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Invited reviewjir_1461 933..944

Challenges of residential and community care:‘the times they are a-changin’

R. Jackson

Karl Koenig Institute, Aberdeen, UK

AbstractThis paper seeks to examine a number of issueswhich relate to the provision of appropriate andhigh-quality residential and community care forpeople with an intellectual disability. A number ofkey themes emerging from this Special Issue of theJournal of Intellectual Disability Research are identi-fied and explored: (1) normalisation; (2) inclusion;(3) choice; and (4) regulation. It is concluded thatthe research community has an obligation toassume a higher profile at a time when the qualityof life of people with an intellectual disability andtheir families is under threat. This can be done in anumber of ways through: (1) the establishment ofdemonstration projects, either independently or inassociation with the voluntary and statutory sector,

to explore innovative and practical approaches ofenhancing the quality of services offered to peoplewith an intellectual disability; (2) looking at ways ofimproving the quality of training programmes forcare staff by moving away from current approachesthat emphasise narrow instrumental competenciesto strategies that develop essential expressive andrelational aspects of care practice; and (3) offering amore considered and rigorous critique of currentprofessional practice and assuming a leadership roleat a time when leadership in this field is lacking.

Keywords choice, inclusion, intellectual disability,marketisation, normalisation, regulation

Introduction

‘The times they are a-changin!’, this title of one ofBob Dylan’s best-known songs is singularly appositeat this point in time. As I write this paper, one ofthe largest private companies providing health carefor the elderly and people with intellectual disability(ID) in the UK is on the point of financial collapseand at the same time an undercover investigationundertaken by the BBC Panorama programme hasrevealed appalling incidents of abuse in a home runby one of the other leading companies providing

Correspondence: Dr Robin Jackson, 4 Deeview Gardens,Drumoak, Banchory, Aberdeenshire, Scotland AB31 5AF, UK(e-mail: [email protected]).Robin Jackson PhD is an Honorary Fellow, Karl Koenig Institute,Aberdeen. He has written extensively on the themes of intellectualdisability and special education: Advocacy and Learning Disability(2002), Holistic Special Education (2006), Discovering Camphill: NewPerspectives, Research and Developments (2011). He was invited bythe editors to provide a final article for the two Guest Issues onResidential and Community Support by commenting and evaluat-ing the current situation in this field of endeavour. The article hasreceived an internal review and the comments are those of theauthor alone.

Journal of Intellectual Disability Research doi: 10.1111/j.1365-2788.2011.01461.x

volume 55 part 9 pp 933–944 september 2011933

© 2011 The Author. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd

residential care for people with ID. To compoundmatters it later emerged that the national regulatorybody – the Care Quality Commission – had ceasedinspecting all privately run units for people with IDfor a period of 4 months (October 2010 to January2011), notwithstanding the fact that a year earlier ithad published a report highlighting poor practice inspecialist health services for people with ID! Thesetwo damaging developments are perhaps not quiteso surprising when one notes the strongly voicedconcerns about the ability, capacity and willingnessof the newly created social care regulator – the CareQuality Commission – to monitor effectively devel-opments in the health and social care sector(Samuel 2010).

My reason for making reference to these twodevelopments in the UK is to underline the pointthat the current economic recession in Europe andNorth America – the full impact of which has yet tobe felt – is going to present a real challenge as faras providing high-quality care for children, youngpeople and adults with ID. The great merit of thisSpecial Issue of the Journal of Intellectual DisabilityResearch is that it provides an opportunity toexamine a number of important issues which relateto the provision of appropriate and high-qualityresidential and community care for people with ID.No attempt has been made to comment upon thecontent of all the papers in this Special Issue;instead, a number of key themes have been identi-fied and explored: (1) normalisation; (2) inclusion;(3) choice; and (4) regulation.

