ROFA
Reclaiming Our Futures Alliance
Independent Living for the Future
Foreword
So long as we live under a system that puts profit
before people, we will need to struggle to secure the resources required to
support Disabled people to access the same rights and opportunities as
non-Disabled people. That struggle will take different forms at different times
depending upon the attacks we find ourselves facing and the reforms we consider
most urgently needed under particular circumstances. Throughout, it is
important that we do not lose sight of the bigger picture that we are fighting
for, of a society where each person is valued for their diverse, personal worth
rather than their ability to labour and produce profit, and where each person
is able to truly fulfil their diverse, personal potential.
As desperate as times currently are, we are sadly a
long way off from achieving a society founded upon principles of fairness and
social justice. Nevertheless, the demands that we make and the reforms we lobby
for must be consistent with that wider vision. The way that the personalisation
agenda, sold to local authorities on the basis that it would produce cost
savings and tied to the marketisation of social care, has effectively undermined
Disabled people’s rights and freedoms is a prime example of the dangers of
focusing on reforms in isolation from wider social principles. It is therefore
important that Disabled campaigners continuously review our vision and our
demands.
Grassroots campaigning by Deaf and Disabled people
since 2010 has been focused heavily on social rights, especially on to the
right to independent living and being included in the community as set out in
Article 19 of the UN Convention on the Rights of Disabled People (UNCRPD).
Article 19 – Living independently
and being included in the community
States Parties to the present
Convention recognize the equal right of all persons with disabilities to live
in the community, with choices equal to others, and shall take effective and
appropriate measures to facilitate full enjoyment by persons with disabilities
of this right and their full inclusion and participation in the community,
including by ensuring that:
a) 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;
b) Persons with disabilities have
access to a range of in-home, residential and other community support services,
including personal assistance necessary to support living and inclusion in the
community, and to prevent isolation or segregation from the community;
c) Community services and
facilities for the general population are available on an equal basis to
persons with disabilities and are responsive to their needs.
This is for a number of reasons:
- Measures
imposed through ‘austerity’ and devastating cuts in social care are having
serious adverse impacts that directly affect Disabled people’s rights and
freedoms in exactly those areas set out in Article 19. Instead of closing
Assessment and Treatment Units and moving people with learning
difficulties and autism back to their communities, it has become more
common for Disabled people to be sent many miles from their homes,
families and friends due to a chronic lack of local provision. People with
mental health diagnoses may also be sent a long way away for treatment.
Local authorities and Clinical Commissioning Groups are introducing
maximum expenditure policies which threaten to force Disabled people into
residential care against their wishes. The General Comment on Article 19
published by the UN disability committee in 2017 made clear that
institutionalisation of Disabled people can also occur in people’s own
homes, when their basic needs are neglected and they are denied the
support they need to leave the house and participate in the community. The
rights to independent living and being included in the community set out
in Article 19 provide a clear guide to the rights that Disabled people
should be able to enjoy and a measurement framework for progression.
- Austerity
measures are disproportionately affecting Disabled people’s right to an
adequate standard of living as set out in the UNCRPD. New assessment
processes such as the WCA and PIP arbitrarily divide disabled people into
the “genuine” and the “undeserving”. These assessments are informed not by
Disabled people’s lived experience of impairment, but by insurance
companies aiming to limit claims. The huge reduction in financial support
available to many disabled people under ESA and PIP reform, combined with
delays and failures in the assessment process has resulted in increased
poverty and a well-documented deterioration in our wellbeing and quality of
life. A number of benefit claimants are being forced to cut down on food
and heating, use food banks and borrow money that they are ill-equipped to
return, which is traumatising and, in some cases, has resulted in suicide.
Current measures seem to have links with a neoliberal approach within
which people who are regarded as wealthy, or ‘hard working’ are perceived
as worthy in contrast to people with support needs who are viewed as
second class citizens.
- There
are some acute intersectional issues. Disabled people who have more than
one ‘protected characteristic’ under the Equality Act 2010, who experience
additional inequalities not covered by the Act (related to socio-economic
class, or homelessness, for instance), or have dual diagnoses (including
substance addictions) are especially disadvantaged in relation to
independent living.
- There
are particular issues for Disabled People who are made subject to the
Mental Health Act 1983, with people from BME communities often affected
particularly badly, and people deemed to lack capacity under the Mental
Capacity Act. Some groups of BME service users are particularly likely to
experience the controlling rather than supportive aspects of the
psychiatric system. The MH Act authorises detention and compulsory treatment
for people diagnosed with a (serious) mental disorder when they/others are
thought to need protection. This authorisation removes their right under
Article 19 to live in the community, choose their place of residence and
exercise choices on an equal level with others. Detention and compulsory
treatment, whether exercised through an inpatient setting, or a Community
Treatment Order, also run contrary both to Article 12 and to Article 14 of
the Convention. Thus the UNCRPD Committee has recommended an end both to
substitute decision-making and to ‘compulsory treatment and detention of
persons with disabilities on the basis of actual, or perceived
impairment’. In both hospital and other settings, the UNCRPD guidance also
includes an end to the use of physical and chemical restraint. People who
are neurodivergent and people with life limiting chronic illness are also
subject to detrimental impacts caused by inappropriate referrals to and
interventions used on them within the mental health system.
