Fulfilling potential ecdp response (march 2012) - 2. main response final

Fulfilling Potential
ecdp response, March 2012
Part 2/4: ecdp response
This document forms part two of four of ecdp’s response to the Office for Disability Issues
Fulfilling Potential discussion. The main response, coproduced with disabled people in Essex,
answers the key questions asked in the Fulfilling Potential discussion document.

All four parts of the report are available on the ecdp website: www.ecdp.co.uk.

For further information on any element of these documents, please contact Rich Watts (Director
of Policy & Development, ecdp) on rwatts@ecdp.co.uk or 01245 392 324.

SECTION 2: ECDP RESPONSE
Part 1: Realising Aspirations
We recognise there are many societal barriers which currently prevent disabled people from
realising the same aspirations and goals as non-disabled people. Below we discuss what some of
those barriers are. We also share suggestions disabled people have for tackling them to ensure
equality of opportunity in education and employment and that disabled people have the same
chance to live independently as non-disabled people.

One of the focus groups held during our Fulfilling Potential engagement exercise was specifically
focused on finding the views of young disabled people, in recognition of the fact they face
particular issues. A number of the group’s participants are currently in education and of, those
who were not, the majority are unemployed.

Q1. What ideas do you have that could make a difference to you in getting
an education, getting a job or being able to live independently?

Education
We know that in education, 23% of disabled people have no qualifications compared to 9% of
non-disabled people demonstrating that considerable barriers remain for young people in
education.

In general, our participants felt that progress has been made in ensuring equality of opportunity in
education for disabled people. Of those we engaged with, experience of education varied
between those of different ages and was generally more positive for younger people, although
this was not always the case.

Those individuals who did not have an impairment during their education were aware their
disabled peers seemed to have a less positive experience and were treated differently. Indeed, of
those disabled people who had an impairment during their time at school, 46% said they felt their
experience of education was not as good as their non-disabled peersi.

When I was at school, to be disabled meant you were 100% different – Survey
respondent

Fulfilling Potential – ecdp response, March 2012 Page 1 of 21
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They treat you differently… they don’t really know who I am – Focus group participant

Mainstream ‘versus’ special schools
Many more of the younger people we consulted with had attended mainstream schools, whereas
in many cases, older people had only attended mainstream schools if they had acquired their
impairment after leaving school.

I went to a school for Deaf people, but my friend’s Deaf children went to school with
everyone else – Focus group participant

Among those who contributed to this work, integrated schooling was favoured among the
majority. It was seen to provide a more ‘realistic’ experience for the student, as well as a more
equal education. It was felt that negative attitudes towards disabled people could be better
tackled through integration and contact with non-disabled people.

During our focus groups, one parent spoke of their child’s mainstream school being merged with
a local ‘special needs’ school, resulting in her child being much more aware and accepting of
‘difference and disability’.

However, greatest emphasis was placed on ensuring equality of opportunity regardless of the
type of school, whether mainstream or specialist.

Choice for parents of disabled young people in the education system
Research suggests that choice in the education system does not exist the same way for the
parents of pupils with Special Educational Needs (SEN) or children with disabilities as it does for
the parents of non-disabled children. Specifically, pupils with SEN / disabilities have been shown
to be disproportionately affected by over-subscription criteria. This is especially the case when
schools are their own admissions authorities. Furthermore, parents of children with SEN /
disabilities are less satisfied with the outcomes and process of choice than the parents of children
without SEN / disabilities. This is borne out by in particular by appeals numbers: there are more
relevant appeals for pupils with SEN statements than there are for non-statemented children, as a
result of admissions decisions made by schools and others.

At a time when structural changes to the provision of education are occurring, with the advent of
Free Schools and the expansion of the Academy programme, it is vital that data regarding
admissions of children with disabilities and pupils with SEN is closely monitored and reported on.

Physical Access
Physical access issues remain problematic, particularly in schools which had not been used to
including disabled people.

In terms of physical access provisions, this often means a lack of ramps or step-free access,
especially in older schools:

Mainstream education… was hard as the school was not equipped for a wheelchair user
– Survey respondent

Physical access provisions also meant that students were restricted in their choice of academic
subjects and in some cases were unable to study alongside their peers:

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There were accessibility issues within my comprehensive school so I felt I could have had
a better quality education if I didn’t need to decide what subjects to take based on
accessibility – Survey respondent

Of those who had progressed on to Further Education, some had attended universities which
specifically catered for those with physical impairments. However, not all universities cater for
disabled people, restricting the choice of academic institutions available to disabled people:

You don’t come out of university with the same level of independence as peers – Survey
respondent

However, physical barriers experienced by those in education were not seen as insurmountable,
and people pointed to examples of good practice in schools, including those with less accessible
buildings.

Where access barriers were not being addressed, being able to apply the Equality Act (2010) was
seen as one possible solution, although many felt this was not taken as seriously as it should be
and was often unenforceable.

The continuing existence of these basic physical access barriers demonstrates that, while many
believe access barriers are a thing of the past, due in part to legislation such as the Equality Act,
the everyday experiences of disabled people suggests this is simply not the case. Of course, it
goes without saying that the legislation has represented important progress towards achieving
equality, but many very basic problems still prevent disabled people on the ground from fulfilling
their potential.

Attitudinal barriers
For those with non-physical impairments such as learning disabilities, the greatest barrier
experienced was negative or discriminatory attitudes. For these young people, bullying and even
disability hate crime – though not always referred to by this name – were a common feature of
their everyday lives.

