Rethinking Learning Disability: Contexts, Voices, Polices
ESRC Seminar Series 2012-13
Seminar 3 Summary
Session 1: Principles and practices of learning disability policy: frameworks and delivery mechanisms
Jean McLennan, Lead on Same as You? (2000) and Keys to Life (2013)
• [Video of highlights of launch of Keys to Life strategy, Murrayfield Stadium, Edinburgh]
• JM asks ‘how do we respond to the video?’, ‘What do you see?’, ‘Is this true social inclusion?’, ‘Is this rights based inclusion?’, or was it just a nice day out? Was it a celebration? Too anodyne? Do we have to balance upbeat messages against the awful reality of people’s lives? We need to reflect on both what people with learning disabilities have achieved, and difficult everyday materialities.
• JM was the principal author of SAY and lead on KtL
• Adopting a personally reflective approach, JM claimed that you need to have passion to this work, particularly in a time of austerity. She has a cousin with Down’s Syndrome, and she has experience as a social worker. From her work in children’s homes she concluded that institutional care is not positive for young disabled people. The poor care delivered in these homes has informed JM’s whole approach to learning disability policy – SAY and KtL – something she referred to as her ‘internal touchstone’ and a source of ‘emotional intelligence’.
• ‘We can be proud’ of the changes since the launch of SAY in 2000. Perhaps the greatest achievement of SAY was to demedicalise LD and introduce the social model of LD. JM argues that in the 13 years since SAY, there is a cohort of young people with LD who have benefitted directly from it, have grown up in a different context.
• A major (and frequently cited) achievement of SAY is the closure of the ‘long-stay’ hospitals for PWLD (and others); there are now only 400 long-stay beds left in Scotland.
• In particular, SAY did not pay sufficient attention to healthcare. Hence, the focus on healthcare in KtL.
• We have a NHS that is responsive and seeks to address health inequalities. However, PWLD do not get the same amount or quality of treatment as others. One key issue is that there is a lack of accurate information on the LD population and their health status/needs (this is the task of Anna Cooper and the Observatory). JM notes that there is a growing LD Health Inequalities Network; that one example of good practice is NHS Western Isles’ GP health screening programme for PWLD.
• More fundamentally, whilst the ‘principles and values’ of SAY made a clear case for social inclusion, this perhaps was insufficient to empower PWLD to seek access to the full range of opportunities in society. So, for KtL a more explicit ‘human rights’ framework (on the opening page of the document) was needed; it is reflective of the focus on rights and freedoms in contemporary society, rights that many PWLD are increasingly know about.
• The evaluation of SAY (undertaken by SCLD) found that, generally, PWLD feel more accepted and valued in their communities, but opportunities for leisure, employment and friendships are not available to all, and are variable in quality.
• Overall, there has been a move away from building-based day services, towards more personalised provision; however, JM acknowledges that, for some people, buildings are useful and wanted; being able to go to the same building and see the same people can be really important. So, she is ‘not being dogmatic’ about provision, rather is advocating a ‘rebalancing’ of personal/collective care. KtL recommends a review of day opportunities to evaluate their role in care and support.
• Employment should be an opportunity ‘for all citizens’ – many people with LD want to work, but need more training and education to achieve this. The SG LD Strategic Implementation Group has the task of opening up employment opportunities for people. A good start would be to get some people with LD employed in SG, in the Health and Social Care Directorate.
• However, there was an acknowledgement that full-time work may not be for all people, and some broader sense of ‘meaningful occupation’ was perhaps a useful way of thinking about work. This apparent shift in thinking is perhaps a reflection of the current context of welfare reform, which places more pressure on people to be in employment, but as JM emphasised, not all want to be or can be in paid work. Volunteering can be an alternative, but increasingly seen as less valued than paid employment.
• Acknowledged that profound and complex disabilities are more challenging; there was a clear need for the work of PAMIS, e.g. Changing Places toilets scheme.
• She returned to the importance of friendship, in particular the lack of ‘true’ friendships for many people with LD; loneliness is a real issue for many, only 1 in 3 can name a person who is a friend (not a family member or paid worker etc.). There is work being done on how people with LD can grow friendships.
• Need to reduce barriers, reduce discrimination, but have to recognise the current financial climate. However, JM keen to stress what the SG is doing, e.g. £5.5m a year for ‘new initiatives’, plus £13.4m for autism, and £40m for the carers agenda. Need to bring people from institutions such as Winterbourne View ‘home’.
