Is person-centred planning the best social work approach for people with a learning disability? A critical analysis.
By Andrew Rawding
Year 3 – Social Work Undergraduate Student
Introduction
According to the 2021 Census in Northern Ireland, 16,923 of ‘all usual residents’, resident for three months or more from 21 March 2021, has an intellectual or learning disability (LD) (Northern Ireland Statistics and Research Agency (NISRA), 2022). This is less than 1% (0.89%) of the population, with the largest number in the 15-39 age band (NISRA, 2022). However, the number of people with LD is increasing: MENCAP (2023) states there are 31,000 adults with LD in Northern Ireland, with 25,000 of working age; more than double the figure of 10,540 for 15–65-year-olds in 2021 Census (NISRA, 2017). This paper[1] will provide a critical appraisal of person-centred planning (PCP) with people with a learning disability (PWLD). It will start with an overview of PWLD, then outline issues encountered by PWLD in relation to discrimination, inequality, and oppression. It will then provide an overview of PCP with PWLD, and critically appraise PCP in terms of its potential to promote empowerment and facilitate anti-oppressive practice.
Overview of PWLD
It is important for social workers to recognise that the term ‘learning disability’ is disputed (Nunkoosing, 2019), and socially constructed (Gergen, 1985), like other terms used interchangeably for LD: intellectual disability (ID), developmental disability, intellectual impairment, or special educational needs (Baum & Lyngard, 2006). The National Institute of Health and Care Excellence (NICE) (2015:5) states: ‘a learning disability is generally defined by 3 core criteria: lower intellectual ability (usually an IQ of less than 70), significant impairment of social or adaptive functioning, and onset in childhood’. The Department of Health (DOH) (2023a) website and Northern Ireland government services (NIdirect, 2023) definitions emphasise a ‘whole life’ nature to the disability, ‘problems’ with understanding and learning, and the ability or not to live independently. DOH includes the potentially stigmatising term of ‘a reduced intellectual ability’ (DOH, 2023a).
For the social worker focusing on improving people’s lives through strength-based rather than deficit-based practice (Montgomery et al., 2023), these definitions raise questions about who decides and benefits from them: the person labelled and diagnosed with LD, or medical professionals, charities and other stakeholders and gatekeepers? What whole life support is or should be in place to reduce so-called disability and enhance ability? A clinical diagnosis of LD may provide access to support services but may be stigmatising and disempowering for the person themselves (Elinor et al., 2014), impinging on their rights, silencing their voice, and keeping them oppressed (Courtenay, 2020). The inclusion of ‘independence’ in definitions may serve vested interests of those wanting to keep PWLD dependent on their services, or on family through overprotection (Callus et al., 2019). This is a subtle form of ‘disablism’ (Thompson, 2016:133).
‘Disability is constructed by the meaning people place on it’ (Smith, 2000:910). The World Health Organisation (WHO) (2019), which still uses the definitional term ‘mental retardation’ in the International Classification of Diseases 10th Revision (ICD-10), categorises severities of learning disability as mild (approximate IQ range of 50 to 69; mental age from 9 to under 12 years), moderate (approximate IQ range of 35 to 49; mental age from 6 to under 9 years), severe (approximate IQ range of 20 to 34; mental age from 3 to under 6 years), and profound (IQ under 20; mental age below 3 years). These severities can be based on how much help and support a person needs. However, they can also ‘infantilise’ PWLD, keeping them and treating them like children with IQ criteria ignoring gifts, skills, other forms of intelligence and excluding them politically (Safta-Zecheria, 2018). A mild diagnosis may recognise an ability to communicate effectively and conduct self-care but focuses on slow learning of new skills or doing tasks like completing paperwork. A severe diagnosis may include an inability to communicate ‘normally,’ with more support needed with personal care and mobility. A profound and multiple LD (PMLD) diagnosis may require support with feeding, personal hygiene, personal safety, and toileting. Down’s syndrome is also a type of learning disability, as are some forms of autism, cerebral palsy, and epilepsy (NIdirect, 2023).
