a future without the ilf

8/12/2019 A Future Without the ILF

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www.centreforwelfarereform.org

www.campaignforafairsociety. org
http://www.centreforwelfarereform.org/http://www.campaignforafairsociety.org/http://www.campaignforafairsociety.org/http://www.centreforwelfarereform.org/


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Contents

SUMMARY ................................................................... 2

1. INTRODUCTION ........................................................

2. BACKGROUND ........................................................... 4

3. THE SCOTTISH SCENE ................................................. 9

4. NEED FOR SOME BLUE SKY THINKING ........................11

5. ASSET BASED CITIZENSHIP .........................................17

6. CONCLUSION ...........................................................23


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SUMMARY

The Independent Living Fund will close on 30th June 2015. Thiswill occur despite the recent appeal in the High Court in London tohalt the closure of the Independent Living Fund (ILF). Five disabledpeople had argued that the Government had not followed theirduties to assess the impact this would have on the quality andequality of disabled peoples social and civic life under the EqualityAct of 201 0 .

In Scotland there is still an opportunity to protect the provisions ofthe ILF. This paper argues that the Scottish Government should buildon the success of the ILF to create a Trust which works strategicallyto promote the interests of not just those people with the mostsignicant disabilities, but also those with lower levels of disability.

The ILF offers an example of how the welfare state can be reformedto advance Asset Based Citizenship - it shifts resources to individualswhich they can control to enhance their lives and their wider

community participation. It is a model for fairness and reform.

A FUTURE WITHOUT THE ILF

A DISCUSSION PAPER FROM THE CENTRE FOR WELFARE REFORM IN ASSOCIATION WITH

THE CAMPAIGN FOR A FAIR SOCIETY

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1. INTRODUCTION

Five disabled people recently won an appeal in the High Court in Londonto halt the closure of the Independent Living Fund (ILF). Tey arguedthat the Government had not followed their duties to assess the impactthis would have on the quality and equality of disabled peoples social andcivic life under the Equality Act of 2012.

In his judgement Lord Justice McCombe noted that the need to removeor minimise the disadvantages aced by disabled people and the need toencourage their participation in public li e were requirements which were

not optional in times o austerity.

McCombe emphasised it was clearly:

. the Intention of Parliament that these considerations of equality ofopportunity are now to be placed at the centre of formulation of policy byall public authorities, side by side with all other pressing circumstances ofwhatever magnitude.

In conjunction with some blue sky thinking, called or by the ScottishGovernment in their consultation around what should be done when theFund closes, these comments reminded me o the 18th century philosopherTomas Paine. He argued in his book Agrarian Justice that the state shouldpromote citizenship by providing everyone with the basic assets so to do.Such thinking is now being reconsidered in political philosophy under theguise o asset based citizenship whereby citizens are, or example, providedwith a basic income, not just to live (as is said to be provided by the presentwel are system) but to participate in the economic, social and civic li e osociety.




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2. BACKGROUND

But rst, some background: the ILF is an executive body of theDepartment of Work and Pensions (DWP). It operates under themanagement of independent trustees. Since it was created in 1988 ithas helped many thousands of disabled people to move or stay out ofinstitutional care and live independent lives. Trough the provision ofmoney, rather than direct care, the disabled person chooses who, howand when their support should be delivered. Tat support could entailcontracting with an agency, or directly employing a personal assistant.

Te ILF provides a ring- enced budget specically or the independent livingneeds o the most severely disabled people in the UK, enabling them to livein the community, to work, and to play an active part in their community as

ull citizens. It enables disabled people to control the way they use the undsand it currently provides support to some 19,000 people at a total cost o330m.

Te ILF system was set up in recognition o the act that people with highsupport needs are at high risk o social exclusion and ace particular barriersto maintaining independent living and working. In this regard their needs

were not adequately addressed by council provision with its primary ocuson meeting basic needs.o be eligible, people must already receive a substantial care package rom

local authority social services, but ILF unding provides a top-up or thosewith high support needs, which many in receipt o such money report canmean the difference between basic survival and having a real li e. Te systemprovides national consistency and is portable between different areasshould users need to move, in theory ensuring that they are protected rom variations in council care provision based on local unding considerationsand competing priorities. However, the minimum o 340 per week o thecare still has to be negotiated with the new local authority.

In 2010 ILF rustees were orced to close, temporarily, the Fund tonew applicants because the DWP had reduced the amount o undingprovided. Te DWP subsequently announced that it intended to keep theFund permanently closed to new applicants, and on 18 December 2012announced its decision to close the Fund completely in 2015, leavingall those who would previously have been eligible to rely solely on localauthority adult care services. Tis was at a time when the unding orcouncils was being dramatically reduced and many authorities were cuttingservices or disabled people. It was this decision-making process that wasthe subject o the legal challenge.




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Prior to the December 2012 decision the DWP carried out a consultationon the closure proposal. It did not consult on any other options. Teconsultation ran rom July to October 2012. Te consultation paperproposed that ILF unding responsibilities would be devolved to localauthorities afer 2015 so that the people currently receiving ILF supportwould, in uture, be assessed and supported by social work servicesdepartments and only receive unding or care rom them. However, it didnot say how much unding would be devolved or i the unding would bering- enced, to ensure that it was spent on supporting those people whomthe ILF was set up to protect, or even on care provision at all. Te DWPsaid that it could not assess the impact on disabled people until afer theconsultation had ended.

