THE ACCESS TO LIVING SCHEMEFOR PEOPLE SEEKING A LIFE, NOT A SERVICE

AIM

The aim of the Access to Living Scheme is to promote, protect and fulfil the rights of disabled people to live independently in the community and to secure their full inclusion and participation in all aspects of social and economic life.*

*As per the requirements, accepted in good faith by the UK Government in 2009, detailed in Article 19 of the United Nations Convention on the Rights of Persons with Disabilities

WHAT IS THIS ABOUT & WHY IS IT IMPORTANT?• Disabled people have a right to live independently and to be included in

the community.

• Progress on independent living in England has stalled – there has been no significant progress in disabled people’s experiences of choice and control in their lives since the last government produced the Independent Living Strategy in 2008

• The benefits of developments such as personal budgets have not been felt equally, leaving behind people who require some additional support to take control over their support.

• National government and local statutory agencies have resisted working together and pooling their resources. This causes significant duplication, inefficiency and red-tape, presenting a major barrier to people seeking the support to lead an ordinary life.

WHAT IS THIS ABOUT & WHY IS IT IMPORTANT?• Over 3000 people with a learning disability are currently in ‘hospital

style institutions’ and despite the government’s commitment to have ‘dramatically reduced’ this number by June 2014 the numbers have recently risen. A further 35,000 continue to live in local authority commissioned residential care rather than with support in the community.

• Only 48 per cent of disabled people are in employment, falling to less than 20 per cent of people with a learning disability or a mental health problem. Government programmes to support disabled people into paid employment are presently failing.

• Ongoing pressure on the public finances means existing resources must be used more effectively and that ‘more must be achieved with less.’ Carrying on as now is not sustainable.

THE SCHEME STRIVES TO ACHIEVE THIS BY:

• Incorporating into UK law the right of disabled people to ‘have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and to not be obliged to live in a particular living arrangement’

• Supporting disabled people to plan their lives and to define, secure, direct and manage the support they require to achieve their goals

• Facilitating alignment between the aims and resources of different statutory agencies to support people who require assistance and support to live, learn, work and to achieve their life goals

• Generating local social and economic conditions and opportunities for inclusion and participation in and contribution to community life, including health and well-being, safety and security, political participation, leisure and recreation, employment opportunities, accessible travel and access to goods, services and public space

THE SCHEME CONSISTS OF 4 KEY ELEMENTS

1. A new legal right for disabled people to have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement

2. A legal duty on local statutory agencies to cooperate and collaborate in promoting the rights of disabled people to live independently in the community including through the preparation and implementation of a local access to living strategy

3. The right of disabled people to control over a single personal budget in lieu of services, including in the form of a cash payment, and to support with managing the budget.

4. An Access to Living Centre in every area as part of a national network, building on disabled peoples user-led organisations and Centres for Independent Living

RIGHT TO CHOOSE WHERE & WITH WHO TO LIVE

Article 19 of the United Nations Convention on the Rights of Persons with Disabilities requires States Parties to ensure that ‘persons with disabilities’:

• ‘have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement’

This fundamental right will be incorporated into domestic law.

DUTY TO CO-OPERATE & COLLABORATE

Under the Access to Living Scheme national government and local statutory partners to have:

• A duty to co-operate and to collaborate to promote disabled people’s right to live independently and to be included in the community

• A duty to involve local disabled people in the discharge of this duty

• Duty to co-produce with local disabled people the preparation and implementation of a local access to living strategy every 3 years

• Duty to cross-refer

• Powers to agree and publish shared objectives

• Powers to pool funding towards the achievement of these objectives (including the use of existing powers under s75 Health Act 2006 and Personal Health Budgets regulations)

• Powers to share information

INDIVIDUALS TO ENJOY CONTROL OVER A SINGLE PERSONAL BUDGET

Under the Access to Living Scheme, individuals will:

• Enjoy a legal right to control over a personal budget integrating funding related to education, employment, health, social care and housing as appropriate*

• Have a right to support in the management of personal budgets (see Access to Living Centres)

*A personal budget can be expressed as a direct cash payment to the individual/their appointed advocate, via other legal and financial vehicles such as Individual Service Funds and/or managed by the local Access to Living Scheme.

There will be as few restrictions as possible in how a personal budget can be spent once agreed and any bureaucracy regarding the monitoring of personal budgets will be subject guidance and to a strict tests of justification

LOCAL ACCESS TO LIVING CENTRES – ESTABLISHMENT, STATUS & FUNDINGEach local authority area will have an Access to Living Centre. Such centres:

• Will be independent of direct government control

• Will be governed by a majority of disabled people but required to involve local statutory agencies insofar as they carry out relevant tasks and local communities including family carers

• Can be not-for-profit social enterprises, cooperatives, charities (but not State entities or businesses)

• Will receive a core grant from a fund established by but at arms length and independent of central government and under the control of public appointees, at least 51% of who must be disabled people

• Will in addition be permitted and encouraged to seek funding or resources in kind from other sources, including via partnership working

• Will be permitted to create legal and financial vehicles for the purpose of individuals pooling budgets to achieve shared outcomes

LOCAL ACCESS TO LIVING CENTRES - PURPOSE

The purpose of local Access to Living Centres is to promote the right of disabled people to live independently and to secure their full inclusion and participation in all aspects of social and economic life including through:

