Public Workshop Report

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Individual budgets in social care: report of the RNIBworkshop held in London on 17 March 2009

1. Introduction

1.1 The personalisation agenda and the growing use of individual budgets(IBs) have become central features of public policy in relation to thedelivery of social care services.

1.2 As the largest organisation of blind and partially sighted people in theUK, the Royal National Institute of Blind People (RNIB) takes a stronginterest in the development of this approach, which we support inprinciple while recognising that important questions remain to beanswered if it is to realise its potential.

1.3 RNIB decided that a workshop, designed for our Trustees and AssemblyMembers, would be helpful in enabling us further to develop ourunderstanding and policies in relation to IBs. This took place on March17 2009 at RNIBs headquarters in London.

1.4 This report sets out the discussion and conclusions reached on the day.It is based on a combination of material provided by contributors and notestaken by RNIB staff in the audience, backed up with audio recording.

1.5 We hope that this account of our workshop will prove of interest, both tothose who were there, and to those who were not but who share our desireto ensure that the perspectives of blind and partially sighted people are

heard in this important debate.

2. Welcome by Fazilet Hadi, Director of Policy and Advocacy, RNIB

2.1 Welcoming participants to the workshop, Fazilet Hadi said that theadvent of personalisation is a major development in social care policy and


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it is essential that blind and partially sighted people should not be excludedfrom the opportunities that it presents.

2.2 This workshop brings together a number of contributors able to bring to

bear a variety of perspectives and experiences, to help us develop our ownideas and plans, particularly in relation to the role and potential of IBs.

3. What the individual budgets evaluation found

Professor Jill Manthorpe, Professor of Social Work at King's CollegeLondon, Director of the Social Care Workforce Research Unit and amember of the Individual Budgets Evaluation Team.

3.1 The evaluation of the 13 individual budget pilots, via the IndividualBudgets Evaluation Network (IBSEN), found that the aim of integratingfunding streams had been difficult to achieve.

3.2 There were few cases of such integration. They were most likely to besocial care money and Supporting People payments and not very oftensocial care and money from the Department for Work and Pensions.Working across professional boundaries and ensuring that individuals couldreceive budgets that pooled resources from a range of Government

departments proved difficult and more needs to be done in this area.

3.3 In some respects, older people benefited less than other groups ofservice users from IBs. We need to understand if this was a finding relatedto the early days of IBs and if so, are things improving - for example, ifgreater attention is now being given to modes of deployment other thandirect payments.

3.4 There might be opportunities for voluntary sector organisations to act as

brokers.

3.5 However, it is not clear whether voluntary sector organisationscontracting with local authorities to provide social services "in volume" willbenefit from the personalisation agenda: personal budgets may affect localsociety day centres, for example, if people chose to use their IBs on otherthings.

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3.6 Is it such a bad thing that we may see closures of services that peopledo not want to use when given the choice? De-commissioning presents bothopportunities and threats.

3.7 However, there are real risks of increased isolation if people entitled toIBs become "micro-employers" and employ just one or two people.

3.8 There are likely to be consequences for the social care workforce.Social workers and home care workers might find their roles changeconsiderably.

3.9 It is not yet clear how far, or if at all, social care workers will leave theworkforce as a result of the personalisation agenda, or alternatively, if they

will change roles to become personal assistants or similar.

3.10 There are concerns that the rollout of individual budgets could lead to atwo-tier workforce (professional and rewarded social care workers and lessqualified, less regulated personal assistants who may not have contracts orcontinuity of employment).

3.11 There could be complications if friends and family take on the role ofpersonal assistants, paid to meet peoples needs. Does the state trust thateverything will be alright and that public money is being spent appropriately,

or in such a way that it leads to improved outcomes? What duty of care dolocal authorities retain under public law?

3.12 There are clearly questions here for Trustees to consider, especially ifit is their charity which is being commissioned to provide care and support.They must be clear on what is expected of the charity under public law andunderstand all the risks they may be taking on (in terms of liability,registration, insurance etc) as well as the possible benefits for the peoplethey wish to support.