Under the Equality Act 2010 public bodies, including governmentdepartments, must have due regard to certain equality principles whenthey make decisions and develop policies. Tis is the public sector equalityduty and it applies when decisions and policies are likely to affect agroup o people with a protected characteristic. Disability is a protectedcharacteristic. Te public sector equality duty in the Equality Act buildson and develops previous anti-discrimination legislation including theDisability Discrimination Act. Under this duty, public bodies must havedue regard to the need to eliminate discrimination and advance equality oopportunity or disabled people.

Te Equality Act goes on to specify three distinct elements involved inhaving due regard to the need to advance equality of opportunity:

the need to remove or minimize disadvantages suffered by disabled people,

the need to take steps to meet the needs arising from their disabilities, and

the need to encourage disabled people to participate in public life and otheractivities where their participation is disproportionately low

Te Act makes clear that public bodies must give due regard to each o theseactors in all that they do. Te DWP needed to take steps to nd out how the

proposal would affect ILF recipients and other disabled people, in order tobe in a position to give such due regard to the relevant considerations.Consultation can be one part o the process o gathering in ormation butis not necessarily enough on its own. Due to the importance the ILF hasbeen to the lives o so many severely disabled adults, the claimants arguedthat there was a very strong duty on the DWP to nd out ull in ormationabout the likely impact, including asking the right questions and keeping

an open mind. Te DWP also needed to gather in ormation to enable it to




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consider whether the purpose o the proposal justied the likely impact, andto consider whether there were alternatives that could avoid or mitigate theadverse impact.

Te claimants case was that the DWP had acted unlaw ully in ailing togather the right in ormation or the Minister to consider, and also in the waythat the decision was ultimately made in light o the in ormation that wasavailable rom the consultation and other sources.

Te claimants also argued that as part o her task in considering theactors required by the public sector equality duty, the Minister ailed to take

account o provisions within the UN Convention on the Rights o Personswith Disabilities (UNCRPD). Tis was ratied by the UK in June 2009and includes a number o important provisions which must be taken intoaccount in all Government decision-making that has a particular impact ondisabled people.

For example, includes Article 19 which contains the right for disabledpeople:

to live in the community with choices equal to others [and] to choosetheir place of residence on an equal basis with others and not [to be]obliged to live in a particular living arrangement.

In announcing the closure decision in December 2012, the Governmentmade clear that whatever unding may be devolved to local authorities itwould not be ring- enced.1

Te Equalities and Human Rights Commission intervened in the case toadvise the court on how the public sector equality duty should have beendischarged by the DWP. Teir submissions also explained how this shouldhave been in ormed by Article 19 and other provisions o the UNCRPD, inorder or the Government to meet its international obligations under theConvention.

Te matter came be ore the High Court in March 2013 and was consideredby Mr Justice Blake, who upheld the Governments decision, accepting itsarguments that it had carried out a law ul consultation and applied theequality duties properly in making the decision.

Te claimants sought and obtained permission to appeal and the casewas considered at a hearing in October 2013 be ore three Court o Appeal judges, Lords Justice Elias, McCombe and Kitchin. Te court heardargument or one and a hal days and decided that Mr Justice Blake hadbeen wrong to conclude that the Minister had complied with the publicsector equality duty: they held that the decision was there ore unlaw ul,

quashed it and allowed the appeal.




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Te Appeal Court ound that the Minister was not properly brie ed on thenature o the public sector equality duty in relation to disabled people andthere was no evidence that she had applied it consciously, in substance, withrigour and with an open mind as the law requires. It did not accept that theconsultation process was so awed as to be unlaw ul in itsel , but ound theMinister had not read the ull responses and the summary given to her byofficials:-

did not give to her an adequate avour of the responses received indicatingthat independent living might well be put seriously in peril for a large numberof people. (leading judgment o Lord Justice McCombe)

Te Appeal Court emphasised the very specic requirements o the dutythat the Minister had ailed to properly consider: the ocus on the need toadvance equality o opportunity, the need to minimise disadvantage and theneed to encourage independent living and participation in public li e andother activities.

Te judgment made clear that, irrespective o austerity or other pressingcircumstances o whatever magnitude, Parliament intended each o theseconsiderations to be placed at the centre o ormulation o policy by all

public authorities ... an integral part o the mechanisms o government.Other than a recommendation by an official in a brieng note that

the Minister should read the Equality Impact Assessment and ImpactAssessment documents in order to comply with our public sectorequality duty and ensure we do not increase the likelihood o asuccess ul claim, Lord Justice McCombe held that:

...there is nothing to identify a focus upon the precise provisions of the Act thatseemed to the Minister and her officials to be engaged, what precise impactwas envisaged to persons potentially affected and what conclusion was reachedin the light of those matters... this was not enough.

Te Appeal Court also agreed that there was no evidence that the Ministerhad in any way considered the Governments obligations under Article19 and other provisions the UNCRPD as they in ormed the public sectorequality duty.

It remains to be seen whether the Government will seek to revisit theidea o closing the ILF; however it conrmed in the course o proceedingsthat any preparatory steps were at an early stage and could be reversed i

necessary. Any resh decision would require the Government to go back to




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the drawing board, properly assess the impact the decision will have on thelives o ILF recipients with regard to the actors in the equality duty, andconsider whether it is justied or a less damaging alternative is possible

As the judgement stated, the duty does not prevent the Government romtaking difficult decisions like this but it does mean that they have to con rontthe consequences o such a decision and the:

inevitable and considerable adverse effect which the closure of the Fund willhave, particularly on those who will as a consequence lose the ability to liveindependently.