- The
language of independent living has been appropriated by Government and
public bodies to justify the cuts they are making. Policy documents at
national, regional and local government levels repeatedly refer to
“helping people to stay independent for as long as possible”, often while
simultaneously claiming to be in accordance with Article 19 and yet
demonstrating a clear failure to comprehend a concept of independent
living based on Disabled people’s right to exercise choice and control
over our everyday lives and to access the same chances in life as
non-Disabled people on an equal footing. It is common practice for
essential support to be removed from Disabled people through social care
assessments under the justification of “helping” them to “improve their independence”.
Article 19 rights have thus been co-opted and subverted in order to
facilitate the retrogression of Disabled people’s rights.
- The
UNCRPD is a tool that Disabled people have used to draw attention to the
suffering and distress directly caused by government legislative and
policy measures where we have felt listened to and our experiences
validated. That gives it an immediate relevance to Disabled people’s
day-to-day lives.
- Disabled
campaigners are proud of the independent living movement and all that it
achieved. At a time when discrimination continues to exist legally,
structurally and within many parts of society, daily living conditions are
deteriorating and the odds against us seem overwhelming, it is enormously
important to be able to draw on a source of pride that sits at the core of
our shared identity. It keeps us going, reminding us how powerful we can
be and what we can achieve when we collectivise and are determined. The
right to independent living as set out in Article 19 gives us a clear and
relatively uncontroversial goal to focus on.
There has been recent debate about whether it is
useful to still use the language of independent living. We would argue that it
is. With certain audiences we are seeking to influence it may be expedient to
tailor language in order to be better understood and to convey our messages
more effectively, for example referring to cuts to “social care” rather than
“independent living support services”. Those are decisions that can be made
according to particular circumstances. However, to stop talking about
independent living and to shift our focus away from achieving a right to
independent living would be a strategic mistake. It would rob Disabled people
of one of the few things we have left to hold on to.
If new campaigners come into the movement who are
only aware of the appropriation of the language of independent living rather
than the proud history of the independent living movement, then it is our job
to share our history and learning. We must also remember that the politics of
the independent living movement, based as it is on collectivisation and
grassroots struggle, will not appeal to all. There is a view that it is better
to find a ‘middle way’, acceptable to the status quo than to fight for the fundamental
reshaping of society, that is held for a multitude of reasons, some due to
internalised oppression and others not, ranging from an absence of hope that
real change is possible to a vested interest in maintaining the current system.
Where those political differences exist, there will be times when we find
common goals on which we can campaign together in the pursuit of reforms to
mitigate and alleviate the worst harms, but we must understand them as
differences and reflect on our own position within the context of our wider
principles and values.
Below we set out our demands for a national
independent living service capable of upholding Disabled people’s Article 19
rights and what will need to be in place to achieve it. It has been shaped and
developed through ongoing debate and discussion within the Independent Living
Campaign, set up in 2011, in response to the then planned closure of the
Independent Living Fund (ILF) and most recently through:
- The
independent living workshop at the National Deaf and Disabled People’s
Summit organised by the TUC Disabled Workers Committee and the Reclaiming
Our Futures Alliance in November 2017.
- The
2017 National Independent Living Campaign Conference funded by Disabled
People Against Cuts (DPAC) and co-organised with the Reclaiming Our Future
Alliance.
- A
Reclaiming Our Futures Alliance independent living round table held in May
2018 and follow up email discussions.
Disabled People’s Vision of
Independent Living Support for the Future
Introduction
The social care and mental health systems are in
crisis and as a result Disabled people’s rights to an adequate standard of
living, to inclusion and equal participation in society are being taken
dramatically backwards. Rising levels of charging are increasingly pushing Disabled
people out of receiving social care altogether and leading to a growing problem
of debt and arrears1.
The joint report of the Health and Social Care and Housing, Communities and
Local Government Committees on the long-term funding of adult social care says:
“The combination of rising demand and costs in the
face of reductions in funding has placed the social care system under
unsustainable strain. In its present state, the system is not fit to respond to
current needs, let alone predicted future needs as a result of demographic
trends.”
