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Fulfilling potential ecdp response (march 2012) - final


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Fulfilling potential ecdp response (march 2012) - final

  1. 1. Fulfilling Potential ecdp response, March 2012Graphicking image drawn by Sidbaility during one of ecdp’s Fulfilling Potential focus groups
  2. 2. Fulfilling Potential – ecdp responseAbout this documentThis is ecdp’s response to the Government’s Fulfilling Potential discussioni. It has been coproducedwith our members to ensure it fundamentally reflects the views and lived experiences of disabledpeople in Essex and beyond. For full details of our engagement work with disabled people to informthis response – which directly engaged with just under 650 disabled people – please see Annex 1.Additionally, this report draws upon a wide range of work on a variety of topics that ecdp has doneover the last 5 years in particular – listening to, capturing and understanding the lived experience ofdisabled people in Essex. Recent work we have done relevant to the Fulfilling Potential discussionincludes topics such as:• Choice and Control in health and social care, including Direct Payments and Personal Budgets• Employment and employment support including Access to Work• Disability hate crime and hostility• Welfare reform and benefits, including Disability Living Allowance, Independent Living Fund and Personal Independence Payment• Participation, accessing the community and volunteering.The structure of our response is described below.Section 1: PreambleThe preamble sets out ecdp’s vision for disabled people contributing as equal members of society. Itexplores the developments which have led to the current position and context within which theFulfilling Potential discussion is taking place.Section 2: ecdp responseecdp’s response forms the bulk of this report and represents the direct voice and lived experience ofour members and disabled people in Essex and beyond we’ve directly engaged with – approximately650 people.Questions 1-10 asked in the Fulfilling Potential discussion document are addressed in the followingthree parts:Part 1: Realising Aspirations: In this part we discuss the societal barriers which currently preventdisabled people from having the same opportunities as non-disabled people. Issues experienced ineducation, employment and independent living formed part of the discussion and suggestions weremade about how these issues can be overcome.Part 2: Individual Control: In this part we explore what individual control means to different disabledpeople and how the Government’s Disability Strategy can be developed to ensure all disabled peoplehave control in their everyday lives.Part 3: Changing attitudes and behaviours: In this part we examine some of the ways disabled peoplecontinue to be treated differently to others in society and how the Disability Strategy might help toshape more positive attitudes towards disabled people.Section 3: The role of the DPULOs in achieving thisIn this section we set out what role we think Disabled People’s User-Led Organisations (like ecdp)have in achieving an enabling state and type of society for disabled people we have talked about inSections 1 and 2.Response submitted March 2012. For further information on any element of this document, pleasecontact Rich Watts (Director of Policy & Development, ecdp) on or 01245 392324. Page 2 of 34
  3. 3. Fulfilling Potential – ecdp responseSECTION 1: PREAMBLESections 2 and 3 of our response correspond more directly to the questions posed in FulfillingPotential. We are using the opportunity afforded by the discussion paper, however, to set out in thisPreamble our take on the current disability picture and a positive vision for the contribution disabledpeople can make to society.We therefore hope this Preamble places our response in the wider context of our vision to enhancethe everyday lives of disabled people and what this means in practice.Specifically, in “To what end?” below, we set out our answer to the question of what will be enough toachieve disability equality. Before that, we reflect on the progress that has been made over the lastgeneration in working towards disability equality.Life chances of disabled peopleThough there have been many major developments in the drive for disability equality – through the1970s/80s with the advent of Centres for Independent Living, and then from 1995 onwards with theintroduction of the Disability Discrimination Act and subsequent legislation – disabled people remainamongst the most disadvantaged in society.Some key statistics suggest that the wider change in society that was hoped would flow from a goodlegislative base have not yet been realised.The employment rate of disabled people increased from 43% in 1997 to 44.5% in 2005 to 48.4% in2008. However, though the gap compared to the overall employment rate has narrowed from 35.6%in 2005 to 31.2% in 2008, the majority of disabled people are not in employment. Furthermore, theaverage gross hourly pay for disabled employees is £11.08 compared to £12.30 for non-disabledemployees.In education, 23% of disabled people have no qualifications compared to 9% of non-disabled people.There has been a slight increase in the percentage of learners with a learning disability participating inFurther Education, from 10.5% of all learners in 2005/06 to 11.6% in 2006/07 and 11.9% in 2007/08,but significant issues relating to disability and education remain.In social care – arguably the focus of most policy relating to disabled (and older) people since 2007 –Direct Payments were only made to 6.5% of all people using services – some 115,000 adults agedover 18 (2008/09). (This figure includes 29,000 carers, who represent approximately 25% of all DPusers.)In volunteering, disabled people are significantly less likely to engage in formal volunteering than non-disabled people: some 21% of disabled people volunteered in 2008 (a decrease from 23% in 2001)compared to 27% of non-disabled people in 2008 (itself a decrease from 28% in 2001).Nearly half of all adults who have never used the internet are disabled people. In December 2011,8.2m adults – some 16% of the UK’s adult population – had never used the internet. Of these, 3.98mwere disabled people. This represents 49% of all those who had never used the internet and 35% ofall disabled adults.But there are some silver linings. For example, figures from 2008/09 show that disabled people aresignificantly more likely to have participated in civic lifeii than non-disabled people. In 2008/09, 42% ofdisabled people participated in civic life compared to 37% of non-disabled people. Given currentpolicy drivers, this is encouraging.The disability rights frameworkThe disability rights framework that now exists has undoubtedly been a significant success for thedisability movement. After the introduction of the Disability Discrimination Act in 1995 – though by nomeans perfect legislation (with gaps in its coverage, weak protection, and inadequate enforcement Page 3 of 34
