Activate December 2005 Edition 57. Activate is the Newsletter of the British Council of Disabled People. “Whose Life is it Anyway?” “The Threats to Living Independently”. In this edition key articles relating to the proposed cuts to Direct Payments, changing to Individual Budgets and much more! BCODP – Fighting for our Human and Civil Rights. £3.00 to non-members. Free to members. Contacts and Acknowledgements: BCODP Campaigns, Media & Parliamentary Development Officers are Simone Aspis & Jared O’Mara. BCODP Finance Manager is Sheila Blair. BCODP Membership & Services Manager is Margaret Bordogna-Crane. BCODP Transcriptions Administration Assistant is John Ross. BCODP Membership & Services Administation Assistant is Martin Sims. our Address: British Council of Disabled People (BCODP) Litchurch Plaza, Litchurch Lane, Derby DE24 8AA Telephone: 01332 295551 Fax: 01332 295580 Minicom: 01332 295581 E mail: general@bcodp.org.uk Elected Officers of BCODP: Chairperson Anne Pridmore Deputy Chair (Internal) Janet Seymour Kirk Acting Deputy Chair (External) Roy Webb Acting Treasurer Julie Newman Company Secretary Sheila Blair BCODP wishes to acknowledge “Change” Picturebank and Access2 by People First for the pictures used throughout Activate. Disclaimer: The material found within Activate is the opinion of the writers and not necessarily the opinion of BCODP. Activate is available in other formats on request from: John Ross Email: john@bcodp.org.uk Hot off the Press!! Section 1 Chairpersons Diary Section 2 Individual Budgets Section 3 Introducing Jared O’Mara Section 4 Anti Social Behaviour Orders – Simone Aspis Section 5 Duality – Living for Real! – Mark Stevens Section 6 Whose Life is it Anyway Conference News Section 7 Equalities Bill – Simone Aspis Section 8 Olympics Bill – Jared O’Mara Section 9 Implications of Patrick Markcrow Murder Case Section 10 Research into Domestic Violence & Disability Section 11 The Incontrol Project Section 12 Chip & PIN - Sandra Quinn, Association of Payment Clearing Services (APACS) Section 13 Hello & Goodbye Section 13 History of the UK Independent Living Movement Section 14 Older People & Motability Scheme Section 15 Section 1: Hot Off the Press!! For some time NCIL has been working on the idea of developing new legislation to underpin the rights to Independent Living. Recently NCIL have been working with the Disability Rights Commission (DRC)to develop a new bill which it is hoped will be introduced in the summer of 2006. NCIL want to use this as an opportunity to deal with the fact that at the moment direct payments is not delivering Independent Living for many disabled people. The National Centre for Independent Living are urgently seeking your comments and involvement from as many disabled people and their organisations in the campaign around the bill detailed below. If you want to get more information or get involved in the campaign please contact:- Nick Danagher Executive Director National Centre for Independent Living 4th Floor Hampton House 20 Albert Embankment London SE1 7TJ   Tel:         020 7587 1663 Fax          020 7582 2469 E mail: director@ncil.org.uk Lord Ashley’s Independent Living Bill – proposed scope 1 – Purpose and principles Part 1 would set out the purpose of the Bill – i.e. achievement of independent living, with the DRC definition. It would enshrine the key principles according to which health and social care (assessment, provision etc) should be delivered – i.e. support for participation, equal citizenship (including employment, voluntary work, education and training, enjoyment of leisure opportunities, parenting etc) for all disabled people irrespective of age, race, gender, religion, sexual orientation. Somewhere we need to include reference to cultural sensitivity and awareness as integral part of Independent Living (IL). Will need to use a broad, social model definition of disability. To speak to everyone we may need to talk about people with impairments or long term health conditions who experience barriers to participation. There would then follow Parts dealing with the specific and substantive legal reforms required. > Arguably the first provision in the Bill should be amendment/ replacement of Section 29 (1) of the National Assistance Act 1948 which provides the legal definition of disabled people for the purposes of community care policy. The current definition is offensive and needs amending in line with the social model of disability. (Life Chances rec.) > Up front will need to be a right to effective protection against involuntary institutionalisation combined with a more positive right to choose where and how you live – i.e. whether you want to rent/buy your own home, live with family, live in supported housing/sheltered housing. Some of this can be expressed in the first Part of the Bill and can be taken forward by a proactive IL duty suggested below but may need specific duties/provisions. > Reform to the assessment regime will be required to ensure that all support packages are based on a starting point of self-assessment (or facilitated self-assessment for people lacking capacity) and geared towards facilitating IL (defined earlier in the Bill). Advocacy rights will need to be included here. > The Bill will also need to make doubly sure that there is no scope for local authorities restricting eligibility for assessments or services on grounds of degree of ‘risk’ or other dodgy criteria – i.e. if someone with an impairment or health condition requires support for IL basically they should get it maybe the first part will sort that but it may need specific provisions elsewhere in the Bill. > Next we must specify the kind of services which LAs will be obliged to provide post assessment – some are set out in the Chronically Sick and Disabled Persons Act but the list needs amending to include: Communication support and Advocacy support (all forms inc self advocacy) > Also, there is no specific duty on LAs to proactively inform people who are going through the assessment process about direct payments (what they are, how they work, what support you can get with them) – assuming this is the case that can easily be rectified. > The Bill will also impose duties upon local authorities to provide support systems/services (i.e. CILs and other support services, e.g. those set up to work specifically with disabled people from BME communities, impairment-specific support groups such as local societies OF blind and partially sighted people) to enable all groups of disabled people to take advantage of direct payments and proposed individualised budgets so that they can choose and control their own support arrangements. > Restoring