Fulfilling Potential - ecdp response 2. MAIN RESPONSE FINAL

8/2/2019 Fulfilling Potential - ecdp response 2. MAIN RESPONSE FINAL

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Fulfilling Potentialecdp response, March 2012Part 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 thekey 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 [email protected] or 01245 392 324.

SECTION 2: ECDP RESPONSE

Part 1: Realising Aspirations

We recognise there are many societal barriers which currently prevent disabled people fromrealising 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 ensureequality of opportunity in education and employment and that disabled people have the samechance to live independently as non-disabled people.

One of the focus groups held during our Fulfilling Potential engagement exercise was specificallyfocused 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 gettingan 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 ineducation for disabled people. Of those we engaged with, experience of education varied betweenthose of different ages and was generally more positive for younger people, although this was notalways the case.

Those individuals who did not have an impairment during their education were aware their disabledpeers seemed to have a less positive experience and were treated differently. Indeed, of thosedisabled 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

They treat you differently… they don’t really know who I am – Focus group participant

Fulfilling Potential – ecdp response, March 2012 of 21Part 4/4 : Annexes

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Mainstream ‘versus’ special schools

Many more of the younger people we consulted with had attended mainstream schools, whereas inmany 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 witheveryone 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 equaleducation. It was felt that negative attitudes towards disabled people could be better tackledthrough integration and contact with non-disabled people.

During our focus groups, one parent spoke of their child’s mainstream school being merged with alocal ‘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 typeof 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 theparents 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 tobe disproportionately affected by over-subscription criteria. This is especially the case whenschools 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 childrenwithout SEN / disabilities. This is borne out by in particular by appeals numbers: there are morerelevant appeals for pupils with SEN statements than there are for non-statemented children, as aresult 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 regardingadmissions 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 toincluding 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 academicsubjects and in some cases were unable to study alongside their peers:

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




Of those who had progressed on to Further Education, some had attended universities whichspecifically 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 accessiblebuildings.

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

The continuing existence of these basic physical access barriers demonstrates that, while manybelieve 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, itgoes without saying that the legislation has represented important progress towards achievingequality, 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 evendisability 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 onewhich could be undertaken with the right commitments to educating all students about disabilityequality.

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

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

respondent

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

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




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

Employment

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

48% of disabled people are in employment, compared to 79% of non-disabled people (both 2008figures). The people ecdp worked with throughout this engagement exercise want to work andwere 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 moredifficult 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 weworked with, young disabled people felt they were at a particular disadvantage when leavingschool:

I would feel happy if I got a job. There are not a lot of jobs around at the moment for peoplewith or without disabilities. I hope in the future there will be a lot more jobs for disabledpeople 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

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


Disabled parents

Through our engagement work with disabled people, it became evident that disabled parents aresometimes treated less favourably than non-disabled parents when accessing their children’sschool.

The physical access barriers which affected disabled students as discussed above also affectdisabled 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.



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 aminimum they would expect advisors to have disability equality training.

[My experience would be improved by] a good advisor at JobCentre Plus, who I feltunderstood 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 disabledwoman 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 getmarried?” – Survey respondent

Given the DEA specialist role within the Job Centre, it is important that their attitude towardsdisabled people is positive and productive, and that individuals within those roles approachdisability 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 arefacing a difficult job market and negative press around benefits and unemployment. Ensuring aquality 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 thirdof survey respondents were informed of potential support from their employer or a colleague and28% 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 andJCPs, but more importantly, that peer-led approaches around employment advice have resultedin 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 theemployer. 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 recentlyacquired an impairment – meant they either left or lost their job, even when their impairment hadno 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 reasonableadjustments – Survey respondent

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 supportemployers and businesses, such as Business Link and CBI, should be reinforcing theimportance of disability equality to their members.

Ensure employers have been through appropriate training before they advertise that theyare 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 personalisedsupport for the person. Previous research carried out by ecdp found that Access to Work isessential to those who use it. 83% of ecdp’s Access to Work survey respondents said theycould not work without the support that Access to Work provides, with a further 12% saying thatthey 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 andimprove their own individual life chances and quality of life, but it also provides a net gain to theGovernment in terms of tax and National Insurance revenues; approximately £1.48 for every £1invested.

It is important that Access to Work is offered to all people who could benefit from it. It is worryingto note the present trend for the number of people using Access to Work is falling rather thanrising. 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 positiveone for individuals is good communication all the way through the service, from the initialinformation 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 wouldhave been working a lot sooner – Survey respondent

Some felt the level of transparency around what might be covered should be increased, sopeople 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 havingto wait until a definite offer of employment is made. It’s no good to sit in an interviewsituation and say: “Well, if I’m lucky, I might be able to get XYZ to enable me to workeffectively… 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 whoknew they could do their job but might have been prevented from doing so without the correctsupport.