Tis judgment is o major importance or all disabled people and will orce

the Government to think again about how it unds care or severely disabledpeople so they can maintain their independence throughout their lives.However, there is no doubt that the UK coalition government is determinedto ollow its original intention, irrespective o any consultation or equalityduty, to close the ILF and devolve the money to local authorities. No-oneknows or how long such devolved money will go to local authorities andwhether such money will be ring- enced, or lef to local authorities to spendon other things, such as road works, or estivals. Ultimately, it is clear, theUK coalition government wants to let already hard pressed local authoritiespick up the bill.




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3. THE SCOTTISH SCENE

In Scotland, the Scottish Government has just concluded a consultationon what to do with its share of the money, if the Fund were to be devolved.Scottish Ministers and CoSLA leaders have already announced that theyhave set independent living as a priority for co-ordination of action acrossthe public sector, and against which they will be required to report onprogress.

Te Vision for Independent Living in Scotland, co-signed by the Scottish

Government, the disabled peoples Independent Living Movement, CoSLAand NHS Scotland states:

based on the core principles of choice, control, freedom and dignity, disabled people across Scotland will have equality of opportunity at home and work, ineducation and in the social and civic life of the community. 2

Tey have then gone on to dene independent living as:

disabled people of all ages having the same freedom, choice, dignity andcontrol as other citizens at home, at work, and in the community. It does notmean living by yourself or fending for yourself; it means having the rights to practical assistance and support to participate and live an ordinary life.

Te Independent Living Fund is one example o the support that hascontributed to some disabled people being able to live independent lives.It has made a signicant contribution to individuals being able to be activecitizens, equal to all other citizens.

Scottish Disabled Peoples Organisations (DPOs) have called or any new

und to be open to new recipients. Te decision by the UK Governmentto close the ILF to new recipients did create a massive amount o unmetneed; and the complete closure will urther exacerbate inequalities betweendisabled and non-disabled people in the uture. Tese inequalities are nothelped by local authorities only providing support packages with basiccover;3 or by the UK Governments targeting o disabled people in thewel are cuts, creating even urther poverty.4

And as an existing recipient o ILF, I do agree that any new use o existingmoney should not come rom the unding o existing support packages,

by top slicing or reducing existing disabled peoples support packages.




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Tese unded packages should not only be secured, but under-written byguarantees that additional resources will be available or any additionalincreases in costs o meeting the increasing personal need, providers ees,or employers responsibilities o existing clients. Such increases in personalbudgets should come either rom the attrition within the existing budget or

rom other Scottish Government budgets.I do not say this or selsh reasons, but or ethical ones. It has been argued

that society has a duty o benecence and non-malecence, as well as careand justice, especially to those who are not as strong and resilient as others. 5

Despite it happening within several local authorities, today, it is alsomorally wrong to take rom Peter to give to Paul, especially i both arewithin a protected group as designated within equality legislation; and bothare seen as being in need within current community care legislation. It isnot ethically com ortable to think that the state redistributes resources to thedisabled people rom disabled people, when they have a duty to equate theirstatus and opportunities with non-disabled people.

I am truly grate ul to the Scottish Government or accepting thisprincipled stance, rom the onset; but would urge it to resist any pressure

rom any quarter to change rom it.




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4. NEED FOR SOME BLUE

SKY THINKINGHowever, I should like to take this opportunity, as an individual to dosome blue sky thinking on the issue of what to do with the attritionwithin any new independent living budget when it does eventually cometo Scotland, or indeed, if there were any additional monies forthcoming.

I do realise that such thinking may be impossible to realise, given thecurrent political thinking which dominates societys attitude and actions inthe light o austerity Britain. It may also necessitate some kind o enquiryor commission into the present state o neoliberal managerial social work,which places budgets and organisational systems be ore social work ethicsand social justice. My main contention is, however, that such an enquirycould also investigate possible ways social work services could promoteand support a system which values proactive participative citizenship, assuggested by Tomas Paine.

Tere is the obvious disadvantage that such an enquiry may push the issueinto the long-grass. Nevertheless, I strongly believe there would be a more

vibrant and inclusive society i it trans erred its concern rom the cost osocial care to its value, not just to the recipients and their amilies, but tosociety as a whole. In addition, I do hope that I will drop some seeds orthought, which might gestate over a period o time and eventually ower astime goes by. I am personally convinced that the trans er o the ILF budgetto Scotland could accelerate that process.

I do agree with the DPO submission to the Scottish Governmentsconsultation that given the vagaries o what James Madison, 4th President othe USA, termed the tyranny o the majority, the most secure option cited

by the consultation paper is a New Partnership and/or rust (Option 4).Giving the budget to local authorities would not guarantee that it would bespent on community care. And given the caprices o local government, itcould end up lling pot-holes, or paying or some east-day.

Even i it were added to local authority community care provision, it wouldonly provide more uel to the urnace o the neoliberal managerialism opresent day social work, and continue the post code lottery o provision,along with the exclusion o the voice/inuence o the end user, whoconstitutes the minority in local authority elective decision-making, but100% o the recipients o its service provision.