  4. 4. Fulfilling Potential – ecdp responseprovisions) – there followed more significant legislative progress with a further DisabilityDiscrimination Act (2005) and the Equality Act (2010), the Direct Payments Act (1996) and theSpecial Educational Needs and Disability Act (2001). Furthermore, in 2007 the UK was a signatory tothe UN Convention on the Rights of Persons with Disabilities [sic] and ratified it in June 2009 (withsome opt-outs). The overall effect of this legislative framework was one that moved from negativecompliance with the law to the positive duty to promote equality for disabled people.Informing and emanating from this framework were significant structural advances through, forexample, the Disability Rights Task Force (1997-1999), the creation of the Disability RightsCommission (1999-2007) (since becoming the Equality & Human Rights Commission, with itsattendant Disability Committee) and the establishment of the cross-government Office for DisabilityIssues in 2005.And at least two significant policy drivers contributed to this period through the publication of theStrategy Unit’s Improving the Life Chances of Disabled People Report (2005), which gave rise to theIndependent Living Review (2006-2008) and the subsequent publication of the Independent LivingStrategy (2008).The positive trend continues to this day in some major areas of policy, with Fulfilling Potential itself,the SEN Green Paper, continuing personalisation in social care and its wider roll-out in health.Nevertheless, though a comprehensive disability rights and policy framework has been establishedover the last generation, this by itself hasnt been enough to transform disabled peoples life chances.The question becomes: what will be enough?There is disagreement within the disability movement about what outcome is wanted, let alone what isrequired to get there. ecdp is therefore using the opportunity of Fulfilling Potential to set out some ofwhat we think should be both the outcomes to be achieved for disabled people and the means bywhich they will be delivered.In doing so, we aim to look beyond the current economic circumstances whilst being mindful of theircurrent effects. We hope and expect that Fulfilling Potential will lay foundations for 50 years’ time, not5 years’.Means: working in partnership and across boundariesThe disability movement must continue to have the relevance and success that has led to thechanges of the last 30 years.We feel there is limited awareness that the field of disability has been a major driver and innovatorwhen it comes to public service reform. To take just one example: Direct Payments andpersonalisation are the direct results of work done by disabled people and their organisations that hasled to significant swathes of public service reform. The Right to Control is literally Trailblazing a similarpath.Such changes as are happening to public services now – including the continued transformation ofadult social care, health reform, the shift in power to the most local level possible, and creating apartnership between the individual and the state rather than the state doing everyone on behalf of anindividual – are ones that disabled people should again fundamentally contribute to and drive.For this to happen, the disability movement should broaden its horizon to think not just about disabilityquestions by themselves but to contribute to national debates and developments – forging strategicalliances with relevant organisations, becoming expert advisers and partners to a range of othersectors, including (but not limited to) government at a central and local level. Page 4 of 34
  5. 5. Fulfilling Potential – ecdp responseThis builds on the notion that the disability movement alone can’t secure the reform or redistributionneeded to promulgate disability equality in the wider public sector and society as a whole. It suggeststhe disability movement can’t afford to operate in a disability silo nor afford time to retreat back totheoretical questions of identity alone if it is to be successful in meeting the challenges ahead.Means: an ‘all or nothing’ Campaigning approach?Campaigning clearly has its place in a democratic society. We sometimes wonder whether the way inwhich this Campaigning (note – big ‘C’) happens is useful.Let us take two very difficult, but very current and controversial examples of present or potentialgovernment policy: welfare reform and assisted dying. What is clear in both of these cases is that, ifthe disability movement takes a purely oppositionalist and adversarial approach to these intentions –especially when accompanied by no alternative solution other than the status quo – then the finalresult is likely to be much worse overall for disabled people. Instead – whilst recognising the broaddirection of travel – we need to work with legislators and officials to enable them to understand theimpact such policies would have on disabled people and support them to mitigate or minimise theseeffects.As such, we advocate that it cannot be an ‘all or nothing approach’ to promoting disability equality butone in which we, as disabled people and disabled people’s organisations, must work in partnershipwith other organisations (including at all levels of government) to achieve better outcomes foreveryone, including disabled people.To what end?Even if the means of Campaigning, for example, were right, what about the ends that such anapproach seeks to achieve?Contemporary views of the modern welfare state are illustrative. Such views often appear – or are –contradictory, as captured by a well-known disability campaigner: It is perhaps ironic that many of us spent the 1970s criticising the welfare state, only to find that these arguments were built upon and taken much further by a government determined to reduce state expenditure. Consequently we spent the 1980s defending what we had previously attacked. In sum, we defended the indefensible[.]iiiSimilarly, some people argue that disabled people should be ‘left alone’ by the state when it comes toreforms, calling upon issues of ‘sickness’ or ‘vulnerability’ by way of justification. To take onemanifestation of this: regarding employment, some people ask that whole groups of disabled peopleare deemed de facto unfit to work because of their impairment or long-term health condition – the sortof a priori judgment that would rightly be considered discrimination.Such views – from our perspective – contribute to a lingering sense of disabled people as recipientsof charity, or people who should be left alone and looked after / protected by the state. They don’t tallywith ecdp’s views of the sort of society disabled people should be an equal part of; nor do they tallywith prevailing views in the ways issues like disability hate crime, for example, are being successfullyaddressed. Page 5 of 34