[I experienced] regular bullying in the form of name calling and intimidation – Survey
respondent

Overwhelmingly, young people called for greater education about disability issues within schools
to tackle negative misconceptions about disabled people. This suggestion is explored further in
Part 3.

It was felt that bullying could be sufficiently addressed with commitment from the school to tackle
it. However, challenging ingrained social prejudices was viewed as a longer-term challenge, and
one which could be undertaken with the right commitments to educating all students about
disability equality.

In terms of more immediate solutions to negative attitudes, some felt that teachers simply needed
to be better at challenging bullying and therefore may benefit from training to support them in
identifying and addressing this behaviour.

[I experienced] neglectful abuse by school teachers and excessive bullying from
classmates (which was not prevented because the teachers didn’t care) – Survey
respondent

Teacher’s attitude towards my impairment could have been more empathetic… [this]
would have allowed for better outcomes, emotionally and physically – Survey respondent

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We feel that the scope of Ofsted’s framework for the inspection of local authority arrangements to
protect children should be widened to include a clear disability agenda, to ensure schools are
robustly assessed on their ability to prevent bullying and less favourable treatment of disabled
young people (and indeed young people more generally). Poor performing schools should be
identified and encouraged to improve their policies and practices.

Other suggestions for ensuring disabled people did not experience negative treatment or isolation
in school included ‘buddy’ schemes, or peer support within schools, which would enable disabled
students to share their lived experience and provide mutual support to each other within the wider
context of integrated education with non-disabled students.

Disabled parents
Through our engagement work with disabled people, it became evident that disabled parents are
sometimes treated less favourably than non-disabled parents when accessing their children’s
school.

The physical access barriers which affected disabled students as discussed above also affect
disabled parents who may need to attend the school for meetings such as parents evenings or
social events/school plays. Physical barriers may also include inaccessible information for
parents, for example, schools not providing audio versions of school newsletters or Braille school
reports. Likewise poor attitudes towards disabled students can also be experienced by parents.

Any work which is undertaken to address the poor experiences of disabled young people in school
settings should equally be extended to disabled parents.

Employment
The [employment] system is not very good at making reasonable adjustments. This world
is designed for non-disabled people… – Survey respondent

48% of disabled people are in employment, compared to 79% of non-disabled people (both 2008
figures). The people ecdp worked with throughout this engagement exercise want to work and
were offended by the misconception held by some that this was not the case.

Some 83% of those who completed ecdp’s Fulfilling Potential survey felt that it had been more
difficult to find and maintain employment than it would have been for a non-disabled person. As
such our focus group discussions focused on the barriers people continued to face when looking
for and maintaining employment and some possible solutions.

We discussed the specific support available to disabled people to ensure they have equal access
to jobs, during these difficult economic times. It is worth noting that among those disabled people
we worked with, young disabled people felt they were at a particular disadvantage when leaving
school:

I would feel happy if I got a job. There are not a lot of jobs around at the moment for
people with or without disabilities. I hope in the future there will be a lot more jobs for
disabled people because its hard at the moment to get paid jobs – Focus group
participant

Looking at an individuals’ employment ‘journey’ suggests barriers are experienced at a
number of points throughout the employment process.

Experience of JobCentre Plus and Disability Employment Advisers

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Many people reported negative experiences of using JobCentre Plus (JCP) and specifically a
lack of understanding from the Disability Employment Advisors (DEAs) based there. ecdp's
third focus group unanimously agreed that JCP was difficult to use and inaccessible for some
disabled people who needed to use them.

Better support from DEAs… [would improve my experience] – Survey respondent

Disabled people felt they would rather work with a DEA with direct lived experience, but at a
minimum they would expect advisors to have disability equality training.

[My experience would be improved by] a good advisor at JobCentre Plus, who I felt
understood my requirements when trying to find employment – Survey respondent

Unfortunately for some, this was not always the case. This often led to negative experiences of
extra hurdles being created by the DEA or of not being taken seriously. For example, a
disabled woman accessing services at JCP was given wholly inappropriate advice by her DEA
instead of being encouraged to find employment:

The Disability Employment Advisor at the Job Centre said “why don’t you just get
married?” – Survey respondent

Given the DEA specialist role within the Job Centre, it is important that their attitude towards
disabled people is positive and productive, and that individuals within those roles approach
disability from a social model perspective. This is explored further in Part 3.

A positive and productive attitude is especially important at a time when disabled people are
facing a difficult job market and negative press around benefits and unemployment. Ensuring a
quality service for disabled people at JCP should be a clear and monitored outcome for DEAs,
built into their job description and objectives and reinforced through regular training.

During ecdp’s previous work on Access to Work and specialist disability employment support,
we found that only 10% of individuals heard about Access to Work support through JCP. A
third of survey respondents were informed of potential support from their employer or a
colleague and 28% learned of Access to Work from a disabled people’s organisation.

Not only does this suggest that disabled people are not accessing support through DEAs and
JCPs, but more importantly, that peer-led approaches around employment advice have
resulted in people ultimately achieving the support which has enabled them to work.

Employer attitudes
Within the work place, individuals’ experiences of employment are highly dependent on the
employer. For some, this means they are unable to get over the initial hurdle of an interview,
which many feel they will not if they disclose their impairment or it is visible to the employer.
For others, negative workplace attitudes – particularly for those individuals who had recently
acquired an impairment – meant they either left or lost their job, even when their impairment
had no direct impact on their ability to work.

If I list my disability on a job application form, I never get asked for an interview –
Survey respondent

It is difficult to find an employer who understands my requirements for reasonable
adjustments – Survey respondent

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To address this, it was suggested that training employers in disability equality should be part of
the ‘equal opportunity employers’ standard. At a higher level, those organisations which
support employers and businesses, such as Business Link and CBI, should be reinforcing the
importance of disability equality to their members.