Normalisation

A brief examination of the relevant literature showsthat confusion still exists over the meaning of theprinciple of normalisation as defined by Wolfens-berger (1980). Wolfensberger’s advocacy of the term‘social role valorisation’ in preference to ‘normalisa-tion’ revealed the degree of his disenchantment withthe continuing misunderstanding and misapplica-tion of the principle. He saw the goal of ‘social rolevalorisation’ as the enhancement of the social roleof individuals or groups at risk of social devalua-tion. He believed that such a goal could only beachieved through an improvement in people’s socialimage and social competence. Central to Wolfens-

berger’s argument was the belief that significantadvances in the quality of life of people with an IDcan only result from a shift in the value orientationsof professional workers and the general public. Inshort, there had to be an ideological readjustment.The essential point here is that the principle ofnormalisation represents an ideology: a system ofshared values, attitudes and beliefs which shouldhelp guide not dictate thought and action. Thisnecessitates a sensitive and pragmatic approach notan inflexible and dogmatic one.

However, the particular problem with ideologiesis that they can create ideologues who becomewedded to what they perceive as the fundamentalpurity of a given ideology. But as Zigler & Balla(1977) have consistently argued normalisation is anideology lacking the practical means for its imple-mentation. They have repeatedly pointed out thatthe social policy of moving people with an ID fromlarge institutions to small residential communitysettings, which started in the early 1960s, evolvedalmost completely without an empirical base. Theywarned then that: ‘the almost total lack of data onwhat constitutes the most adequate care setting forretarded individuals is potentially disastrous forthose involved in the creation of social policy’. Adecade later the same authors were to repeat thispoint (Zigler et al. 1986). Empirical examination,they argued, should replace polemics about therelative virtue of community-based facilities versuslarge-scale institutions. Zigler & Hall (1986) suc-cinctly sum up the position:

Unfortunately, many of the forces at work . . . de-pict the issues surrounding normalization as win-lose, either-or choices, driving out the moderatemiddle ground position. Those who polarize thesituation by promoting either normalization orinstitutionalization to the complete exclusion ofthe others do the situation and its complexity agrave disservice. (Zigler & Hall 1986, p. 1)

What concerns Rapley & Baldwin (1995) is theway in which the ‘theories’ of normalisation, socialrole valorisation and inclusion are promoted. Para-doxically, instead of being genuinely enabling,empowering and liberalising, ideology is beingdeployed to support policies which place a low tol-erance on diversity, however that may be expressed,and which offer only rhetorical and not real oppor-

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R. Jackson • Challenges of residential and community care


tunities for genuine choice. As Jackson (1996a) hasindicated, promoting the normalisation principle inthe crusading terms of the ideologue is counterpro-ductive for it can: (1) foster professional intoler-ance, division and disaffection (Hansen 1976); (2)lead to the application of powerful pressures onprofessional staff to conform (Boucherat 1987); (3)devalue the worth and work of those who, for validreasons, find grounds for criticism (Mesibov 1990);(4) promote the growth of a propaganda industrywhich places a low value on objectivity and truth(Jackson 1989); (5) prompt the use of strategies andtechniques which indoctrinate rather than teach(Renshaw 1986); (6) encourage a poorly trainedworkforce to believe that the application of a simpleformula will resolve the complex problem of deliv-ering an effective and humane service (Tadd 1992);and (7) result in the creation of an inflexible servicethat is unresponsive and insensitive to the client’sneeds (Rhoades & Browning 1977).

Inclusive exclusion

One of the most thought-provoking papers in thisSpecial Issue is the one by Bertoli et al. (2011), inwhich the experience of a cohort of individuals withDown syndrome, aged between 30 and 35, is exam-ined. The cohort was drawn from possibly one ofthe first groups to have been raised in a fully inte-grated school system, where they attended main-stream schools and participated in a wide range ofcommunity and social activities (e.g. gym clubs,playgrounds, concerts). However, after secondaryschool, it was found that this cohort faced a suddenabandonment as there were few support services foradult people with Down syndrome and their fami-lies in Rome. Much of their free time involved littleactivity – a fact that the paper’s authors acknowl-edge could adversely affect mental functioning aswell as their overall sense of well-being. Participa-tion of individuals with Down syndrome in employ-ment, including sheltered work, was limited. Evenallowing for the number of people employed in edu-cational activities (e.g. day centres), it was evidentthat two-thirds of adults with Down syndrome had‘full days of empty time’.

The authors indicated that the lack of employ-ment opportunities was likely to contribute to aloss of acquired skills. What was needed was a

policy of work inclusion for all, on a daily basis.While the authors noted that some people withDown syndrome could enter the open market, themajority of the adults urgently required opportuni-ties for daily employment in day centres or shel-tered workshops. It was believed that suchinclusion would contribute to improved socialinteraction, increased autonomy, better healthchecks and relief for families whose quality of lifewould be considerably enhanced.