3.13 Where people wish to access advice or brokerage services, voluntarysector organisations may wish to position themselves so that they are theones that service users turn to, and that local authorities and other publicsector bodies commission. Is it altogether realistic that advice and advocacywill be universal and free without major investment? Jill's view was thatindividuals may end up having to use some of their budget to pay forbrokerage services. Indeed, there will be certain private sector agencies

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offering brokerage services for quite a hefty fee! This may of course be verycost-effective for people who now pay for their own social care (known asself-funders) but actually have very few good sources of advice andguidance.

3.14 Ultimately, it is important not to be too prescriptive about how peopleuse their budgets. For example, one lady with visual impairment used herbudget to buy in a certain amount of care each week, leaving her free forthe rest of the week to bake cakes (her favourite pastime). This is what therhetoric of "improving outcomes" or "personalisation" can really mean.

3.15 National charities have a useful role to play in sharing best practice onwhat works for the people they represent and also possibly delivering or

developing aspects of national brokerage or information and adviceservices. They need to be alert to national and local developments so theycan shape the policy agenda and challenge poor practice.

3.16 Finally, it is important to tell people that even when they may not beeligible for social care support, they may still be able to obtain assistanceunder Supporting People criteria; that disability benefits can help withperson-centred care; and that new developments in this area in the NHS(which is also considering personal health budgets) are intended to focus onimproving outcomes for service users.

Note: For details of the full evaluation report, please seehttp://php.york.ac.uk/inst/spru/pubs/1119/

Discussion:

3.17 The following were among the contributions made during thediscussion:

3.18 One participant raised a question regarding the criteria by whichvisually impaired people become eligible for support. She commented thatpeople with visual impairment very rarely reach "substantial" or "critical"(within the "Fair Access to Care Services" framework) so are usually noteligible. There is an issue of making sure people with severe sight loss getcare.

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3.19 She noted that "Supporting People" does provide support for manypeople with severe sight loss.

3.20 The issue of change in service provision was raised: for example, the

de-commissioning of existing services. There may be new service providers,while old services (such as day care centres) may close, when people whoare no longer tied to them vote with their feet. This could create newservices based more on what service users actually want and require - forexample, the Centreparcs respite model. There may also be newcommercial opportunities for service providers, as service users havecontrol of their own budgets.

3.21 It is important to question whether or not local authorities have the

skills and experience to deliver IBs effectively. Brokers who negotiate theservices will also have to have a high level of training.

3.22 Service users must be listened to. Self-assessment is really important.People must be listened to about issues of personal choice, for exampledying at home rather than in residential care or hospital. More effort must beput into helping people to be able to express what the want and need.Carers and service providers need to advocate for service users, providingsupport and advice so people can get what they need.

4. Personal experience of an individual budget

Cindy Peacock, individual budget-holder.

4.1 Cindy gave a personal account of her experiences since she lost hersight and was allocated an IB, by Barking and Dagenham Council.

4.2 Cindy is in her mid-thirties. Ten years ago she was sighted, had just

graduated from university and was getting married. She started to lose hersight and pretended that everything was OK, although she was becomingvery depressed.

4.3 Cindy had children and finally sought help from the local Council. Shewas given direct payments to enable her to get help with housework. Shewas a bit happier, but things were still difficult. Barking and Dagenham

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Council then approached her to see if she would consider becoming asteering group member for direct payments.

4.4 She was then offered a place on the individual budgets trial and filled

out the IB assessment form. She gave details of her own care needs and ofher parental responsibilities. She had to write her own care plan.

4.5 Things were the same at first, but then she found she was able pay forthings she had not been able to under the previous direct paymentsscheme. For example, she was able to attend a mother and toddler groupfor the first time with support to help her supervise her children; attendcollege to learn Jaws; purchase a laptop and software to make a computeraccessible to her; and pay friends to help her, rather than employ strangers.

She found that her new arrangements also worked out cheaper, allowingthe budget to stretch further.