• To conclude… We have to work from ‘first principles ‘with a ‘rights-based’ approach’, getting national and local policies to work together without central government micro-management; at the same time have to acknowledge that the financial constraints are real.
• Professionals have a key role to play: social work has ‘lost it a bit’, there is too much procedure and bureaucracy; people with LD need to challenge this, and bring about a cultural shift towards personalisation.
Raymond Bell, Head of Commissioning, Social Work Services, Glasgow City Council
• Relationship between national and central government is important – central government policies make you take stock, which is useful – but are they based on good politics or good governance?
• Glasgow has adopted an ‘Independent Living Strategy’ focused on personalisation and SDS; RB sees personalisation as an adjustment of the ‘moral compass’ for social workers and others. Changing Glasgow’s existing structures and the shift towards ‘consumer choice’ was like ‘the break up of the Soviet Union’. RB saw the change in three stages: the past (long-stay hospitals), the present – ‘better’ state (closure of Lennox castle hospital, and shift to smaller institutions in the community, plus move towards personalisation and SDS), and the future or ‘ideal’ state (an independent life for all). The shift to personalisation has been a ‘transformational’ change, a changed dynamic. RB acknowledged that personalisation/SDS is good for some, but less good for others.
• As part of this ‘transformation’, the Glasgow Independent Living Centre [dominated by physically disabled people?] wants all day centre provision to be closed; however, whilst the overall shift is in this direction, some day centres will remain open in Glasgow.
• Independent Living Strategy: centred in key principles and values of self-determination, choice and control, dignity, freedom, co-production, social model of disability and independent living – RB connected this to a broader change in an individual’s ‘relationship with the state’, what you should expect from the state. Independent living does not mean fending for yourself, instead it focuses on access, peer support, employment, practical assistance, support for participation in society. Ask people what their aspirations are and respond to them. ‘Person-centred planning’ was arguably ‘deficit based’, i.e. focused on what help people needed to overcome their problems, whilst personalisation is ‘outcome based’, i.e. what someone wants to do and how to achieve it.
• RB emphasised the importance of the Public Social Partnership that Glasgow CC is in with the third sector, community based organisations and the independent living movement > together construct a framework of care and support. To give people proper choice and control need to deploy a range of resources – financial, family, community, state.
• QUESTIONS AND DISCUSSION: recognition of challenging financial context, but there are services out there for people; some adults do need protection in this new independent living context (JM); people with LD need to challenge and campaign, social workers need to encourage this – when RB started working in Glasgow, social workers were a politicised workforce; RB also noted the role of LACs in encouraging local people and communities to support people with LD.
Beth Hall, COSLA, Health and Social Care Team
• COSLA is the representative voice of Scottish local government; it is a political lobbying organisation with a vision for a stronger local democracy. In response to the Christie Commission on public sector reform, it has four proposals: Empowering local democracy; Integrating service provision; a focus on Outcomes not inputs; and Defending local choice. COSLA sees devolving power to local authorities and then onto communities as central to individual empowerment.
• A vision for LD: co-signatory to KtL; sees a joint policy response between central and local government in KtL as essential (but notes focus on health in KtL and possible tension between medical and social models of health/disability); plus further devolution to communities and the third sector; and focus on prevention – all central to KtL.
• This broader model of democracy and service provision, involving a larger number of partners, is particularly important in the current financial context – how best to unlick additional resources within communities, and refocus practice away from the provider/user relationship towards families, communities etc. providing support to enable people to be independent. When there is also rising demand for services, it is important to think a new about provision.
• Joint commissioning (health and social care) has to be the way forward; but in a new context of individualised services, with community and other organisations involved, how can services be planned? And for those with complex needs on high cost packages, will such arrangements be suitable and how will they be funded? Some form of community planning, in which all partners are tasked to deliver for people with LD, is a possible way forward. Need to strengthen Community Planning Partnerships, and encourage them to draw on all available resources and interests.
• As resources are (inevitably) further reduced, eligibility criteria will be increasingly needed, but decision-making will have to be transparent. What will happen to personalisation as resources are reduced? There is a real risk to making the transition to personalisation. Those deemed not to be in need still need to be supported. How can we encourage councils to think about this? Also there will be inevitable variations in service delivery between areas, but this must be purely a reflection of need, not eligibility criteria or broader policy.