The authors observed that the media tended tofocus on people with Down syndrome who werecoping remarkably well. While in one respect thiscould be seen as encouraging, it also contributed tothe marginalisation of the majority of people livingwith Down syndrome who faced enormous chal-lenges. What was needed was a change in publicopinion and popular culture to make all citizensvisible, including those with Down syndrome.Support services had to be adapted to the changingneeds of people with Down syndrome whichrequired staff to be properly trained (Jokinen &Brown 2011). The concluding observation of theauthors is worth highlighting. They make the pointthat it is increasingly evident that an inclusiveschool system alone does not in itself guarantee asatisfactory quality of life for people with Downsyndrome in adulthood. What is needed is a com-prehensive policy of inclusion and support whichshould extend over the entire lifetime of peoplewith Down syndrome.

However, some caution needs to be exercisedbefore accepting the implicit assumption in Bertoliet al.’s (2011) paper that the inclusion policy withinthe Italian state school system is working. Researchundertaken by Reversi et al. (2007) has indicatedthat students with special needs continue to showa higher sense of loneliness compared to theirpeers without special needs. Given that a sense ofloneliness arises from a feeling that one has fewor no friends, it raises questions as to the actualdegree of acceptance and inclusion experienced bychildren with special needs. Sidoli (2008) has alsodrawn attention to the critical importance of pro-fessional development to enable special educationand class teachers to implement the inclusivepolicy in Italian schools. She notes that classteachers do not always find it easy to work withthe special education teacher as the assumption is




made that it is the function of the special educa-tion teacher to work on her own with the childwith a disability whether in or outside the class-room. Ianes (2006) has acknowledged that toomuch is still asked of the special education teacherwhose work, if performed in isolation, is often inef-fective as many of them lack a specific training andare managed inadequately by school and localauthorities. Additional Italian research indicatesthat only a small group of disabled pupils experi-ence full inclusion according to their parents (51%in vocational training, 46% in kindergarten, 30% inprimary school, 25% in secondary junior and 44%in secondary high school) (D’Alonzo & Ianes2007). Research evidence therefore suggests weshould be somewhat cautious before accepting theview that the Italian school system presents amodel of inclusive practice.

The question arises as to why the Italian govern-ment introduced the policy of inclusion. Was therean expectation that it would contribute to the cre-ation of a more inclusive society or was it simplybecause it offered a cheaper option? There is nocompelling evidence that in the 40 years since theintroduction of this policy in 1971, the message ofinclusion has gone beyond the schoolroom. Thefindings from Bertoli et al.’s (2011) research revealno evidence of the existence of an inclusive societywilling to accept people with Down syndrome.

Lindsay (2007) in a recent review of the litera-ture has concluded that the available evidence‘does not provide a clear endorsement for thepositive effects of inclusion’ in education. Theassumption that mainstreaming is best for allchildren (those with an ID and those without) hasbeen accompanied in Lindsay’s view by the loss ofthe ability to study the cause and nature of nega-tive attitudes to disability with a view to combat-ing discrimination at source. Instead, there hasbeen an assumption that inclusion of young peoplewith an ID in mainstream schools will cure societyof prejudiced and discriminatory attitudes. TheItalian inclusive model would not appear to offerany proof for that assumption.

Cummins & Lau (2003) have drawn attention tothe attitude of teachers to the inclusion of pupilswith special needs in their classroom.They observethat few teachers have a choice on the matter andmay resent the children’s inclusion for a variety of

reasons.These may include feelings of personal andprofessional inadequacy to manage a mixed abilityclass, concerns about time distribution between classmembers, or even philosophical opposition to inclu-sive education. And as Jordan & Stanovich (2001)have shown, teacher attitudes to children withspecial needs can impact on the children’self-respect.