  6. 6. Fulfilling Potential – ecdp responseThus, to answer our own question: what will be enough?We believe government should operate, and all citizens be encouraged to behave, such that disabledpeople have the support required and same access to opportunities as non-disabled people toparticipate fully as equal citizens.A fundamental building block of this is an enabling state – one which isn’t just a safety net, but onethat provides a positive platform for disabled people to achieve their greater goals. This requires a‘welfare’ state, in the broadest sense of the term ‘welfare’.Jenny Morris has put it most eloquently, most recently, building on a history of such thinking in thedisability movement: In order to experience equal access to full citizenship, disabled people therefore require some kind of collective and redistributive mechanism to provide the additional requirements needed. Moreover, such redistribution needs to be in the context of a value system which values diversity and where disabled people are treated as belonging and contributing to the communities in which they live.ivFor us, such an enabling state would have the following sorts of characteristics:• It must be recognised that the state isn’t just about questions of welfare benefits, or social care entitlements, or free transport passes or blue badges. It is about providing an equal platform for disabled people to make their own contribution• We wish for a system – whether in principle or in practice – in which all different entitlements and support are drawn together around the individual. Fulfilling Potential is an opportunity to look at an individual first and to see how all of the different and complex systems (and their associated bureaucracies) interact to make things happen or get in the way. We wish for the opportunity to take Right to Control to its logical conclusion across all public provision• Such a system would be coproduced: its design would be done with disabled people, decisions made about it done with disabled people, its delivery would be done with and through disabled people, and its review would be carried out with disabled people.Such an enabling state would be one that works in partnership with an individual, rather than doesthings unto them. To do this, it must:• Recognise disabled people are experts in their own lives• Offer as much choice and control as possible to disabled people at as many junctures as possible• Recognise, develop and utilise the capabilities of disabled people.Disabled People’s User-Led Organisations (like ecdp) clearly have a role to play in such an enablingstate. We have set out what we think that role is, and how we think it can be delivered, in oursubstantial answer to question 11 in Section 3.Section 2, however, shares the views and lived experiences of our members and disabled peopleacross Essex, who have identified ways in which the current system does and doesn’t work, andsuggested what the enabling state could look like, and ways that it can be achieved. Page 6 of 34
  7. 7. Fulfilling Potential – ecdp responseSECTION 2: ECDP RESPONSEPart 1: Realising AspirationsWe recognise there are many societal barriers which currently prevent disabled people from realisingthe same aspirations and goals as non-disabled people. Below we discuss what some of thosebarriers are. We also share suggestions disabled people have for tackling them to ensure equality ofopportunity in education and employment and that disabled people have the same chance to liveindependently 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 particularissues. 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 aneducation, getting a job or being able to live independently?EducationWe 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 theirexperience of education was not as good as their non-disabled peersv. 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 participantMainstream ‘versus’ special schoolsMany 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 theirimpairment 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 participantAmong those who contributed to this work, integrated schooling was favoured among the majority. Itwas seen to provide a more ‘realistic’ experience for the student, as well as a more equal education. Itwas felt that negative attitudes towards disabled people could be better tackled through integrationand 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 ‘differenceand disability’.However, greatest emphasis was placed on ensuring equality of opportunity regardless of the type ofschool, whether mainstream or specialist. Page 7 of 34
  8. 8. Fulfilling Potential – ecdp responseChoice for parents of disabled young people in the education systemResearch suggests that choice in the education system does not exist the same way for the parentsof pupils with Special Educational Needs (SEN) or children with disabilities as it does for the parentsof non-disabled children. Specifically, pupils with SEN / disabilities have been shown to bedisproportionately affected by over-subscription criteria. This is especially the case when schools aretheir own admissions authorities. Furthermore, parents of children with SEN / disabilities are lesssatisfied 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 forpupils with SEN statements than there are for non-statemented children, as a result of admissionsdecisions made by schools and others.At a time when structural changes to the provision of education are occurring, with the advent of FreeSchools and the expansion of the Academy programme, it is vital that data regarding admissions ofchildren with disabilities and pupils with SEN is closely monitored and reported on.Physical AccessPhysical 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 respondentPhysical 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 had a better quality education if I didn’t need to decide what subjects to take based on accessibility – Survey respondentOf those who had progressed on to Further Education, some had attended universities whichspecifically catered for those with physical impairments. However, not all universities cater fordisabled 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 respondentHowever, physical barriers experienced by those in education were not seen as insurmountable, andpeople 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 be andwas 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, theeveryday experiences of disabled people suggests this is simply not the case. Of course, it goeswithout saying that the legislation has represented important progress towards achieving equality, butmany very basic problems still prevent disabled people on the ground from fulfilling their potential.Attitudinal barriersFor those with non-physical impairments such as learning disabilities, the greatest barrier experiencedwas negative or discriminatory attitudes. For these young people, bullying and even disability hatecrime – though not always referred to by this name – were a common feature of their everyday lives. Page 8 of 34
  9. 9. Fulfilling Potential – ecdp response [I experienced] regular bullying in the form of name calling and intimidation – Survey respondentOverwhelmingly, young people called for greater education about disability issues within schools totackle 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 needed tobe better at challenging bullying and therefore may benefit from training to support them in identifyingand 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 respondentWe 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 are robustlyassessed 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 andencouraged to improve their policies and practices.Other suggestions for ensuring disabled people did not experience negative treatment or isolation inschool 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 widercontext 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 respondent48% 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 and wereoffended 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 Page 9 of 34