Ensure employers have been through appropriate training before they advertise that they
are an equal opps employer – Survey respondent

Educating employers on DET and support that is available to them to enable their
workforce – Survey respondent

Practical support through Access to Work
Looking past negative attitudes, which are addressed more broadly in Part 3, the biggest
barrier to employment is a lack of practical support both when looking for and maintaining a
job.

Access to Work supports individuals to overcome workplace barriers by providing personalised
support for the person. Previous research carried out by ecdp found that Access to Work is
essential to those who use it. 83% of ecdp’s Access to Work survey respondents said they
could not work without the support that Access to Work provides, with a further 12% saying
that they could work but it would be more difficult for them to do so without Access to Work.

Access to work enables me to work. Full stop – Survey respondent

Not only does Access to Work support disabled people to obtain and stay in employment and
improve their own individual life chances and quality of life, but it also provides a net gain to
the Government in terms of tax and National Insurance revenues; approximately £1.48 for
every £1 invested.

It is important that Access to Work is offered to all people who could benefit from it. It is
worrying to note the present trend for the number of people using Access to Work is falling
rather than rising. We would like to see the Government not just reverse this trend, but
significantly extend Access to Work.

People have mixed experiences of using Access to Work. Key to the process being a positive
one for individuals is good communication all the way through the service, from the initial
information about what might be available to the assessment, use of support and review.

When I began to look for work I was not aware of AtW. If I had known about AtW I would
have been working a lot sooner – Survey respondent

Some felt the level of transparency around what might be covered should be increased, so
people do not go to interviews without knowing what help might be available to them.

It would help to know before interview what help I might be able to get, rather than having
to wait until a definite offer of employment is made. It’s no good to sit in an interview
situation and say: “Well, if I’m lucky, I might be able to get XYZ to enable me to work
effectively… offer me the job on the off chance” – Survey respondent

[I’d improve] transparency about what the service will and won’t provide – Survey
respondent

Access to Work also supports individuals to do their job efficiently and to carry out their work
on an equal basis with their non-disabled colleagues. This was particularly important for those

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who knew they could do their job but might have been prevented from doing so without the
correct support.

It is a great facility to enable disabled people to access work on an equal scale to
colleagues. It gives you the confidence to work without the worry of impairment issues
inhibiting efficiency – Survey respondent

Without [Access to Work] I would not attain the status that I am enjoying on equal par
with my peers – Survey respondent

With an understanding that Access to Work plays such an important role for people, it is
essential that this is communicated, not only to potential users but also employers to ensure
their concerns around the extra costs of employing a disabled person can be addressed and
they can meet their obligations to provide support.

[It would help] if employers understood more about Access to Work or other support
available – Survey respondent

Give people more power to insist on the employers fulfilling their responsibly – Survey
respondent

Enable [Access to Work] to force employers to play ball – my current employer tried
their best to get out of making their 25% contribution – Survey respondent

As with all services, it is important that Access to Work policy is reflected by service user’s
experiences in reality. Situations where this does not happen can lead to services working badly
for the individual and preventing them from having choice and control over how they use them.

A recent example of this was a change to Access to Work policy on paying Personal Assistants
who drove their own cars. ecdp worked with Department of Work and Pensions and Department
for Transport to establish the cause of the change, which was subsequently reversed following it
being highlighted.

Although this situation was resolved, the effect was disruptive for those who used this support
and potentially meant that anyone who accessed the service during this period may not have
been able to use support appropriate to them.

DPULOs currently play a vital role providing information, advice and guidance, to empower
individuals to navigate complex services, most notably social care services. We feel DPULOs
could play a further role in supporting people to navigate similar services in employment. An
example of this would be offering direct support to ensure an individual receives Access to Work
when starting a new role where reasonable adjustments are required.

Personal Budgets and Direct Payments for employment support
Given the importance disabled people place on being able to work on an equal basis with non-
disabled peers, ecdp welcomed one of the main recommendations of the Sayce Review,
which suggested there should be a focus on funding individual disabled people in their chosen
jobs, rather than on funding specific institutions. We were pleased to see Government accept
this recommendation, and would like to see the provision of Personal Budgets and Direct
Payments for employment services significantly scaled up.

Independent Living

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What does independent living mean to me? What it means is, basically, it is my life, my
work, what I do every day of my life, and the fact that I am able to do that through the
support of others like the personal assistant sitting next to me is immense. It is very hard I
think to get that message across to people who perhaps are not dependent on others to
support them in their day-to-day living. But it has provided me with a life, my work – I
have worked widely – and the opportunities and the choices to do the things I want, like
you do. I think with the restrictions somebody like myself has, with the kind of severe
impairment I have, it is freedom. It is the freedom for me to be able to do what I want to
do, when I want to do it[.] – John Evans, OBEii

Living independently means different things to different people and can mean accessing different
services and facilities in order to do so. Whatever services people need to use in order to live as
independently as possible, having choice and control over how they work – and how the services
work in combination with each other – is very important.

For example, during our engagement exercise, participants stressed the importance of being at
the centre of decisions about the support they received. It was felt that professionals should be
better able to support people making choices rather than making decisions for them.

