Emerald Group Publishing Limited
Copyright © 2011, Emerald Group Publishing Limited
Article Type: Editorial From: Social Care and Neurodisability, Volume 2, Issue 3
Welcome to Volume 2, Issue 3 of Social Care and Neurodisability (SCN). This quarterly journal aims to be a single source of knowledge on legislation, best practice and research for those working with and affected by, neurological conditions. This issue has an international flavour and considers some of the challenges in this complex field, particularly in relation to acquired brain injury (ABI).
The practice section includes two personal perspectives on working with people with ABI. Helen Stewart explores her journey, as an Australian Social Worker shifting her specialism and relocating to the UK to work with people who have an ABI. Despite firm foundations in both social work theory and practice, she found herself facing a steep learning curve. She was immersed in the families and individual’s distress as she tried to aid them in navigating the labyrinthine systems for support whilst helping them to come to terms with their trauma. She found not only that her learning came from texts and those around her, colleagues, other professionals and the families themselves, but also that some of her learning was about herself. She reflected on how she was initially left feeling vulnerable, anxious at her skills deficit but also she became acutely aware of her own fragility, how she, like any of us could easily find ourselves in these family’s situations.
Headway, the brain injury association, is a charity which supports those with an ABI and their families. Andrew Gardner, the Chief Executive Officer of the Headway Cambridgeshire Branch, discusses how the personalisation agenda can, not only improve their quality of life, but also the challenge that it offers to voluntary sector organisations such as Headway. Similar to Moore and Jones’s findings in relation to people with dementia, (see SCN 2.2) Gardner is saddened by people’s reluctance to allow people with an ABI to have self-directed support due to generalised assumptions about their capacity and/or the desire to protect them. He has witnessed how individual budgets can really change people‘s lives. However, he is also aware that the very same shift to personalisation can threaten the existence of pre-existing services such as day centres or the development of new initiatives. He argues that the third sector has to walk a fine line between services that are broad enough to meet the needs of most, but flexible and responsive enough to the needs of the individual.
In the research section, Nadia Elsayed looked at the transport needs of people with an ABI in Toronto. She found that although Toronto has Wheel-Trans, a service designed specifically with accessibility and affordability in mind, it currently focuses on those with apparent physical impairments excluding those with the less obvious physical and cognitive impairments experienced by many people with an ABI. She argues that “memory loss, disorientation, confusion, difficulties with judgment, difficulties with problem-solving, difficulties reading a map or following directions, visual difficulties, balance difficulties, spatial difficulties, sensitivity to noise, sensitivity to busy or crowded environments, difficulties moving, difficulties with bending or physical flexibility, extreme fatigue, hearing impairment, anxiety, incontinence, seizures, and communication difficulties” all cause people with an ABI significant problems with negotiating transport systems. These difficulties could deter people with an ABI even trying to travel, but when they do try it can lead to missed appointments and activities, potentially impacting on the health care and occupational opportunities as well as causing social isolation. Furthermore, this leads to care staff having to drive their clients to activities, as Elsayed points out, shifting public responsibility to the community.
In the UK, a much vaunted policy to promote integrated care for people with neurodisabilites was launched in 2005; six years on and Kate Gridley, Fiona Aspinal, Sylvia Bernard and Gillian Parker have undertaken an evaluation of its impact. They found from their mixed method study, that the vision of the National Service Framework for long-term neurological conditions (LTNC) has not yet been achieved. Access to services was varied due to diagnosis and the location of the individual. However, they were able to identify that the following factors contributed to continuity of care: having a single person or team with specialist knowledge of LTNC co-ordinating across boundaries and providing advocacy where necessary; the provision of flexible services, which are long-term and proactive. Three service models stood out as exemplifying these elements: community interdisciplinary neurological rehabilitation teams; nurse specialists; and proactive, holistic day opportunities services. They underline that in the current climate of financial constraints these service models need to be supported.
Our legal section starts with the second part of Paul Sandford, Ed Cooper and Jim Shepherd’s consideration of the benefits available to those who are unable to work due to lost and altered consciousness. Having considered the legal meaning of lost or altered consciousness in SCN 2.1, and the mechanics of the incapacity benefit/employment and support allowance system, here they provide much needed practical guidance to aid successful applications and to assist where appeals are required. Their two papers, as well as illuminating an extremely complex process, should form a useful up to date reference tool for practitioners.
Our second legal paper discusses how, through recent case law, the disability equality duty has had unforeseen consequences upon Local Authorities attempts to cut services to disabled people. This duty first formulated in the Disability Discrimination Act 1995 has, if anything, been enhanced in the Equality Act 2010. Ben Silverstone highlights that not only is the disability equality duty applicable in budgetary decision making but that Local Authorities cannot simply pay lip service when considering the impact of their actions upon disabled people. In R(W) v. Birmingham City Council , EWHC 1147 (Admin) Birmingham Council has been forced to rethink its reforms to adult social care. As Silverstone points out, this ruling could lead to further litigation and will certainly cause Local Authorities to ensure that they are rigorous in meeting their statutory requirements, providing greater safeguards to those people with neurodisabilities whose voices are often not heard.
In the resource section, Dougall McCorry recommends The Oxford Specialist Handbooks in Neurology: Epilepsy by Ganzalo Alarcon and Lina Nashef as an informative guide for those new to the area, and also as a helpful aid for those with more experience. Jean Dillon, similarly found The Gift of Dyslexia by Ronald D. Davis and Seldon M. Braun an engaging and valuable resource. Jean notes how the authors challenge the pathologising of dyslexia and peoples behavioural responses to the condition, which can lead to misdiagnosis, such as attention deficit disorder.
Unusually, we have a third review this issue of Ceri Bowen, Giles Yeates and Síobháan Palmer’s A Relational Approach to Rehabilitation, a text that will be of particular interest to readers of this journal. Using case studies and the limited research in this area, the authors provide guidance and insight into how working on social and emotional functioning is crucial in work with people with ABI. Chris Salter found it an accessible text which could be of real value to professionals in the field.
In the forum section this week, Keith G. Jenkins discusses the shocking BBC exposé of the abuse of adults with learning disabilities. Whilst this abuse appears to have been premeditated, he highlights that at the other end of the spectrum, carers can sometimes react to the stresses that they are placed under by aggressive behaviours from those they care for. The oversimplification of abuse into perpetrator and victim can risk neglecting the complex relationships in which people with neurodisabilities live their lives.
In these straitened times, it can be tempting for agencies, from national to local government, to tighten their criteria and reduce the service they offer. The Big Society suggests an obvious way forward; the voluntary sector, or as Elsayed put it “downloading” public responsibility to the community. However, Kate Gridley, Fiona Aspinal, Sylvia Bernard and Gillian Parker warn that “without statutory support the voluntary sector suffers from fundamental instabilities which can threaten the consistency and longevity of service provision”. Fragmented and overstretched services can create environments where poor and abusive practice can go unchecked. The recent case law highlighted by Silverstone suggests that local government needs to think very carefully about the impact of radical changes in provision upon disabled people.
As professionals we are always working with change in the lives of others, yet can be reluctant and resistant to embracing them ourselves. However, that does not mean that we have to be the passive recipients of change. As Gardner observed: “When the winds of change blow, some people build walls, others build windmills”. Kate Gridley, Fiona Aspinal, Sylvia Bernard and Gillian Parker have highlighted again the need for evidence to support the outcomes we attain with our practice. SCN is one space where you can share those achievements.
Andy Mantell, Patti Simonson