  10. 10. Fulfilling Potential – ecdp responseour focus group discussions focused on the barriers people continued to face when looking for andmaintaining employment and some possible solutions.We discussed the specific support available to disabled people to ensure they have equal access tojobs, 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 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 participantLooking at an individuals’ employment ‘journey’ suggests barriers are experienced at a number ofpoints throughout the employment process.Experience of JobCentre Plus and Disability Employment AdvisersMany people reported negative experiences of using JobCentre Plus (JCP) and specifically a lackof understanding from the Disability Employment Advisors (DEAs) based there. ecdps third focusgroup unanimously agreed that JCP was difficult to use and inaccessible for some disabled peoplewho needed to use them. Better support from DEAs… [would improve my experience] – Survey respondentDisabled 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 felt understood my requirements when trying to find employment – Survey respondentUnfortunately for some, this was not always the case. This often led to negative experiences ofextra 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 ofbeing encouraged to find employment: The Disability Employment Advisor at the Job Centre said “why don’t you just get married?” – Survey respondentGiven 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 are facinga difficult job market and negative press around benefits and unemployment. Ensuring a qualityservice for disabled people at JCP should be a clear and monitored outcome for DEAs, built intotheir job description and objectives and reinforced through regular training.During ecdp’s previous work on Access to Work and specialist disability employment support, wefound that only 10% of individuals heard about Access to Work support through JCP. A third ofsurvey 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 resulted inpeople ultimately achieving the support which has enabled them to work.Employer attitudesWithin 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, whichmany feel they will not if they disclose their impairment or it is visible to the employer. For others, Page 10 of 34
  11. 11. Fulfilling Potential – ecdp responsenegative workplace attitudes – particularly for those individuals who had recently acquired animpairment – meant they either left or lost their job, even when their impairment had no directimpact 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 respondentTo 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 the importanceof 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 respondentPractical support through Access to WorkLooking past negative attitudes, which are addressed more broadly in Part 3, the biggest barrier toemployment 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 they couldnot work without the support that Access to Work provides, with a further 12% saying that theycould 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 respondentNot 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 worrying tonote 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 toWork.People have mixed experiences of using Access to Work. Key to the process being a positive onefor individuals is good communication all the way through the service, from the initial informationabout 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 respondentSome felt the level of transparency around what might be covered should be increased, so peopledo 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 Page 11 of 34
  12. 12. Fulfilling Potential – ecdp responseAccess to Work also supports individuals to do their job efficiently and to carry out their work on anequal basis with their non-disabled colleagues. This was particularly important for those who knewthey 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 respondentWith an understanding that Access to Work plays such an important role for people, it is essentialthat this is communicated, not only to potential users but also employers to ensure their concernsaround the extra costs of employing a disabled person can be addressed and they can meet theirobligations 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 respondentAs 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 forthe 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 whodrove their own cars. ecdp worked with Department of Work and Pensions and Department forTransport 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 able touse support appropriate to them.DPULOs currently play a vital role providing information, advice and guidance, to empower individualsto navigate complex services, most notably social care services. We feel DPULOs could play a furtherrole in supporting people to navigate similar services in employment. An example of this would beoffering direct support to ensure an individual receives Access to Work when starting a new rolewhere reasonable adjustments are required.Personal Budgets and Direct Payments for employment supportGiven 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 Payments foremployment 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 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 Page 12 of 34
  13. 13. Fulfilling Potential – ecdp response 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, OBEviLiving 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 betterable 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 respondentThis 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 the time to realise that I have views… – Survey respondentIt 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 a shower, washing my clothes, going shopping, help with housework and finances [enables me to live independently] – Survey respondentThis 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 that supportindependent 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 theimplementation of the right of disabled people to independent livingvii. The report draws attention to anumber 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 anything else– consistency in services, support and access to funding, is essential. Page 13 of 34