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A new Partnership/ rust would give more security to existing recipients andtick the advantages described within the consultation document. I it alsoworked in co-production with disabled people, it would overcome the issuesdiscussed in the previous paragraph. 6

It would also safe-guard the current aspects of the ILF which areimportant for the future of any funding, namely:

The money remains ring fenced to provide care and support and that thecurrent level of 97p of every 1 spent reaches the end user.

It is delivered on a national eligibility criteria focussed on supporting anddelivering independent living.

It is portable and exible. The national consistency of the application of ILFmoneys means that the provision is not subject to a post code lottery and itoffers portability of support. This is crucial for disabled people to enjoy theirfreedom of movement around the country for their employment prospects,or to be near family, etc, without having to re-negotiate their funding.

It is provided after a co-produced assessment with the end user.

It is provided after a regular review to ensure needs are met appropriately.

It is provided as a Direct Payment. The ILF has shown a pioneering historyand wealth of experience in delivering Direct Payments since the 1980s. Thismethod of support has supported choice, control, freedom and dignity in

the lives of disabled people in a way that more traditional care and supporthave been unable to offer.

It is monitored in a way that supports accountability whilst beingexible and non-intrusive.

I also agree with my DPO colleagues, that the following principles be usedto develop any successor system for the ILF in Scotland:

Overarching principles of independent living, equality and human rights:The principles of independent living, equality and human rights should steer

what happens this includes promoting, protecting and supporting the fullparticipation for all disabled people as equal engaged citizens.

Freedom: users of community care are free to live their life in the way thatthey choose, without barriers to such freedom created by care and supportsystems, which are inexible and operate to their own convenience.

Choice: users of community care can choose how to live their life, what theydo with it and who they involve in it.

Dignity: everyone is entitled to dignity in their own life and others respectthis dignity from the point of accessing support to the delivery of it.




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Control: people can and should control their own lives, including what theydo, with whom, and when they do it.

Participation: disabled people have a right to participate in society anddecisions which affect their human rights.

Accountability: those responsible for the promotion and delivery of respect,protection and fullment of human rights are accountable to those whohold such rights.

Non-discrimination and equality: community care is crucial for the equalityand human rights of disabled people. Without it, many disabled people:cannot live free from discrimination and harassment as the Equality Act2010 promotes; enjoy the human rights to which they are entitled on anequal basis to others as set out in the Human Rights Act and the EuropeanConvention of Human Rights, nor contribute to a wealthier and fairer,smarter and healthier, safer and stronger, Scotland. 7

Empowerment: disabled people know their rights and how to claim them.They are supported to play an equal, engaging part in society and lead anordinary life.

Legality: decision makers must make an explicit link with human rightslegal standards in all processes and outcome measurements.

Stability: disabled people do not live in fear of losing their support orabout the perception of others of the cost of such being not worthwhile.

This includes; decisions and practice around funding levels, assessment,eligibility and review processes; as well as decisions around thecontinuation of buying a consistently high service either as goodemployers or to retain a preferred agency/provider.

Better outcomes for individuals: rules and processes, including assessmentsand eligibility criteria, work to the benet of the individual and their bestinterests. The outcomes for disabled people and other users of communitycare, in terms of better health and wellbeing, should be at the centre ofboth the legislation and the way that it is implemented.

Portability: disabled people and other users of community care haveclear entitlements to it, regardless of where they live. Disabled peopleknow that they can move freely, for whatever reason, across Scotlandand that their support package can come with them.

Nevertheless, I am concerned that a new rust would continue thebi urcation o social care. Te recipients o the new rust will be on onebranch o social care (and a pretty precarious one at that) where they willhave the empowering resources managed within the principles mentionedabove. However, the majority o social care recipients will remain on another




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branch. Tey will continue to be under the control o the present-dayneoliberal managerial policies and practices, including notions o budgetdriven services, single-assessments, markets, competition, productivity,resource allocation systems, etc; all o which limit positive outcomes, and aremerely available to those ew who meet the highly restrictive li e and limbcriteria o the assessment process.

Such limited numbers o disabled recipients o social care provision willalso continue to be conned to dependency, segregation (even within theirown home) and denial o their ull and equal participative citizenship, as theneeds which such a system assess are conned mainly to what are termed asbed and break ast services. Sometimes, such needs are met by undigniedand unseemly provision, such as providing adults with incontinence padsat night. I daresay that some within social work services will claim this isa misrepresentation o social care practice, today, but such has been welldocumented in the literature. 8

On the other hand i the new und meets the criteria which are detailedin the points above, there would be another system o social care whichenables its recipients to ull more ably their amilial, cultural, social, civicand economic li estyles. Tis system could be more directly inclusive o therecipient in its policies, practices and assessments; and sees the recipientas an equal, participating and engaged citizen. And i such a servicewere ounded, I contend it would be a beacon which could inuence the

dismantling o the present day neoliberal managerial system o social care.Tere ore, I would suggest that any new Partnership/ rust be set up ona long-term, but changing, basis; primarily to secure the continuationo support to existing recipients, but also to stimulate change withinmainstream services. Any attrition, along with any additional money(possibly rom the new combined budgets o health and social care) wouldbe used to set up pilot schemes within local authorities to carry out similarpackages o support, based on the same criteria and management systems,and the principles and actions o which have been outlined above. However,they would be directed more pronouncedly at supporting participativecitizenship.

It has been shown that such active participation within society at large,supported by social work services, can reduce higher dependency onhealth and social care later on in li e.9 Tere ore, the expectation is thatthese projects would work like immunisation programmes within health,changing the metabolism not just within the body o the individual, but theculture and systems o the organisation itsel . Unlike health, there is littlemoney spent on preventative exercises within social care.