Recent research by the Foundation for Peoplewith Learning Disabilities, which sought theopinions of students with special needs includedin mainstream settings, highlighted a number ofconcerns – the most important of which was aplea by students to be allocated designated safeplaces in their schools and colleges where theycould escape the social rejection, intimidation, andbullying experienced when not attending classes(Foundation for People with Learning Disabilities2008). MacIntyre (2008) has also drawn attentionto the predicament of young people with ID whoare being marginalised socially and excluded inmainstream schools and colleges. These twostudies demonstrate that it is important to avoidconveying a unidimensional representation of theinclusion process and move beyond ideologicaland bureaucratic inspired definitions of socialinclusion to one that is meaningful and relevantto students with special needs.

It is worth noting that the Department of Educa-tion in England has recently published a consultativedocument (Green Paper) on special educationalneeds, which recommends the abandonment of thelong held presumption of a mainstream placementfor children with special educational needs(Department of Education 2011).The intention ofthe Department is:

. . . to give parents a real choice of school, eithera mainstream or special school. We will removethe bias towards inclusion and propose tostrengthen parental choice by improving therange and diversity of schools from which parentscan choose, making sure they are aware of theoptions available to them and by changing statu-tory guidance for local authorities. Parents ofchildren with statements of special educationalneeds will be able to express a preference for anystate-funded school – including special schools. . . (Department of Education 2011, p. 2)




Exclusive inclusion

In their paper Brown et al. (2011) argue that whilethe application of the policy of inclusion may havebrought some positive changes in the developmentand performance of persons with ID, they acknowl-edge that there is an increasing number of childrenwithin service systems who have multiple diagnosesand severe physical, medical and/or behaviouralneeds that are not being met. Many of these chil-dren are rejected by both mainstream and dayspecial schools because they are regarded asunmanageable and within the family setting theypresent challenging behaviour. For some of thesechildren the most appropriate placement is a resi-dential special school. However, the common expe-rience of many parents in this situation is that thefunding authority refuses placement in such aschool on the grounds that it runs counter to thelocal authority’s policy of inclusion.

The argument that such a placement is sociallyand educationally undesirable merits closer exami-nation. What it ignores is the fact that there arefamilies which are forced to withdraw into a state ofself-imposed isolation, through fear that their childwith an ID will be bullied and tormented by otherchildren or verbally abused by neighbours. Suchparents recognise this kind of isolation for what itis – enforced ‘imprisonment’ for both their childand themselves. There is a sense in which this formof ‘imprisonment’ is harsher than that experiencedby inmates of penal institutions. At least, most pris-oners have visitors, opportunities for parole and anexpectation of eventual release. Living with a childwith complex needs can seem to some parents likean indefinite sentence with no possibility of remis-sion (Jackson 1996b).

It is not unusual for parents of such children tofind that as their child grows up, visits by friends,relatives and neighbours decline. This stigma byassociation leads many parents to be excluded fromthe outside world. Partly by choice and partly bycircumstance, they are obliged to live a segregatedlife. A family has to be extraordinarily resilient andresourceful to withstand the pressure generated bythis exclusion. While some families find that thepresence of a child with complex needs can act as apositive and integrative force, many do not, with theresult that one finds high incidences of marital dis-

harmony and conflict, psychological breakdown of aparent (usually the mother) and acute difficulties inthe management of the other children. Such fami-lies are asked to cope with degrees of stress aboutwhich most people can have little understanding,but they are families nevertheless that almost invari-ably have a love for their child. Indeed, this love,coupled with their inability to cope and the frustra-tion that flows from that inability, engenders feel-ings of guilt that are difficult to assuage (Jackson1996b).

The argument commonly advanced by fundingauthorities is that these problems should be tackledin the home, but such a strategy can come at aheavy economic cost. Where there is a family break-down or problems with siblings through truancy,delinquency or disruptive behaviour, there may bea need for costly intervention by a social worker,educational welfare officer, probation officer oreducational psychologist. At a time when there isincreasing attention paid to finding ways to supportthe family as a unit, funding authorities choose toignore an option that provides just that support.Adherence to the policy of inclusion should notrequire a funding authority to insist that parents ofa child with complex needs and/or challengingbehaviour should retain their child at home what-ever the human cost.