Angela Henderson, Head of Policy and Performance, SCLD; Sarah Gorst, Local Area Coordinator East Dunbartonshire
• AH: Local Area Coordination (LAC) is an approach to support people with LD to live independent lives. However, need to develop a robust evidence base for LACs; this is part of the KtL review.
• LAC is an ‘asset-based’ approach; people as the ‘agents of change’. It began with ‘The Same as You?’, LACs are employed by local authorities, and health boards. The idea originated in Western Australia to support people living in their local areas. It is focused on social inclusion, choice and control, and the positive contribution that people with LD can make.
• LACs operate according to ten ‘principles’ including control, choice, friendship etc. and that society is enriched by the presence of people with LD. All focused on achieving a ‘good life’ for all. LACs are based in local communities, and really well connected, so they can facilitate activities and opportunities for people with LD.
• Since 2009 SCLD has been funded to support LACs, to try and facilitate a more consistent approach (Kirsten’s Stalker (2007) research found that the implementation of LAC in Scotland was patchy). SCLD helped LACs to focus on the core areas of work (based on the principles noted above): information, guidance, planning, empowering, developing relationships, promoting inclusion, influencing public service delivery. Need further evidence of LACs – quantitative as well as qualitative – variations in LAC provision are positive, but people/areas should not be neglected.
• SG: works with 57 people, e.g. Christopher Ricketts; significantly, he doesn’t meet the criteria for social care support. But still supported by SG.
• SG uses the LAC holistic approach: involving family and friends, encouraging community groups to be inclusive, and being ‘a thorn in the side’ of strategic management.
• Her most important role is to build relationships, working with and learning about the person they support. For Christopher this involved doing things like a benefits check, linking with the National Autistic Society, getting him involved in the local (mainstream) arts club, and local social clubs. All this can promote independent living. The key is to focus on what people can do, not what they can’t.
• SG said that Christopher had made significant achievements in six months – a busy timetable, voluntary work, uses public transport, feels in control, more confident, and doesn’t need SG any more, which for her is a success!
• AH: there are 90 LACs in Scotland now, including 9 new ones in Glasgow, in 20 local authorities. (Some LACs now work with older people and people with mental health issues).
• Funding of LACs could come under pressure as cuts deepen; Community Planning Partnerships should come together to fund LACs, as part of the broader SDS strategy.
• SCLD’s vision for LACs is a more systematic approach to practice. But there are some challenging questions to answer: is it the state’s responsibility to support people to live a good life? What is the particular contribution of LACs to the achievement of a good life? How can the evidence base be built to convince social care commissioners to invest in LACs? (anecdotally there are lots of positive stories, but need more data) Who should be paying for LACs?
QUESTIONS AND DISCUSSION: CP noted that KtL states that individuals should be commissioners of their own care and support. AH responded that this should not be the case. RB countered with the comment that the service user has to able to choose the ‘route’ they want to follow. BH emphasised the value of the ‘brokerage’ role of LACs, to bring together a range of resources for an individual. SG noted that there was a fundamental issue with the use of eligibility criteria and personalisation – the majority of people who come to LACs do not have access to Direct Payments, and so have more limited choice in personalisation. AH/SG: LACs operate different in different places, which can mean innovation – need to unpack what a good life is for different people?
Nicola Grove and Inform Theatre ‘Intervention’
‘Local’ – what happens in our community
‘Resources’ – making the community better; things we can use to help; money, time and ideas; capacity – the ability to do things
Should Scottish Government say that local authorities must spend money to make sure people with LD have a good life? Yes, without we can’t get a quality service. No – to be really equal, everyone should have a good live, not just people with LD.
Is a good life a healthy life? Depends what you mean by health. You can be unwell and have a good life.
Session 2: Concerns and contentions in policy-making with people with learning disability
Keith Etherington, Director, In Control Scotland
• ‘The Same As You?’, ‘The Keys to Life’ and Self-Directed Support are all reflective (and productive) of a new relationship between the individual and the state. This is, overall, a positive development, but there remains a dissonance between policy and what people with LD people experience in their everyday lives.