Rights to services There must be clauses in the Bill which ensure that once assessment is complete and you say I need x,y and z and the LA agree the services – or budget/payments for the service – they are then actually provided. There are three legal barriers which need to be removed as outlined by Steve Cragg in a recent article: > In 1997 the House of Lords decided that when assessing whether a disabled person had a need, a local authority could take into account its own restricted funding. Thus, less funds available for community care could reduce someone’s personal “needs”. > In 1998, the Court of Appeal interpreted ambiguous legislation in such a way as to allow disabled people to be charged for their services under the Act — and for their disability benefits to be taken into account for this purpose. > The Court of Appeal has also decided that a local authority can look to other people to provide the services before it concludes that it is “necessary” for it to provide services. Each of these barriers needs removing. Enforcement As with previous legislation impinging on IL most of the provisions of the Bill will need to be expressed as duties on LAs and other authorities. The key to delivering enforceable rights is a) removing the barriers above and b) creating an alternative to the current enforcement regime which gives very limited chance for individuals to get effective and speedy redress and restitution. The only solution I can think of at the moment is to impose new duties on an existing body, perhaps Commission for Social Care Inspection to provide a casework service and be empowered to order recalcitrant LAs to put IL packages in place, fulfil their new statutory obligations and resolve difficulties for individuals. This would not restrict other rights – eg to judicial review – but there really should be a one-stop-shop for people to go to which is capable of intervening and resolving matters. That way you get close to something resembling enforceable rights as we understand them. It would also surely make sense to choose CSCI since it is the body that deals with the inspection, regulation and review of all social care services (adults and children) and has a total overview of the whole Is due to merge with Children’s Commission and Health Services Commission social care sector in England. Its current primary function is to promote improvements in social care. It deals with complaints about care service providers and from 2005 CSCI will review complaints about council social services departments. It is not that big a leap then to give them a kind of ombudsman type function as well. Also they have a duty to report annually to parliament on the state of social care in England, how resources are being used and how the reform of social care is progressing and we could add to that a specific duty to report on delivery of IL. CSCI is just for England: the Care Standards Inspectorate for Wales (CSIW) will need similar new responsibilities. Also on enforcement let us not forget LA/social services complaints procedures – advocacy support crucial here and we may need to revisit current legal provisions. In addition to enforceable individual rights we need to get the corporate/planning stuff right and create more pro-active duties than exist in current community care law (duties which would also be inspected and enforced by CSCI). > There is also a need for: * Pro-active measures to reduce the numbers of disabled people placed in residential care and to get people out!. * Pro-active measures to drastically increase the take-up of direct payments/individualised budgets, especially for people with learning disabilities and mental health conditions. This could possibly be achieved as part of a new primary, overarching duty on LAs and their partners (primary care trusts and contracted-out services etc) (modelled on Children Act) to work together and pool budgets to promote and deliver independent living for disabled adults (with particular reference to the 2 points above). We could borrow a further provision from the Children Act and make this duty subject to joint inspection (by CSCI, Healthcare Commission, Audit Commission). The CSCI and Health Care Commission themselves would need similar duties. CSCI as indicated above might be given the power to order a LA or partner organisation to take specific action if found to be failing in these duties. > There must be specification of the minimum outcomes people have a right to expect when they use public support services. CSCI could be responsible for drawing them up in consultation with disabled people and policing them. > Community care plans – we also need a section again saying these must be geared to delivering IL for all disabled people with stronger provisions around consultation and meeting the requirements of all disabled people. There needs to be strong exhortation on LAs and partners to develop a wide range of support services that they don’t currently have/commission, especially about people with low incidence disabilities like deafblindness where literally in many areas there is no communicator-guide service, no intervener service and you can’t just pull those support workers out of the bag – the service needs developing, adequate people need training. Also you cannot just click your fingers and create a top-notch low vision centre it all needs planning. > Paving provisions for a system of individualised budgets – this is important to have a stab at because we need to put markers down about what budgets can be safely and legitimately included and what cannot (ie we do not want individualised IL budgets interfering with or being conflated with existing benefit entitlements, eg to IB). this is what Liam Byrne wants to do > A part dedicated to housing including: * requirement on all LHAs to provide equivalent of a Disability Housing Register ie databases of accessible properties and disabled people needing them and a matching service; * Plus legislative measures necessary to ensure that choice-based lettings do not disadvantage disabled people; and * Improvements to DFG system – removing bureaucracy, means-testing (for adults post-Dec 05) and re-orienting to IL and rights. > Promotion of IL in care settings – just because someone is in residential/nursing care or a child is in LA care they will still need the principles of IL and equal citizenship applied to them. Plus we could include the extension of HRA to private care homes. > We could possibly also attempt to put Access to Work on a statutory footing and extend eligibility to voluntary workers. This would support likely future changes re coverage of