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Te Scottish NHS, in this scal year, has spent 17m in u immunisationalone. Tis is above that spent on its child immunisation programmes.Politically, it is generally accepted that such preventative measures savegreater harm to the individual and greater expenditure to the healthservice when large scale epidemics arise. I such preventive measures wereapplied to social care budgets, the consequences o unmet need, and theadditional expenditure to meet them, would be less, when they are nallyacknowledged as severe li e and limb cases.

It is generally agreed that there is a widening gap within social care,not only in Scotland, but around Europe, between rising need and allingexpenditure. 10 I alling expenditure continues merely to meet the li e andlimb need o a diminishing number o people, that gap will never narrow.As said previously, health and wellbeing has been ound to be greater amongthose who are empowered to participate in the lives o their communityand within relationships. 11 It has been ound, or example, that overcomingthe isolation o being housebound, leads to improved health and wellbeingoutcomes. Starting up small scale projects to maximise social and civicintercourse would help in such preventative measures.

Adopting this improvement model i.e. starting small pilot projects andbuilding on their learning, will acilitate the closure o this gap.12 Te theoryand practice o the improvement model, is well known to the ScottishGovernment and has been widely used in the organisation o in ection

control within the health service.13

It is also being used with some relativesuccess by local authorities within the roll out o their Change Fund orolder people.

As the Scottish Government has an Independent Living PartnershipBoard, this could be used to oversee and acilitate such a programmeo improvement pilots, acilitating solutions to any initial problems andensuring the pilots meet and sustain their initial objectives; criteria whichthe present Change Fund has not always been able to maintain. As thesepilots grow in number and geographic spread, they should inuencemainstream local attitudes and practices within social care, presentlydominated by neoliberal managerialism.

It should also be noted the Scottish Governments Christie Report on thefuture delivery of public services identied 4 key principles that shouldunderpin future reform: 14

1. Reforms must aim to empower individuals and communities receivingpublic services by involving them in the design and delivery of theservices they use.




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2. Public service providers must be required to work much more closelyin partnership, to integrate service provision and thus improve theoutcomes they achieve.

3. We must prioritise expenditure on public services which prevent

negative outcomes from arising.4. And our whole system of public services - public, third and private

sectors must become more efficient by reducing duplication andsharing services wherever possible.




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5. ASSET BASED

CITIZENSHIPTe pursuit of asset based citizenship and welfare would, I believe meetthese fundamental principles.

As stated above, independent living is a human right or disabled people,under Article 19 o the United Nations Convention o the Rights o Peoplewith Disabilities. Te exercise o rights and responsibilities are part o anengaged citizenship. I social services were designed around promoting

and sustaining such exercise, rather than needs as acknowledged andassessed by gate-keeping pro essionals, there would be much more dynamicparticipation by disabled people within the community, leading to a muchmore progressive, inclusive and engaged society. But what is meant by participative citizenship? Te meaning andpurpose o citizenship has been discussed and debated by philosophersand sociologists, ever since Aristotle and beyond. However, more moderntheories were rst proposed by H Marshall in 1950.

He proposed that:

Citizenship is a status bestowed on those who are full members of acommunity. All who possess the status are equal with respect to the rights andduties with which the status is endowed. 15

According to Marshall, there were three types of rights: civil, political andsocial and the development of citizenship in democracies involved 3phases marked by the establishment of these 3 rights:

1. Civil rights are those necessary for individual freedom liberty of theperson, freedom of speech, thought and faith, the right to own propertyand to conclude valid contracts, and the right to justice.

2. Political rights are the right to participate in the exercise of politicalpower either as a member of a political authority or an elector.

3. Social rights are the whole range from the right to a modicum ofeconomic welfare and security to the right to share to the full in thesocial heritage and to live the life of a civilised being according to thestandards prevailing in the society.




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In 2005, Jenny Morris wrote a paper or the then Disability RightsCommission. 16 In it, she looked at what citizenship meant or disabledpeople. She took three concepts which their movement had been (and stillare) promoting and suggested that there was a very close relationship toMarshalls three concepts o citizenship rights.

Te three concepts which Morris referred to were:

1. Self-determination: this has been an important concept for both theindependent living and self-advocacy movements. Within the widercitizenship debates, there is an assumption that individuals havecapacity for free choice and, particularly within the liberal tradition fullcitizenship involves the exercise of autonomy.

2. Participation: this concept is often used by disabled people whenengaging with the debate on social exclusion. In terms of widercitizenship debates, the concept includes the civic republican conceptof political participation but also encompasses the broader concept ofcommunity participation.

3. Contribution: disabled people have emphasised the value of ourcontribution to economic and social life when we make the casefor both anti-discrimination legislation and the resources requiredfor a reasonable quality of life. Such arguments dovetail with thecommunitarian emphasis on responsibilities and reciprocity, and withdebates on the limits to social rights.

One o the major benets o the present ILF has been the enabling odisabled people to ull the pluralistic aspects o their citizenship. Equalparticipative citizenship is the key objective o disabled peoples independentliving movement.