  14. 14. Fulfilling Potential – ecdp responseSome examples of transitions disabled people spoke about during ecdp’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 conditionWhen changes occur in an individual’s health or condition, a delay in getting support can cause thingsto deteriorate further for the individual. The original proposal to extend the qualifying period forPersonal Independence Payment from three to six months highlighted the problems many had hadwhile 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 respondentThese 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 put pressureson other services, such as the NHS. We were encouraged to hear the Government reconsider theoriginal proposal.It was clear that through our Fulfilling Potential engagement exercise there was a resounding feelingthat social care and health services are particularly inconsistent because there is often no dedicatedworker appointed to an individual’s case. Having to constantly re-explain the situation is distressingfor the individual but also wastes time for the provider and creates unnecessary delays. Theengagement process highlighted the need for consistent relationships between service users andservice providers.Greater consistency of service leads to reduced bureaucracy and in turn reduced costs which wouldimprove the experience for the individual and result in a win-win situation for the disabled populationand service providers.Moving houseMoving 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 thecase when moving from one local authority area to another, because of the disruption to people’s careand support.This is additional to the access barriers disabled people can face in finding accommodation in the firstplace: [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 participantCombined 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 Billviii 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 in the Page 14 of 34
  15. 15. Fulfilling Potential – ecdp responseSocial Care White Paper due this summer.Again, DPULOs could play a role in supporting disabled people through this process by ensuringjoined-up services across county lines.Moving servicesAs 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 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 enablesservice users to access this type of joined up support, run by peers with lived experience. Thebenefits of peer-led IAG are explored in greater detail below. Page 15 of 34
  16. 16. Fulfilling Potential – ecdp responsePart 2: Individual ControlIndependent 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 otherrequirements.Disabled people who took part in ecdp’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 ensuring disabledpeople are supported holistically. As such, ecdp believes the conversation around individual controlneeds 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 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 yourneeds?Choice and controlIt is often a combination of things which allow disabled people to have choice and control over theirlives. 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 is essentialthat they work together, and do so around the individual. My support should be the support I choose – Focus group participantBelow we capture some of the obstacles our Fulfilling Potential engagement participants highlightedin seeking to have choice and control.Inflexible and bureaucratic systemsDisabled people access support from a variety of sources and funding streams and use it in differentways to give them choice and control. However, disabled people we have engaged want the systemto 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 partin the lives of many disabled people. However, a number of individuals felt the welfare systemprevented them from taking full control of their lives: Page 16 of 34
  17. 17. Fulfilling Potential – ecdp response 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 participantHowever, individuals acknowledge the support the system provides is nevertheless essential inproviding independence, and so addressing the inflexibility and bureaucracy which can create barriersfor 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 respondentPractical 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-assessmentAs 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 suggests thatit leads to both better outcomes for service usersix and better use of public resourcex. As such, wewould like to see this provided for in both assessments and reviews in public services more generally.CommunicationsChoice 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 notalways clearly communicated or promoted. Even if they are, mechanisms that may be considered towork for the general population may not work for disabled people. For example, we know disabledpeople are far less likely to have used the internet. Indeed, nearly half of all adults who have neverused 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• 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 supportThrough peer support, disabled people can be supported by others with lived experience to navigatethe complex system of services. This approach gives the service user a centralised and consistentpoint of contact who understands the system from direct experience and can inform, advise and guide Page 17 of 34
  18. 18. Fulfilling Potential – ecdp responsethe 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 otherdisabled people, their communities and the issues which affect them at a national and local level. Thisis beneficial not only to the recipient of the support, but also the peer providing it – enabling routesultimately 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 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 inaction: 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 participantRight to ControlThe Right to Control represents a potentially exciting glimpse of what public services could look like ifpersonalised 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 agreed outcomescan best be met by bringing together funding streams from more than one agency and accessing thisthrough 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 memberEssex 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 from aDisability Employment Advisor have been directed to and supported through a number of otherservices 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 members supporta full range of funding streams and services to be included in the Right to Control programme. Thisshould reach as far as possible across all policy areas. In addition to the funding streams currentlyincluded within the Right to Control, we believe that the following should be considered for inclusion inany 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. Page 18 of 34
  19. 19. Fulfilling Potential – ecdp response 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 sideWe 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 on thesupply-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 goodsand services beyond social care and health settings.We thus feel there is a significant opportunity to be taken up to do more market-shaping work that canboth drive down costs relating to disability on the supply-side and potentially stimulate an increase indisability-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 at ecdp, 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 with ecdp 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. Page 19 of 34