volunteers by single equality legislation (Govt not yet committed to) and the whole welfare reform programme. > Removing discrimination against older disabled people in relation to IL. This would cover: making disabled people over the age of 65 eligible to apply to the Independent Living Fund; and extension of mobility component to over 65s (currently if you apply after age 65 you can only claim attendance allowance for care costs whereas Disability Living Allowance includes element for mobility too). > Provisions on disabled children and young people and disabled parents – we will need to boost provisions on transition for example. Also assistance with parenting rather than having your children taken into care Last Part would deal with interpretation, commencement and territorial scope. We will need to consider what lead in time we consider appropriate for the various provisions – more radical reforms will need a decent lead in time. Rome was not built in a day! Some provisions however we might want to come into effect the minute the Bill would notionally receive royal assent. Note on territorial scope: We will need one set of English provisions in many cases and complementary sets of Welsh provisions some of which will be identical others will need to be up to the National Assembly of Wales to flesh out in secondary legislation. I predict this is going to be tricky – DRC Wales colleagues’ early input is essential. I assume anything affecting benefits – eg extension of entitlement to mobility component – will also apply to Scotland but that everything else we touch on will be devolved matter. Legislation which is likely to be amended by our Bill includes: * Chronically Sick and Disabled Persons Act 1970 * NHS and Community Care Act 1990 * Community Care (Direct Payments) Act 1996 * Care Standards Act 2000 * Health and Social Care (Community Health and Standards) Act 2003  * Housing Act 2004 * Mental Health Act 1983 (and Bill ongoing 2005) * Mental Capacity Act 2005 Section 2: Chairperson’s Diary The last three months have been extremely busy so I am going to concentrate on just three events – the meeting in Birmingham entitled “Whose life is it anyway”, the New Spirit Coalition meeting at RADAR and the UK Presidency Meeting on Improving Life Chances. I have chosen these three subjects because they are all connected. The meeting organised by Southampton Centre for Independent Living “Whose life is it anyway” in Birmingham was well attended. Many people contributed sharing their experiences about how disabled peoples organisations were being stripped of their funding. Many spoke of the loss of tenders to the “contract culture”. This means that Local Authorities were not renewing contracts for support service for Direct Payments to Centres for Independent Living but rather to people like Pendrills, Rowan or other such BIG names. It was felt by many people that once these organisations take over the support needs of disabled people this will do little to empower us. Unfortunately the funding to disabled people’s organisations is being cut or withdrawn. In my own Local Authority the organisation of disabled people that provides my support has been turned down. There were four organisations tendered for the contract on Direct Payments all were asked to reduce the money required. We have been informed that the contract will go “in house”. This means that the Local Authority will provide our support! I would like to personally thank Southampton CIL for organising and funding this event. Attending my first meeting of the New Spirit Coalition (NSC) which I believe was formulated to work on the amendments to the Disability Discrimination Act was not a positive event. Except for one other person I was the only “of” organisation present. The feeling from many around the table was that we would be wasting our time to challenge the government about the closure of many organisations of disabled people through lack of funding. But rather to put our efforts into challenging the Pendrills and the Rowans who were getting more and more contracts. I am sure I do not need to tell you how difficult it is to sit on any committee when you are “spitting in the wind”! I decided that my efforts would be better used by withdrawing from the NSC and have informed them that BCODP will no longer be taking part. Lastly the UK Presidency Meeting on Improving the Life Chances of Disabled People which included the great and the good but certainly not disabled people. We were subjected to a discourse on the discrimination disabled people face (by a non disabled person) and how the BBC was making grand efforts to rectify this. A dialogue about the Special Olympics which ended by the speaker saying “He was sorry that he had not been able to get one of them here today”. By this he was referring to a person with learning difficulties. The only two disabled people who had any part to play (as far as I could ascertain) was Simon Minty who acted as the Chair for feedback from workshops and Lydia La Riviere-Zijdel who was the note-taker for the Promoting Independence Workshop. I attended the workshop on Mainstreaming Disability in Policy which was a joke because non of the presenters were disabled people. I was summoned by Lydia to attend the Promoting Independence workshop along with some other colleagues. The presenters spoke on a SCIE project called NAAPS (something about National Association of Adult Placements) which aimed to place people with learning difficulties into host families and the Director from Spain European Commission on residential care. So here we had a golden opportunity to show the rest of Europe what the UK does well but our government chose to invite speakers who were more intent on disempowering us. I think the ultimate insult was when the government invited the Ministers and the President of the EDF to the gala dinner leaving the rest of us to fend for ourselves. To conclude – we have a white paper on Improving the Life Chances of Disabled People that speaks of having a CIL in every local authority whilst many of our organisations are going under through lack of funding. At the same time we are denied a voice at the UK Presidency Conference which took as its message was about the need to consult and include disabled people. Anne Pridmore Chair BCODP Section 3: Individual Budgets – progress and next steps The purpose of this paper is to bring you up-to-date with our progress so far in developing the pilots for individual budgets and to seek your views. Commitment A number of recent publications have committed the government to piloting individual budgets with a view to rolling them out if the