The context of Personalisation and human rights (WS55)
“all the decisions that count” Personalisation and Human Rights Social Services Expo & Conference 19th March, 2013
“personalisation”?• where do we find the roots of personalisation?• how is personalisation defined and described?• what is the relationship between personalisation and the system of social work• what are the implications for the rights of individual people
Independent Living Movement• arising out of civil rights movements of ‘60’s• associated with de-institutionalisation• adopting key principles and values – independent living – participation – control – choice and empowerment• asserting “Social Model of Disability” in face of prevalent “medical model”
social model of disabilityasserts that disability is created by three generaltypes of social barrier, found in:• people’s attitudes — stereotyping, discrimination and prejudice• organisation’s practices — inflexible policies, practices and procedures• the built environment — including inaccessible buildings and services
[biopsychosocial model] “In the Committee stages of the Welfare Reform Bill, the Government committed itself to the use of the social model of disability…..But when theBill was being discussed in the House of Lords, Lord Freud announced that theGovernment had decided that the Bill should be based on the biopsychosocial model of disability instead. This model claims that biological, psychological and social factors all play a part in human functioning, in the context of disease or illness……..The biopsychosocial model is about health and illness, not about impairment and disability. It has nothing to say to the situation of someone who was, for instance, born with cerebral palsy. For the majority of us with long-term illnesses, "illness behaviour" is mainly irrelevant: were not going to get better, no matter how hard we try……..Obviously some of us are going to recover, go back to work, lead normal lives again. Thats wonderful. But many of us are not. I have progressive MS. Im not going to be getting better - Im going to get worse, and there is absolutely no way Im fit to work at present…..But because the government has chosen the biopsychosocial model, theres a very real risk that after a year Ill be forced onto Jobseekers Allowance: and face having it removed if I dont turn up for interviews because Im unable to get out of bed.”http://funkymangosmusings.blogspot.co.uk/2012/01/modelling-disability-spartacusreport.html
Social Work Valueshistorically Social Work has been committed tofive basic values:• the dignity and worth of the individual person• fighting for social justice• providing a service to humanity• working with integrity• demonstrating competence“THE CODE OF ETHICS FOR SOCIAL WORK” BRITISH ASSOCIATION OF SOCIAL WORKERS (2002)
social work and the person• to be treated as an individual• to have the opportunity to express ones feelings• to get a sympathetic response from a an interested professional who adopts a certain level of emotional involvement• to be recognised as a person of worth• not to be judged• to make choices and decisions• to keep personal information secret“THE CASEWORK RELATIONSHIP” FELIX BIESTEK, 1961
Social Work (Scotland) Act, 1968 “Essentially this is a matter of promoting the full personal development of the individual, emotionally as well as physically and mentally, and is largely concerned with the ways in which children are brought up and educated. . .. If positive work of this kind could be extended and developed, the benefits would be great. Individual people would be likely to become more effective, at work as well as in personal life, and community life could be richer and healthier”SOCIAL WORK AND THE COMMUNITY WHITE PAPER, 1966(Cmnd 3065 SWC, 15, pp. 5–6)
DEFINITIONS AND DESCRIPTIONSOF PERSONALISATION
definition of personalisation “by putting users at the heart ofservices, by enabling them to become participants in the design and delivery, services will be more effective by mobilising millions of people as co-producers of the public goods they value.”“PERSONALISATION THROUGH PARTICIPATION” CHARLES LEADBETTER, 2004
levels of personalisation1. services that are more customer-friendly2. services that give people who use them more say in how they are run3. services that give people a more direct say in how money for services is spent4. services that co-opt the people that use them as co-designers and co-producers5. enabling society to organise itself“PERSONALISATION THROUGH PARTICIPATION” CHARLES LEADBETTER, 2004
personalisation and “co-production”• frontline workers focusing on people’s abilities rather than seeing them as problems• increased levels of power and resources being shared with people on the frontline – people who use services, carers and frontline workers• people as assets encouraged to work alongside professionals as partners in the delivery of services
UK Government and personalisationpersonalisation is“the process by which services are tailored to the needs and preferences of citizens. The overall vision is that the state should empower citizens to shape their own lives and the services they receive.”PRIME MINISTER’S STRATEGY UNIT (2007) “HM GOVERNMENT REVIEW: BUILDING ON PROGRESS:PUBLIC SERVICES”