• ‘In Control Scotland’ (ICS) has, since its formation by SCLD and ALTRUM in 2009, sought to bring the In Control approach (developed in England) to Scotland, centred on enabling people with LD to exercise choice in their care and support and to be valued citizens. To achieve this need a transformation of social care into a system organised through self-directed support. To achieve this, ICS works alongside people with LD and LD organisations, in part to build individual and organisational capacity to support and empower people.
• Crucially, self-directed support (SDS) is so much more than Direct Payments (this is simply a financial mechanism to enable SDS for some people).
• ICS has a ‘7 step model’ (see link below) to being in control, including the bringing together of resources, such as an individual budget, mainstream universal services, family and friends, other assets, and skills and knowledge.
• The model can support a preventative approach to care and support; ICS (and others) have to persuade local authorities to spend money on non-statutory services, such as arts clubs, for people with LD to access so that people can avoid crisis.
• KE states that there are three ‘first principles’ that guide the work of ICS: ‘we all want to love and be loved’; ‘everyone wants a valued social role’; ‘we all want to ‘fly’’ (i.e. have new and fulfilling experiences).
• The context in which to achieve these goals are: the ‘destination’ of independent living; the ‘journey’ of a movement away from discrimination/exclusion (still a real issue) towards inclusion; and the ‘vehicle’ of SDS. And to do this, people want to secure an identity in a local place, and to have enough money to live on (increasingly challenging in a time of welfare cuts).
• The ‘big question’ is then: how does policy and practice support these principles and desires (or not)? As noted above, there is often a dissonance between policy and experience; national policy commonly leads to different experiences in different places and for different people (e.g. SDS can mean cuts in support for some people, an improved life for others).
• The questions that remain are: Has there been a shift in LD policy? How do we ameliorate the variable local application of policy? What is and should be the contribution of voluntary organisations? And what is the role of academic research?
Loretto Lambe, PAMIS
• The role of the voluntary sector is changing (and expanding) in the current context of budget cuts and shift towards SDS and personalisation. In addition, the role of family carers is becoming even more significant.
• PAMIS is a charity that focuses on people with profound and multiple learning disabilities and their families; as an organisation they are committed to inclusion.
• PAMIS begins from the position that there is no agreed definition of profound and multiple learning disability. People do have impairments: low IQ, often physical disability, sensory impairment, and complex healthcare needs. However, the focus is on seeing people as valued citizens with rights.
• It is crucial that the person is not labelled, rather the focus should be on understanding the person and their specific condition and needs.
• In terms of policy, there are similarities between ‘The Same As You?’ and ‘The Keys to Life’, but there are also important differences: people with profound and multiple learning disabilities have more of a presence in KtL, there is more focus on collaborative working, and the focus on health acknowledges the changing nature of the LD population, i.e. there is an increased survival rate.
• KtL has specific implications for PAMIS: the training of family carers to reduce health problems (for individuals and carers); there are still many avoidable deaths, so focus on health and improved practices in NHS is welcomed; PAMIS does health promotion and training so this fits with the health focus; PAMIS is very focused on listening to the voices of stakeholders, i.e. family carers.
• The ‘actors’ involved in providing care and support are changing: as noted above, the role of the voluntary/charitable sector is becoming more important; there is a considerable shift in how services are delivered (increased focus on SDS); the voluntary and private sector are now delivering more services; there is more partnership working between learning disability charities and other organisations, including local authorities and universities (e.g. PAMIS and University of Dundee); the changes to welfare benefits, e.g. loss of Independent Living Fund will have significant consequences for many.
• PAMIS is positive about the opportunities for collaborative working, e.g. with SCLD, Scottish Learning Disability Observatory, IASSIDD (International Association for the Scientific Study of Intellectual and Developmental Disabilities) and other academic research organisations. PAMIS is particularly interested in evidence-based research.
Chris Creegan, Chief Executive, Scottish Consortium for Learning Disability (SCLD)
• SCLD is the ‘child’ of ‘The Same As You?’, i.e. it was set up to respond to the SAY agenda, including public engagement, research and training.
• SCLD’s strategy is now undergoing change, as it works out its role regarding ‘The Keys to Life’; however, it is already clear that there will be a focus on putting evidence into practice, and on developing inclusive ways of working.
• Third sector organisations, such as SCLD, have three key aspects: as representatives, i.e. a key vehicle for eliciting the voices of people with LD; as organisations which are structurally independent of the state, but financially dependent on it; and as delivery agents, providing services whilst at the same time doing advocacy and campaigning.