  20. 20. Fulfilling Potential – ecdp responseHealthWatch, 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 as enablingthem to hold commissioners to account in the longer term. The establishment of equivalent structuresor scrutiny / reference groups in other policy areas – particularly employment and welfare – would bewelcomed.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 say onthe issues which affect them to influence relevant decision makers, but also enables ecdp to respondto external bodies, including the Government, Local Authority and a variety of other service providersin 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. Page 20 of 34
  21. 21. Fulfilling Potential – ecdp responsePart 3: Changing attitudes and behavioursQ8. What works well in changing the way other people treat disabled peopleDisabled people we worked with generally felt they were treated less favourably than others. Whilethere 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 educationThe 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 ofservice providers, from bus drivers to nurses and a prevalent suggestion for tackling this was disabilityequality training for professionals, and for young people in schools. This is developed further in thedisability hate crime section below.MediaMany disabled people feel the media are playing an increasingly important role in the representationof disabled people. They often felt this representation is – unfairly – negative and focused on benefitfraud. 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 respondentDisabled 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 in manycases 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 moredisabled 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 respondentAs well as visibility in the media, disabled people note that having a greater presence in society moregenerally, in part due to greater accessibility and greater support to access the community whereneeded, 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 respondentOn an individual basis, disabled people see that with this greater presence, they have their own roleto play in ensuring equal access and encouraging positive perceptions. This may be through usingtheir lived experience to support others or simply encouraging good practice: Page 21 of 34
  22. 22. Fulfilling Potential – ecdp response 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 respondentTrustThe fraud rate for Disability Living Allowance is 0.5%– lower than DWP’s administrative error rate forthe 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 ofrecipients are not using their benefit appropriately or misrepresenting their circumstances in order toclaim 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 addressed bothby Government, who should be continuing to build a relationship of trust with disabled people andworking to ensure that the disabled community is properly and fairly represented, and by disabledpeople themselves, through building constructive and challenging, but fair, relationships withGovernment.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 which disabledpeople are treated. We therefore consider the topic in detail below.Disability hate crimeThough 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 lives andat 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 fullpotential and playing active roles in their community. It didnt 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 and crowded areas, especially where youngsters get together – Survey respondentecdp has previously undertaken work to understand disability hate crime Understandingand its impact on disabled people. Through this co-produced research,ecdp identified four key areas which need to be taken forward in order to Signposting andtackle, prevent and address hate crime. The USER framework represents Supportthese four areas: understanding, signposting and support, education andreporting. EducationThere needs to be a greater understanding of disability hate crime, both on Reporthe part of disabled people, who do not always realise they are the victimsand of the professionals with a responsibility to address disability hatecrime and support victims. Page 22 of 34
  23. 23. Fulfilling Potential – ecdp responseThere needs to be a strong set of services which signpost and support disabled people when they arevictims of hate crime. These should be widely available and well coordinated. Many professionals donot 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 groupTo ensure wider change for disabled people, we believe education work should be focused on threeparticular 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 participantFinally, 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 situation ofdisability hate crime within our society and while people must be given the choice as to whether theyreport 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 placed towork 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 thecountry. As such, the model suggested by ecdp is transferable and applicable elsewhere. Indeed theEquality and Human Rights Commission (EHRC) published a national report which drew very similarconclusions: 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.xiIdentity and multiple disadvantageDebates about ‘identity’ are not ecdp’s speciality. But in our work with disabled people in Essex andbeyond we are constantly reminded of one very difficult fact: approximately 50% of all people whowould be considered a ‘disabled person’ under the law don’t consider themselves to be disabled. Thisincludes people across all impairment groups and across many long-term health conditions.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 ofDisability. Namely, that the barriers disabled people face are related to the society we live in and notthe individual’s impairment.Beyond this, many are starting to recognise that disabled people are not a homogenous group. The 1in 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 anotherdisadvantaged social group. Indeed, 35% of ecdp’s survey respondents felt they had faced particulardisadvantage 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 Page 23 of 34
  24. 24. Fulfilling Potential – ecdp responseHowever, 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 that ofthe landmark shifts in policing created by the murder and subsequent mishandling of the death ofStephen Lawrence by the Metropolitan Police. People did not feel they had seen the same changesfollowing the deaths of Fiona Pilkington and Francecca Hardwick after months as the victims ofdisability hate crime. In some ways there is improvement… In other ways they’ve worsened… People avoid the disability word… Stereotypes are much stronger – Survey respondentIt is important that disability groups learn from the progress made by other groups, for example thoserepresenting people from black and ethnic minority communities, and work in partnership with them toensure that those who face multiple barriers because of their identity are supported holistically toovercome them.Perhaps unique to disability, in relation to other equality strands, is the fact that not all disabled peoplewill identify themselves as such. This can lead to particular problems when aiming to ensure servicesreach 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 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 The Government should ensure that the positive coverage of Britain’s elite disabled athletes taking part in the Paralympic Games is fully exhausted for the benefit of all disabled people, 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 leversAs highlighted in Question 7, one of the key factors for ensuring disabled people’s voices are heard indecisions 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 moregenerally.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. Ifthe 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. Page 24 of 34