• Supporting and assisting individuals to identify and secure the means to realise their aspirations

• Brigading formal and informal resources to these ends

• Acting as a focal point and coordinating mechanism via which local statutory partners are supported to meet their duties, including the development and implementation of local access to living strategies

• Creating platforms and vehicles for collective initiatives between people requiring assistance and support such as peer support, time-banking, pooled funding, mutuals and micro-enterprise

• Promoting more favourable social and economic conditions for inclusion locally

LOCAL ACCESS TO LIVING CENTRES – CORE FUNCTIONS & ACTIVITIES

The core role and functions of Access to Living Centres are to:

• Provide information and advice to individuals

• Support people in the development of personal plans

• Undertake brokerage to secure formal and informal supports, including through helping groups of people to create vehicles through which to pool their resources

• Provide support with managing integrated personal budgets

• Delegated Reviews

• Facilitate peer to peer support and time-banking

• Build relationships with the local community to improve the conditions for and receptiveness towards disabled peoples full inclusion and participation (for example through developing partnerships with local business and transport providers, by seeking to influence local planning of housing and the built environment or by engaging with regeneration programmes)

• Facilitate the development and support the implementation of local access to living strategies

 

NATIONAL ACCESS TO LIVING CENTRE

Government will establish an independent body to be known as the National Access to Living Centre. The role of the body will be to:

• Provide technical assistance including training and skills development

• Convene access to living centres to develop common standards and benchmarking

• Support innovation, identify and promulgate best practices

• Help to evaluate effectiveness, identify and share learning

• Raise the profile and promote the importance of access to living centres and independent living more generally

LOCAL ACCESS TO LIVING CENTRES – ESTIMATED COST• Total annual costs for an Access to Living Centre covering all English

local authority areas would be approximately £75 Million (based on an average annual running cost of disabled persons user-led organisation of £0.5 million)

• Annual running costs of the National Access to Living Centre approximately £3 million

• It is proposed that, given the role the Centres will assume and their instrumental role in the success of a range of social policy objectives, that this modest funding is top-sliced by central government from the budgets respectively of local government social care, the NHS and Job Centre Plus.

LEARNING THE LESSONSIn making these proposals, lessons and ideas have been drawn from previous and existing government-led initiatives including:

• The individual budget pilots and right to control trailblazers

• Evidence regarding the positive benefits and good practices of disabled people’s user led organisations (DPULO’s)

• Other areas of UK policy and practice including Sure Start, personal health budgets, the NHS Right to Request, the Community Right to Challenge, the ‘Our Place’ fund, the Community Organisers Programme, Social Impact Bonds and Innovation in Social Action

• International good practices.

WHAT WORKS?Informal learning from the Right to Control pilots and the Disabled People User Led Organisations Programme suggests the following factors are key to success:

• A values/mission-led approach, shared at a senior level by all statutory and non-statutory partners, invested in the belief that disabled people have a right to live independently and to be included in the community

• A comprehensive approach, alive to the interaction and connections between different areas such as health, social care, housing, employment, criminal justice, rather than focusing narrowly on one area

• Strong local leadership with key skills including negotiation, mediation and brokerage

• Flexibility to work across organisational and funding boundaries and to depart from

• Cooperation and collaboration between statutory agencies required by regulation

WHAT WORKS?• ‘Co-production’ between statutory and non-statutory partners as the

mode of working and the means to establish and maintain trust

• A commitment to and the mechanism via which to refer individuals between funding streams/organisations

• Joined-up funding and shared budgets

• Permissions to share information

• The provision of independent information, advice and guidance

• Peer Support

• Strategic leadership and support at the national level

WHAT GETS IN THE WAY?Informal learning from the Right to Control pilots and the Disabled People User Led Organisations Programme suggests the following are the chief obstacles to success:

• The absence of a statutory requirement on public authorities to engage and cooperate

• Lack of local independent information, advice and brokerage

• Weak local leadership and/or hostility from statutory agencies

• Unfavourable working cultures e.g. increased emphasis on conditionality and sanctions by Job Centre Plus

• Inflexibility – in particular a refusal to allow money to be used across organisational boundaries or in innovative ways

• Red-tape and bureaucracy – multiple assessments, refusal to share information, burdensome monitoring

BUILDING BLOCKSWe’re not starting from scratch. The following developments provide some of the building blocks for the Access to Living Scheme

• The Care Act 2014 – well-being principles, personal budgets, independent advocacy

• Welfare Reform Act 2009 – right to control and positive learning from the Right to Control Pilots

• The Public Sector Equality Duty in the Equality Act 2010

• Personal health budgets

• Individual Service Funds

• Evidence regarding the efficacy of personalised employment support

• Disabled Peoples User Led Organisation programme

BUILDING BLOCKS• ‘Big Society’ initiatives including the Community Right to Challenge,

the ‘Our Place’ fund, the Community Organisers Programme, Social Impact Bonds and Innovation in Social Action

• Community budgeting and Total Place initiatives

• Labour’s principles for public service reform: transforming institutions, prevention, devolution, collaboration and cooperation and contribution.

WHAT DO YOU THINK?

What do you think of these proposals?

You can leave your comments or send them via:http://theindependentlivingdebate.wordpress.com/Accesstolivingscheme