Relevant disability legislation in Northern Ireland for LD includes the Disability Discrimination Act 1995 (DDA), Special Education Needs (SEN) and Disability Act 2001, the SEN and Disability (Northern Ireland) Order 2005, the Autism (Northern Ireland) Act 2011, and Section 75 of the Northern Ireland Act (1998). Also of significance are the Human Rights Act 1998, the United Nations Convention on Rights of the Child (UNCRC) (1989), and the United Nations Convention on Rights of Persons with Disabilities (UNCRPD) (2006). The importance of the latter is the emphasis on the right of PWLD, whether child or adult, to have their voice heard (Article 12, UNCRC, 1989), with a right to freedom of expression and opinion (Article 21, UNCRPD, 2006), and the right to ‘highest attainable standard of health without discrimination on the basis of disability’ (Article 25, UNCRPD, 2006).
Relevant strategies include the DOH Autism Strategy (2013-2020) and Action Plan (2013 – 2016). However, progress reports on the Action Plan have still not been published (DOH, 2023b). A lack of evaluations since the Bamford ‘Equal Lives: Review of Mental Health & Learning Disability’ highlights just some of the inequalities experienced by PWLD (All Party Group on Learning Disability (APGLD), 2018), including the stigmatising fact that policy documents link LD with mental health, and often with uncritical acceptance (Kelly et al., 2016).
Issues encountered by PWLD in relation to discrimination, inequality, and oppression.
PWLD are discriminated against if they are treated less favourably than others, and it cannot be shown that the treatment is a proportionate means of achieving a legitimate aim (Section 15, 1 (a)(b), Equality Act 2010). PWLD are oppressed when they are treated as inferior and subordinate (Dominelli, 2002). Using the framework of Thompson’s (2016:35) ‘personal – cultural – structural’ (PCS) levels of discrimination, PWLD have been discriminated against and oppressed at personal, cultural, and structural levels by language, stigma, and stereotyping. This has stigmatised them, linking them with ‘mental illness’ (Ditchman et al., 2013), and often isolated them educationally as ‘special needs’ (Thompson, 2016:23). In a survey of 1,000 adult PWLD, over 1 in 3 stated that they were most afraid of being bullied and name calling when they go out (Mencap, 2019). Historically PWLD have been subjected to labels like ‘morons,’ ‘idiots,’ ‘deviant’ and ‘retarded,’ and been locked away in ‘madhouses’ and ‘lunatic asylums’ (McClimens & Richardson, 2010:23).
Discourse theory acknowledges how language can be used to construct dominant narratives by those who have power (Parton, 2009). Researching ‘prevalence’ in Northern Ireland, descriptive terms for LD changed from ‘mental sub normality’ (MacKay and Scally, 1964), to ‘severe mental handicap’ (MacKay et al., 1991) to ‘learning disability’ (MacKay and McDonald, 1996). In the United Kingdom (UK), the government also replaced the dehumanising label ‘sub-normality’ with ‘mental handicap’ and then adopted ‘learning disability’ (Bewley, 2008). In Northern Ireland, this language change was reflected in a ‘Review of Policy for People with a Learning Disability’ in 1995 (DHSS, 1995). However, the term ‘learning disability’ has been rejected by the self-advocacy movement ‘People First’ who use the social model of disability (Oliver, 1990) and self-identify as ‘people with learning difficulties’ (Reeve, 2019:41), rather than with disabilities.