4.6 Someone supported her throughout the process, overseeing the careplan to ensure her needs were being met. As a result, she felt much happierand has much more flexibility and independence.

Discussion:

4.7 The following were among the contributions made during the discussion:

4.8 A number of participants asked Cindy about her personal experiences,including whether she would have chosen to do anything differently; andwhether she thought IBs were best suited to a young mother like her, butnot to an older person.

4.9 Cindy's view was that IBs are appropriate for all service users, becauseultimately you remain in control - if you wish to use a direct payment and

purchase your own care you can; but likewise, if you wish to receivetraditional services from the local authority, you can. And if you so wish,there are already well established organisations which can help youmanage money received in the form of a direct payment.

4.10 There was a discussion of mobility training versus carers. Cindy saidthat provision must be based on peoples real requirements. Also, support

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must be built in to help people through the transformation of acceptingdisability.

4.11 Direct payments help you meet your needs, but IBs give you freedom

to do what you want. Once basic needs are met, people have the space tothink about what they need to improve their lives.

4.12 There was a question regarding employing friends. They must payincome tax, but you can spread payments out by employing multiple friendsso they are not earning a taxable amount every month; and you can remainwithin the appropriate limits so as not to lose any of the IB in tax.Alternatively, you can employ one person full-time and sort out tax andnational insurance contributions for them.

4.13 If something goes wrong, there needs to be a safeguarding system forservice users. However, having freedom of choice will mean more freedomto vet people, buy services from agencies and purchase insurance if theywant.

5. Individual budgets in social care: an overview of public policy

Robin Murray-Neill, Putting People First Team, Dept. of Health (DH).

5.1 Personalisation represents a new direction for social care services.Clearly, there are risks to every endeavour, but that doesnt mean you don'ttry new things.

5.2 The best thing a local authority (or indeed any of us) could do is to makea judgement on the acceptable level of risk we're willing to take and to stickwith that decision. In that respect, providing an IB is no different frommaking any other serious judgement in life.

5.3 Robin recommended that everybody try to read Putting people first(Dec. 2007) - a concordat committing Government, together with agenciesrepresenting the local government and social care sectors, to transformationof adult social care services in England. (See Appendix 2, below).

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5.4 What was clear before IBs were piloted was that direct payments hadn'tchanged people's circumstances to the degree policy-makers originallyanticipated.

5.5 IBs represent a more radical shift, away from crisis intervention toenablement and early intervention to promote independence.

5.6 They represent a new relationship between citizen and public servant.Public servants (social workers) work in service of citizens' needs.

5.7 However, even with IBs, early experiences would appear to suggest thatnot everything has worked as envisaged. For example, the health and socialcare sectors have been unable genuinely to join up and pool funding.

Ideally, you would have a situation where the NHS plays its part in fundingIBs, recognising the cost savings that might be realised in health provision.

5.8 Robin said that there are a lot of good intentions behind the rollout ofIBs, but that he is "not wholly nave" about their implementation. He feelsthat Putting people first for the first time put the service user in the "drivingseat", but he would encourage RNIB and those with sight loss to challengeservices failing to live up to its high expectations. "We must takeGovernment at its word and make sure we keep them accountable". Whenwe experience "monolithic, top-down paternalism", again we should point

this out.

5.9 Independent living is now not just conceptualised in terms ofindependent living at home, but independent life in general. Thisencompasses people's personal aspirations, independent use of transportetc.

5.10 There is a wide variety of "life domains" in the resource allocationsystem (RAS) questionnaires that he has seen so far. There is very little

consistency nationally. So some areas prioritise domains likely to be ofrelevance to an individual with sight loss, while others do not.

5.11 We should empower blind and partially sighted people to challengelocal authorities designing RAS which do not include "life domains" onindependent access to information and communication (access to reading,information technology etc).

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5.12 Robin will consult the DH Putting People First Team to establish whichlocal authorities are "trailblazers" or beacons of good practice in designingRAS. He is aware that some of the pilot sites, including Barking andDagenham, can point to good practice.