[There should be] a better holistic understanding from professionals about what
independent living means to a disabled person – Survey respondent

This includes having an awareness of the expertise disabled people acquire through having lived
experience and taking the time to listen to their views:

Being treated as an equal as opposed to someone who needs support. People taking the
time to realise that I have views… – Survey respondent

It was also felt that services which are most valued by disabled people are often not specialist,
but support them to do everyday tasks:

Having support to do daily things non-disabled people take for granted, like having a
shower, washing my clothes, going shopping, help with housework and finances [enables
me to live independently] – Survey respondent

This reflects findings from ecdp’s joint longitudinal study with the Office for Public Management
on holders of Personal Budgets. The interim findings from the study’s second year found that
Personal Budgets act as a platform for service users from which a wide range of positive
outcomes that support independent living can be achieved. These include accessing high quality
and more tailored services, an increased sense of control, attaining improved emotional well-
bring, an increased sense of dignity, and a stronger sense of self through social interaction and
improved family relationships.

Legislating for Independent Living?
The Joint Committee on Human Rights (JCHR) has recently published its report on the
implementation of the right of disabled people to independent livingiii. The report draws attention
to a number of issues including the need for freestanding legislation to protect the right to
independent living in UK law.

We are persuaded of this argument, but also strongly think that existing legislation must be used
effectively and as intended to ensure change is reflected in disabled people’s everyday lives. The
monitoring arrangements for the Disability Strategy could provide a practical bridge in capturing
and sharing such changes.

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Factors that can support and increase Independent Living are also discussed in Part 2 of this
report.

Q2. What would help you manage better at times of change in your life?

Q3. In those situations, how are you supported or held back by other
people?
During periods of change or transition – whether a change in health, accommodation or anything
else – consistency in services, support and access to funding, is essential.

Some examples of transitions disabled people spoke about during ecdp’s Fulfilling Potential
engagement are included below. While these do not represent an exhaustive list, they
demonstrate some of the issues disabled people may face during periods of change.

Change in health or condition
When changes occur in an individual’s health or condition, a delay in getting support can cause
things to deteriorate further for the individual. The original proposal to extend the qualifying period
for Personal Independence Payment from three to six months highlighted the problems many had
had while waiting to claim Disability Living Allowance

[I]n the intervening period of three/four months I had been forced to arrange a lease on a
car to allow me to get about as I was living in a rural area – Survey respondent

[I faced] poverty due to being unable to work – Survey respondent

I struggled to pay for the things I needed to keep on top of my disability – Survey
respondent

These examples demonstrate that gaps in funding or delays in access to funding can have
negative consequences for the individual in terms of physical and mental health and can in turn
put pressures on other services, such as the NHS. We were encouraged to hear the Government
reconsider the original proposal.

It was clear that through our Fulfilling Potential engagement exercise there was a resounding
feeling that social care and health services are particularly inconsistent because there is often no
dedicated worker appointed to an individual’s case. Having to constantly re-explain the situation
is distressing for the individual but also wastes time for the provider and creates unnecessary
delays. The engagement process highlighted the need for consistent relationships between
service users and service providers.

Greater consistency of service leads to reduced bureaucracy and in turn reduced costs which
would improve the experience for the individual and result in a win-win situation for the disabled
population and service providers.

Moving house
Moving house is considered one of the most stressful life experiences any individual can go
through. However, for disabled people this stress is compounded by additional barriers. This is
especially the case when moving from one local authority area to another, because of the
disruption to people’s care and support.

This is additional to the access barriers disabled people can face in finding accommodation in the
first place:

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[There should be] a bigger selection of accessible accommodation so that choice and
control over where a person lives is based on the area and surrounding amenities rather
than the accessibility issues surrounding the property – Survey respondent

The house I moved to last year was not fully accessible for me, and I didn’t realise I
wouldn’t be able to access a Disabled Facilities Grant because both my husband and I
are employed – Focus group participant

Combined with these barriers described above, renegotiating a support package with a new local
authority and having no guarantee the same support will be provided in the new area can stop
disabled people having the same freedom to move house as other people.

ecdp welcomed the Social Care Portability Billiv which was introduced in the House of Lords last
summer and provided for the possibility that when disabled people move from one local authority
to another, their care and support will be ‘portable’ and so effectively move with them.
Government should revisit the Social Care Portability Bill through the Disability Strategy, perhaps
reflecting it in the Social Care White Paper due this summer.

Again, DPULOs could play a role in supporting disabled people through this process by ensuring
joined-up services across county lines.

Moving services
As noted above, during all changes disabled people might experience, it is important the services
which provide support are as consistent as possible to minimise the problems people experience
during times of transition.

However, where the change relates to a service itself – for example, when young disabled people
move from Children’s to Adult Social Care services – this can be more difficult. High among the
problems caused by this were ‘gaps’ in funding for care, where one source of support stops
before another is in place, effectively leaving people without the support they need.

The primary suggestion for minimising the impact of this transition was good communication, and
where possible, communication via a dedicated case worker, so individuals could establish a
strong relationship with one contact who understands their situation.

Where two or more services are required to work in partnership or parallel, problems are more
frequent and service users report feeling as though they are ‘falling through the gaps’. To
overcome these problems, disabled people felt that using centralised advice and guidance, from
a single source, enables people to join up separate services and get the most out of the support
available to them.

The provision of these types of Information, Advice and Guidance (IAG) services by DPULOs
enables service users to access this type of joined up support, run by peers with lived experience.
The benefits of peer-led IAG are explored in greater detail below.

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Part 2: Individual Control
Independent living and personal control, delivered through personalised services, have begun to
revolutionise social care services for some disabled and older people. Personal Budgets,
including Direct Payments, are designed to put the control back in to the hands of disabled
person, allowing them to buy their own support and manage it in a way that suits them.