Te development o the disabled peoples movement and its relationshipto the various models o citizenship has been outlined in several works. 17 However, I just want to mention one that o a stakeholding citizenry or

it would take a specic type o wel are state and social work service; onewhich supported the rights and responsibilities o an engaged citizenship, tounderpin a society o stakeholding citizens. Giving disabled people a directpayment is a concrete example o developing an asset based stakeholdingcitizenry. I such suggested pilot schemes as above were to be basedon such concepts, this would revolutionize social care in Scotland, andovercome a large structural barrier to disabled peoples independent livingopportunities.

As ar back as the 18th century the idea o giving citizens assets (money)to develop their active participation as equal responsible citizens in thegovernment and wellbeing o society has entertained much debate. Te




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idea is to build on the assets each and every individual has by giving themmoney and opportunities; and or them to decide how to use it to assist theircontribution to, or engagement with, society, not just to participate in itslabour market, but its social, cultural and civic environs. Such stakeholdingassets could be used to buy tools or a job, or pay or a course to improvetheir education, or take up some cultural pursuits, etc, etc. Such money, ithas been argued, would be recouped through inheritance tax. 18

wo competing arguments are made in this discussion. First is thelibertarian argument that i people stake-blew, i.e. rizzled the moneyaway, they were ree to do so. Te republican argument is that such assetsshould only be used to promote the engagement o the individual withsociety; and to ensure such engagement took place, there should be a lighthanded monitoring o such assets, or detailed policing o such would beimpossible.19

Tese arguments around the use and misuse o such money have beengoing on ever since Tomas Paine rst suggested asset based citizenshipin 1795; and have also dominated the eld o direct payments, now sel -directed support, since its inception.

Te republican argument is based on a set o principles o democracy, verysimilar to communitarian thinking and that advocated by the independentliving movement in Scotland. 20

Tese are:

The common good

Independence

Inclusion

Deliberative decision-making

Participation and

Economic egalitarianism.

I we are to develop a stakeholding society supported by social services andthe wel are state, then these principles must be intrinsic to their policy andpractice. Te independent living movement has been in the vanguard opromoting similar principles. In particular, the idea o a direct payment topay or support can be seen as an asset provision to enable participationin, and engagement with, society. Te independent living movement alsoencourages inclusion, participation and deliberative decision-making. It hasalso advanced the concept o co-production and published a oolkit orco-production which explains in plain language how disabled people canparticipate in policy and practice decision-making at both local and nationallevel.21




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Asset based wel are to promote engaged citizenship has been discussed inboth America and Europe. 22 Tis should not be con used with work areprogrammes devised in America and presently being replicated within thecurrent Con-Lib wel are re orms, or engagement means more than just

participating in the paid labour market.Within Britain, the idea o giving assets to people to empower their

reciprocal role as citizen has been trialled by the last Labour government inthe development o its Child rust Fund. Each child was to be given 250 atbirth, ollowed by another 250 at age seven. Tis money was to be investedin a rust which would attract interest and growth in the stock-market overtime. Families were also allowed to contribute to their childrens rust whichwould mature at age eighteen. Te libertarian concept o the child being reeto do whatever she wished was assumed although politicians hoped the

accrued money would go towards her urther education.It is true to say that within Britain, asset-based wel are has been discussedmainly around helping the poor to save money. But in America, Scandinaviaand others parts o Europe, asset-based wel are has a wider remit inengaging mainly the poor to be engaged in their citizenship developmentand avours the uptake o education and employment opportunities. 23

It would make sense there ore, i we are to change wel are and socialservices to be an asset creator or an engaged, participating citizenship tostart with policies and practices around independent living.

A direct payment to enable a disabled person not just to get washed anddressed, but to become active in her amily, cultural, economic and civic li e,is truly an asset-based wel are provision. However, it should be rememberedthat, although realised programmes o asset based citizenship mainlystarted within programmes or the poor, the original concept was that itwould be a universal provision. Nevertheless, it is considered that somemay require more assets than other to achieve the same things.

For example, the Economics Nobel Prize Winning Pro essor AmartyaSen, with his PhD student Wiebwe Kuklys, ound that when conversionhandicap (those assets which are needed by disabled people to achievethe same things as non-disabled people) was added to income handicap(that which is the difference in income between disabled and non-disabledpeople) the difference in the poverty gap between the non-disabled poorand the disabled poor rises rom ve to thirty percentage points. Tere ore,as disabled people need more assets (money) to achieve the same as non-disabled it may be sensible, as previously stated, to start asset based wel arewith this group o people.24




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Referring to asset provision and republican democracy, the principles ofwhich are stated above, White states:

Te vision is not of a utopia, of a society which fully realises the values ofliberty, equality and fraternity, which have historically inspired progressive politics. But it is an ambitious vision nevertheless. It pictures an active stateworking to disperse property and increase the accountability of decision-makers throughout society. At the same time, as part of the process ofdispersing power and enhancing accountability, the nature of the state itself istransformed by greater citizen participation in and around policy-making. Weshould not want a state that swallows up society, but nor should we reconcileourselves to the neo-conservative vision of a market society (in which themarket swallows up the society). Te challenge is to put the state and the

market in their place so as to build what we may call a citizen society. 25

But social care is only one area o structural barriers to disabled peoplesindependent living: independent living is not just about personal support.Disabled people have identied 13 areas o living and support to which thepolicies and practices covered by the independent living paradigm can beapplied.