• SCLD is constituted as independent, but is funded by government, and this affects the way that its voice is understood. However, influencing policy and practice is an important role of SCLD.
• SCLD has to work in partnership with national and local state actors, and at the same time has to hold people and organisations to account.
• There are four aspects to the new policy ‘The Keys to Life’ of particular interest to SCLD: there were challenges in the formation of the policy, and tensions remains, in particular the relationship between central and local government, and between the state and voluntary organisations; the shift in focus of the policy towards health and human rights, and the possible side-lining of the social model approach of ‘The Same As You?’; the delivery of the policy, i.e. the need to create a space for ongoing dialogue, negotiation and creativity to enable the policy to succeed; and seeing KtL as a continued journey from institutionalisation to individualisation.
• The purpose of policy on LD should be a focus on equality, wellbeing and rights (key focus of KtL), and the move towards a ‘good life’ as citizens and service users; with people with LD as co-producers.
• To conclude, some questions: How can we build partnerships with third sector organisations (who have such a significant role now)?; How can we ensure that policy aims and reality are aligned?;What are the practicalities of people with LD-centred policy development?
QUESTIONS AND DISCUSSION: AH asked whether participation is possible for people with profound and multiple LD, especially as lots of services fall away when a child becomes 18; JC asked if opportunities for creativity are being squeezed – how do we find moments and spaces to generate originality? CC agreed that we need to make spaces for discussion and creative thinking; KE’s favoured approach is to try things out, learn as we go along, with less policy and strategy and more practice, and a focus on enterprise; AC and LL noted that avoidable deaths were still an issue in Scotland (referred to the Mencap ‘Death by Indifference’ report, 2007); MS noted that people with profound and multiple LD cannot reach the normal valued social roles, for many small steps can be major achievements.
Nicola Grove and Inform Theatre ‘Intervention’
The theme was ‘making our voices heard’ and enabling people to express themselves. Having choice is spoken about, but in practice choice is not always available. Choice is made difficult when social workers are still in control. You can’t always get what you want, have to recognise the issue of capacity – of individuals, families and organisations. There is a difference between policy rhetoric and real experiences. It is crucial to teach people skills and provide opportunities for people to make choices.
Session 3: Academic research and the landscape of learning disability policy
Anna Cooper, Professor of Learning Disability (Mental Health & Well-Being), Gartnavel Royal Hospital, University of Glasgow
• The purpose of academic research is to improve the evidence base and, in turn, to improve policy and practice. As part of ‘The Same As You?’ consultation health, and the wider determinants of health, emerged as a central issue. This, combined with the broader Scottish Government commitment to address health inequalities (and more broadly to promote a fairer, healthier Scotland), led to the research focus on reducing health inequalities amongst people with LD at the ‘Institute of Health and Wellbeing’ at University of Glasgow.
• Why are there health inequalities amongst people with LD? There is not that much data on the health of people with LD, but what there is suggests that poor health is a common experience, including respiratory problems, cardiovascular disease and cancers. However, at the same time, people with LD tend not to smoke and drink alcohol, but do generally have poor diets.
• The Keys to Life notes that there has been the closure of long-stay hospitals for people with LD, but there remains much still to be done, including value-based judgements by clinical staff, services not working for many people with LD, problems in service delivery often being hidden, and a lack of data to support policy making.
• The LD Observatory has been set up to address some of these issues, including no central records, no routine statistical returns, role of ‘HEAT’ (NHS Health Improvement, Efficiency, Access to Services and Treatment) targets for people with LD, and extensive health needs which are not being recognised and treated. For lots of people with LD very little is know about their health (and other issues). This is the right time to address this.
QUESTIONS AND DISCUSSION: BH encouraged AC and the Observatory to link with local authorities. AH noted the important role of the Observatory in how data is collected on people with LD. JC is nervous around the language that we are encouraged to use, i.e. positive, affirmative language – is this overused in SAY and KtL, and the real, everyday problems and limitations in people’s lives glossed over? AH claimed that the focus on human rights in KtL is useful as a way of pushing people with LD forward, as they are so deeply and historically deprived and excluded. NG stated that a research agenda should include addressing ‘intractable’ and difficult questions, amass large quantitative and qualitative (in the form of detailed case-studies in a range of contexts) data sets, and that the voices and experiences of people with LD should be central to all research.