Within the social model of disability, ‘learning disability’ is considered a socially constructed term used by those with the power to diagnose, categorise, legislate, and write policy in medicine, psychology, education, and other professions, suggesting that some people are ‘disabled by their learning, rather than by society’ (Williams & Evans, 2013:3). It conforms to the ‘medicalization of disability,’ reinforcing the idea that there is ‘something wrong with them’ (Oliver, 2009:44), rather than acknowledging ‘disabling environments, barriers, and cultures’ (Oliver, 2009:45). However, even within the social model of disability some of those who self-identify as ‘people with learning difficulties’ (People First, 2023) have themselves a problem with the term ‘disabled person’, which they consider stigmatising as they are ‘a person first’ and do not consider themselves to be the same as ‘wheelchair users’ (Reeve, 2019:41) who have mobility-related disabilities and are themselves discriminated against due to physical inaccessibility (Baudin & Petterson, 2023)
The medical model continues to pathologise and discriminate against those labelled with LD with ‘eugenics by stealth’ (McClimens & Richardson, 2010:27), supported by ‘personal tragedy theory’ (Oliver, 2009:45). For example, in England the government’s ‘Office for Health Improvement & Disparities’ offers the choice for pregnant mothers to screen their baby for Down’s syndrome, Edward’s syndrome and Patau’s syndrome and then also choose to abort the baby (NHS England, 2022). In Northern Ireland, government and health trusts offer privately-funded screening for Down’s syndrome using the discriminatory language of testing for ‘abnormalities’ or chromosomal conditions (NIDirect, 2024; NHSCT, 2024), If a child is born and then labelled with LD, they will face significant health inequalities throughout their life including less access to cancer screening, higher likelihood of serious mental health problems, obesity, diabetes, constipation, gastro-intestinal disorders (Emerson et al., 2016; Mencap, 2019; NICE, 2023), and unrecognised post-traumatic stress (Daveney et al., 2019). PLWD have a shorter life expectancy: males die 14 years earlier, and females 17 years earlier, than the general population (NHS Digital, 2019). In Ireland, people with intellectual disability ‘die younger and have a higher rate of death’ than non-disabled peers (Doyle et al., 2020:1064).
There is also the significant issue of over medication of PWLD, who are ‘prescribed off-licence antipsychotics in the absence of a psychiatric illness’ (Deb et al., 2020:10), often to restrict behaviour labelled as ‘challenging’ (Royal College of Psychiatrists (RCP), 2021; NICE, 2015). Carers and services may find the behaviour challenging but it could be a PWLD’s only way to be heard, in response to how they are being treated as a person and the stress of their environment (NICE, 2015). ‘Stopping over Medication of People with a learning disability, autism, or both with psychotropic medicines’ (STOMP) was introduced in 2016 by NHS England, The Royal College of Nursing, The Royal College of Psychiatrists, The Royal College of GPs, The Royal Pharmaceutical Society and The British Psychological Society (NHS England, 2023). Significantly there is no such campaign in Northern Ireland. The term ‘over-medication’ does not feature in Mencap NI’s ‘Treat me well’ briefing (2019b). During a social work practise learning opportunity in a residential setting for children with severe learning disability, an oppressive “get the meds in them” culture seemed to prevail (Personal Professional Development Workbook, 2022), which appeared to be centred on the needs of professionals rather than being ‘person-centred’ on the needs of the child.
Overview of person-centred planning (PCP) for PWLD and context for use
PCP (Sanderson et al., 1997) is an approach developed in the UK since ‘Valuing People’ (Department of Health, 2001) became public policy in England. Whilst humanistic in nature it is distinct from a therapeutic ‘person-centred approach’ in social work associated with Carl Rogers (Trevithick, 2012). It involves working in partnership with individuals to support planning and decision-making so they can identify needs and goals and ‘set out to achieve their goals’ (Cambridge & Carnaby, 2005:38). It is supposed to be a person-centred way of including a PWLD in the creation and management of their care plan in a residential setting or in community, which recognises their abilities (not disabilities) and provides support for their aspirations, rather than a deficit approach which expects PWLD to fit in with existing services decided for them by others. Key features of PCP are: person-centred; partnership with family and friends; the person’s priorities and support needs are central; action-orientated; exploring possibilities; with continuous reviews (Sanderson, 2000:3-7).