Discussion:

5.13 The following were among the contributions made during thediscussion:

5.14 Some participants raised concerns that visually impaired people willnot get fair and adequate support. Robin assured the audience that the

Government is committed to a personal choice mode of practice. FaziletHadi commented that visually impaired people must have an opportunity tomake their voices heard and ensure their needs are met.

5.15 IBs will be assessed by need and will also be means-tested. Theprovision of resources via IBs will not prevent local authorities fromproviding other services in tandem - for example, talking books via thelibrary. If people do not wish to use this service they can still use their fundsfor other things.

5.16 One participant said that it is important to note that an IB is only part ofa familys need for support, as people with visual impairment are alsoparents and carers and need to be able to provide for the needs of thewhole family, not just of themselves.

5.17 Regarding de-commissioning: how will new choices work? There willbe losers as well as winners as there will not be capacity to provideeverything to everyone. There needs to be a middle ground based onindividual need and choice.

5.18 There cannot just be a "one-size-fits-all" service for blind people. Allservice users must be treated according to individual need, lifestyle etc.

5.19 Rehabilitation officers should not be cut. Services change shapedepending on need, but there will still be a need for rehabilitation workers,particularly at time of diagnosis. There is often a lack of awareness aboutthese services and how they can help.

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6. Allocation of resources to service users: the options for localauthorities

Simon Shaw, Direct Payments Project Co-ordinator/ Policy Officer (OlderPeople), Sense.

Introduction

6.1 We need to look at the different options for resource allocation for IBs.

6.2 Its important to make a distinction between discussion of the concepts

of personalisation and IBs and then how resources are allocated.

6.3 Every social care system has a method of allocating resources. Forexample, direct payments (transparent) and traditional services (nottransparent).

6.4 Resource allocation being correct is one of the key factors in enablingindividuals to have real choice and control as well as their needs met.

6.5 Resource allocation must work for all, including people with visual

impairments, deafblind people, visually impaired people with additionaldisabilities, older people with dual sensory loss, and/ or complex needs and/or mental health issues.

6.6 I will focus on two methods: the resource allocation system and theoutcomes-focused method.

6.7 The RAS is a questionnaire-based method, allocating points and thenan amount of money which individuals must use to meet their needs.

6.8 Outcomes-focused assessment looks at what people want to achieve,how this will be done and then how much this will cost.

Resource allocation system

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6.9 A desire from Government to focus on transparency led to a points-based system being developed.

6.10 What does a RAS look like?

A standard questionnaire format

6-18 questions

Answers have a point value

Points are totalled to give overall score

This is then converted to a cash sum.

6.11 Is it very personalised to ask everyone to answer the same questionsand give a limited range of answers?

6.12 Sense and other voluntary sector organisations submitted Freedom ofInformation requests to see the full RAS to those local authorities that haddeveloped one.

6.13 Here is an example from one local authority. There are six questions. Iwill read out the maximum level of need and the amount of points that gets.

1. Essential living tasks: I always need someone to support me when I

am undertaking essential living tasks. 10 points.

2. Personal care needs: I need full intimate support with my personalcare (e.g. showering, bathing, continence etc.) 10 points.

3. Work/ leisure/ learning: I enjoy work and/ or leisure, social activitiesor learning. I need daily support to take part. 5 points.

4. Communication: I can communicate but need someone to supportme to express myself and to understand others at all times. 5 points.

5. Health: I need constant and intensive support from others during a24-hour period to manage my long-term physical health condition or tosupport my mental health needs. 10 points.

6. Staying safe: I need intensive support 24 hours a day becausethere are risks around me I cannot manage. I need other people to keep mesafe. 30 points.

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In this example you need at least 14 points to get anything: 2,750 peryear. The maximum you can get is 54,325.

Does a RAS meet needs?

6.14 Looking again at the question about work, leisure and learning:"I enjoy work and/ or leisure, social activities or learning. I need dailysupport to take part".