Scottish Social Work and personalisation “personalisation is driving the shape of all public services, with a growing public expectation that services will meet their needs, helping them achieve personal goals and aspirations….To be effective in meeting the challenge, social work services will need to engage individuals, families and communities and to work in new ways with other parts of the public sector, focusing increasingly on prevention.”REPORT OF THE RECOMMENDATIONS MADE BY THE 21ST CENTURY REVIEW GROUP FOR THEFUTURE OF SERVICES IN SCOTLAND, 2006
Scottish Social Work and personalisation “as demanding consumers of goods and services, users of public services will increasingly expect the same variety, choice and flexibility that they expect from the business sector. They will demand a more personalised approach, much greater involvement at all levels and more transparency about the level of services available. Because people are becoming better informed they have growing expectations that services will be delivered where and when they want them.”REPORT OF THE RECOMMENDATIONS MADE BY THE 21ST CENTURY REVIEW GROUP FOR THEFUTURE OF SERVICES IN SCOTLAND, 2006
Scottish Social Work and personalisation “The recommendations we set out in this report will therefore provide the foundations for more personalised services, including: • a greater focus on prevention • delivery across the public sector and partners in the voluntary and private sectors • flexible service delivery”• REPORT OF THE RECOMMENDATIONS MADE BY THE 21ST CENTURY REVIEW GROUP FOR THE FUTURE OF SERVICES IN SCOTLAND, 2006
Scottish Government and Self-Directed Support “the Bill published today will give individualsinformed choice and promote positive collaboration between recipients of social care and those who provide services on their behalf. There has been extensive consultation and engagement withstakeholders on the way forward and I am confident the Bill will help us build on the very positive progress made in implementing our 10-year strategy to providing real choice and control for those receiving social care."MICHAEL MATHESON, PRESS STATEMENT, MARCH 2012
“personalisation already the goal” “a version of personalisation is already the goalof the Scottish social care system. But it is a goalthe system fails to reach consistently. The 1968 Social Work Scotland Act, which inaugurated modern generic social work, set the goals of social work that most social workers still ascribe to today….”“PERSONALISATION AND PARTICIPATION: THE FUTURE OF SOCIAL CARE IN SCOTLAND, FINALREPORT” CHARLES LEADBETTER & HANNAH LOWNSBROUGH, NOVEMBER 2005
resource and risk management “yet the testimony of both professionals, care staff and clients is that the social work system often failsto deliver on these goals. In practice social workers seem to be risk managers and resource allocators, gatekeepers and controllers, often working with clients in crisis when the task is to save them from harming themselves or others”“PERSONALISATION AND PARTICIPATION: THE FUTURE OF SOCIAL CARE IN SCOTLAND, FINAL REPORT”CHARLES LEADBETTER & HANNAH LOWNSBROUGH, NOVEMBER 2005
resource and risk management “Social Work is formally committed to deliver a set of goals – which embrace the ideals of person centred support – and yet the system works to a completely different logic to control risk and resources”“PERSONALISATION AND PARTICIPATION: THE FUTURE OF SOCIAL CARE IN SCOTLAND, FINALREPORT” CHARLES LEADBETTER & HANNAH LOWNSBROUGH, NOVEMBER 2005
“all the decisions that count”“…our workshops and interviews with service users …….uncovered a feeling among many that the service they receive is driven not by what people need but by what the system can deliver:it feels as if the professionals and system make allthe decisions that count. Many of the clients feelas if the professionals are in charge and they have no choice.”[EMPHASIS IN ORIGINAL]“PERSONALISATION AND PARTICIPATION: THE FUTURE OF SOCIAL CARE IN SCOTLAND, FINALREPORT” CHARLES LEADBETTER & HANNAH LOWNSBROUGH, NOVEMBER 2005
Griffiths Report, 1988 “the doctrines of choice and consumerism challenged the profession’s view of itself as a force promoting social change and greater equality. The profession was left with the difficult, if not impossible, task of reconciling its vision with the new ideological and social climate of the 1990s and early twenty-first century”A TALE OF TWO REPORTS: SOCIAL WORK IN SCOTLAND FROM “SOCIAL WORK AND THE COMMUNITY(1966)” TO “CHANGING LIVES (2006)”:IAN BRODIE, CHRIS NOTTINGHAM AND STEPHEN PLUNKETT, 2007
Changing Lives, 2006 “No longer was social work seen as a universal service, but one that is ‘targeted and personalised’, and no longer was it expected to right the wrongs of society, but ‘build capacity for sustainable change’. The vision of a benign, competent state in 1966 was lost in the rhetoric of consumerism and performance management in 2006.”A TALE OF TWO REPORTS: SOCIAL WORK IN SCOTLAND FROM “SOCIAL WORK AND THECOMMUNITY (1966)” TO “CHANGING LIVES (2006)”:IAN BRODIE, CHRIS NOTTINGHAM AND STEPHEN PLUNKETT, 2007
personalisation: the direction of travel• foundational thinking and values• broad public policy thrust• specific Scottish social work policy• current Scottish legislation• report of the Christie Commission…………………..so what’s the problem??