Assessment frameworks formulated for PCP include ‘Making Actions Plans’ (MAPS) (Forest & Lusthaus, 1989) and ‘Planning Alternative Tomorrows with Hope’ (PATH) (Pearpoint et al., 1992). These are not formal assessments but start with blank sheets of paper to gather information, using drawings and meaningful graphics to represent concepts like ‘dreams’, visions’ and ‘gifts. They reflect the ‘exchange model’ (Smale et al., 1993) with PWLD and their family and friends acknowledged as the experts. Another tool is ‘Essential lifestyle planning’ (Smull et al., 2001) which explores what is important for PWLD, how they can stay safe and healthy, support needed, what constitutes good support and bad support for the PWLD, and what needs to be done (Thompson et al., 2008). Social work principles of collaboration, co-production and partnership can be at the heart of these processes where a social worker would be in a facilitatory role as a ‘key problem solver and critical ally’ (Medora & Ledger, 2005:168). Crucially, with PCP the emphasis is ‘placed on shifting power from professionals to users and their chosen ‘significant others’’ (Davies, 2012:50).
There have been mixed responses to the effectiveness of PCP. Mansell & Beadle-Brown (2005) highlight problems with communication with some PWLD, particularly those labelled with severe diagnosis, where self-injurious and challenging behaviours are an issue. This contributes to difficulties with developing and maintaining empathic relationships and agreeing goals. There were also problems with building a support network due to social isolation of some PWLD. Robertson et al.’s (2007) found that PWLD with mental health problems, autism, behavioural problems, and other health conditions were less likely to receive a PCP plan. Those with mental health and behavioural problems were less likely to benefit from a PCP plan (Robertson, 2007). These represent significant inequalities. For social work involvement, a key finding was ‘participants were more than 12 times more likely to receive a plan if facilitators expressed higher levels of commitment to PCP’ (Jones et al., 2007:241).
McCausland et al. (2020) found that PCP can be effective in improving life for adult PWLD in community settings providing there is consistency and familiarity with staff and family. In a systematic review on the effectiveness of PCP, Ratti et al. (2016:63) concluded: ‘The evidence supporting the effectiveness of PCP is limited and does not demonstrate that PCP can achieve radical transformations in the lives of people with ID.’
Clearly whilst the introduction of PCP was welcome, and meaningful outcomes have been produced for some PWLD, it has not been beneficial across the wider population of PWLD (Ratti et al., 2016). There needs to be consideration of differing social contexts, levels of relationship and dependency (Hassan, 2017). Inadequate funding, staff turnover levels, lack of training, inflexibility and power struggles have also limited the effectiveness of PCP (Dowling et al., 2007). Linked to this are the findings of a systematic review of health and social care professionals’ knowledge and attitudes to PWLD, which concluded: ‘health and social care professionals appear to hold negative views of people with learning disabilities, which adversely influences their willingness to work with them’ (Ee et al., 2022:468). A lack of confidence and skills from insufficient specific training, high staff turnover, and limited resources leaves PCP looking good on paper, in textbooks, articles and in policy rhetoric, but still leaves some PWLD disempowered, oppressed by medication, and isolated.
Increased funding, better resources and improved training for staff could all help turn person-centred plans into reality. There has been a move with direct payments and now ‘personal health budgets’ (NHS England, 2023b) to empower PWLD themselves and give them more control, promoting living in the community, rather than in institutions. In England, the ‘Building the Right Support Action Plan’ placed an emphasis on commissioning for people’s lives rather than just for a service. The commitment is to support PWLD ‘to lead healthier, happier, longer lives’ (NHS England, 2023c). In Northern Ireland, self-directed support (SDS) was introduced in 2015, giving people and carers more ‘more control of their agenda and day-to-day lives’ (Patient and Client Council, 2029:17). However, service users and carers felt hampered by administration and bureaucracy and inadequate information about SDS from social workers (Patient and Client Council, 2019), reinforcing the need for professional knowledge to underpin effective social practice and empower rather than oppress (BASW, 2019).