  25. 25. Fulfilling Potential – ecdp response SECTION 3: THE ROLE OF DPULOs Q11. Do you have any suggestions for how we should implement and monitor the Strategy once it is developed? [DP]ULOs should be at the forefront in establishing the strategy – Survey respondent Disabled people need to be included in every step of the process, using [DP]ULOs to advise and work with those implementing it – Survey respondent Through [disabled people’s] user led organisations who can feed back information to local or central government. Information should be given to disabled people if required regarding the strategy so they are fully informed of what this would mean to them – Survey respondent Throughout our response so far, we have highlighted issues and solutions from individual disabled people themselves. In the preamble and throughout this document, we have highlighted that Disabled People’s User-Led Organisations (like ecdp) have a role to play in achieving the enabling state and type of society for disabled people we have discussed. This is something that our participants and respondents also feel should happen, too. In this section we therefore set out what we think the role of DPULOs is. DPULOs: the voice-business approach Before focusing on the role DPULOs can play in achieving the Disability Strategy, it is worth highlighting what is unique about DPULOs. There is one distinct feature of DPULOs in the work they do: they operate on both the demand side (i.e. providing the individual and collective ‘voice’ of and for the lived experiences of disabled people, carers and people who use support services) and the supply side (i.e. providing services). The long history of DPULOs means they are familiar with operating on the demand side, their work drawing on campaigning-type activities for which they are often set up. However, the need for sustainability and financial robustness, as well as various policy drivers, places them in a unique position of being able to consider undertaking more ‘business-like’ activities (e.g. providing support services under contract) alongside this voice-based activity. The diagram presents the typical journey a DPULO may take in seeking to find the balance between these dual roles. + Campaigning In practice, and in areas where they exist, the need to establish both demand- and supply-side activities and existing arrangements within a locality gives rise to a number of potential operating and delivery models for DPULOs – a variety that is to be welcomed.Voice In the shift towards levelling the playing field for different types of public service provision – see, for example, the focus on mutuals and social enterprises – we strongly feel that DPULOs should equally benefit from such moves, and can be ‘a part of the mix’ in the public service Contracts only economy. 0 - Business + What is the value added by User-Led Page 25 of 34
  26. 26. Fulfilling Potential – ecdp responseOrganisations?The value added by DPULOs includes, though is not limited to, the following:• DPULOs provide the ‘voice’ of disabled people. Though this can focus on service provision, it also includes input to equality schemes, access and involvement groups and other less formal forums• DPULOs can and do work across more than one policy area – they are more easily able to ‘join up the dots’ on the ground, responding to the needs of an individual rather than a care-and- support or housing recipient. This can particularly be seen in their central involvement in the current Right to Control Trailblazers• Where services are delivered by DPULOs, they are typically shaped and delivered by service users, meaning they provide a peer-to-peer approach which calls upon direct personal experience• DPULOs are more nimble than statutory agencies – they are informed by the ‘what works’ dynamic and can adjust quicker in response to changing circumstances• To find solutions to individual or collective issues, DPULOs are able to pool creativity, knowledge and experience. This equates to using the ‘lived experience’ of disabled people for the benefit of their peers.As such, the following outcomes can be offered uniquely by DPULOs, above and beyond any otherorganisations:• DPULOs have legitimacy, both with users and service commissioners• DPULOs offer pathways for service users to realise their social capital, be it formally or informally, and therefore contribute to their local communities• DPULOs operate from a values base which encompasses the social model of disability and the principles of independent living.The role of DPULOsThere are a number of practical roles – through services, project and functions – that DPULOs canplay across both business and voice. These types of practical roles are outlined (not exhaustively)below and can be funded in a variety of ways, including public funding (contracts, service levelagreements, public body grant funding), grant and charitable funding, and self-generated income.The work that DPULOs can do includes:• Representing the voice of disabled people locally through: o Capturing, aggregating and representing the voice of local disabled people o Working in partnership and coproduction with commissioners and other stakeholders o Providing the infrastructure for the involvement of disabled people in decision making• Providing a wide range of information, advice and guidance on a number of topics/issues in a variety of different ways and formats• Supporting disabled people through assessment or self-assessment processes for a range of public services for which there are eligibility criteria (such as social care or welfare support)• Providing independent support planning for individuals who need to match their entitlement and assessed “needs” to the outcomes they wish to achieve. This includes: o Explaining how support planning works and what its benefits are o Enabling and empowering someone to take control of their own support plan o Providing support where it is asked for o Supporting the individual involved to ensure their support plan will be accepted by the approving body• Brokering services that individuals need to deliver their agreed support plan, through: o Providing information and advice about different providers o Liaising with providers on behalf of the individual, if this is what they choose o Putting in place all arrangements for services to start• Providing support services to people managing Personal Budgets / Direct Payments, including: o Payroll and money management services o Employment advice for those people who choose to employ their own staff, and all this entails (e.g. recruitment, management, training etc.) o Training for individuals to enable them to confidently exercise choice and control through Page 26 of 34