However, Direct Payments are only part of the solution to personalising services. Personalisation
needs to be considered within a wider context because having control over one’s life means
having control over all services accessed, whether these are related to meeting care needs or
other requirements.

Disabled people who took part in ecdp’s engagement exercise did not talk solely about care, but
about areas such as transport, employment and being able to access the community in order to
contribute through activities such as volunteering.

As noted above, the relationship between services and how they interact is key to ensuring
disabled people are supported holistically. As such, ecdp believes the conversation around
individual control needs to be broadened to include all policy areas which impact on an
individual’s life.

ecdp believes the principles of personalisation create the right platform for disabled people to
fulfil their potential and contribute to the community more widely. During our engagement
exercise, the individuals we worked with were clear that personalisation was the vehicle for
greater inclusion and participation of disabled people.

The questions below are to some degree similar and so we have answered them collectively.

Q4. What helps you to have choice and control over your day-to-day life?

Q5. What else would help you to have more choice and control over your
day-to-day life and the support you get?

Q6. What would help you to access services and activities which suit your
needs?

Choice and control
It is often a combination of things which allow disabled people to have choice and control over
their lives. This might include welfare support, social and health services, community, peer and
informal support.

Though not all disabled people require any or all of these services, when they are used it is
essential that they work together, and do so around the individual.

My support should be the support I choose – Focus group participant

Below we capture some of the obstacles our Fulfilling Potential engagement participants
highlighted in seeking to have choice and control.

Inflexible and bureaucratic systems

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Disabled people access support from a variety of sources and funding streams and use it in
different ways to give them choice and control. However, disabled people we have engaged want
the system to work for them rather than having to work around inflexible systems.

An example given by participants was of welfare support, which in all its forms plays an important
part in the lives of many disabled people. However, a number of individuals felt the welfare
system prevented them from taking full control of their lives:

Every service I have used makes it more difficult to have choice or control. If you try and
do something for yourself you risk losing benefits or being investigated – Survey
respondent

I have felt as though my life was controlled by the DWP and NHS. Both have made my
life far more difficult than necessary. Keeping them at arms length as much as possible
has given me more control in my life – Survey respondent

The benefits system is inflexible and bureaucratic in every possible way. It is not user
friendly – Focus group participant

However, individuals acknowledge the support the system provides is nevertheless essential in
providing independence, and so addressing the inflexibility and bureaucracy which can create
barriers for people would enable the system to better support this outcome.

Without my DLA I would lose my adapted car, my independence and my job. DLA
supports me to contribute because it enables me to work full time – Survey respondent

I could not manage without DLA… without this I would cost the NHS a fortune – Survey
respondent

Practical solutions to such bureaucracies are ones that have been wished for since time
immemorial, including sharing information once and short(er) application forms.

More self-assessment
As one means of overcoming bureaucratic and inflexible systems, we would like to see more
consideration given to the role of self-assessment in public services. Self-assessment within
social care (with its considerable public budget) is becoming further established and evidence
suggests that it leads to both better outcomes for service usersv and better use of public
resourcevi. As such, we would like to see this provided for in both assessments and reviews in
public services more generally.

Communications
Choice and control can only be exercised if people know the choices available to them.
Unfortunately, information, advice and guidance regarding increased choices available to
disabled people are not always clearly communicated or promoted. Even if they are, mechanisms
that may be considered to work for the general population may not work for disabled people. For
example, we know disabled people are far less likely to have used the internet. Indeed, nearly
half of all adults who have never used the internet are disabled people.

Further manifestations of communications and information problems include:
• When people are able to access the services they require, not all options available are
communicated to them. For example, some of the disabled people we engaged with were
unaware they could be eligible for a Direct Payment or had not been offered different options
for creating their support plans

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• Many disabled people we engaged with have also faced problems specifically relating to the
way services communicate with them and with other services they use. For example,
information can be duplicated or not received at all and as a result people feel that they might
‘fall through the gaps’
• Advocacy services, working with or on behalf of disabled people, can go some way to
addressing such issues by opening doors to otherwise inaccessible services. But such
services are often oversubscribed and/or underfunded.

Peer support
Through peer support, disabled people can be supported by others with lived experience to
navigate the complex system of services. This approach gives the service user a centralised and
consistent point of contact who understands the system from direct experience and can inform,
advise and guide the individual to ensure they get the most out of services they need to live
independently.

Furthermore, peer support enables disabled people to use their lived experience to engage with
other disabled people, their communities and the issues which affect them at a national and local
level. This is beneficial not only to the recipient of the support, but also the peer providing it –
enabling routes ultimately into community involvement or employment.

DPULOs have a role to play in addressing the issues associated with individual control outlined
above. This includes through service provision (such as information, advice and guidance
services), and through facilitating peer support.

ecdp has demonstrated the effectiveness of peer led approaches in increasing choice and control
through increased uptake of Direct Payments (DP). 89% of people in Essex who receive
information, advice or guidance from a disabled peer take up a DP, compared to 13% nationally.
Similarly, 100% of people who have developed or reviewed their health/social care plan with a
peer took up a DP, compared to 17% locally.

ecdp’s engagement exercise to inform this response was in itself a good example of peer
support in action: many disabled people worked together and offered peer support to other
participants, demonstrating some of the benefits of peer support and how it can be applied.

Working together makes you realise you are not the only one in this situation. Other
people have good ideas which can help – Focus group participant

Right to Control
The Right to Control represents a potentially exciting glimpse of what public services could look
like if personalised approaches – focused on the individual, rather than the service – become the
norm.

ecdp supports the Government’s Right to Control legislation, which gives disabled people the
information, advice and guidance they need as a legal right to know up-front how much money is
available to pay for the range of support they need from across a variety of funding streams.