the privileges of personalisation• the choice, control and autonomy proposed and long promised through “personalisation” seem to represent a set of privileges rather than a set of rights• a set of privileges variously afforded or denied, allocated or withdrawn in the absence of consistent criteria• a set of privileges determined by professionals not acting on behalf of the “person”, but acting on behalf of the state through the apparatus of local government
personalisation by right• it’s not acceptable that the basic freedoms personalisation encompasses – participation, control, choice, self- determination, equally valued citizenship, the power to make informed decisions about your own life – should be in the gift of others or of the state• these are rights - not privileges• and in the absence of these rights being respected by the system it is necessary for them to be asserted and claimed
Living Independently and Being IncludedArticle 19 ofthe Convention on the Rights of People with Disabilities• the right to live independently and live in the community• the right to the same choice and control as non-disabled people• the responsibility of Government to do everything it can to ensure that disabled people enjoy these rights
Private Home and Family LifeArticle 8 of the European Convention on Human Rights• the right to respect for – private and family life – home – correspondence• the right to informed consent to any limitations placed on human rights• the right to personal autonomy and personal development• the right to conduct life in the manner of one’s choosing
no exceptions• the ECHR prohibits discrimination on any ground• provision of services must be assessed for indirectly discriminatory impacts• taken together with a human rights based approach to issues of capacity (e.g., under S12 of the Disability Convention) personalisation becomes – an approach for all regardless of status – not contingent upon meeting certain criteria
SHRC “Care About Rights” projectusing FAIR decision-making model• Facts• Analysis of rights at stake• Identification of responsibilities• Review of actions
Facts• what is the experience of the individual?• is the individual being heard?• if not, do they require support to be heard?• what are the important facts to understand?
Analysis of rights at stake• what are the human rights at stake?• can the right be restricted?• if so, what is the justification?• is the restriction proportionate?
Identification of responsibilities• what changes are necessary?• who has responsibilities for helping make the necessary changes?
Review of actions• have the actions taken been recorded and reviewed?• has the individual affected been involved?
Independent Living in Scotland• Core Reference Group Partners –Scottish Government –Independent Living in Scotland [ILiS] –COSLA –NHS Scotland
Independent Living in Scotland “independent living means all disabled people having the same freedom, choice, dignity and control as other citizens at home, a work and in the community………It means rights to practical assistance and support to participate in society and live an ordinary life”INDEPENDENT LIVING: A SHARED VISION, 2010: ILiS, SCOTTISH GOVERNMENT, COSLA, 2012
this presentation is based onPERSONALISATION AND HUMAN RIGHTS: Kavita Chetty, John Dalrymple & HenrySimmons, Centre for Welfare Reform (2012)http://www.centreforwelfarereform.org/library/by-az/personalisation-and-human-rights.htmlSCOTTISH HUMAN RIGHTS COMMISSIONNEIGHBOURHOOD NETWORKSALZHEIMER SCOTLANDCENTRE FOR WELFARE REFORM