pilots indicate that there are benefits to be gained from them.. These publications are: Opportunity Age (the government’s ageing strategy); Independence, Wellbeing and Choice (the adult social care green paper), and Improving the Life Chances of Disabled People What is an individual budget? The fundamental idea behind individual budgets is that of person centred services. The idea is that an individual should be told the value of support for which he or she is eligible, and allowed to take decisions about how to use that budget. It builds on the concept of direct payments and also draws heavily on the In Control pilots for people with learning disabilities. In theory an individual budget could cover a wide range of different state funded/provided support. However, for the purposes of this exercise, which as noted above stems in part from the green paper on the future of adult social care services, we are planning to take social care support as a starting point. We are thinking of looking at the following other funding streams, beyond social care services provided by councils: Independent Living Funds Disabled Facilities Grants Supporting People Access to Work What will our pilots be testing? We want to find out: Whether the individual budget approach can deliver positive outcomes for people who use services. We expect the pilots will cover all the different groups who use social care services: older people, disabled people (including those with learning disabilities) and people with mental health needs. They should also cover a range of geographical locations and different types of local authority. What are the practical implications of the individual budget approach, for example in terms of workforce and cost issues. Number and duration At the moment we think the programme for the pilots will look something like this: late 2005: one or two early pilots will begin. The government's 2005 election manifesto commits to starting pilots in the current year. (These very first pilots are likely to focus on older people’s services because it was in that context that the commitment to starting work in 2005 was made) Also in late 2005 pilots on streamlining assessment processes (in particular between social security and social care) will begin. This is another strand of work arising from Opportunity Age , Life Chances and Independence, Well-being and Choice, which is closely connected with the work on individual budgets. (DWP are leading on this strand of work and will be talking about it at our meeting on 22 June). Early 2006: first main wave of pilots begins (perhaps six) Second half of 2006: second wave of pilots We would expect the pilots to run for 18 months to two years. We are keen to design them so that they can begin to provide us with evidence of whether and how well the individual budget concept works by early to mid 2007. (The government is committed to starting the rollout of individual budgets, if the pilots provide evidence indicating this is a good idea, between 2010 and 2012. Working backwards this means that we will need convincing evidence of their effectiveness sometime during 2007 in order to be able to meet this sort of timetable. We will not get the go-ahead from the Treasury for widespread introduction of individual budgets unless they are satisfied that they have robust evidence to support this). We are currently looking into the detail of the pilots and will be developing the following areas: What funding streams will be included in the pilots? What costs will be involved? (the cost of running the new system, plus the transition cost) What will be the impact on demand and supply? What related support services will be needed? What are the workforce implications? Can we design a generic model of individual budgets What are the organisational barriers to their introduction? What sort of support do people who receive services need in order to operate individual budgets successfully? We are working closely with analytical colleagues in the Department of Health to: Refine questions to be answered by these pilots Work out how many pilots and what design would give the evidence we need Identify an independent evaluation (probably from the academic world). We also want to develop ways of involving stakeholders – both organisational (such as voluntary sector groups) and individuals who use the services – in the design of these pilots. The pilots themselves, of course, will be designed to take a person-centred approach. We are looking for your views on the overall approach, and ideas about the actual questions that the pilots should be testing would also be helpful. Section 4: Let us introduce you to Jared O’Mara Development Officer BCODP I started work here at the BCODP in September and at the time of writing have been in the job well over a month. I share the job with Simone Aspis. I am 23 (soon to be 24) but despite my youth have been disability rights campaigning for around 6 years now. It all started with an idea I had about schools and disability education. I felt that schools should be teaching children about disability awareness as part of the national curriculum so I went to my local MP with my idea in writing. Next thing I knew I was talking with several MPs and ministers about my idea and eventually it did actually become an official part of the national curriculum (which you can see on the Disability Right’s Commission’s website). From there my interest in politics and disability rights grew and I campaigned on more disability and education issues before eventually standing as a Sheffield city council electoral candidate in 2004 aged 22 (I lost by a narrow margin but the experience was fantastic). After the election I took up two voluntary trusteeships at Sheffield disability charities Paces and DISC, which I still do now along with my work at the BCODP. My education includes a first class degree in journalism from Staffordshire University and a Post Graduate Certificate (PGCE) in Creative Writing from Sheffield Hallam. I’d like to think this helps me in my job at the BCODP as much of my work involves writing and media related activity. Away from charity, disability rights and politics I have my own music events promotions outfit where I regularly put on band events in Sheffield. I use this as a way of raising money for the charities I am involved with, as well as myself, and I’d like to think that the BCODP will benefit from this in the future. Section 5: Antisocial Behaviour Orders (ASBO’s) BCODP have found out that Disabled people who behave in ways that society thinks as bad (anti-social) because of their impairment or being disabled can be given an