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

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




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

[It would help] if employers understood more about Access to Work or other supportavailable – 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 triedtheir 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’sexperiences 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 beinghighlighted.

Although this situation was resolved, the effect was disruptive for those who used this support andpotentially meant that anyone who accessed the service during this period may not have been ableto 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 couldplay 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 startinga 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, whichsuggested 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 thisrecommendation, and would like to see the provision of Personal Budgets and Direct Paymentsfor employment services significantly scaled up.

Independent Living

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 thesupport of others like the personal assistant sitting next to me is immense. It is very hard Ithink to get that message across to people who perhaps are not dependent on others tosupport them in their day-to-day living. But it has provided me with a life, my work – I haveworked widely – and the opportunities and the choices to do the things I want, like you do. Ithink with the restrictions somebody like myself has, with the kind of severe impairment Ihave, it is freedom. It is the freedom for me to be able to do what I want to do, when I wantto do it[.] – John Evans, OBE ii




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

For example, during our engagement exercise, participants stressed the importance of being at thecentre 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 whatindependent living means to a disabled person –Survey respondent

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

Being treated as an equal as opposed to someone who needs support. People taking thetime 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, butsupport them to do everyday tasks:

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

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

Legislating for Independent Living?

The Joint Committee on Human Rights (JCHR) has recently published its report on theimplementation of the right of disabled people to independent livingiii. The report draws attention toa number of issues including the need for freestanding legislation to protect the right to independentliving in UK law.

We are persuaded of this argument, but also strongly think that existing legislation must be usedeffectively and as intended to ensure change is reflected in disabled people’s everyday lives. Themonitoring arrangements for the Disability Strategy could provide a practical bridge in capturing andsharing such changes. 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 anythingelse – consistency in services, support and access to funding, is essential.




Some examples of transitions disabled people spoke about duringecdp’s Fulfilling Potentialengagement are included below. While these do not represent an exhaustive list, they demonstratesome 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 causethings to deteriorate further for the individual. The original proposal to extend the qualifying periodfor Personal Independence Payment from three to six months highlighted the problems many hadhad 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 acar 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 negativeconsequences for the individual in terms of physical and mental health and can in turn putpressures on other services, such as the NHS. We were encouraged to hear the Governmentreconsider the original proposal.

It was clear that through our Fulfilling Potential engagement exercise there was a resoundingfeeling that social care and health services are particularly inconsistent because there is often nodedicated worker appointed to an individual’s case. Having to constantly re-explain the situation isdistressing 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 usersand 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 disabledpopulation and service providers.

Moving house

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

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

[There should be] a bigger selection of accessible accommodation so that choice andcontrol 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 Iwouldn’t be able to access a Disabled Facilities Grant because both my husband and I areemployed – Focus group participant




Combined with these barriers described above, renegotiating a support package with a new localauthority and having no guarantee the same support will be provided in the new area can stopdisabled 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 lastsummer and provided for the possibility that when disabled people move from one local authority toanother, their care and support will be ‘portable’ and so effectively move with them. Governmentshould revisit the Social Care Portability Bill through the Disability Strategy, perhaps reflecting it inthe 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 serviceswhich provide support are as consistent as possible to minimise the problems people experienceduring times of transition.

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

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

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

The provision of these types of Information, Advice and Guidance (IAG) services by DPULOsenables 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.




Part 2: Individual Control

Independent living and personal control, delivered through personalised services, have begun torevolutionise social care services for some disabled and older people. Personal Budgets, includingDirect Payments, are designed to put the control back in to the hands of disabled person, allowingthem 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. Personalisationneeds to be considered within a wider context because having control over one’s life means havingcontrol over all services accessed, whether these are related to meeting care needs or other requirements.

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

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

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

Though not all disabled people require any or all of these services, when they are used it isessential 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 participantshighlighted in seeking to have choice and control.

Inflexible and bureaucratic systems




Disabled people access support from a variety of sources and funding streams and use it indifferent ways to give them choice and control. However, disabled people we have engaged wantthe 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 importantpart in the lives of many disabled people. However, a number of individuals felt the welfare systemprevented 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 dosomething 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 lifefar more difficult than necessary. Keeping them at arms length as much as possible hasgiven 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 inproviding 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 supportsme 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 timeimmemorial, 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 moreconsideration given to the role of self-assessment in public services. Self-assessment within socialcare (with its considerable public budget) is becoming further established and evidence suggeststhat 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 moregenerally.