Physical presence, whether in school or neigh-bourhood, is only meaningful if it involves socialinteraction and acceptance (Wolfensberger 1972).Dogmatic insistence on inclusion can lead to socialisolation, rejection and exclusion – the very oppo-site of what the policy of inclusion seeks to achieve.Those supporting the inclusion agenda too readilydismiss residential special school provision on thegrounds that it is ethically unacceptable and ananachronistic irrelevance (Abbott et al. 2001; Morris2002). However, this stance ignores the fact thatsome parts of the residential school sector arehighly innovative and forward-looking (Smith 2005;Jackson 2006, 2011a,b; Garfat 2011) and are able tooffer parents a choice to which they are entitled(Department of Education 2011).

Choice

One of the key issues discussed by a number ofcontributors to this Special Issue relates to the




matter of client’s choice. In their paper Stancliffeet al. (2011) make the point that it should not bepresumed that independent choice is always themost desirable outcome. The argument is advancedthat while having no choice is almost always unde-sirable, the degree of support provided when aperson makes a choice should be guided by indi-vidual needs and preferences. Thus, a well-supported choice leading to selection of a wisealternative may be preferable to a more indepen-dent but ill-informed choice that results in prob-lems. The question then arises as to who decidesthat a choice is a wise one and who judges that achoice is ‘ill-informed’. Such a rationale could easilybe advanced by a social worker seeking to imple-ment a particular policy directive (e.g. placement ina single tenancy), which is at odds with the rea-soned and reasonable wishes of a person with anID. Any other choice could be construed by thesocial worker as unwise or ill-informed.

Cocks & Boaden (2011) argue that at least oneperson with a clear vision or strong idea is neededto shape the picture of a desirable living arrange-ment and lifestyle for the person. Such leadershipmay come from professionals or family membersadvocating on behalf of the person with a disability.It may also come from the person with a disability.What is not clear here is whether Cocks & Boadenare arguing that in most instances the choice ofliving arrangement should rest with others. It is dif-ficult to reconcile this approach with the personali-sation agenda where primacy is accorded to theindividual in key decision making. However, asChou (2011) notes in her study, the choice as to‘where to live’ and ‘who to live with’ was rarelymade by the residents as the residents’ life was stillgoverned by the staff’s expectations.

In their paper Shaw et al. (2011) contend thatpeople with ID should have the opportunity tochoose where and with whom they live and not beobliged to live in a particular living arrangement.They should have access to a range of in-home,residential and other community support services,including personal assistance to supported livingand inclusion in the community to prevent isolationor segregation from the community. By acknowl-edging the existence of a range of residentialoptions, Shaw et al. (2011) present a challenge tothe notion that the only alternative to independent

living arrangements is ‘congregate care’ – the undif-ferentiated residential option usually cited.

It is also worth noting that participants in thestudy undertaken by Shaw et al. (2011) preferredmodels of housing that provided the opportunity forpeople with ID to live in larger groups than the tra-ditional three to four people that are catered for indispersed community housing. They also expresseda strong preference for residences to be in closeproximity to other residences that housed theirpeers. Shaw et al. (2011) refer to evidence whichsuggests that small living arrangements in the com-munity may be associated with disadvantages forresidents. They also point to research that showsthat social activities with non-disabled peers orfriends were very infrequent and even non-existentfor many people, in spite of living in the commu-nity. The assumption that any form of inclusion hasa positive influence on the quality of life of peoplewith ID is challenged as misleading, because suc-cessful inclusion is hard to achieve and that unsuc-cessful integration can be more stressful thanbeneficial (Cummins & Lau 2003; Fisher et al.2008).

However, problems with community inclusionhave not stopped the drive to provide single tenan-cies for people with ID in the UK even when arange of housing options are available. Despitehaving their own tenancy in the community, manytenants find themselves more socially isolated thanthey had been when they lived with their family orlived in an institutional setting, because they havelittle regular contact with anyone other than theirpaid carer. The opportunity for choosing friendsand developing preferred social relationships is verylimited.

The case for providing single tenancies cannotbe judged without reference to the social and geo-graphical context within which the tenancies areset. Whether or not people with ID can cope withthe demands of living independently in a singletenancy will depend in large measure on local com-munity acceptance and freedom from victimisation.In a recent survey by Turning Point, a leadinghealth and social care provider in the UK, it wasfound that more than half of those surveyedbelieved that people with ID were the most dis-criminated against group in society (Williams2010a,b). Growing public concern at the vulnerabil-




ity of people with a disability, in particular theirgreater risk of experiencing violence or hostilitythan the wider population, led the Equality andHuman Rights Commission recently to examine theissue (Sale & Mickel 2009; Walker 2009; Williams2010a,b). The findings were subsequently publishedin the report Promoting the Safety and Security ofDisabled People (Equality and Human Rights Com-mission 2009). The Commission recommended,among other things, investment in and evaluation ofinnovative approaches to independent advocacy toensure that the most marginalised people with adisability have a voice and the confidence to chal-lenge negative behaviours and to seek protectionand redress.

