the role supporter attitudes play in the realisation of Article 12 for people with severe or profound intellectual disability’, Laws 5: 1-9

<https://doi.org/10.3390/laws5010006>.

Weafer, J.A. (2003) Jigsaw of Advocacy: A Research Report, Comhairle Research Series. Ireland: Comhairle.

WHO (World Health Organisation) (2017) ‘Ten Facts on Disability’ (online) <https://www.who.int/ features/factfiles/disability/en/> [accessed 2 May 2021].