Tese include:

inclusive education and training equal opportunities for employment

full access to our environment

fully accessible public transport

technical aids and equipment

accessible and adapted housing

an income including income from benets

accessible and readily available information

advocacy and working towards self-advocacy counseling, including peer counseling

accessible and inclusive healthcare provision

communication and appropriate support for communication

personal assistance

It can be seen how independent living touches on all aspects o li e andmuch o government policy and expenditure. I the attrition o this new




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budget were to be enhanced with a tiny sum (say 0.01%) rom each othe relevant budget headings, then along with the growing attrition, analternative, i not additional, use o the new budget could be to undprogrammes or projects which tackled the structural barriers within each othe 13 areas covered by the independent living paradigm, as itemised above.Such unded projects would be based on the principles and practices o co-production as detailed within the Scottish Independent Living Movement(comprised o DPOs in Scotland). 26

Once more, the Scottish Governments Independent Living PartnershipBoard, which already works to the principles and practices o co-production,could oversee the implementation o such structural programmes, run onthe Scottish Governments improvement model established in the healthservice and now being applied to children and amilies services.




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6. CONCLUSION

It is true to say when one door closes, another opens. Although it mustbe said that the ve disabled people who won this ground beating legal judgement should be warmly congratulate, the question still remains overthe future of the Independent Living Fund.

Over the last 30 odd years o the Funds existence, it has shown how disabledpeople can ourish as amily members, employees (and employers) withinthe labour market; sports people; as well as actors in leisure and civicpursuits. It would be shame ul (and waste ul) i such asset based provision

o citizenship support were lost to eed the whims o local authorities andtheir gluttonous approach to neoliberal managerialism within social care.It is true that the Fund, and its continuation, do allow or a bi urcated

social care system. But i it, or its successor, could be used as a beacon oruture mainstream services by building on its principles and practices to

support equal proactive citizenship, then not only will disabled peopleprosper, but society at large; making Scotland a more healthier, wealthierand inclusive country.




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ENDNOTES

1 In the UK Governments published response to the consultation it was stated that in theirresponse to the consultation, most local authorities said they would be strongly opposedto a ring fence around this funding but this was completely untrue. Not one of thelocal authority responses obtained by the Claimants under the Freedom of InformationAct expressed opposition to ring fencing; 33 out of 80 were in favour of ring-fencing orsuggested it should be considered and several authorities expressing qualied supportindicated that their position depended on whether the funding would be ring fenced. Therest made no comment about ring fencing.

2 Our Shared Vision for Independent Living in Scotland co-signed by the Scottish Government,the Independent Living Movement, CoSLA and NHS Scotland, 5 March 2013.

3 http://www.scope.org.uk/news/other-care-crisis and http://www.inclusionscotland.org/documents/FiveAsks.doc

4 http://www.inclusionscotland.org/news/story.asp?id=4181

5 Darwall, S (ed.) (2003) Deontology . London, Blackwell Publishing.

6 http://www.ilis.co.uk/get-active/publications/co-production-toolkit

7 ILiS (2011) ILiS Response to the JCHR Inquiry into the Implementation of Article 19 of theUNCRPD. Glasgow, ILiS.

8 See, Harlow, E, Berg E, Barry J and Chandler, J (2013) Neoliberalism, managerialism andthe reconguration of social work in Sweden and the UK . Organisation , Vol. 2, No. 4, pp

534-550; Ferguson, I and Woodward, R (2009) Radical social work in practice: making adifference . Bristol, Policy Press; Regowski, S (2013) Critical social work with children and

families: theory, context and practice . Bristol, Policy Press.

9 See, for example, Curry, N (2006) Preventative Social care: Is it cost-effective . London, KingsFund.

10 Tarricone, R and Tsouros, A D (2008) (ed) Home care in Europe: the solid facts . Denmark,WHO.

11 Wallerstein, N (1992) Powerlessness, Empowerment, and Health: Implications for HealthPromotion Programs . American Journal of Health Promotion , Vol. 6, No. 3, pp. 197-205.

12 Langley, G J, Moen, R, Nolan, K M, Nolan, T W, Norman, C L and Provost, L P (2009) TheImprovement Guide: a practical approach to improving organisational performance . SanFrancisco, Jossey Bass.

13 http://www.scottishpatientsafetyprogramme.scot.nhs.uk/docs/homepage/data/pages/patientsafetytools/usingmodel.html

14 http://www.scotland.gov.uk/About/Review/publicservicescommission

15 Marshall, T.H. (1950) Citizenship and Social Class . Cambridge, Cambridge University Press.

16 Morris, J (2006) Citizenship and disabled people: a scoping paper prepared for the DisabilityRights Commission . http://disability-studies.leeds.ac.uk/les/library/morris-Citizenship-