Potential of PCP to promote empowerment and facilitate anti-oppressive practice (AOP)
It might seem obvious that PCP and any ‘person-centred’ practice which places PWLD at the centre and gives a voice to their goals, ‘dreams’ and hopes has the potential to be anti-oppressive and empowering. As Burke and Harrison (2009:218) make clear: ‘the strength of anti-oppressive practice is that it combines the concepts of participation, partnership and empowerment, offering the potential for the service user’s voice to be heard and acted upon.’ PCP appears to fit well with ‘the empowerment and liberation of people, human rights, respect for diversities’ promoted by the International Federation of Social Work (2014), and ‘strengths-based’ and ‘rights-based’ practice (BASW, 2019).
However, decades after PCP were introduced as policy in the UK, research has demonstrated that PWLD continue to be oppressed and discriminated against at personal, cultural, and structural levels (Thompson, 2016). The fault is not with the PWLD, nor their family and friends, nor even with social workers, as ‘the struggle to recognise and respect the autonomy, citizenship and rights of people with a learning disability is a political struggle’ (Stainton, 2009:353). PWLD continue to be faced with a dominant ‘medico-psychological model’ (Stainton, 2009:346) and limited resources in terms of funding (Disability Rights UK, 2023). PWLD have also been subjected to physical and psychological abuse by staff in residential care settings, for example at Winterborne View (Care Quality Commission, 2011) and Whorlton Abbey (Social Care Institute for Excellence (SCIE), 2022) in England, and at Muckamore Abbey in Northern Ireland (Mongan and Sutherland, 2022; The Guardian, 2022).
The complexities and the diversity of PWLD with varying levels of impairment, social contexts, and relationships, means that whilst PCP may have potential it is not in itself the answer. Reviews into abuse in residential settings found that PWLD and their families were not listened to, there was a lack of advocacy and inconsistent support from designated professionals (SCIE, 2022), and PWLD were not validated as ‘experts by experience’ (Mongan and Sutherland, 2022). Innovative approaches may be promoted in health and social care policy like ‘personal health budgets’, but these could be restricted by funding constraints or withdrawn (Disability Rights UK, 2023). Another global pandemic could further exacerbate inequalities for PWLD (Scherer et al., 2022).
These sources of oppression highlight the need for the individual social worker to provide the potential for positive change, emancipation, and empowerment of PWLD. The social worker’s rights-based and relationship-based practice can promote social justice, advocating for PWLD wherever they may be working, in residential care, in the community; or writing policy to challenge oppressive power structures. Social workers need to be ‘critical practitioners’ (Adams, 2009:233), using professional curiosity to courageously question and challenge in their teams and with other healthcare professionals. Informed by research, up to date knowledge of legislation and the voice of PWLD and their families, they can have the confidence to educate other professionals and hold them to account, ensuring that care of PWLD is person-centred.
This requires a willingness to actively listen and be educated by PWLD and their family and friends. It requires self-critical reflection on practise, and effective supervision, to enable reflexivity, creativity and positive risk-taking when others are not empathising with PWLD but focusing on deficits, disabilities and ‘challenging behaviour.’ It requires ‘constructive social work’ (Parton, 2009:227) which creates and promotes a different discourse and social justice for PWLD, where power is expressed in emotionally intelligent relationships, dialogue, and a commitment to listening to PWLD, particularly when they are non-verbal. It requires social workers to challenge and liberate themselves from paternalistic questioning, procedural, care management approaches that stifle the relational heart of social workers so valued by PWLD (Thompson et al., 2008).
Conclusion
This paper has provided an overview of the disputed and complex world of PWLD, subjected to discourses that label, stigmatise, discriminate, and oppress. PWLD continue to suffer significant inequalities in many areas of their lives, particularly in relation to health and well-being. Whilst PCP is potentially a liberating and empowering approach for PWLD, there are limitations to its effectiveness. At structural, cultural, and personal levels, critically practicing and reflective social workers can engage in socially constructive relationship-based social work that is person-centred and empowering for PWLD. It is the approach of the social worker that counts not the social work approach.
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[1] This is a revised undergraduate ‘Social Work in Context’ assignment.