Right to Control is about disabled people identifying their needs and discussing how agreed
outcomes can best be met by bringing together funding streams from more than one agency and
accessing this through a central point.

As a service user and someone with impairments that have lasted many years, I
welcome RtC as another step forward in the long campaign to ensure we have genuine
choice and control – Right to Control reference group member

Part 4/4 : Annexes

Essex is one of seven Trailblazer sites for the Right to Control. Early evidence suggests Right to
Control is having a positive impact for its users. For example, those who have sought support
from a Disability Employment Advisor have been directed to and supported through a number of
other services identified as relevant and useful to them, not purely related to employment, using
the mechanism of a Direct Payment.

In order to address issues related to services not working well in partnership, ecdp members
support a full range of funding streams and services to be included in the Right to Control
programme. This should reach as far as possible across all policy areas. In addition to the
funding streams currently included within the Right to Control, we believe that the following
should be considered for inclusion in any extension to further funding streams:
• All specialist disability employment programmes
• Disabled Students’ Allowance
• Continuing Health Care
• Personal Health Budgets
• Children’s Individual Budgets
• Transport service budgets.

Essex Community Budgets pilot
The principles behind the Right to Control have most recently been espoused in the
Community Budgets pilots. ecdp has welcomed these four pilots, of which Essex is one and in
which ecdp is engaged.

The move towards communities setting the priorities for their own areas and driving efficiency
savings in the process should achieve positive outcomes for those within communities,
including disabled people.

Disabled people are particularly affected by some of the issues that Community Budgets are
designed to address, for example: uncoordinated funding streams at a local level and a lack of
early interventions and a reliance on reactive approaches. Greater integration of services –
driven (in parth) through the Community Budgets pilots – will ensure disabled people can
access the variety of support they need in a more coherent way, as well as enable providers
to make savings which can in turn be put back into services.

Shaping the supply side
We have often reflected that reforms relating to disability benefits or other sources of state
support focus on the demand-side of the equation, i.e. the requirements of the individual. We take
the view that this can only therefore be one part of the solution.

However, amongst other areas (e.g. employment, transport and housing) we feel there is
considerable room to influence, shape and drive down the additional costs relating to disability on
the supply-side of the market.

For example, provision within the social care market in response to the personalisation agenda
and Personal Budgets / Direct Payments is relatively slow. However, significant market-shaping
work continues to accelerate, and learning from this is available that could benefit wider provision
of goods and services beyond social care and health settings.

Part 4/4 : Annexes

We thus feel there is a significant opportunity to be taken up to do more market-shaping work that
can both drive down costs relating to disability on the supply-side and potentially stimulate an
increase in disability-related business activity.

Q7. How can you be involved in decisions that affect your local area?
There are several ways in which the voice of disabled people can be captured, aggregated and
represented in relation to decisions that affect a local area. The best way to capture this is
through demonstrating the work we do at ecdp, as an example of the work of many DPULOs
across the country.

ecdp works with disabled people in Essex on a daily basis to ensure their lived experience is
collected and aggregated in order to form a collective voice.

In practice this involves employing a number of mechanisms to harvest the information shared
with ecdp. Starting from the position of a trusted organisation with an established relationship
with disabled people in Essex, we are in a good position to communicate and work with our
members.

When disabled people share their lived experience with ecdp through their day-to-day
communications with us, they are recorded in a lived experience log, enabling us to monitor
trends and observe the issues which are affecting disabled people. Through this log, we have
been alerted to some of the problems disabled people have faced and been able to address them
by liaising with colleagues at all levels of Government.

ecdp also works with disabled people to ensure their voice is heard by commissioners and
service providers around a number of issues, including but not purely related to, health and social
care.

HealthWatch, for example, presents a significant opportunity for disabled people to use their lived
experience to shape policy which affects them as users of health and social care, as well as
enabling them to hold commissioners to account in the longer term. The establishment of
equivalent structures or scrutiny / reference groups in other policy areas – particularly
employment and welfare – would be welcomed.

As a Right to Control Trailblazer, ecdp has established a user reference group, SURGE, which
reports to the Right to Control board and represents the wider views of those who will be using
the Right to Control.

Other methods, including focus groups, surveys and interviews are employed where appropriate
to inform all of ecdp’s work, drawing on the relevant lived experience of members.

Using lived experience in a variety of flexible ways not only means disabled people can have a
say on the issues which affect them to influence relevant decision makers, but also enables ecdp
to respond to external bodies, including the Government, Local Authority and a variety of other
service providers in an informed and collective manner.

Three factors underpin the involvement of disabled people in decisions that affect their local area:
• The provision of involvement infrastructure – such as DPULOs – that provide the opportunity
for disabled people to share their views and have them captured and represented
• Commissioners who are willing to – and can see the value of – working in coproduction with
disabled people in their local area
• The existence of legislative or regulatory levers (such as HealthWatch) that encourage or
require the involvement of disabled people in local decision making.

Part 4/4 : Annexes

Part 3: Changing attitudes and behaviours

Q8. What works well in changing the way other people treat disabled
people
Disabled people we worked with generally felt they were treated less favourably than others.
While there was a general recognition of progress being made in particular areas, 40% of survey
respondents still felt that attitudes towards disabled people had worsened over the last 10 years.

