Reflections on Deinstitutionalization in the United Kingdom

Reflections on Deinstitutionalization inthe United KingdomAlexandra Hamlin* and Peter Oakes†

*Castlebeck, Oakwood House, Eastmount Road, Darlington, England and †Department of Clinical Psychology, University of Hull,Cottingham Road, Hull, England, UK

Abstract Deinstitutionalization has been the hallmark of public policy for people with intellectual disabilities within many countriesin the developed world for the past 40 years. Although within Britain deinstitutionalization is set to be completed by the end of 2008,beyond the simple closure of hospitals, the success of this initiative can at best be seen as uncertain. Although huge structural changehas been achieved, the initiative’s outcomes in terms of reduced distress, mainstreamed services, and enriched networks of relation-ships, require further examination. In order to reinstate the possibility of transformation in the lives of people with intellectualdisabilities, it is necessary to return to an analysis of the relationship between people with intellectual disabilities, their supporters,formal services, and the community as a whole. One way of reflecting on these relationships is through an examination of thediscourses that characterize them. The authors reflect on the themes of protection, power and humanity, and the manner in whichthese have survived the physical closure of long-term care hospitals. The continuation of deinstitutionalization is understood asrequiring consideration of the institution in terms of the discourses that were prevalent within it. The transformation of services nowdepends on changes within these discourses and change now needs to be focused on relationships that challenge institutionaldiscourses.

Keywords: deinstitutionalization, discourses of disability, England, intellectual disabilities, power, protection

INTRODUCTION

The background to deinstitutionalization can be found in twomovements that developed in the second half of the 20th century.First, Goffman (1961) brought a mix of sociological theory anddirect observation to begin to establish intellectual disability as asocial construction rather than an internal condition. This was tolead to an understanding of the role of environment and supportin the definition of disability that is now so widely accepted(AAMR, 2002). Second, Goffman and others described thedestructive effects of institutions on the lives of people who bothlived and worked in them (Barton, 1959; Goffman, 1961). Despitethe warnings inherent in this work, the following decade broughtfew changes in the structure of services. In retrospect, there was asomewhat grim inevitability about the series of scandals that thenrocked hospital services in the UK. In Britain, outrage at theconditions uncovered in hospital services led to a significant shiftin public policy. The means of defining policy following consul-tation then, as now, was the Parliamentary White Paper. In thisinstance, the White Paper titled “Better Services” (Department ofHealth, 1971) set the agenda for deinstitutionalization in the UK.The project was given additional, if not essential, impetus by

the concurrent development of ideas in North America andScandinavia, known as “normalization” and later (in the NorthAmerican model at least) as “social role valorization” (Nirje,1992; Wolfensberger, 1972, 1983). Here, a sociological analysiswas enlisted to propose that services should reflect the notion thata person with a disability is as valid a human being as anyone else.The means and ends of services are expected therefore to reflectthe means and ends of those who are not considered deviant—that is, an ordinary life. This gave the architects of community-based services a clear idea about what was required (O’Brien,1987). The project had its brief and the task of closing hospitalscontinued in earnest.

A number of years later, superficial analysis of the projectwould suggest a good deal of success. In 1960, there were 65,000people with intellectual disabilities living in state-operated insti-tutions in England and Wales. By 2003 this number had fallen to1,500 and deinstitutionalization is close to completion in the UK(Emerson, 2004). However, the challenges to those who plan andprovide services might only just have begun. To meet those chal-lenges it is suggested that a closer and more rigorous analysis ofdeinstitutionalization is necessary. First though it is important todemonstrate that deinstitutionalization is at the very least a workin progress if it has begun at all.

In general, it is suggested that deinstitutionalization has led tosome positive outcomes. These include increases in day-to-daychoices, engagement in different kinds of activities and the extentto which people with intellectual disabilities express satisfaction

Received March 20, 2006; accepted October 4, 2006Correspondence: Alexandra Hamlin, Clinical Team, Castlebeck, OakwoodHouse, Eastmount Road, Darlington, England DL1 1LA, UK.Tel: +441325 252001; E-mail: [email protected]

Journal of Policy and Practice in Intellectual DisabilitiesVolume 5 Number 1 pp 47–55 March 2008

© 2008 International Association for the Scientific Study of Intellectual Disabilities and Blackwell Publishing, Inc.

mailto:[email protected]

with the service they receive (Kim, Larson, & Lakin, 2001).However, there have also been some reviews of individual effortsthat have been forced to reflect on the difficulties of establishingand maintaining progress following deinstitutionalization (Bigby& Fyfe, 2004). Closer analysis of some outcomes that can be saidto express some of the most important aims of the effort alsoreveals an uncertain picture.

Project Outcome—Ordinary Houses in Ordinary Streets

The closure of hospitals in the UK has not led to a largenumber of people living in their own homes and controlling thepurchase of their own support. In 1999, just 0.08% of thosereceiving support from statutory services were living in their ownhomes and purchasing (with support) their own care (Depart-ment of Health, 1999). Two-thirds of people with intellectualdisabilities who were receiving statutory support were living incongregated settings (Department of Health, 1999). CommunityCare statistics in 2004 show that of those people who were receiv-ing financial assistance for residential support, 96% were living instaffed care homes or nursing homes (Department of Health,2004a).