This recommendation ignores the fact thatalmost all advocacy programmes in the UK arefunded by health and social services and, thereforeby definition, are not independent (Gray & Jackson2002). The Commission also recommended thatpolicies relating to care and support should bereformed and that the role of social housing asso-ciations in creating and minimising the risks ofpeople with a disability be examined. However,what the Commission could not do was challengethe normalisation agenda upon which programmesof community inclusion, including single tenancyprovision, are based. As Zigler & Hall (1986) haveobserved, judicial bodies – and presumably thatincludes quasi-judicial bodies like the Equality andHuman Rights Commission – are not going toweaken in any way their commitment to the prin-ciple of normalisation which includes the right ofpeople with an ID to be integrated into mainstreamsociety.

In the paper by Martinez-Leal et al. (2011), atten-tion is drawn to the research of Kozma et al.(2009), who found that the prevalence of health riskfactors such as inactivity and obesity among peoplewith ID was high and that less restrictive livingarrangements increased the probability of smoking,poor diet and obesity. This finding would tend tosuggest that people with ID living in single tenan-cies where contact with carers was intermittentwere particularly at risk. Martinez-Leal et al. (2011)conclude that people with ID are in need of tailoredprimary health programmes that guarantee theiraccess to quality health, health promotion and pre-ventative health actions such as vaccination pro-

grammes, systematic health checks, specificscreenings and nutritional controls.

The paper by Dijker et al. (2011) is of interest asit presents a challenge to the view that establishinghomes in the community can be construed as apractical expression of the policy of communityinclusion in action. In this study it was found thatthe individuals with and without ID that were inter-viewed did not seem to hold the same assumptionsand expectations about what it meant to engage inneighbouring. In particular, while the former mightattach great importance to a warm and safe envi-ronment with only a few friends or volunteersnearby, the latter distinguished between friends andneighbours and expected most neighbours to becompetent in balancing benevolence and distance.The question thus arises whether, under these cir-cumstances, one can expect people with ID toengage in normal neighbouring at all, and to whatextent they benefit from being forced to do so.Dijker et al. (2011) acknowledge the fact that manyresidents in homes in the community are not therebecause they have chosen to be there – for theyhave not been offered a choice. So paradoxically,this exemplar of good community inclusion practiceis often based on the denial of an individual’s rightto choose.

Wolfensberger (2003), who has been closely iden-tified with the normalisation principle, has acknowl-edged that the community living revolution thatstarted in the late 1960s opened up innumerableopportunities for people with disabilities and con-veyed many of the good things of life to many ofthem. However, in his opinion, one of its greatestshortcomings has been that a large proportion ofadults with disabilities who have been impairedsince childhood do not have much opportunity forgenuine community participation: they have few orno real friends, or they associate almost entirelywith other people who are societally devalued them-selves, and/or with paid caretakers.

Wolfensberger (2003) has indicated that theadvent of the ideologies of radical individualismcoupled with radical self-determination and thederivative constructs of ‘choice’, self-advocacy andempowerment has resulted in many people with anID being turned loose without any, or withoutsufficient, supports, guidance, tutelage or outrightcontrols. He makes the further point that in the




Western world it has been believed until veryrecently that rights were linked to correspondingobligations. Now, he argues, people claim rightswithout seeing themselves as having any corre-sponding obligations. In fact, the common mental-ity now appears to be ‘the rights are mine, theobligations are yours’. Wolfensberger singles out forparticular criticism the kind of assertiveness trainingpromoted by People First and other collective advo-cacy groups. While he accepts that elements of itare certainly adaptive, one should never teachassertiveness outside the contents of a broaderpreparation for life and without regard to the char-acteristics of the person at issue. Particular concernis expressed at the radicalisation of the advocacymovement – its increasingly confrontational stanceand the strident tone which threatens to antagoniseand alienate those whose support is vital if appro-priate services are to be developed (Jackson 2005).