How would a wheelchair user meet this need?

How would a visually impaired person meet this need? Is it going to cost the same for everyone to achieve this?

Does the RAS continue the postcode lottery?

6.15 Every authority is developing their own RAS in different ways, withdifferent numbers of questions and ways of asking them, different amountsof points allocated to different needs and different weightings between

different areas.

6.16 For example, each RAS put a different emphasis on risk:o 30 points out of 70

o 8 points out of 95

6.17 Very different areas are covered by each RAS. For example, less thanhalf of RAS include a question about communication.

6.18 There is no statistical validation of the questions. This needs to occurto avoid bias and to ensure construct validity and therefore avoidmarginalisation of any group or type of need. For example, Rasch analysiscould be employed. This is an analysis that can be used to validate scaleswhose purpose is to total individuals scores and allow for comparisonbetween individuals totals. Rasch analysis would look at the way a RASquestionnaire is designed so as to identify whether the design would lead toanomalies or a disproportionate focus on certain areas. The presence of thiswould lead to inequity. For example, it might show that a RAS has a

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disproportionate focus on risk and not enough focus on communication.This would then lead to an unfair result for individuals with communicationsupport needs.

Is a RAS transparent?

6.19 IBSEN found that:

Less than half of those in the pilots knew how their budget had beencalculated.

Some of those who had it explained found this difficult to understand.

In some, the RAS has resulted in an "indicative" budget. This means that

there was then some flexibility about the amount that was allocated toindividuals. This is said to reassure people that there is some flexibility,but then how transparent is this system?

Is a RAS equitable?

6.20 Is a RAS just and fair to all?

Some sites had an upper ceiling on funding. Did the pilots avoid people with complex needs, opting for "easy wins"

instead?

Does treating people equally mean that you use the same questionnaireand the same points for all groups?

The more you make it sensitive to the needs of different groups the morecomplex and less transparent it becomes.

Even if a RAS is considered transparent, this wont stop peoplecomplaining about the level of resources that has been allocated to them.

Debate continues about the merits of a mathematical or points makeprizes approach (IBSEN).

Is a RAS transformative?

6.21 This is the introduction to one questionnaire:

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This questionnaire is designed to assess how having a disability affectsyour day-to-day life. It's not about how disabled you are but is about the lifeyou lead at present.

6.22 But what about individuals aspirations? Is there a better, morepersonalised way?

The outcomes-focused approach

6.23 What is an outcomes-focused approach?

6.24 Outcomes are the end results, goals and achievements which may be

supported by service provision.

6.25 Needs-led assessment looks at problems, so is an outcomes-focusedassessment a way to look at possibilities and aspirations?

Example: Coventry during the individual budgets pilots

6.26 The key questions asked are: What do you want out of life? What support do you need to achieve this? How much would this cost?

6.27 The four high level outcomes are:autonomy outcomespersonal comfort outcomeseconomic participation outcomessocial participation outcomes.

These are followed by sub-outcomes.

6.28 It doesnt give the person an upfront budget but it does allow them tosay what they want to happen in their life. This can work well for people withlearning disabilities, but not so well for older people with smaller packagesas the process is labour intensive.

6.29 Here is a detailed example:

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High level: social participation outcome

Smaller outcomes: X would like to access outdoor activities with others

Risk associated with not meeting this outcome: loss of independence,

frustration, depression Who will assist: staff with guiding skills

Priority for local authority (according to "Fair Access to Care Services"criteria): 1-4

Priority to service users: 1-4

This model includes the option to refer for specialist assessment.

Making sure resource allocation systems work for people with visualimpairments

6.30 The following are possible actions to achieve this end:

Sensory teams to be involved in developing resource allocation systems.

Organisations to monitor and feedback from individuals.

Publicise Putting everyone first, when it is published [see Resources,below].

Local authorities to take up the challenge of personalised procurementand place-shaping - making sure that the local market can meet theneeds of those who are taking control of their support so they can spendthe resources that have been allocated to meet those needs.

