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

ROOTS OF PERSONALISATION

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 disability

asserts that disability is created by three general types 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 the Bill was being discussed in the House of

Lords, Lord Freud announced that the Government 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: we're 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. That's wonderful. But many of us are not. I have progressive MS. I'm not going to be getting better - I'm going to

get worse, and there is absolutely no way I'm fit to work at present…..But because the government has chosen the biopsychosocial model, there's a very real risk that after a year I'll

be forced onto Jobseeker's Allowance: and face having it removed if I don't turn up for interviews because I'm unable to get out of bed.”

http://funkymangosmusings.blogspot.co.uk/2012/01/modelling-disability-spartacusreport.html

Social Work Values

historically Social Work has been committed to five 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 one's 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 DESCRIPTIONS OF PERSONALISATION

definition of personalisation

“by putting users at the heart of services, 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 personalisation

1. 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 personalisation

personalisation 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”

SOCIAL WORK AND PERSONALISATION

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 THE FUTURE 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 THE FUTURE 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 individuals informed 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 with stakeholders 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 goal of the Scottish social care system. But it is a goal the 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, FINAL REPORT” 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

fails to 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, FINAL REPORT” 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 all the decisions that count. Many of the clients feel as if the professionals are in charge and they have no choice.”

[EMPHASIS IN ORIGINAL]

“PERSONALISATION AND PARTICIPATION: THE FUTURE OF SOCIAL CARE IN SCOTLAND, FINAL REPORT” 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 THE COMMUNITY (1966)” TO “CHANGING LIVES (2006)”: IAN BRODIE, CHRIS NOTTINGHAM AND STEPHEN PLUNKETT, 2007

PERSONALISATION AND HUMAN RIGHTS

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 Included

Article 19 of the 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 Life

Article 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

MOVING FORWARD

SHRC “Care About Rights” project

using 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 ofresponsibilities

• 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

SCOTTISH HUMAN RIGHTS COMMISSIONNEIGHBOURHOOD NETWORKSALZHEIMER SCOTLANDCENTRE FOR WELFARE REFORM

this presentation is based on PERSONALISATION AND HUMAN RIGHTS: Kavita Chetty, John Dalrymple & Henry Simmons, Centre for Welfare Reform (2012)http://www.centreforwelfarereform.org/library/by-az/personalisation-and-human-rights.html