Training and education
The importance of training and education to ensure people understand disability was repeatedly
emphasised throughout our Fulfilling Potential engagement work. In every area of individuals’
lives they faced barriers related to negative attitudes; whether this was the attitudes of school
children or of service providers, from bus drivers to nurses and a prevalent suggestion for tackling
this was disability equality training for professionals, and for young people in schools. This is
developed further in the disability hate crime section below.

Media
Many disabled people feel the media are playing an increasingly important role in the
representation of disabled people. They often felt this representation is – unfairly – negative and
focused on benefit fraud.

Have you read the papers lately? Watched the TV, with that awful Saints and Scroungers
programme… Disabled people are being portrayed as thieves, cheats… who will stop at
nothing to ‘fiddle the system’. Disabled people are being denigrated in the street by
strangers who have decided we are ‘not disabled enough’ or that we ‘don’t look disabled’
– Survey respondent

[The] press paints us as lying scroungers – Survey respondent

Disabled people suggest the media should be held accountable for statements which suggest
that many benefit claimants are wrongly using support, which in reality is vital to its recipients and
in many cases enables them to work and contribute into the system.

Suggestions were made about the ways in which the media can – and some felt already does –
promote the contribution of disabled people and in doing so, create acceptance and encourage
more disabled people to contribute to society.

Celebration of achievement in the media… raise[s] the profile of disabled people in a
positive way – Survey respondent

The level of understanding and the amount of information available to society as a whole
means that people are generally better informed, but attitudes are generally the same…
society has become better informed [and] our expectations of what is available /
attainable have shifted – Survey respondent

As well as visibility in the media, disabled people note that having a greater presence in society
more generally, in part due to greater accessibility and greater support to access the community
where needed, has also created a shift in attitudes.

Attitudes have improved because disabled people have more choice and control over
their lives; e.g. employment and education. Society in general recognises disabled
people more and their positive impact on the community – Survey respondent

Part 4/4 : Annexes

On an individual basis, disabled people see that with this greater presence, they have their own
role to play in ensuring equal access and encouraging positive perceptions. This may be through
using their lived experience to support others or simply encouraging good practice:

It is important to tell people when they get it right [for disabled people], not just when they
get it wrong – Focus group participant

Disabled people should carry on being positive role models… and should be able to
access the services which maintain their choice and control. Disabled people can then be
seen as an equal member of their community and society as a whole – Survey
respondent

Trust
The fraud rate for Disability Living Allowance is 0.5%– lower than DWP’s administrative error rate
for the same benefit. This fraud rate is lower than almost all other benefits for both disabled and
non-disabled people.

As discussed above disabled people resent, therefore, the assertion in the media that a majority
of recipients are not using their benefit appropriately or misrepresenting their circumstances in
order to claim benefits they are not entitled to.

This creates an environment of distrust and misunderstanding, which is helpful neither for
disabled people nor elected representatives or senior public officials. It is important that this is
addressed both by Government, who should be continuing to build a relationship of trust with
disabled people and working to ensure that the disabled community is properly and fairly
represented, and by disabled people themselves, through building constructive and challenging,
but fair, relationships with Government.

Q9. What else is important in changing the way other people treat disabled
people?
Disability hate crime is an issue which affects many disabled people. As well as being an
important and serious issue in itself, disability hate crime also acts a proxy for the wider ways in
which disabled people are treated. We therefore consider the topic in detail below.

Disability hate crime
Though progress in addressing disability hate crime, as well as bullying and harassment, has
been made in some areas, many disabled people still face disability hate crime in their everyday
lives and at a rate which is not acceptable and not reflected by crime statistics. Of course, even
‘less serious’ crimes, accepted as part of everyday life by some disabled people, prevent victims
fulfilling their full potential and playing active roles in their community.

It didn't feel like a serious enough incident to do anything about it – Survey respondent

I now do not leave my house alone. I walk everywhere I have to now so as not to give
youngsters the reason to start. I do not go out in the dark – Survey respondent

[I have tried to stop this happening by] avoiding the town centre
Understanding
and crowded areas, especially where youngsters get together –
Survey respondent
Signposting and
Support

Education
Part 4/4 : Annexes Repor

ecdp has previously undertaken work to understand disability hate crime and its impact on
disabled people. Through this co-produced research, ecdp identified four key areas which need
to be taken forward in order to tackle, prevent and address hate crime. The USER framework
represents these four areas: understanding, signposting and support, education and reporting.

There needs to be a greater understanding of disability hate crime, both on the part of disabled
people, who do not always realise they are the victims and of the professionals with a
responsibility to address disability hate crime and support victims.

There needs to be a strong set of services which signpost and support disabled people when they
are victims of hate crime. These should be widely available and well coordinated. Many
professionals do not currently know how to support someone who has been a victim of disability
hate crime:

I don’t know what services are available or what they do once I signpost to them –
Disability Hate Crime professionals focus group

To ensure wider change for disabled people, we believe education work should be focused on
three particular groups of stakeholders: disabled people themselves, professionals and wider
society.

We need education from a young age. Then the children can challenge the attitudes of
the parents – Focus group participant

Finally, processes for reporting need to be strengthened to increase the number of investigated
and prosecuted cases. It is widely recognised that current crime statistics do not represent the
situation of disability hate crime within our society and while people must be given the choice as
to whether they report crimes, the process should be accessible and supportive when they do.

Our research also found that in accessing all of the above services, disabled people prefer to
obtain support via peers and, most importantly, independently from services such as the police.
As such, ecdp’s primary recommendation was that a disabled people’s user-led organisation, is
best placed to work in partnership with organisations that have responsibility for hate crime –
including local police – to address the above four areas.