Conclusion

6.31 [Resource allocation systems] need debate at a national level. This

debate should extend to consider the relative merits of alternative methodsof resource allocation (IBSEN).

Resources:

Evaluation of the individual budgets pilothttp://php.york.ac.uk/inst/spru/pubs/1119/

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Individual budgets in Coventrywww.coventry.gov.uk/ccm/navigation/social-care-and-health/social-services/individual-budgets-pilot/

Putting everyone first a practical guide for local authorities to makesure personal budgets meet everyones needsAvailable from [email protected]

Discussion:

6.32 The following were among the contributions made during the

discussion:

6.33 One participant was critical of the personalisation agenda, havingreservations about personal budgets in both social and health care.

6.34 Simon agreed that we must not "sleepwalk" into accepting a set ofpolicy changes if they are proven to disadvantage people with visualimpairment.

6.35 Simon clarified that it is the Government's intention that every English

local authority will be in a position to offer an IB by 2011. There is a "windowof opportunity" over the coming months to influence the local developmentof RAS, and at a national level to ensure that a case is successfully madearguing for a consistent, national resource allocation "formula".

6.36 Simon said that, like the Commission for Social Care Inspection, weshould be calling for national guidelines on how to design a RAS.

6.37 A participant asked whether local authorities would receive more

money from central government to provide IBs if they were able to provethat their local population has greater social care needs. Simon commentedthat local authorities still have to discharge their responsibilities undercommunity care law, whatever changes come about as a result of IBs.Andrew Kaye added that local authorities have a duty to co-operate withPrimary Care Trusts and produce what is called a Joint Strategic NeedsAssessment. This is designed to provide central Government with a clearanalysis of a local community's current and projected care needs.

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http://www.coventry.gov.uk/ccm/navigation/social-care-and-health/social-services/individual-budgets-pilot/http://www.coventry.gov.uk/ccm/navigation/social-care-and-health/social-services/individual-budgets-pilot/mailto:[email protected]://www.coventry.gov.uk/ccm/navigation/social-care-and-health/social-services/individual-budgets-pilot/http://www.coventry.gov.uk/ccm/navigation/social-care-and-health/social-services/individual-budgets-pilot/mailto:[email protected]


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7. Question and answer session with panel of speakers

Panel: Robin Murray-Neill, Cindy Peacock and Simon Shaw.

7.1 The following were among the contributions made during the discussion:

7.2 A participant said that she found it difficult to understand everythingdiscussed during the workshop, so she wondered how service users wouldcome to understand IBs. Local societies and advice agencies should beaware of this issue. There is a danger that the language people use whendescribing IBs could be too technical for service users to understand.

7.3 She was also concerned that the self-assessment process beingintroduced in certain local authorities could prove inaccessible to peoplewith visual impairment. A lot of the questionnaires are paper-based, and if abroker or a personal agent is filling out answers on behalf of a service user,this clearly gives rise to a certain degree of risk.

7.4 There was support for Sense's call for national guidelines on resourceallocation systems.

7.5 A contributor said that self-assessment may be just as costly astraditional forms of assessment, because service users could end up havingto spend a lot of their money paying for independent information and advice.

7.6 There was a discussion about what constitutes "brokerage". RobinMurray-Neill's view was that brokerage services should be considered partof the Putting people first policy to provide universal information andadvice free of charge - but others would question that model of brokerage.There would be some agencies that want to charge a fee for brokerage. He

also recognised that brokerage services perform a wide set of functions.

7.7 Some participants were concerned that many blind and partially sightedpeople, when faced with a questionnaire of the kind Simon described, wouldbe unable to articulate their needs. There is a job to empower blind andpartially sighted people eligible for an IB to articulate their goals and ensuretheir needs are properly met.

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7.8 Robin agreed, saying that there are regional contacts RNIB and otherswould do well to engage with. The DH has placed a new set of RegionalDeputy Directors for Social Care in each Government Office, charged withoverseeing each region's transformation of social care services.