antisocial behaviour order. An ASBO is an order, which the police or a local authority can get to stop people from behaving ‘badly’. In an ASBO a person will be told not to behave in a certain way or stopped from going somewhere if it will upset others. BCODP have found out that people with ADAH or Aspersers Syndrome or with mental health issues have been given ASBOs. Such orders include stopping staring over a fence, stop swearing or spitting or even walking over bridges. If these orders are broken then the disabled person can go to jail. British Institute for the Brain Injured Children and National Association of Probation Officers have written reports saying they are concerned about disabled people getting ASBOs if their behaviour arises from being disabled. BCODP are concerned about this because it tells society that disabled people must change in order to behave in ways that society thinks is okay. It also means that disabled people who cannot change could face a stint in jail. BCODP are trying to get in touch with disabled people on ASBOs. We would like to run a campaign to stop disabled people from getting ASBOs if their behaviour arises from being disabled. The Government are having a ‘Respect’ plan, which will say what the Home Office will be doing about making people behave better. This plan will give us some idea what new laws the Government want to make around people who are seen to behave badly. If anyone has or is on or has been threatened with an Antisocial Behaviour Order then we want to know. Please get in touch with Simone Aspis on simone@bcodp.org.uk or telephone 0208-459-2998. Section 6: Duality - Living for real! Simon Stevens Enable Enterprises The current government claims that they want disabled people to have independent lives, to work and to contribute to their community and society at large. For all intents and purposes, I live up to these goals as someone who runs their own company, tries to live independently and contributes a great deal to society. I am also a role model for other disabled people, winning the Community category of Enterprising Young Brits in 2004 and appeared in the well liked “I’m Spazticus”. I am also well respected as a disabled activist, although my methods may differ from the norm. So common sense says, all this success has made me ‘a good boy’ and surely earn me a few Brownie points when it comes to personal care, as without the assistance I need, I could not do all this! Surely, my hometown, Coventry, is proud of this successful story and providing me with all the support? Not really. My local social services, with the mission to cut costs at all cost, do not see me as a young enterprising disabled person but rather a burden on their coppers who has to simply be kept alive, as it is not quite fashionable to let me die. The language of independence is replaced by the language of risk management as my life is boiled down to whether I will harm myself if I am left to do specific tasks as opposed to maximising my potential to contribute to society. This week, I realised as I received a letter from my apparent social worker to inform me my ‘care’ has been reduced, presumably to pay for the director’s new BMW, that the Green Paper on Social Care will not make any difference. Disabled people like myself must face the duality which today’s social care policies gives us. As a lifer, as I do use that term in the same way as used in prisons, with at least 50 good years left and thankfully no sign of a miracle, I have little choice but to fight the system to keep the assistance I need now, and for the long future ahead. The poor social workers who are now getting a load of free consultancy and training from myself, without a choice I might add, fail to understand that complaints are both time consuming and costly and it would be far cheaper just to leave some people like myself alone so they can concentrate on the people who need and want their attention. So when the DWP says how important it is that disabled people are working, just ask them to remind our social workers of it, who seem happy just to let us spend our days on bean bags (which we must buy ourselves of course!). Sectin 7: “Whose Life is it Anyway?” Conference News ‘Disabled People call for greater say in the quest for their independence’ Independent Living is good for Disabled People and good for society; this has been recognised in the recent “Improving the Life Chances of Disabled People” report, Direct Payments laws and many other important areas of government policy. However, ever more restrictive eligibility rules made by Social Services Departments are stopping the ability of Disabled People to live independently. More and more Disabled People are reduced to simply existing, effectively prisoners in their own homes. Centres for Independent Living (CIL’s), which are of great importance to successful Independent Living schemes, are having their funding removed by Local Authorities who are increasingly giving their work to ‘cheaper’ organisations who do not understand the issues. As a result, CIL’s are being forced to close across the UK. This is not what the Government wants, more importantly this is not what Disabled People want! The ‘Whose Life is it Anyway’ Conference was held in Birmingham on Wednesday 19th October, at the same time as the. Local Government Association (LGA)/ Association of Directors of Social Services (ADSS) conference On Friday 21st October a list of demands and resolves made by disabled people were given to the non-disabled people at the Social Services conference. This included: 1. Local user-led organisations (CIL’s ran by disabled people) should be valued for the important role they play and not be forced out of existence by the purchasing process. Peer support and advocacy (having others speaking for and helping them) are important in giving disabled people power and independence. 2. The ‘Whose Life is it Anyway?’ Conference welcomes the key points of the “Improving the Life Chances of Disabled People” report by the Prime Minister’s Strategy Unit, recent social care Green Paper and other policy documents. 