Besides urging that research be undertaken into
actual and future levels of need and for corresponding investment, Disabled
people have long called for the radical overhaul of both the social care and
mental health systems in order to better fit a human rights approach to
disability. At present, Disabled people’s experiences of independent living and
being included in the community differ considerably depending upon impairment,
for example people with learning difficulties, people who are neuro-divergent
and people with energy-limiting chronic illness (especially medically contested
diagnoses like Myalgic Encephalomyelitis 2)
are less likely to be found to have eligible needs under the social care system
while people living with mental distress are largely confined to a separate system
without access to the same sorts of support. Instead, we are arguing for a
system underpinned by the social models of disability and distress that can be
accessed by all Disabled people regardless of impairment or perceived
impairment. Our vision for a national independent living support system would
also eliminate the post code lottery that exists within current local authority
and CCG administered provision. We believe that all independent living support
should be free at the point of need and as the example of free personal care in
Scotland has shown this could lead to savings in other areas such as the NHS
budget3.
By building on what was most successful about the Independent Living Fund which
had considerably lower overheads than local authority administered support4,
it could also be more cost effective than the current system.Terminology
Under the term “Disabled people” we refer to anyone
who is disabled by society according to the social model of disability. (See
Appendix A).
Priority Demands
- Set
up an independent living taskforce led by Disabled people to develop
proposals for a national independent living support service.
- Explore
in co-production with Disabled people the strongest legal frameworks for
legislating for Article 19 rights, including enshrining the CRPD in
domestic legislation and developing an independent living bill of rights.
- Make
a case for investment in independent living support, including evidencing
social care as a social and economic generator5 and what wider benefits could be saved from
savings to NHS budgets. Model the amount of funding needed to ensure good
quality independent living support meeting need now and in the future to
uphold all Disabled people’s rights under Article 19.
- Educate
the public and promote the benefits of investing in support for Disabled
people.
Vision
That the right to independent living as outlined in
Article 19 of the United Nations Convention on the Rights of Persons with
Disabilities becomes reality:
“All Disabled people to have equal rights to live
in the community, with choices equal to others, and be fully included and able
to participate in the community, through:
- the
opportunity to choose their place of residence and where and with whom
they live on an equal basis with others, without being obliged to live in
a particular living arrangement;
- access
to a range of in-home, residential and other community support services,
including personal assistance necessary to support living and inclusion in
the community, and to prevent isolation or segregation from the community;
- community
services and facilities, for the general population are available on an
equal basis to Disabled people and are responsive to their needs.”
Underlying principles
- Social
and human rights-based models of disability and distress
- The
twelve pillars of independent living
- The
National Survivor User Network’s Manifesto
- Article
19 of the United Nations Convention on the Rights of Persons with
Disabilities
- The
UNCRPD Committee’s General Comment No 5 on Article 19
Core demand
A new universal right to independent living,
enshrined in law and delivered through a new national independent living
service co-created between government and Disabled people, funded through
general taxation, managed by central government, led by Disabled people, and
delivered locally in co-production with Disabled people.
Universal right to independent living
The UN CRPD is not enshrined in UK law and recent
case law has weakened its application in interpreting domestic legislation; for
example, the judgment in Davey vs Oxfordshire states that “great care must be
taken in deploying provisions of a convention or treaty which set out broad and
basic principles as determinative tools for the interpretation of a concrete
measure such as a particular provision of a UK statute. Provisions which are
aspirational cannot qualify the clear language of primary legislation.”6
The inadequacy of the Care Act 2014 to uphold the rights of Disabled people has
been proven in practice. Disabled people’s concerns that the “well-being duty”
implemented through the Care Act would offer insufficient protection against
retrogression of our rights were ignored multiple times in the development of
the legislation. Our petitioning for a right to independent living as outlined
by Article 19 of the UN CRPD to be placed on the statute through the Care Act
was dismissed and although the statutory guidance refers to Article 19 (para
1.19), this does not have the legal weight needed to be effective. In addition,
it has not been co-ordinated well with provision for mental health service
users such as the Care Programme Approach.
We call for new free-standing legislation to
implement an independent living bill of rights, drawn up in consultation with
organisations of Disabled People and enshrining their recommendations. This
legislation would be in accordance with the UNCRPD Committee’s General Comment
on Article 19, including its call to end detention, substitute decision making
and compulsory treatment and to put a focus on intersectional issues too. The
legislation would also cover rights to support which enable Disabled people to
access the same life chances as non-Disabled people in all areas covered by the
twelve pillars of independent living.
Disabled people’s rights under the new legislation
will need to be communicated in accessible ways, with an appeals process, legal
aid, legal status and legal support made available for Disabled people who
consider their rights to have been breached.
This legislation should apply to all Disabled
people who are resident in the UK, regardless of citizenship or asylum status.