7.9 We should also engage with the new Steering Group the DH has set up,looking at the options for a "national resource allocation formula" - acommon approach to resource allocation across England.

7.10 Cindy Peacock sits on this group, but there is little representation ofblind and partially sighted people's interests. Apparently, the group haslooked at every type of question included in a RAS so far and they aretasked with agreeing a common set of questions that could be asked by allcouncils. They will pilot this new outcomes-based questionnaire soon.

7.11 Patrick Haywood, RNIB's Training & Practice Development Officer,recommended speaking to Sensory Impairment Teams to ensure they areinvolved in the ongoing development of RAS. Suffolk's Sensory Impairmentteam is struggling to get the RAS to be really representative of sensoryneeds. However, rather than endlessly seeking to refine the RAS, Patrickhas suggested they try a purely outcomes-based approach for clients withsensory needs. They felt that they would like to try this more innovativeapproach and were hopeful that they would be allowed to pilot it within

sensory services.

7.12 Another participant questioned the relevance of the personalisationagenda for individuals "already lost" to the social care system. He saidmany older blind and partially sighted adults have already been assessed -they were seen once and given a talking clock - and now they are largelyunknown to adult social services departments. Is there any suggestion thatthese service users will be re-assessed?

7.13 Other participants were sceptical that much had changed at all, arguingthat the social care system "has broken down".

7.14 There was some discussion about identifying local examples of goodpractice, with Oldham's person-centred planning team and Lancashire's"care navigating scheme" cited as two interesting examples. Lancashire'scare navigating team ensures all individuals, regardless of needs andmeans, are able to access universal information and advice.

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7.15 Members of the panel reminded participants that all individuals stillhave to complete a community care assessment before any discussion ofIBs can begin. Some of the participants were unclear at what stage, if at all,a blind individual would get an opportunity to discuss an IB.

7.16 There followed a discussion about "needs" and "wants" and whetherRAS properly addressed service users' "wants".

7.17 A participant raised the question of the impact of charging, expressingher concern that access to support is still means-tested. Robin made it clearthat an assessment of needs should remain separate from a means test,and that charging would only come into effect once an individual has hadboth the needs and the financial assessment. The Fairer charging

guidance applies to the latter.

7.18 Lord Low of Dalston, RNIB's Chair, concluded that RNIB endorses theprinciple of IBs, but needs to be alert to, and where necessary challenge,any shortcomings of the personalisation agenda as it applies to blind andpartially sighted people.

8. Conclusion

Fazilet Hadi, Director of Policy and Advocacy, RNIB.

8.1 Thanking all participants, Fazilet drew some overall conclusions:

8.2 We must closely monitor developments and listen to blind and partiallysighted people about their experiences of IBs.

8.3 We must seek to empower people to better articulate their needs shouldthey get to a position where they can negotiate an IB.

8.4 We need to influence future policy - speaking up both nationally andlocally - to ensure that between 2009 and 2011 blind and partially sightedpeople have an equal opportunity to benefit from whatever developments inresource allocation come about.

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Appendix 1:Glossary of abbreviations

DH Department of Health

IB Individual budget

IBSEN Individual Budgets Evaluation Network

NHS National Health Service

RAS Resource Allocation System(s)

RNIB Royal National Institute of Blind People

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Appendix 2:Follow-up information requested by Trustees and Assembly members

1. Brokerage services

During the discussion on the role and scope of brokerage services, RobinMurray-Neill mentioned an organisation called Paradigm. Paradigmdescribes its mission as "to support services, people and families to ensurethat people get the life they want". They describe their website as "the bestsource for information about person-centred approaches, inclusion, selfdirected support, leadership and organisational development". A number oftheir publications are designed to assist service users with making importantcare decisions. In this sense they act as independent brokers by providingexpert information that builds individuals' confidence. Recent publications

include Supported decision-making book and Person-centred thinkingmini-book.