Regulation

While Barron et al. (2011) touch on some of theregulatory problems in the social care sector in theUK, the picture that is presented is a partial one.The key issue not addressed is how you regulate asector dominated by ‘for-profit’ companies whenthe regulatory authority itself is inefficientlymanaged, chronically undermanned and has poorlymotivated staff (Samuel 2010). The opening up ofthe social care sector to market forces occurreddespite the acknowledgement by the first regulatorybody – the Commission for Social Care Inspection(CSCI) – that care services run by the ‘for-profit’sector in England were consistently outperformedby those run by the ‘not-for-profit’ sector. With thepassage of time, it has become generally acknowl-edged that competition is likely to favour those‘for-profit’ companies that are able to maintain theircompetitive edge by keeping costs low. Pollock(2005) has argued that this is likely to be achievedby the recruitment of poorly paid, inadequatelytrained and under-motivated staff. The implicationof this is that ‘not-for-profit’ organisations will besqueezed out, leaving commercial companies todominate the market.

It is important to put the issue of regulation ofsocial care in an historical context. Over the course

of the last two decades, there has been a successionof major crises in social care in the UK which hasproduced a series of enquiries and reports indicat-ing profound concern about the working of thesocial care sector (Wagner 1988; Utting 1991;Skinner 1992; Waterhouse 2000). In April 2004 theLabour Government set up the CSCI with the aimof modernising the system of regulating care ser-vices. In November 2004 the CSCI published itsfirst performance ratings of all councils with socialservices responsibilities. However, in 2009, only 5

years later, responsibility for regulating and inspect-ing adult social care and health care was passed tothe Care Quality Commission, which represented amerger of the CSCI, Healthcare Commission andthe Mental Health Act Commission.

In its final report in 2009 the Commission notedthat services for those with complex needs werebeing impeded by poor strategic commissioning,lack of person-centred care and the ‘marginalisa-tion’ of human rights. It also drew attention to thefact that some service users had little if any choiceabout their services and councils relied on inappro-priate out-of-area residential care (Ahmed 2009).For its part the Government indicated that the CareQuality Commission would continue to focus onreducing its operating budget. Closely linked to thebudget reduction was the decision to continue thederegulated inspection methodology practised in theCommission which was termed ‘proportionate risk-based inspection’. When translated this means fewerinspections. The previous statutory requirement toinspect care homes twice a year was abandoned.Now the minimum requirement was for care homesand home care providers to be inspected once every3 years and inspections were to be replaced by‘Annual Service Reviews’, which were paper exer-cises based on provider ‘self-assessment’ and anyother intelligence received (Unison 2007).

Unison, the principal trade union representingsocial care staff in the UK, has campaigned tohighlight the effects of these changes on the safetyand quality of care provision. Union members werereporting that the new regulatory system, with itsreduced staffing, was failing because of lack oftime: (1) to target its resources on those providersgiving a poor service; (2) to follow up on concernsand complaints or detect problems in the earlystages; (3) to impose and follow up on enforce-




ment measures; and (4) to spend time in the fieldtalking to service users. Unison pointed out thatinspectors were ‘too thin on the ground’ and thatthe situation would be further exacerbated byplanned redundancies.

This problem is best illustrated with an example.The author examined the performance of one ofthe market leaders in providing residential care foradults with an ID in the UK. The accuracy of thecompany’s claim to being a market leader wasassessed by examining the inspection reports on 24