National independent living service
The social care element of Disabled people’s right
to independent living will be administered through a new national independent
living service managed by central government, but delivered locally in
co-production with Disabled people. It will be provided on the basis of need,
not profit, and will not be means tested. It will be independent of, but sit
alongside, the NHS and will be funded from direct taxation.
It will build on and learn from the success of the
Independent Living Fund, closed by the coalition government in 2015, and the
failures of the local authority care and support system. It will also learn
from the experiences of user-led Disabled people’s organisations (DPOs),
including those run by people experiencing intersectional discrimination and
disadvantages, user-led social enterprises and co-ops which have innovated and
developed exciting models of self-organised and self-directed care through
personal budgets and peer support. It will work with non-Disabled allies who
share the critique of the existing system and who work to the social models of
disability and distress.
The national independent living service will be
responsible for carrying out assessments and reviews and administering payments
to individual Disabled people. Individuals will not be obliged to manage their
support payments themselves if they choose not to. Alongside establishment of
the national independent living service will be investment in local service
provision so that within each area Disabled people will be able to
choose from a range of peer support options delivered by user-led Disabled
people’s organisations and co-operatives wherever they live. These services
will support them to exercise choice and control over the support they receive
and to manage their financial, administrative and employment responsibilities
including legal duties as employers. Local Disabled people will be meaningfully
involved in investment and commissioning decisions, as well as in researching
and monitoring how well provision is meeting need. Disabled people who are
involved in these processes will also be demographically representative.
The national independent living service will be
located in a cross-government body which can ensure awareness of and take
responsibility for implementation plans in all areas covered by the UNCRPD’s
General Comment on Article 19 and by the twelve pillars of independent living,
whether it be in transport, education, employment, housing, or social security.
The cross-government body will also be responsible for ensuring that
intersectional issues are adequately addressed. Rather than being ghettoised in
the DWP as the Office for Disability Issues is at the moment, this will ensure
that independent living is mainstreamed in every area of activity as an
equalities issue rather than seen primarily as a work and benefits issue.
- Co-created
with Disabled people
The national independent living support service
will be co-created with Disabled people through an independent living task
force led by Disabled people who need/use independent living support.
The service will be designed to be
anti-discriminatory, challenging current discriminations on the basis of age,
ethnicity, sexuality, gender, class, culture, disability and distress. This
will include diversity and inclusion at all levels including organisations of
Disabled people and structures led by Disabled people involved in delivery of
the service.7Funded
through general taxation
Social care should not be funded through set
precepts or levies as evidenced by the difficulties encountered in Australia
with their National Disability Insurance Scheme8.
Funding through general taxation allows greater flexibility to respond to
changing levels of need. This could be done, as advocated by a number of recent
reports,9
through “soft” hypothecation, for example a rise in National Insurance that the
public understands is in order to adequately fund social care. There is much
evidence that the public would be in favour of tax rises in order to fund the
NHS and social care, however there is also evidence that the public vote for
lower taxes and the creation of a specific levy earmarked for social care has
the disadvantage of insufficient flexibility to match demographic changes. Pinpointing
tax rises to cover specific areas can also be problematic in that it places the
spotlight on particular groups. Funding for social care should as with the NHS
be out of general taxation. Managed by central government
The national independent living support service
will build on lessons learned from the Independent Living Fund in being
independent of Local Authorities and CCGs. This will eliminate the current
postcode lottery, which has increased since closure of the ILF10,
and enable greater transparency and accountability to Disabled people.Led by
Disabled people
The governance of the national independent living
support service will ensure that Disabled people are involved and have a
meaningful say at all levels of decision-making with a governing body that is
made up of a majority of Disabled people. Structures will limit the involvement
of non-user led charities and disability organisations.
Alongside the establishment of a national
independent living support service, there will be investment in the development
of Disabled People’s Organisations delivering local services in response to
need and ensuring that a range of options are available to support Disabled
people to live in the community and exercise choice and control over the
support they receive.
User-led organisations will be resourced to provide
support that enables equal participation in society across all areas of Disabled
people’s lives, including Access to Work11,
housing12,
social security and financial advice and wide-ranging service and resource
provision.However, there must be monitoring mechanisms to ensure that local
delivery does not deny the nationally uniform status of the entitlement to
support, so that for example disabled people can move to different areas
without any loss, or threat of disruption, of funding or support services.
Service provision will include a full range of
alternatives to the “white western medical” model approach, psychiatric
medication and clinical treatments which are prevalent in mental health
services and to the re-defining of service user concepts such as recovery in
clinical terms. There will, too, be a wide range of resources which are
important to Disabled people who are currently disadvantaged by shortfalls in
intersectional provision.
Features of a national independent living support
system designed to uphold Disabled people’s rights
The national independent living support service
will be co-created with Disabled people so its features will be decided by
them. However, the features below reflect ideas that would address the current
barriers experienced by adult social care service users.