3. It is noted that the Government recognises the Social Model of Disability and is committed to securing a CIL in every Local Authority by the year 2012. The Conference strongly supports this position, but believes that this is only achievable with the support and encouragement of existing user-led CIL’s and makes the point that these organisations must be made up of local Disabled People who are democratically accountable (voted in and responsible to the public for their actions). The Conference notes Patricia Hewitt’s speech to the 2005 Local Government Association (LGA) Association of Directors of Social Services (ADSS) conference, which focused on the importance of disabled people helping themselves and taking part in society (active citizenship). The Conference wishes the ADSS to recognise the groundbreaking work done by user-led CIL’s over the last 25 years in developing independent living schemes, particularly Direct Payments. In order for the Government to implement its policies of active citizenship (Older Persons Strategy, Disability Equality Strategy), service users need to be an important part of the process, and this needs helping along. User-led organisations have led on the developing Direct Payments and all other policies relating to disabled people over the last 25 years. The Conference recognises that Local Authorities need Government funding for supporting user-led ideas and organisations such as CIL’s. The availability of user-led organisations shouldn’t be left to the affected by Local Authorities’ money issues. The Conference also decided that the disabled people there would look to: 1. Forming a National Action Group to secure the long-term future of Independent Living as defined by Disabled People and to seek to get the commitment of the ADSS to recognise, support, negotiate and consult with this body. 2. To seek the active and immediate support of the ADSS to put a halt to the purchasing processes that are killing user-led organisations, and to develop newer and better solutions. 3. To seek the active and immediate support of the ADSS to get from the Government the proper financing needed to help recent Government initiatives which aim to give Disabled People power. It is clear that the way forward to ensure an independent future for Disabled People can be found through greater consultation and conversation by the government and media with organisations of Disabled People like the BCODP. Jared O’Mara Section 8: Equalities Bill – Simone Aspis This Bill will create one commission called the Commission for Equalities and Human Rights dealing with different groups of people who are likely to be treated unfairly or badly. We are pleased to say that BCODP have some important gains. The Commission will be required to promote good relations between disabled people and their local communities. The Government said it will not be assumed that the Disability Committee will finish after five years. All Commissioners overseeing the Commission for Human Rights and Equalities will be treated equally and fairly. The Commission will be able to help disabled people with their human rights cases if they are facing discrimination at the same time. The Equalities Bill is now in the House of Commons and will be debated by the MPs. We want the Commission for Equalities and Human Rights to assist disabled people if their human rights are being broken (violated) and that they must have the chance to get damages where appropriate. Mental Health Bill BCODP are still waiting for the Mental Health Bill to be published. We are expecting this to be a really bad bill. Section 8: Olympics Bill - Jared O’Mara The recent Bill for the 2012 London Olympic Games contained no mention of the Disability Discrimination Act (DDA) and the BCODP found this quite worrying. I wrote to several MPs from all 3 major parties and eventually found out from the Minister for Sport Richard Caborn that “the DDA applies to all public authorities. It will therefore apply automatically to the Olympics without need for express provision in the Olympics Bill”. There are also a few issues to be resolved around access, which will be discussed in the New Year and it is also more than likely that the Olympics will have compulsory Disability Equality Training for everyone involved (this will be decided formally in 2006). Mr. Caborn has promised to keep us updated on all future news. Section 10: Implications of Patrick Markcrow Case As the recent press interest has moved on from this case, BCODP feels that deeper issues highlighted by this case and the implications for disabled people need to be highlighted. The following is a discussion article written by Roy Webb: Recently there has been much comment in the newspapers and on television concerning the case of Wendolyn Markcrow, the mother who was given a suspended sentence for killing her 36 year old son, Patrick, who was a disabled person. This has been followed by comment about the problems experienced by people "caring" for disabled people, the stress they are under and the lack of support services available to them. These reports do bring our attention to a serious social problem, but there is another important way of looking at what is going on from a perspective which sees disabled people as valuable and equal members of our society. For some considerable time, disabled people have been campaigning to have the right to be full and equal members of society, to be able to choose to be active in their families, their communities and in society as a whole, in the way, which they themselves choose to do these things. When we see a court of law granting a suspended sentence to someone who has just murdered a disabled person it is difficult not to ask the question of what value our society places on the lives of disabled people. The story of Wendolyn Markcrow raises many other questions. One of these is the question of the support, which should be available to every disabled person and every person caring for a disabled person. Every disabled person and every carer, is entitled to an assessment of their support needs and can choose to have support through direct payments, where individually planned and appropriate support can be made available to enable disabled people to manage and run their own lives in a more independent way. Patrick had this right and, if he had known about this, could have had the opportunity to get support to design a program which would allow him to be more independent of his mother and to choose to live his life according to his own wishes and desires. There are many examples of disabled people successfully doing this, including many disabled people with learning difficulties and many similar experiences to those which we know about Patrick. One of the main issues which are being raised in all these cases, is that disabled people often do not know about what support could be available to them and do not know what rights they have in this area. This can be made worse by the reasonably common assumption that a disabled persons family or friends will provide whatever support they need. There are problems with the reliance on voluntary care, which we already know does put incredible stress on families and friendship networks. These stresses have been known to lead to family breakdown and, in the resent case, even to murder. The real tragedy is that disabled people still do not have enough information about and often limited access to the support services they need.  