of its premises which had been published by theCommission and were accessible on the Commis-sion’s website. It was found that one quarter ofthese premises had to meet at least six or morestatutory requirements. In other words, a quarter ofthe premises were in serious breach of their legalobligations. Three areas occasioned the regulatorybody particular concern:1 Overuse of agency staff. The inspectors drew atten-tion to the need for the company to review recruit-ment procedures to ensure that more was done toemploy permanent staff teams, thus reducing theuse of agency staff. A further concern noted was afailure to obtain satisfactory clearance for agencystaff and to produce evidence that they were appro-priately qualified.2 Staffing levels. A recurrent concern noted byinspectors was a failure by the company to employa sufficient number of staff to meet the needs ofresidents, particularly those requiring 1:1 attention.It was pointed out that if demands for 1:1 staffingwere not met, then this could lead to restrictedchoice for other residents, thus increasing the riskof neglect and abuse. Insufficient staffing alsomeant that opportunities for social, educational andrecreational experiences for residents were limited.3 Failure to implement Commission requirements. Thecompany repeatedly failed to implement the statu-tory requirements identified by the Commissioninspectors. In one case the registered manager hadbeen required to ensure that suitably qualified,competent and experienced persons were workingin the home at all times and in such numbers thatwere appropriate for the health and welfare of resi-dents. This requirement had been made on nofewer than three previous occasions.

It might be reasonably expected that a respon-sible service provider would pay attention to

requirements or recommendations made by theregulatory body and seek to implement the changesneeded as expeditiously as possible. The failure ofthe company to appoint sufficient permanent andappropriately qualified staff to meet the needs ofresidents pointed to an unwillingness to investadequately in staffing. The evidence from theinspection reports strongly suggests that therunning costs were being deliberately kept downthrough the use of agency staff and by maintaininglow staffing levels.

No apology is offered for devoting so much spaceto concerns about regulation for without regularand not token inspection of health and social careservices, the quality of provision will inevitablydecline. A further factor of critical importance isthe need to create a workforce that has been appro-priately trained for the demanding and responsiblerole of carer. As has been shown, ‘for-profit’ carecompanies tend to recruit the least qualified as theyare the least costly.

The shadow hanging over the health and socialcare sector for people with an ID is the possibilityof its collapse. If an investor in a ‘for-profit’ carecompany can no longer see any financial benefit inwhat was once a highly profitable investment, he orshe can exercise the option of withdrawing theirinvestment and placing it elsewhere. If there were tobe a general collapse in the care sector, we couldbe presented with a situation where local and/orcentral government could be forced to step in andnationalise the social care service!

Final observations

Those who have a professional interest in IDresearch have an obligation to assume a higherprofile at a time when the quality of life of peoplewith an ID and their families is under threat. Itcan do this in a number of ways through: (1) theestablishment of demonstration projects, eitherindependently or in association with the voluntaryand statutory sector, to explore innovative andpractical approaches to enhancing the quality ofthe services offered to people with an ID; (2)looking at ways of improving the quality of trainingprogrammes for care staff by moving away fromcurrent approaches that emphasise narrow instru-




mental competencies to strategies that developessential expressive and relational aspects of carepractice; and (3) offering a more considered andrigorous critique of current professional practiceand assuming a leadership role at a time whenleadership in this field is lacking.

Perhaps it is time to drop the routine and ritual-istic plea for further research that frequently con-cludes most research papers, for it is often notmore research that is required but appropriate andtimely action on the findings of existing research.This could lead to scarce financial resources beingmore profitably directed to improving services forpeople with an ID rather than funding further andpossibly unnecessary research. At a more funda-mental level, the question arises as to the raisond’être of ID research itself, given the increasingpoliticisation of the research process whereby theresearch agenda is to a significant degree dictatedby external bodies (Jackson 1993). The applicationof the purchaser–provider model to the researchprocess also prompts concerns as to the credibilityand ethical propriety of often one-sided contractualarrangements.

The deepening economic recession facing Europeand North America is likely to lead not only to amajor contraction in services but also to a signifi-cant deterioration in the quality of life of peoplewith ID. This situation might not have been quiteso serious, had there been some kind of challengeto the normalisation and inclusion agenda and theremorseless and destructive progress of the marketi-sation process. The question arises as to why theresearch community with a professional interest inthe field of ID appears to have voiced so littleconcern about trends that were clearly discernible.The argument that such intervention might com-promise the academic detachment of the researchcommunity by leading it into the political arena isnot persuasive. It overlooks the fact that through itsuncritical acceptance and promotion of the nor-malisation and inclusion agenda, some parts of theresearch community long ago forfeited any claim tobe acting with scholarly objectivity. However, onthe basis of some of the evidence advanced in thisSpecial Issue of the Journal of Intellectual DisabilityResearch, there may be signs of movement in theright direction. Perhaps, at last, ‘the times they area-changin’!

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Accepted 7 July 2011




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