Eligibility
In place of eligibility criteria, the service will
provide support on the basis of meeting need where it exists so that all
Disabled people experiencing issues that have a significant impact on their
ability to live independently and be included in the community receive the
self-identified support they need. Under the current system of eligibility
criteria certain impairment groups are effectively excluded from social care
support, for example people living with chronic illness and mental distress.
Meeting wider needs saves money in the long-term by preventing crises and
lessening the strain on acute services.
Assessments and support plans
Assessments should take the self-identified needs
of the Disabled person as their starting point and self-assessments should be
available to all who prefer this option.
Assessments should be proportionate, without
compromising the dignity of the Disabled person or being overly intrusive, and
to be designed and carried out with the aim of genuinely assessing need rather
than looking for ways to make cuts.
Assessments should consider all areas of a person’s
life including the ability to socialise and participate in the community on an
equal footing with non-Disabled people, and to take part in education,
volunteering and employment, and not focus solely on personal care. Equally,
they should not be based upon the current approach that views employment as
good for every Disabled person, regardless of the realities of their impairment
and the disabling barriers they face.
Assessments and assessment reports should be
respectful of the Disabled person concerned and of the Disabled person’s
account of their impairment and their needs, even if this is not validated by
or is at odds with medical report or diagnosis. There should be a clear
distinction between assessments of need and support plans. Support plans should
be based on the wishes of the Disabled person even when they disagree with the
assessor’s recommendations. People should have the right to turn down services
offered that they do not want or consider appropriate.
One-size fits all support packages such as reablement
or intermediate care can be completely inappropriate, and indeed, harmful for
people with energy-limiting chronic illness. Reablement should never be the
default response to presenting care needs, nor a necessary gateway to accessing
long -term support. Reablement services should only be offered if a Disabled
person fully understands the concept and agrees that being supported to do more
for themselves could increase function and wellbeing.
Support planning has to be genuinely co-productive.
Disabled people should be supported to fully participate in this process.
Disabled people’s wishes and views on how their
needs can best be met should not be over-ruled by a desire to cut costs, for
example replacing support with technology or aids and adaptations in
circumstances where they would reduce the Disabled person’s quality of life.
Assessments for the new national independent living
service will be delivered by employees of the service itself and will not be
outsourced.
Support package awards
Flexibility should be given in how payments for
support can be spent, with no blanket restrictions (such as not providing night
support; not funding costs for Personal Assistants accompanying Disabled people
on activities; not allowing build–up of contingency funds). Disabled people’s
support packages must pay enough for:
Disabled people’s support packages must cover all
costs associated with managing the package and pay enough for:
- Hourly
Personal Assistant rates that reflect the skills and experience needed for
the role and are in line with NHS pay scales and increase in line with
inflation.
- Pension
contributions and sick pay scheme.
- Compliance
with the National Minimum Wage.
- Increase
in line with inflation.
- Paid
training opportunities for Personal Assistants and training for Disabled
people in managing Direct Payments and managing staff.
- Support
from local services with supervisions, management and conflict resolution.
- Contingency
funding for periods of temporary greater need (e.g. when recovering from
an operation or short-term health problem) and for temporary cover for
absence of PAs due to illness or other emergencies or for if PAs
resign/have to be dismissed and replacement PAs cannot be recruited
immediately.
There will be no caps on how much support can be
funded to support an individual to live and participate in the community.
Disabled people will not be charged for, or have to
make any financial contribution towards, the support they receive through the
national independent living support service.
Administration
Disabled people will have the choice to act as
individual employers or to appoint local services to act as legal employers for
the Personal Assistants they recruit and supervise and be responsible for
administration and payroll. The costs of using administrative and payroll
services of an adequate standard and quality will be covered in the independent
living support awards that Disabled people receive.
Payment Cards should not be presented as the only
or default option for spending support package funds as this limits choice and
control while diverting substantial funds to the companies running the card
services. 13
Services
Investment in local user-led services, including
those led by people experiencing intersectional discrimination, responding to
local need and the provision of services are informed by the views of local
Disabled people from all demographic backgrounds will ensure that a range of support
options are available.
This will include:
- Peer
Support Forums14, training, information and support for Disabled
people using the independent living support service.
- Direct
Payment management, employment support and payroll services.
- Independent
advocacy.
- Social
security and financial advice.
- A
range of therapeutic provisions, including a wide variety of non-medical
alternatives and culturally appropriate options.
- Independent
living aids, adaptations and assistive technology.
Monitoring
Monitoring must be proportionate, and be closer to
the monitoring systems that were employed by the ILF than the burdensome and
intrusive monitoring mechanisms used by local authorities. The National
Independent Living Support Service must also be efficient and timely in its
processing of monitoring information, again by contrast to common practice
within local authorities.