Local authorities are reported as restricting their qualification criteria for receiving support services and many disabled people experience difficulty acquiring services which genuinely meet their needs. The history of the introduction of direct payments has shown that it is possible to design and provide support which will enable disabled people to have more independent lives. The movement for independent living has always seen that this is not just about service provision, but about the right of disabled people to be included in our society as equals. Disabled people do have important, valuable and unique skills and abilities. Without including everyone equally, it is our society which is the one that is loosing out. BCODP is supporting a national campaign, organised by NCIL, the DRC and SCIE, on the right to independent living, which is aimed at developing new legislation which will underpin this right, including a thorough review of the funding of social care. The campaign also looks at ways in which disabled people can be more in control of what support is available to them and how that support is given, together with the fundamental issue of supporting disabled people to organise and represent themselves within our society, through independent disabled peoples organisations. While this is primarily an issue of social justice and civil rights, there are obviously big benefits for society if we can now fully embrace disabled people as free and equal citizens at all levels of our society. These are the issues we need to be talking about and the changes we urgently need to be making, if we are to prevent any more cases like Patrick Markcrow's in the future. Section 11: New Research on Domestic Violence & Disability In September 2005, Women’s Aid began a large new research project on disabled women’s experiences of domestic violence and on existing and improving service provision for this group in both local domestic violence and the disability organisations. The project is funded by the Big Lottery Fund, and managed by Women’s Aid. It will take place over two and a half years, and will be conducted by the Violence Against Women Research Group at the University of Bristol and the Centre for the Study of Safety and Well-being at the University of Warwick. The research team includes both disabled and non-disabled women, and is Gill Hague, Ravi Thiara, Pauline Magowan and Audrey Mullender. The team will be advised by disabled women and disability organizations, and by Women’s Aid. The study will include surveys of services available in both domestic violence and disabled people’s organisations, case studies of organisations, and qualitative interviews with disabled abused women, taking on issues of diversity and equality. In this instance, we are exploring the experiences of disabled women with physical and sensory impairment experiencing abuse, and service provision for this group. If you would like further information about the study or if you wish to contribute (for example, the team are conducting various consultations with disabled women who have experienced domestic violence), please contact: Domestic violence and disability project: Gill Hague: Tel: 0117-954-6722 Email: Gill.Hague@bristol.ac.uk Ravi Thiara: Tel: 02476-573771 Email:R.K.Thiara@warwick.ac.uk Pauline Magowan: Email: PAULIMAG@aol.com Prepared by Pauline Magowan on behalf of the research team. BCODP is one of the Consultants on this Project. Section 12: Information about the ‘In Control Project’ This is a project, which the Government have been sponsoring, mainly to improve the take up of direct payments by disabled people with learning difficulties and users and survivors of the mental health system.  The project works by identifying funding, within a local authority social services budget, which can be ear marked for these specific services, often called self-directed services.   Disabled people are then assessed and allocated funding from this pre-determined budget.  Disabled people can spend this money any way they like, including direct payments and can employ their own personal assistants.  They don't have to become employers themselves, and can choose how much they want to manage the project themselves.  The schemes are designed to be controlled by the disabled person, no matter how much direct control the disabled person chooses to have themselves.   To some extent, the idea of Individual Budgets is, in part, based on these ideas.  For us, as disabled people, its important to understand these, because they may partly shape the future of support services for disabled people. If we want to shape the future of the development of Individual Budgets, then we need to understand these issues and work to make sure that disabled people gain real independent living changes in their lives. If you would like a copy of this document please contact Martin Sims at BCODP or email Martin@bcodp.org.uk Section 13:Using Chip & PIN to shop safely this Christmas In the run up to Christmas millions of card transactions will be made by people buying Christmas presents for their family and friends. Here, Sandra Quinn from Chip and PIN explains a new campaign recently launched to encourage everyone to use their PIN with their chip and PIN card. Chip and PIN We recently launched a campaign to encourage everyone with a chip and PIN card to use their PIN for all their purchases. This is because after Valentine’s Day 2006 you must use your PIN to be sure you can pay with your chip and PIN card. Why the change? Since its introduction, UK shoppers have taken to chip and PIN with enthusiasm. It has already cut fraud on cards and has cut down the time spent queuing at the checkout. One hundred chip and PIN transactions a second are already verified by a PIN – which shows how easily most of us have made the change. And we cut out £36m of fraud in the first half of 2005 as a result of chip and PIN. Card companies and retailers now want all UK shoppers to use the PIN on their chip and PIN cards so we can stop even more criminals from using other people’s cards. How will if affect me? For the vast majority of disabled and older cardholders who are already happily using PIN there’s no change. Recent research of disabled and older cardholders has found that the majority have welcomed chip and PIN and find it easy to use. The research carried