Paradigm's contact details are as follows:

Paradigm101 Woodside Business ParkBirkenhead

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CH41 1EPTel: 0870 010 4933Website http://www.paradigm-uk.org/index.aspx

2. Policy documents

Robin Murray-Neill mentioned a number of Government publications whichset out its policy on IBs. These include Our health, our care, our say (30January 2006); and Putting people first (10 December 2007) - a concordatcommitting Government, together with agencies representing the localgovernment and social care sectors, to transformation of care services inEngland.

Both documents are available at the DH website (see links below) and alsoin alternative formats.

Our health, our care, our say (ISBN: 0101673728)http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4127453

Putting people firsthttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/Publications

PolicyAndGuidance/DH_081118

To order these publications in alternative formats there are two numbers/addresses you can contact, quoting the ISBN number (where applicable)and the date of the publication.

Contact either:

The Stationery Office Publications Centre

PO Box 29NorwichNR3 1GN

Tel. 0870 600 55 22

Or the DH publications team on the following telephone number:0300 123 1002 (opening hours Mon. - Fri. 8.00am - 6.00pm).

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http://www.paradigm-uk.org/index.aspxhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4127453http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4127453http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_081118http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_081118http://www.paradigm-uk.org/index.aspxhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4127453http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4127453http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_081118http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_081118


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3. National Centre for Independent Living website

The National Centre for Independent Living website, which provides detailsof direct payment support services, can be found at the following link:http://www.ncil.org.uk/directory.asp

4. Articles on legal issues arising from the implementation ofindividual budgets

Simon Shaw said that academic and lawyer Luke Clements had written a

number of articles on the legal issues surrounding IBs.

For the Legal Action Group he has produced a paper titled Individualbudgets and irrational exuberance (September 2008). Please find the linkbelow:http://www.lukeclements.co.uk/downloads/PDF_Sep08_01.pdf

Luke Clements's personal website with publications on community care canbe found at the following link:http://www.lukeclements.co.uk/downloads/PDF_Sep08_01.pdf

5. Article in Community Care magazine

An article by Peter Beresford, titled NHS principles in conflict, concerningpersonal health budgets in the NHS, can be found at the link below:http://www.communitycare.co.uk/blogs/social-care-experts-blog/2009/02/nhs-principles-in-conflict.html

____________________________________________________________

Acknowledgements and further information

First of all, we are grateful to all who attended the workshop and gave usthe benefit of their views and experiences - including, of course, ourspeakers.

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http://www.ncil.org.uk/directory.asphttp://www.lukeclements.co.uk/downloads/PDF_Sep08_01.pdfhttp://www.lukeclements.co.uk/downloads/PDF_Sep08_01.pdfhttp://www.communitycare.co.uk/blogs/social-care-experts-blog/2009/02/nhs-principles-in-conflict.htmlhttp://www.communitycare.co.uk/blogs/social-care-experts-blog/2009/02/nhs-principles-in-conflict.htmlhttp://www.ncil.org.uk/directory.asphttp://www.lukeclements.co.uk/downloads/PDF_Sep08_01.pdfhttp://www.lukeclements.co.uk/downloads/PDF_Sep08_01.pdfhttp://www.communitycare.co.uk/blogs/social-care-experts-blog/2009/02/nhs-principles-in-conflict.htmlhttp://www.communitycare.co.uk/blogs/social-care-experts-blog/2009/02/nhs-principles-in-conflict.html


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Workshop planning and organisation was by Geoff Fimister, Andrew Kayeand Charlotte Morris. The facilitator was Andrew Kaye. Geoff Fimister editedthis report. Note-takers were Charlotte Morris and Andrew Kaye, withadditional audio recording provided by Hugh Huddy. As ever, a number of

staff members at RNIB's Judd Street HQ were indispensable to making theday a success, as was Patrick Haywood of the Birmingham office.

For more information on this event or related issues, please contact:

Geoff FimisterCampaigns Officer (Independent Living)020-7391 [email protected]

or

Andrew KayePolicy Analysis and Planning Officer020-7391 [email protected]

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Documents

Public Workshop Report