  27. 27. Fulfilling Potential – ecdp response their Personal Budget / Direct Payment• Supporting people in the review of their support, either through self-review or through supporting them in any statutory body’s review process• Providing opportunities either directly or indirectly for disabled people to use their lived experience, for example through volunteering or providing peer support• Providing advocacy, through representing individuals and ensuring their voice is heard and understood• Facilitating peer support between disabled people, enabling people to share: o Their lived experience for the benefits of others o Tips and tricks of what does and doesn’t work o What it felt like to go through a particular process or system o The opportunity to build further social networks and become part of the fabric of community life• Providing services to public, private and voluntary organisations, including: o Equality training o Access audits o Administrative support o Support in enacting the Public Sector Duty.This list is by no means comprehensive, but it gives a sense of the scale of the types of workDPULOs can be involved in, on both the influencing (“voice”) and delivery (“business”) sides of thepublic service economy and economy at large.It is worth making the further point that, though much of these types of activities can currently befound delivered by DPULOs in a social care setting, we strongly believe that DPULOs can undertakeeach of these activities in each of a wide range of public services. In this document, participants havehighlighted the need for DPULOs to be fundamentally involved in areas such as:• Employment (particularly Access to Work)• Disability hate crime (and the criminal justice system more widely)• Health (especially Personal Health Budgets)• Integration of health and social care• Children’s services• Welfare reform• Volunteering and community development.Enabling the contribution DPULOs can make: addressing commissioningecdp welcomes the Government’s Strengthening DPULOs Programme and the practical and financialsupport it can offer to DPULOs. More than this, it provides a platform for the work of DPULOs anddemonstrates the Government’s ongoing commitment to the role of DPULOs.Beyond this, there are some key structural factors that act as barriers to DPULOs themselves infulfilling the potential role they can play. The most significant of these is commissioning.There are a number of key facilitators that are under the control of commissioners to positively shapeand create such a level playing field for DPULOs at both a strategic (commissioning-based) level anda more practical (procurement-based) one. Some of these are outlined below.CommissioningCommissioners can develop and implement policies that:• Stimulate the participation of public service users by encouraging the development of local groups and promoting the use of voluntary sector infrastructure resources to include and benefit service user groups• Work in dynamic partnership with individuals, communities and their representatives – such as DPULOs – to define, develop and deliver high quality services• Foster a level playing field for user-led and carer’s organisations to compete in any tendering Page 27 of 34
  28. 28. Fulfilling Potential – ecdp response process• Look to commission from local providers• Look to commission from voluntary sector providers• Recognise the added value that DPULOs can offer• Recognise the wider role of DPULOs when carrying out their duty to promote disabled people’s equality especially in drawing up and implementing local equality plans• Ensure support enables Independent Living and embodies the ethos of choice, control and for all people to participate as equal citizens in society• Ensure that local contracting procedures do not discriminate unfairly against small / new / DPULOs• Offer Contracts, not Service Level Agreements, in order to give potential DPULO providers flexibility over service delivery• Offer 3- or 5-year funding arrangements, rather than year on year, to support service improvement and provider stability. Article 19 and reserving contracts Article 19 regulations of the Procurement Directive 2004/18/EC form a part of European legislation that allows organisations to reserve public contracts for supported businesses, meaning it is permitted to invite only supported businesses to bid for the work. A supported business employs disabled people as over 50% of its workforce. For contracts under £144k, it is therefore allowable to simply invite a supported business – such as a local DPULO – to bid for a contract or offer them the chance to match the best price. Awareness of Article 19 is very low. Provision of information about it – and how it can be used – would be a very useful addition to the implementation of the Disability Strategy.ProcurementThere are a number of practical things procurement teams can do to ensure procurement processesdo not adversely impact DPULOs. These are as follows:• Ensure DPULOs are given adequate time to respond to tenders• Consider using a restricted or selective tender list, or a ‘single source’ approach to target organisations controlled by users (particularly in cases of extending existing arrangements)• Ensure DPULOs are specifically made aware of potential services particularly noted under the areas they typically work in (i.e. Information and advice, Advocacy and peer support, Support in using Direct Payments (e.g. Information, Advice and Guidance (IAG), payroll, brokerage, support planning, Disability equality training, Support for the implementation of the Disability Equality Duty)• Ensure organisations who have not bid for contracts before are particularly aware of new opportunities• Ensure procurement portals are accessible• Ensure tender documents are accessible and proportionate to the contract in question• Ensure that the value for money components of the specification take account of the added value often contributed by local organisations representing potentially eligible users. This should particularly be the case in tender marking scheme (where such components of ‘added value’ typically form only 5% of judging criteria)• Recognise framework arrangements so that large and smaller organisations can submit joint tenders. Larger organisations may be able to bring economies of scale to the contract while smaller organisations may be better placed to provide specialist services.• Observe good practice during the application process through ensuring: o Each tender pack contains an evaluation and a complaints form o That tender packs are available in a range of accessible formats o Guidance documents are provided that cover equal opportunities, partnership working Page 28 of 34