out by NOP* found that 82 per cent of disabled and older cardholders like using chip and PIN and 70 per cent prefer this method to signing. For those cardholders the advice is to continue to use PIN wherever and whenever you can. If you have a chip and PIN card but don’t know the PIN you should not expect to be able to sign after this date. You may need to provide an alternative method of payment instead. If you don’t know the PIN for any of your chip and PIN cards, or you are not sure if your card is a chip and PIN card contact your card company now - they will send you a PIN reminder and can easily confirm what kind of card you have. If you are a disabled driver who uses a chip and PIN card you will continue to be able to use your chip and PIN card at petrol stations after 14 February. Over the coming months some petrol stations will begin installing mobile PIN pads that will be brought to your car for you to enter your PIN. After the 14 February, petrol stations that have not installed the new PIN pads will have procedures in place to enable customers to use a signature just as they do today. If you have a chip and PIN card and input the wrong PIN on three consecutive occasions your card will be temporarily locked – you can unlock it by contacting your card company. If you haven’t yet received a chip and PIN card don’t worry. You will be able to continue signing in all stores until your card is upgraded even if it is after Valentine’s Day. What if I am unable to use chip and PIN? Using a PIN may be more difficult than signing for some disabled cardholders. If this applies to you don’t worry as you have plenty of time to sort this out. Contact your card company straight away and they will provide you with an alternative, most likely to be a chip and signature card. Disabled cardholders issued with chip and signature cards because an impairment prevents them from using PIN will always continue to sign for goods - even after Valentine’s Day. A retailer is unable to tell by looking at the card whether it is a chip and signature or chip and PIN card so they will always insert the card in the terminal and follow the instructions provided – these will request signature rather than PIN for everybody who holds a chip and signature card. What if I have trouble remembering my PIN? The following tips have been developed to help you choose and remember your PIN * If you find your PIN hard to remember, you can change it at most cash machines – just select the ‘PIN services’ option and follow on the on-screen instructions. * If you change your PIN, don’t use numbers too easily associated with you like part of your telephone number, or year of birth as they are too easy to guess * Remember to find out the PIN on your credit card – as you are less likely to have used it in the past. If you don’t know it, ask your card company to send you a reminder * Avoid popular or obvious number sequences like 1234 or 9999 - random combinations of numbers are best and harder for a criminal to guess * Some people find it helps to visualise the pattern the numbers make on the keypad as they enter them * Try breaking your PIN into two lots of two numbers, for example 5641 might be remembered as fifty-six and forty-one * Combining numbers which mean something to you is always a good way of remembering – your grandchild’s age (10) with your best friend’s house number (23) for example *NOP interviewed 350 disabled cardholders in the period 2 to 14 August 2005. This is the fifth wave of disability research Sandra Quinn Director, Corporate Communications corpcomms@apacs.org.uk For more information about APACS visit www.apacs.org.uk. For information about plastic card fraud and its prevention, visit www.cardwatch.org.uk Section 13: Hello & Good-bye to our Trustees & Staff Team Members Good-bye and thank you! We have had to make several sad good bye’s and thanks for all your hard work to say to two Trustee’s Sheila Furness and Iain Montgomery. We must wish good luck and good-bye to two staff members Vicki Stowell our Office Manager and Jayne Foulds our Transcriptions Officer. Hello & Welcome to our Team We welcome several new staff team members: * John Ross - General Administrations Assistant (part-time) who will be starting work here on Monday 28th November. * Martin Sims, who has been appointed as the Administration Assistant (Part-time) for the new Membership & Service Project Funded by the Big Lottery. * Jared O’Mara – who has been recruited for the Press Campaigns & Parliamentary Development Officer role and is Job Sharing this role with Simone Aspis. Jared is working from the Derby office and Simone is working from London. The work of these two staff members is funded by Comic Relief. Welcome to our New Trustees At our Annual General meeting on 15th October 2005 we recruited several new Trustees they are: * Claire Robinson - Developmental Adult Neuro-Diversity Association (DANDA) – National Organisation * Russell Stronach - Disability Action North East (DANE) * David MacDonald from the Omnibus Partnership – Northern Ireland * Jason Vaughan - Surrey Independent Living Council Section 14: Independent Living Movement in the UK For those readers who are interested in the History of the Independent Living Movement in the UK. We have an article written by John Evans in 2003 entitled The Independent Living Movement in the UK. Which was sent to us by Roy Webb. If you would like a copy of this article please contact: Martin Sims at the Derby Office or email him at: martin@bcodp.org.uk and he will be happy to forward you a copy. Section 15: Motability & Older People BCODP recently had a phone call from a carer whose elderly and immobile mother could not get funding for accessible transport from Motability because she was only in receipt of Attendance Allowance (AA) and not the Mobility Higher Rate Disability Living Allowance (DLA). If elderly people become mobility impaired after their 65th birthday or they apply later on in life (for example, if they were not aware of DLA but were eligible beforehand) then there is no benefit or mechanism in place to recognise their mobility difficulties, there is just AA for their care needs. As a result, this group of people cannot get any help with funding for accessible transport from the mobility scheme, even though they may well be equally or more mobility impaired than someone who is eligible for the scheme BCODP wrote to Motability to point out this problem and received a reply in which they said they would formally look into changing “opening the scheme to a wider audience”, finances providing. We will be in touch with them again soon to follow up the matter. Jared O’Mara