Reviews
Reviews should take place not more frequently than
once every 3 years unless circumstances change and unless requested by the
Disabled person. Disabled people should not be burdened with being repeatedly
forced to re-tell and explain how disability impacts on their lives; nor
continuously repeat their independent living needs. This would allow the
service user to forward plan their lives and the service provider is not snowed
under with case work.
Where possible assessors should hold client lists,
this allows for continuity, for both parties. Where a disabled person requests
a review, say for a change in circumstances, there need to be easy to access
mechanisms in place. Reviews, where practicable, should be carried out by the
original assessor.
Appeals system
There must be a transparent and accessible
complaints and appeals system for Disabled people who are dissatisfied with the
service they receive or decisions made by the National Independent Living
Support Service. This must also be a system which Disabled people find
satisfactory in resolving concerns that they have raised.
Portability
Once assessed and an independent living package is
put in place, this package should be portable. If a disabled person wishes to
move, for personal, health or employment reasons, and if their support needs have
not altered, then they should not be forced to go through the assessment
process again.
Steps to achieving our vision
- Office
for Disability Issues to be placed within either the Cabinet Office or the
Government Equalities Office to give it more reach across different
Government departments.
- Formation
of an independent living taskforce with a meaningful influence, led by
Disabled people from all demographic backgrounds who need/use independent
living support.
- Funding
to make a case for investment in independent living support, including
evidencing social care as a social and economic generator and what wider
benefits could be saved from savings to NHS budgets.
- Model
the amount of funding needed to ensure good quality independent living
support meeting need now and in the future to uphold all Disabled people’s
rights under Article 1915.
- Funding
of user-led research into alternative service options and culturally
appropriate resources for Disabled people.
- A
communications strategy for raising awareness about what we mean by
independent living, Disabled people’s human rights and the role of
Personal Assistants.
- Dealing
effectively with stigma against Disabled people whether at political,
commissioning, or service levels, or within society as a whole.
- The
funding of adequate training for government personnel, commissioners and
service providers about the meaning of independent living and its value, led
by Disabled people
- A
strategy for investment in local user-led provision alongside closure of
institutionalised, segregated settings including long stay hospitals and
Assessment and Treatment Units.
- Fund
work to draw up a case for investment in Access to Work, evidencing the
level of return on investment to the treasury for every pound spent on
AtW.
- A
review of Access to Work with a view to:
·
- Overhauling
the scheme to make it fit for purpose, significantly reduce
administrative and financial errors, address lack of training and hostile
attitudes from AtW advisors towards customers, and replace the current
mentality of gatekeeping with a concern to adequately support Disabled
people,
·
- Identifying
current problems experienced by existing and prospective customers and
ways to make improvements
- Ensuring
provision of a supportive and effective service for Disabled customers
- Expansion
of the scheme to support volunteering and work experience
·
- Improved
scope for Disabled people who cannot work regularly to undertake small
and occasional pieces of paid employment without their benefits being at
risk.
- Rolling
it into the new national independent living support service.
Legislative and treaty change
- Legislate
for a free-standing right to independent living that includes an
adequately resourced right to inclusive education.16
- Implement
the appeals process under the Care Act 2014.
- Bring
into force Section 1 of the Equality Act 2010 to introduce a
socio-economic duty on public sector bodies and dual discrimination
provisions.
- Reverse the changes to legal aid that have
restricted eligibility for Disabled people.
- Remove
UK reservations and interpretative declaration on Articles 24 of the
United Nations Convention on the Rights of Persons with Disabilities17.
- Amend
the Mental Capacity Act 2005 to give full human rights to Disabled people
and their families and to ensure that ‘best interest’ decisions made
reflect the will and preferences of Disabled people and introduce an
accessible system for people to challenge decisions made about them.
- Bring
detention, substitute decision-making and compulsory treatment to an end
for all Disabled people.
Appendix A
Under the term “Disabled people” we refer to anyone
who is disabled by society according to the social model of disability. This
includes:
- People
physical, mobility or sensory impairments
- People
who are Deaf
- People
with learning difficulties/disabilities
- People
living with mental distress
- People
are neuro-divergent
- People
living with chronic illness and long-term health conditions.
We recognise that not everyone within these groups
identifies as Disabled and respect that not everyone with these experiences
considers themselves to have an impairment. There is certainly need for wider
discussion and debate on these issues, however for this paper we have taken the
position that what unites us all are the disabling barriers and experiences of
oppression that we face and we therefore use the term “Disabled people” to
refer to all of us.
