Here to help with questions relating to learning disability and its impact on family carers
Project Art Works is familiar to us here at Rescare – because i) the son of one of our trustees participates in its activities, and ii) one of the regular speakers at the ‘Autism a Hands on Approach’ conference, held annually here in Stockport, also has two sons sons who attend.
Project Art Works describes itself thus: “Project Art Works explores and promotes new practical and philosophical approaches to the meaningful involvement of people who have complex impairments in visual art activity that finds its way into mainstream programming and is of exceptional quality in its concept, aesthetic and production. Based in Hastings, UK we collaborate on a wide range of regional and national projects. Our work aspires to excellence in contemporary visual art and is uniquely positioned to bridge the social care and cultural sectors in ways that promote sustainable relationships and bring people with complex needs into the heart of social and cultural life.”
I considered including a precis of the report’s Summary & Conclusions at this point, but gave up in the attempt. Here they are in full (!):
Summary and conclusions
Since 2004, Project Art Works has supported children, young people and adults with complex and additional needs alongside their families, carers and professionals, via a wide range of art focused projects. In addition to its creative programmes, PAW has extensive expertise in specialist systems of support including personalisation, total communication, positive behaviour support. PAW artists work intensively with participants on an individual basis, supporting each to engage with materials and processes, thereby enabling a freedom and sense of purpose not dictated by disability or impairment.
In 2016, Project Art Works received a small grant from the Hastings & Rother Reducing Health Inequalities Fund to conduct a six month pilot study to assess current support for independent provisions for people who have complex behavioural support needs, their families and support workers. Through the pilot project, PAW has been investigating what kinds of support are already available and/or whether new models of support might be needed to ensure high quality and successful personalised provision.
The aim of this report then has been to present findings from the Project Art Works Pilot Study, as described by participant parents, support workers, carers and other professionals supporting young people/adults with complex needs. The call for a more personalised, better co-ordinated approach to managing care for people with longterm conditions and/or disabilities has been embraced by numerous advisory bodies, advocacy groups, governments and agencies from across the UK during the past decade. However, this requires making the perspective of the patient/service user the organising principle of integrated care.
In 2012, a report by the Richmond Group of Charities and The King’s Fund outlined the service components needed to achieve this aim:
– Patients engaged in decisions about their care
– Supported self-management
– Co-ordinated care
– Prevention, early diagnosis and intervention
– Emotional, psychological and practical support.
The Government’s Mandate for NHS England requires it to ‘ensure the NHS becomes dramatically better at involving patients and their carers, empowering them to manage and make decisions about their own care and treatment’ (Department of Health, 2012). This includes the aspiration that individuals with a long-term condition, including those with disabilities and/or mental health issues, should be offered a personalised care plan that reflects their preferences and agreed decisions.
However, only through a development of community provision might services achieve these ambitions.
A mandatory national commissioning framework is required that delivers expansion, pooled budgets, and with a focus upon individual needs rather than system boundaries. The role of user led, community based organisations that both advocate for and provide services for people with learning disabilities and/or autism is critical to fulfilling these aims, as are the individuals themselves, their families, carers, clinicians, managers and professionals across the health service and in local councils, who need to work together to achieve this rapid turnaround. In tackling this challenge, Sir Stephen Bubb (2014) suggests a major extension of community delivery models is required, driven by improved commissioning and crucially, the empowerment of people with learning disabilities and/or autism and their families.
Through its advocacy work, creative programmes, publications and high profile exhibitions, Project Art Works seeks to confront these issues, while supporting those individuals with complex needs, their families, care workers and other professionals across the sector in delivering truly personalised provision. This investigation has been the first step in providing an understanding of those critical issues affecting families, support workers and other professionals in delivering high quality, choice driven lives for individuals with complex needs.
The findings have described many challenges for both individuals and organisations, including e.g. continuing financial constraints and budget reductions; a lack of political support; conflict between agencies and/or service providers; a serious mismatch between policy and practice.
The research process has also afforded time for discussion and reflection between families, support workers and service providers. Importantly, it has encouraged stakeholders to assess the value of work delivered by Project Art Works to children, young people and adults with complex needs and behaviours perceived as challenging.
In the context of a challenging broader economic and social environment, the research findings from the present study are therefore significant and timely.
The Project Art Works Pilot Study has provided core evidence to inform the development of a new charity to address the current deficits in service provision and implement a longer term programme of support including: shared budgets; cross sector training and development; informal networking events; improved skills for families and support workers; the sharing of best practice. The proposed charity aspires to work with all stakeholders to provide a peer led support worker agency and family support provision, in partnership with health and social care services.
This potential organisation would also be eligible for a wider range of funding opportunities, thereby extending costs across a broad income stream.
Within the confines of the present study, the surface has been lightly scratched – at least in terms of research – and has naturally prompted more questions than it may have answered.
However, through a review of the literature, findings from the online survey, interviews and focus groups, it is hoped this investigation has provided at least some insight into those issues concerning the delivery of personalised provision to young people/adults with complex needs and behaviours perceived as challenging.
Importantly, it has provided a rich source of data for discussion and reflection, leading to a greater understanding of the challenges apparent for families, support workers and other professionals in working towards a truly integrated and individualised model of care.
“Project Art Works offers something, rather than nothing! I feel supported for the first time, since my daughter has had to come out of education because of her challenging behaviour.
Supported because of being with families who are going through the same issues and also, because Kate has experienced it with her own son. It’s the first time I’ve been to anything like this for a long time. It feels positive and now I feel a bit more able to tackle the challenges¨ Parent, February 2017