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 disabledpeople are not always clearly communicated or promoted. Even if they are, mechanisms that maybe 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 alladults 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 arecommunicated to them. For example, some of the disabled people we engaged with wereunaware they could be eligible for a Direct Payment or had not been offered different optionsfor creating their support plans




• Many disabled people we engaged with have also faced problems specifically relating to theway 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 toaddressing 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 tonavigate the complex system of services. This approach gives the service user a centralised andconsistent 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 liveindependently.

Furthermore, peer support enables disabled people to use their lived experience to engage withother disabled people, their communities and the issues which affect them at a national and locallevel. 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 outlinedabove. 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 controlthrough increased uptake of Direct Payments (DP). 89% of people in Essex who receiveinformation, 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 supportin 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 peoplehave 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 likeif 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 theinformation, advice and guidance they need as a legal right to know up-front how much money isavailable 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 agreedoutcomes can best be met by bringing together funding streams from more than one agency andaccessing this through a central point.

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




Essex is one of seven Trailblazer sites for the Right to Control. Early evidence suggests Right toControl is having a positive impact for its users. For example, those who have sought support froma 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 themechanism of a Direct Payment.

In order to address issues related to services not working well in partnership, ecdp memberssupport a full range of funding streams and services to be included in the Right to Controlprogramme. This should reach as far as possible across all policy areas. In addition to the fundingstreams currently included within the Right to Control, we believe that the following should beconsidered 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.

Shaping the supply side

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

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

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


Essex Community Budgets pilot

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

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

Disabled people are particularly affected by some of the issues that Community Budgets aredesigned 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 canaccess the variety of support they need in a more coherent way, as well as enable providers tomake savings which can in turn be put back into services.



We thus feel there is a significant opportunity to be taken up to do more market-shaping work thatcan both drive down costs relating to disability on the supply-side and potentially stimulate anincrease 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 andrepresented in relation to decisions that affect a local area. The best way to capture this is throughdemonstrating the work we do atecdp, as an example of the work of many DPULOs across thecountry.

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

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

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

ecdp also works with disabled people to ensure their voice is heard by commissioners and serviceproviders 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 livedexperience to shape policy which affects them as users of health and social care, as well asenabling them to hold commissioners to account in the longer term. The establishment of equivalent structures or scrutiny / reference groups in other policy areas – particularly employmentand welfare – would be welcomed.

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

Other methods, including focus groups, surveys and interviews are employed where appropriate toinform 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 sayon the issues which affect them to influence relevant decision makers, but also enablesecdp torespond to external bodies, including the Government, Local Authority and a variety of other serviceproviders 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 opportunityfor 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 withdisabled 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 3: Changing attitudes and behaviours

Q8. What works well in changing the way other people treat disabledpeople

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 surveyrespondents 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 repeatedlyemphasised throughout our Fulfilling Potential engagement work. In every area of individuals’ livesthey 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 wasdisability equality training for professionals, and for young people in schools. This is developedfurther in the disability hate crime section below.

Media

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

Have you read the papers lately? Watched the TV, with that awful Saints and Scroungersprogramme… Disabled people are being portrayed as thieves, cheats… who will stop atnothing to ‘fiddle the system’. Disabled people are being denigrated in the street bystrangers 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 thatmany benefit claimants are wrongly using support, which in reality is vital to its recipients and inmany 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 encouragemore disabled people to contribute to society.

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

The level of understanding and the amount of information available to society as a wholemeans that people are generally better informed, but attitudes are generally the same…

society has become better informed [and] our expectations of what is available / attainablehave shifted – Survey respondent

As well as visibility in the media, disabled people note that having a greater presence in societymore generally, in part due to greater accessibility and greater support to access the communitywhere 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 moreand their positive impact on the community – Survey respondent




Understanding

Signposting andSupport

Education

Reporting

On an individual basis, disabled people see that with this greater presence, they have their ownrole to play in ensuring equal access and encouraging positive perceptions. This may be throughusing 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 theyget it wrong – Focus group participant

Disabled people should carry on being positive role models… and should be able to accessthe services which maintain their choice and control. Disabled people can then be seen asan 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 ratefor the same benefit. This fraud rate is lower than almost all other benefits for both disabled andnon-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 disabledpeople nor elected representatives or senior public officials. It is important that this is addressedboth by Government, who should be continuing to build a relationship of trust with disabled peopleand working to ensure that the disabled community is properly and fairly represented, and bydisabled people themselves, through building constructive and challenging, but fair, relationshipswith Government.

Q9. What else is important in changing the way other people treat disabledpeople?