Appendix B
The 12 Pillars of Independent
Living
These are:
• Appropriate and accessible information
• An adequate income
• Appropriate and accessible health and social care
provision
• A fully accessible transport system
• Full access to the environment
• Adequate provision of technical aids and
equipment
• Availability of accessible and adapted housing
• Adequate provision of personal assistance
• Availability of inclusive education and training
• Equal opportunities for employment
• Availability of independent advocacy and
self-advocacy
• Availability of peer counselling
The twelve pillars were developed by Hampshire
Coalition of Disabled People building on seven action points, originally
devised by the Derbyshire Coalition of Disabled People, which identified the
barriers to independent living and how they can be removed:
Information
Disabled people require information on what is
available to assist with independent living.
Peer Support
Disabled people need the support of other disabled
people to discuss how to make best use of the information obtained and for
ongoing support.
Housing
Disabled People need accessible housing. This may
be in terms of wheelchair access or in terms of support and advice in relation to
having one’s own accommodation.
Equipment
Many disabled people need particular types of
practical equipment to assist them in living independently.
Personal Assistants
This is the one to one support that some disabled
people need to live in their own home and be part of the community.
Transport
This may mean improved public transport in terms of
physical access, information about the routes, more assistance for passengers
who are unsure about using public transport, and improved routes to take into
account the issues for disabled people. It may mean access to personal
transport such as the use of cars or support to use other forms of transport.
Access
The most obvious examples concern physical access
such as dropped kerbs, level entrances to buildings and provision of accessible
public toilets. However, access goes much further than this. There are barriers
created by systems, practices and attitudes which prevent disabled people from
participating, for example, excluding people with mental health needs from
public meetings.
Appendix C
European Network for Independent
Living (ENIL) Principles
1. Independent living is a process of consciousness
raising, empowerment and emancipation. This process enables all disabled people
to achieve equal opportunities, rights and full participation in all aspects of
society.
2. Disabled people must be able to control this
process individually and collectively. To achieve this goal, we provide peer
support and use democratic principles in our work.
3. As equal citizens we must have the same access
to the basics of life including: food, clothing, shelter, health care,
assistive devices, personal support services, education, employment,
information, communication, transportation and access to the physical and
cultural environment, the right to sexuality and the right to marry, to have
children, and peace.
4. The Independent Living Movement must be a cross
disability movement addressing the needs of all disabled persons. In order for
this to occur we must rid ourselves of any prejudice we have towards disabled
people other than our own and encourage the involvement of disabled women and
other under-represented groups. Disabled children should be enabled by their
families and society in general to become independent adults.
5. Disabled people must obtain all the requirements
for equalisation of opportunities and full participation by defining their own
needs, choices and degree of user control.
6. The Independent Living Movement is opposed to
the development and maintenance of systems which promote dependency through
institutional responses.
7. Disabled people must involve themselves in
research and development, planning and decision making at all levels, in
matters concerning their lives.
http://enil.eu/
Appendix D
The National Survivor User
Network’s Manifesto
Our Voice Our Vision Our Values
We aim to:
1. Address the injustice and harm that have been
caused by cuts to public funding and changes to the benefits system
2. Make the policy of ‘getting the right support,
at the right time, in the right place, from the right person’ a reality
3. Pressure mental health services to make the
principle of ‘nothing about us without us’ a reality at all levels, through
meaningful involvement in decisions about our own individual care and genuine
co-production to develop services
4. Work together with people from socially deprived
and marginalised communities to determine their support and develop
alternatives
5. Challenge institutionalised discrimination and
put equality back on the agenda for mainstream mental health services
6. Call for a reform of the Mental Health Act 2007
to make it fully compliant with human rights and ensure that people are not
harmed or abused
7. Reflect the social model of disability and
promote informed choice and alternatives to medication 8. Reclaim, challenge
and revive survivor knowledge and research
8. Reclaim, challenge and revive survivor knowledge
and research.
Appendix E
Inclusion London Briefing on the
UNCRPD’s General Comment no 5 on Article 19: Living independently and being
included in the community
In August 2017 the UN disability committee
published a “general comment” on Article 19. General comments provide an
interpretation of the provisions of a treaty. In this case the treaty is the
Convention on the Rights of Persons with Disabilities (UNCRPD).
The following points made
within the General Comment are useful to note for campaigning within the
context of the current situation facing Disabled people in the UK and the right
to independent living
- Investing in independent living is cost
effective because it reduces poverty and therefore the dependency of
Disabled people. – Para. 5
- There are NO exceptions to whom the
right to independent living applies
- Emphasis of the importance of addressing
intersectional issues. – Para. 15
- The General Comment criticizes
“Inappropriate decentralization, resulting in disparities between local
authorities”. – Para. 15(k)
- Independent living should not be
interpreted solely as “the ability of carrying out daily activities by
oneself”. – Para. 16(a)
- Article 19 recognises the importance of
a “full social life” within the right to independent living including all
“spheres of social life” such as cultural, political and leisure activities
and “shopping”. – Para. 16(b)
- Institutionalisation is not limited to
people being kept in long stay institutions but includes where Disabled
people are confined in their own homes, isolated and effectively
segregated, unable to access the community due to lack of funding in
personalised support options. – Para. 16(c)
- The obligatory sharing of personal
assistants is mentioned a number of times as contrary to the right to
independent living. – Para. 16(c)
- Funding for personal employment must
take into account “human rights standards for decent employment”. – Para.