While our research focused particularly on Essex, similar trends and issues can be seen across
the country. As such, the model suggested by ecdp is transferable and applicable elsewhere.
Indeed the Equality and Human Rights Commission (EHRC) published a national report which
drew very similar conclusions:

For many disabled people in Britain, safety and security is a right frequently denied.
Violence and hostility can be a daily experience - in the street, on public transport, at
work, at home, on the web - so much so that many disabled people begin to accept it as
a part of everyday life. Disabled people - including those who have not experienced such
behaviours directly - are all too often forced to go to extraordinary lengths to avoid it,
thereby limiting their own lives.vii

Identity and multiple disadvantage
Debates about ‘identity’ are not ecdp’s speciality. But in our work with disabled people in Essex
and beyond we are constantly reminded of one very difficult fact: approximately 50% of all people
who would be considered a ‘disabled person’ under the law don’t consider themselves to be
disabled. This includes people across all impairment groups and across many long-term health
conditions.

Part 4/4 : Annexes

In approaching this fundamental obstacle to delivering disability equality, and in taking forward
any strategy around disability, it is essential that the work is approached from the Social Model of
Disability. Namely, that the barriers disabled people face are related to the society we live in and
not the individual’s impairment.

Beyond this, many are starting to recognise that disabled people are not a homogenous group.
The 1 in 5 of the population who have rights under disability law form a very diverse community
which includes people from a variety of backgrounds. It should further be recognised that
disabled people who face various disadvantages may be further marginalised because they
belong to another disadvantaged social group. Indeed, 35% of ecdp’s survey respondents felt
they had faced particular disadvantage because of being part of another group:

I am a disabled woman in a relationship with another woman – a triple whammy… –
Survey respondent

I am a disabled, multi-racial woman. I couldn’t be any more disadvantaged if I tried –
Survey respondent

However, some also felt that other minority groups or equality ‘strands’ had made more progress
around equality and left disabled people behind in terms of progress. One example given was
that of the landmark shifts in policing created by the murder and subsequent mishandling of the
death of Stephen Lawrence by the Metropolitan Police. People did not feel they had seen the
same changes following the deaths of Fiona Pilkington and Francecca Hardwick after months as
the victims of disability hate crime.

In some ways there is improvement… In other ways they’ve worsened… People avoid
the disability word… Stereotypes are much stronger – Survey respondent

It is important that disability groups learn from the progress made by other groups, for example
those representing people from black and ethnic minority communities, and work in partnership
with them to ensure that those who face multiple barriers because of their identity are supported
holistically to overcome them.

Perhaps unique to disability, in relation to other equality strands, is the fact that not all disabled
people will identify themselves as such. This can lead to particular problems when aiming to
ensure services reach those who need them or addressing issues which affect them.

Q10. What can we do to make sure that everyone recognises the contribution that disabled
people can make?

The Paralympic Games as an opportunity?
Disabled people who contributed to ecdp’s Fulfilling Potential engagement exercise felt that
the Paralympics Games presented a significant opportunity to demonstrate the achievements
and capabilities of disabled athletes. It was hoped that the image of disabled people ‘at the top
of their game’, would change negative attitudes of disabled people held by those who didn’t
think they could achieve success.

However, there were concerns expressed that aside from this, the legacy of the Paralympics
in London were not going to create lasting change for disabled people in Essex.

What about normal disabled people, the ones who are not the elite? Will the
Paralympics change things for us? – Focus group participant

The Paralympics is great, but will it result in me getting a job? – Focus group
participant

Fulfilling Potential –should response, March 2012 coverage of Britain’s elite disabled athletes 21
The Government ecdp ensure that the positive Page 19 of
Part 4/4 part in the Paralympic Games is fully exhausted for the benefit of all disabled people,
taking : Annexes
and that the mindset the Paralympics instils is extended to all disabled people who, provided
with the right resources and support, should be able to achieve their full potential.

Legislative and regulatory levers
As highlighted in Question 7, one of the key factors for ensuring disabled people’s voices are
heard in decisions that affect their local areas is a strong legislative or regulatory basis for that
involvement. The same principle applies in recognising the contribution that disabled people can
make more generally.

Specifically, there are concerns that the Public Sector Duties (as contained in the Equality Act
2010) and the Duty to Involve no longer hold any currency in promoting the involvement of
disabled people, or in undertaking actions that look to address disproportionate impacts of policy
on disabled people. If the commitment to recognising the contribution of disabled people to
society is one to be delivered, using existing legislation as it was intended can be a means to
achieve this.

Part 4/4 : Annexes

i
ecdp Fulfilling Potential Survey
ii
Quote taken from John Evans’ OBE evidence to the Inquiry on Independent Living by the Joint Committee on
Human Rights
iii
Human Rights Joint Committee - Twenty-Third Report: Implementation of the Right of Disabled People to
Independent Living: http://www.publications.parliament.uk/pa/jt201012/jtselect/jtrights/257/25702.htm
iv
Parliament UK: Bill documents – Social Care Portability Bill
services.parliament.uk/bills/2010-11/socialcareportabilityhl/documents.html
v
Personalisation: A Rough Guide from SCIE, available here:
http://www.scie.org.uk/publications/reports/report20.asp
vi
Personalisation, Productivity and Efficiency, from SCIE, available here:
http://www.scie.org.uk/publications/reports/report37.pdf
vii
EHRC: Promoting the Safety and Security of Disabled People
http://www.equalityhumanrights.com/key-projects/good-relations/safety-and-security-for-disabled-people/

Fulfilling potential ecdp response (march 2012) - 2. main response final

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Fulfilling potential ecdp response (march 2012) - 2. main response final