and-disabled-people.pdf




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http://www.scope.org.uk/news/other-care-crisishttp://www.scope.org.uk/news/other-care-crisishttp://www.inclusionscotland.org/documents/FiveAsks.dochttp://www.inclusionscotland.org/documents/FiveAsks.dochttp://www.inclusionscotland.org/news/story.asp?id=4181http://www.inclusionscotland.org/news/story.asp?id=4181http://%20http//www.ilis.co.uk/get-active/publications/co-production-toolkithttp://%20http//www.ilis.co.uk/get-active/publications/co-production-toolkithttp://www.scottishpatientsafetyprogramme.scot.nhs.uk/docs/homepage/data/pages/patientsafetytools/ushttp://www.scottishpatientsafetyprogramme.scot.nhs.uk/docs/homepage/data/pages/patientsafetytools/ushttp://www.scotland.gov.uk/About/Review/publicservicescommissionhttp://disability-studies.leeds.ac.uk/files/library/morris-Citizenship-and-disabled-people.pdfhttp://disability-studies.leeds.ac.uk/files/library/morris-Citizenship-and-disabled-people.pdfhttp://disability-studies.leeds.ac.uk/files/library/morris-Citizenship-and-disabled-people.pdfhttp://disability-studies.leeds.ac.uk/files/library/morris-Citizenship-and-disabled-people.pdfhttp://www.scotland.gov.uk/About/Review/publicservicescommissionhttp://www.scottishpatientsafetyprogramme.scot.nhs.uk/docs/homepage/data/pages/patientsafetytools/ushttp://www.scottishpatientsafetyprogramme.scot.nhs.uk/docs/homepage/data/pages/patientsafetytools/ushttp://%20http//www.ilis.co.uk/get-active/publications/co-production-toolkithttp://www.inclusionscotland.org/news/story.asp?id=4181http://www.inclusionscotland.org/documents/FiveAsks.dochttp://www.inclusionscotland.org/documents/FiveAsks.dochttp://www.scope.org.uk/news/other-care-crisis


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17 See, for example, Beckett, A E (2012) Citizenship and vulnerability: disability and issues of social and political engagement . Basingstoke, Palgrave McMillan.

18 Prabhakar, R (2008) Assets and citizenship in White, S and Leighton, D (eds) (2008) Buildinga citizen society: the emerging politics of republican democracy . London, Lawrence and

Wishart. 19 White, S (2008) The emerging politics of republican democracy in White, S and Leighton,

D (eds) (2008) Building a citizen society: the emerging politics of republican democracy .London, Lawrence and Wishart.

20 Elder-Woodward, J (2013) Independent living: the frontier to communitarian welfare .Disability and Society , Vol 28, Issue 2.


22 Sherraden, M (1991) Assets and the poor; a new American welfare policy . M E Sharpe Inc.;Le Grand, Julian (2013) Subsidiarity and individual responsibility: quasi-markets and asset-

based welfare in Brugnoli, A and Colombo, A (eds.) Government, governance and welfarereform: structural changes and subsidiarity in Italy and Britain . Cheltenham, Edward Elgar.

23 Emerson, C and Wakeeld M (2001) The Saving Gateway and Child Trust Fund: is asset-basedwelfare, well fair . London, The Institute of Fiscal Studies.

24 Kuklys, W (2005) Amartya Sens capability approach; theoretical insights and empiricalapplications . Berlin, Springer.

25 White, S and Leighton, D (eds) (2008) Building a citizen society: the emerging politics ofrepublican democracy . London, Lawrence and Wishart.





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ABOUT THE AUTHOR

Jim Elder-Woodward OBE was born with cerebral palsy and has had life-long experience ofdisability, not only as a health and social service user, but also as a service provider, plannerand researcher.

After taking a degree in psychology, Jim studied health and social welfare in Sweden, Germany,Israel and Albania. In the UK he has worked for central government, local authorities, thehealth service, the voluntary sector and universities. He retired from Glasgow City Council in1999, where he was a Senior Social Work Officer (Physical Disability). He is now:

Independent Chair of the Scottish Independent Living Coalition

Independent Chair of the Executive Advisory Committee of the Independent Living Project

Co-Chair of the Scottish Governments Independent Living Partnership Board

Convenor of the Glasgow Centre for Inclusive Living

Strategic Board member of the Institute for Research and Innovation in Social Services

Board Trustee of Capability Scotland

Member of the Scottish Committee of the Campaign for a Fair Society

Fellow of the Centre for Welfare Reform

Jim has written a number of articles and papers on disability and independent living, includingco-authoring a book for social care workers on the subject.

Jim controls his own 24 hour, seven day per week, personal support system. He lives close toLoch Lomond, Scotland, with his dalmatian dog, Polly.




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PUBLISHINGINFORMATION

A Future Without the ILF Jim Elder-Woodward 2014.

Designed by Henry IlesAll rights reserved.First published March 2014ISBN download: 978-1-907790-38-632 pp.

No part of this paper may be reproduced in any form without permission from the publisher,except for the quotation of brief passages in reviews.A Future Without the ILF is published by The Centre for Welfare Reform.

The publication is free to download from:www.centreforwelfarereform.org




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CAMPAIGNFOR A FAIR SOCIETY

The Campaign for a Fair Society is a diverse UK-wide alliance of organisations and individualscampaigning for a society that values, includes and supports all of its citizens. It is independentof all political parties. It represents the interests of disabled people and everyone who isdisadvantaged by the laws, policies and systems in the UK.

The Campaign for a Fair Society is a federation with equal representation from England,Scotland and Northern Ireland.

For more information visit: www.campaignforafairsociety.org




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THE CENTRE FOR WELFARE REFORM

The Centre for Welfare Reform is an independent research and development network. Its aim isto transform the current welfare state so that it supports citizenship, family and community. Itworks by developing and sharing social innovations and inuencing government and society toachieve necessary reforms. To nd out more go to www.centreforwelfarereform.org

We produce a monthly email newsletter, if you would like to subscribe to the list please visit:bit.ly/CfWR-subscribe

You might like to follow us on twitter: @CforWR

Or nd us on Facebook here: centreforwelfarereform




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Published by Te Centre or Wel are Re ormwww.centre orwel arere orm.org

design: henry iles & associates / [email protected]

a future without the ilf

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