16(d)(i)
- Where a State party introduces measures
which regress Article 19 rights in response to economic or financial
crisis the State Party is “obliged to demonstrate that such measures are
temporary, necessary and non-discriminatory”. – Para. 43
- “State parties must ensure that private
institutions are not established in the guise of “community living.”” –
Para. 51
- The availability of accessible and
affordable housing is crucial for de-institutionalisation. – Para. 53
- It is against Article 19 to exclude
Disabled people who require higher levels of support and have more complex
needs. – Para. 60
- All personnel working in relevant areas
including “civil servants monitoring services” need to be adequately
trained on independent living, both training and practice. – Para. 65
- An end must be brought to substitute
decision-making and involuntary institutionalization. – Para. 83
- There must be mechanisms to allow
Disabled people to appeal against decisions concerning independent living
and “substantial” rights to legal aid must be in place. – Para. 82
- Independent living in inherently linked
to inclusive education. Para. 89
1 An investigation by GMB union has
revealed at least 166,000 people are trapped in debt for their social care.
http://www.gmb.org.uk/newsroom/social-care-debt
2 Action for ME (2015) Close to
collapse: an interim report on access to social care and advocacy for people
with ME/CFS
3 Both the Joint Committee report
and the recently published Lord Darzi Review into Health and Social Care
recommend the introduction of free personal care.
4 According to the final annual
report and accounts of the ILF from end of March 2015, the Fund had a 98%
service user satisfaction rate and just 2% of the budget was spent on
administration.
5 Beresford, P. (2016), All Our
Welfare: Towards participatory social policy, Bristol, Policy Press.
6 Davey, R (on the application of)
v Oxfordshire County Council & Ors [2017] EWCA Civ 1308 (01 September 2017)
Paragraph 62.
http://www.bailii.org/ew/cases/EWCA/Civ/2017/1308.html
7 Building on work developed by
Shaping Our Lives looking at overcoming barriers to more inclusive user
involvement :
http://www.invo.org.uk/beyond-the-usual-suspects-towards-inclusive-user-involvement/
8 The NDIS was financed by an
increase in the Medicare levy in June 2014 from 1.5 per cent to 2.0 per cent of
taxable income. This has proved to provide be insufficient funding, and there
are now concerns of a lack of public will for an increase.
9 Long-term funding of adult
social care – First Joint Report of the Health and Social Care and Housing,
Communities and Local Government Committees of Session 2017–19
https://publications.parliament.uk/pa/cm201719/cmselect/cmcomloc/768/76810.htm#_idTextAnchor124
Citizens’
Assembly on Social Care: recommendations for funding adult social care
https://publications.parliament.uk/pa/cm201719/cmselect/cmcomloc/citizens-assembly-report.pdf
The Lives
we want to Lead: the LGA green paper for adult social care and wellbeing – July
2018
https://futureofadultsocialcare.co.uk/
The Lord
Darzi Review of Health and Care Final Report: BETTER HEALTH AND CARE FOR ALL A
10-POINT PLAN FOR THE 2020s, Institute for Public Policy Research; Lord Darzi
June 2018
https://www.ippr.org/files/2018-06/better-health-and-care-for-all-june2018.pdf
10 See Inclusion London’s report
“One Year On: Evaluating the Closure of the Independent Living Fund”
https://www.inclusionlondon.org.uk/campaigns-and-policy/facts-and-information/independent-living-social-care-and-health/ilf-one-year-on/
11 So long as Access to Work remains
separate – we favour these being rolled into the new independent living
service.
12 We also favour Disabled Facilities
Grants being eventually rolled into the new independent living service.
13 A report from the Independent
Living Strategy Group found that over a million pounds a year is spent on fees
and costs to operate the cards and that an estimated £1.5 million has been
spent by 71 local authorities introducing the schemes.
14 These should focus on building
peer support communities and not take the form of professionalised one to one
peer support.
15 Both the Joint Committee report
on the long-term funding of adult social care and Lord Darzi’s review of Health
and Social Care recommend a need for data modelling.
16 The UN Disability Committee’s
General Comment No. 5 on the Right to Independent Living and Being Included in
the Community made clear that inclusive education is an integral part of
Disabled people’s rights under Article 19. The UK government continues to have
a reservation on Article 24 and maintains its position of offering segregated
education as a “choice”.
17 Article 24 is the right to
inclusive education