Disability hate crime is an issue which affects many disabled people. As well as being an importantand serious issue in itself, disability hate crime also acts a proxy for the wider ways in whichdisabled 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 beenmade in some areas, many disabled people still face disability hate crime in their everyday livesand at a rate which is not acceptable and not reflected by crime statistics. Of course, even ‘lessserious’ crimes, accepted as part of everyday life by some disabled people, prevent victims fulfillingtheir 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 giveyoungsters 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 and crowded areas,especially where youngsters get together – Survey respondent

ecdp has previously undertaken work to understand disability hate crimeand its impact on disabled people. Through this co-produced research,ecdpidentified 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 disabledpeople, who do not always realise they are the victims and of the professionals with a responsibilityto address disability hate crime and support victims.

There needs to be a strong set of services which signpost and support disabled people when theyare victims of hate crime. These should be widely available and well coordinated. Manyprofessionals do not currently know how to support someone who has been a victim of disabilityhate 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 onthree 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 andprosecuted cases. It is widely recognised that current crime statistics do not represent the situationof 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 obtainsupport 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 placedto work in partnership with organisations that have responsibility for hate crime – including localpolice – to address the above four areas.

While our research focused particularly on Essex, similar trends and issues can be seen across thecountry. As such, the model suggested by ecdp is transferable and applicable elsewhere. Indeedthe Equality and Human Rights Commission (EHRC) published a national report which drew verysimilar 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 suchbehaviours 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 notecdp’s speciality. But in our work with disabled people in Essexand beyond we are constantly reminded of one very difficult fact: approximately 50% of all peoplewho would be considered a ‘disabled person’ under the law don’t consider themselves to bedisabled. This includes people across all impairment groups and across many long-term healthconditions.

In approaching this fundamental obstacle to delivering disability equality, and in taking forward anystrategy 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 andnot the individual’s impairment.

Beyond this, many are starting to recognise that disabled people are not a homogenous group. The1 in 5 of the population who have rights under disability law form a very diverse community whichincludes people from a variety of backgrounds. It should further be recognised that disabled peoplewho 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 facedparticular 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 progressaround equality and left disabled people behind in terms of progress. One example given was thatof 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 thedisability word… Stereotypes are much stronger – Survey respondent

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

Perhaps unique to disability, in relation to other equality strands, is the fact that not all disabledpeople 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 disabledpeople can make?


The Paralympic Games as an opportunity?

Disabled people who contributed toecdp’s Fulfilling Potential engagement exercise felt that theParalympics Games presented a significant opportunity to demonstrate the achievements andcapabilities 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 thinkthey could achieve success.

However, there were concerns expressed that aside from this, the legacy of the Paralympics inLondon 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 theParalympics change things for us? – Focus group participant

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

The Government should ensure that the positive coverage of Britain’s elite disabled athletestaking part in the Paralympic Games is fully exhausted for the benefit of all disabled people, andthat the mindset the Paralympics instils is extended to all disabled people who, provided withthe 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 heardin decisions that affect their local areas is a strong legislative or regulatory basis for thatinvolvement. 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 Act2010) and the Duty to Involve no longer hold any currency in promoting the involvement of disabledpeople, or in undertaking actions that look to address disproportionate impacts of policy on disabledpeople. If the commitment to recognising the contribution of disabled people to society is one to bedelivered, using existing legislation as it was intended can be a means to achieve this.




i ecdp Fulfilling Potential Surveyii

Quote taken from John Evans’ OBE evidence to the Inquiry on Independent Living by the Joint Committee on

Human Rightsiii Human Rights Joint Committee - Twenty-Third Report: Implementation of the Right of Disabled People toIndependent Living: http://www.publications.parliament.uk/pa/jt201012/jtselect/jtrights/257/25702.htm iv Parliament UK: Bill documents – Social Care Portability Billservices.parliament.uk/bills/2010-11/socialcareportabilityhl/documents.htmlv Personalisation: A Rough Guide from SCIE, available here:http://www.scie.org.uk/publications/reports/report20.aspvi 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 Peoplehttp://www.equalityhumanrights.com/key-projects/good-relations/safety-and-security-for-disabled-people/

http://www.parliament.uk/business/committees/committees-a-z/joint-select/human-rights-committee/inquiries/protecting-the-right-of-disabled-people-to-independent-living/



http://www.publications.parliament.uk/pa/jt201012/jtselect/jtrights/257/25702.htm

http://www.scie.org.uk/publications/reports/report20.asp

http://www.scie.org.uk/publications/reports/report37.pdf

http://www.equalityhumanrights.com/key-projects/good-relations/safety-and-security-for-disabled-people/



http://www.publications.parliament.uk/pa/jt201012/jtselect/jtrights/257/25702.htm

http://www.scie.org.uk/publications/reports/report20.asp

http://www.scie.org.uk/publications/reports/report37.pdf

http://www.equalityhumanrights.com/key-projects/good-relations/safety-and-security-for-disabled-people/

Fulfilling Potential - ecdp response 2. MAIN RESPONSE FINAL

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