Proposals for an Access to Living Scheme for England designed to take forward the independent living agenda

1. THE
ACCESS TO
LIVING
SCHEME
FOR PEOPLE SEEKING A LIFE, NOT A SERVICE

2. 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

3. 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
assistance to take control over their support.

4. WHAT IS THIS ABOUT & WHY
IS IT IMPORTANT?
• National government and local statutory agencies have resisted
working together or pooling their resources causing significant
duplication and inefficiency while imposing burdensome and costly
red-tape and bureaucracy on disabled people’s efforts to live an
ordinary life.
• 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 people with a learning disability continue to live in
local authority commissioned residential care rather than with support
in the community. Spending on such provision amounts to at least
£2.5 Billion per year
• Ongoing pressure on the public finances means carrying on as now is
not sustainable. Independent living offers a way to use scarce
resources in a much more effective and affordable way.

5. 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

6. 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

7. 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.

8. 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

9. 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 to guidance and to a
strict test of justification

10. LOCAL ACCESS TO LIVING
CENTRES – ESTABLISHMENT,
STATUS & FUNDING
Each 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 from 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

11. 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,
timebanking, pooled funding, mutuals and micro-enterprize
• Promoting more favourable social and economic conditions for
inclusion locally

12. 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 timebanking
• 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

13. 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

14. 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.

15. LEARNING THE LESSONS
In 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.

16. 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
outside of traditional approaches through a relentless focus on
outcomes
• Cooperation and collaboration between statutory agencies required
by regulation

17. WHAT WORKS?
• A focus on clear shared outcomes
• ‘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

18. 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

19. BUILDING BLOCKS
We’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 & integrated health and social care personal
budgets
• Individual Service Funds
• Evidence regarding the efficacy of personalised employment support
• Disabled Peoples User Led Organisation programme
• ‘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.