Project Outcome—Special Support

Similarly, it seems that the support systems remain largelyspecialist. In England, between 2003 and 2004, 57,200 peoplewere seen by “learning disability community nurses” (Depart-ment of Health, 2004a). This is short of the 65,000 peoplewho lived in hospitals more than 30 years previously but notsignificantly.

Project Outcome—Levels of Distress

The arrival of community-based services was expected togive increased choice in environments that are enriched byopportunities in the field of leisure and work. This in turn wasexpected to lead to sharp reductions in the extent to whichpeople with intellectual disabilities express their distress in theform of what has become known as severe challenging behavior.In 1987, an extensive prevalence study was carried out in north-west England across a general population area of some 1.54million people. The prevalence of severe challenging behavioramong the people with intellectual disabilities in this group wasgiven as 5.7% (Qureshi & Alborz, 1992). The study was repli-cated some 14 years later among a smaller general populationof 0.46 million. The prevalence of severe challenging behaviorstood at 7.8% (Emerson et al., 2001). There are now a rangeof studies suggesting stable levels of challenging behaviorbetween 5 and 15% (see Emerson et al., 2001). Despite theclaims of small scale, well-controlled studies of specific inter-ventions (Golding, Emerson, & Thornton, 2005), the advent ofcommunity-based care as currently understood and the bur-geoning of special support services seems to have had little or

no impact on the extent of distress experienced by people withintellectual disabilities.

Project Outcome—Relationships

Living away from isolated hospital settings would be expectedto provide opportunities for people with intellectual disabilitiesto meet new people and develop circles or networks of relation-ships that go beyond fellow residents and members of staff. Therehas been some positive evidence that people who have left hos-pitals have developed more consistent and enriching contactwith family members. It is clear however that the opportunity todevelop relationships from intimacy, through close friendship tocommunity ties has been almost entirely lacking for people whouse services (Partington, 2005). Indeed, in a study of social net-works, it was found that just one-third of people with intellectualdisabilities who were in receipt of services had even one friendwho was not disabled (Robertson et al., 2001).

It is not our purpose to deny the constructive impact of thegovernment’s efforts, or to undermine the diligence and commit-ment of those persons who were responsible to commission andprovide services since the issuance of the “Better Services” WhitePaper of 1971; rather it is our hope to articulate and, at least tosome extent, explore evidence of the effects and residuals of theUK’s deinstitutionalization effort. In so doing, we hope to dem-onstrate the need for reflection on the nature of the policy and itsassumptions before the authorities commit yet more energy andresources to structural changes that have proved to be, in ouropinion, less than fully effective for many people with intellectualdisabilities and their supporters.

Ideas About Change

There are said to be a number of ways in which people alter ordevelop thinking about particular issues. In reflecting on this,Foucault (1987) suggests that some form of dialectic is an impor-tant method of change. Indeed there is support for this in theMarxist traditions of sociology and in Kuhnian ideas about thephilosophy of science. In considering the kind of thinking that ledto the deinstitutionalization effort, there is a sense that dialecticwas important to create and sustain change. The institution hadto be set against the community-based alternative. Fulcher (1996)suggests that while such an approach proves to be effective inachieving structural change, it may have undermined the possi-bility of achieving “transformation” in the ways people with dis-abilities are understood and supported.

In thinking about evaluating healthcare, Donabedian (1980)makes what has become a classic distinction between structure,process, and outcome. To achieve effective healthcare it is arguedthat attention must be given to all three and this continues toform the basis for evaluation practice. It is possible that the focuson structure born of the union of philosophical motive (normal-ization) and a dialectic method (institutions are bad, ordinaryhouses are good) would inhibit thinking about both process andoutcome. This could have led to the neglect of clear expectationsof the outcomes for people who use services, and of the process in

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terms of the nature of the relationship among people with intel-lectual disabilities, their supporters, and the community at large.The possibility of the deinstitutionalization policy as a work oftransformation has been further undermined.

To reinstate the possibility of transformation, it is necessary toreturn to an analysis of the relationships among people withintellectual disabilities, their supporters, formal services, and thecommunity as a whole. A helpful way to understand and describethese relationships involves reflecting on the discourses that char-acterize them. Essentially this is a critical evaluation of processthat must begin once again in the institution and the discoursesthat it represented. It will then be possible to explore the extentto which these discourses have survived or even flourished inmodern, restructured services. This in turn will give some cluesabout why real change and valued outcomes have been so hard toachieve with any consistency and lead to some ideas about atransformation project for the future.

THE DISCOURSES OF THE INSTITUTION

The stated purposes of institutions for people with intellec-tual disabilities and the predominant manner of treatment ofpeople living in these institutions have varied over history.However, the discourses that characterize relationships within theinstitutions appear to have remained relatively stable over time.Here we propose these discourses were characterized by thethemes of protection, power, and humanity.

Protection

One of the outcomes of the Darwinian revolution was toestablish an idea that the first task of all living creatures is tosurvive and to reproduce. In societal terms this translates into theparamount concern of society to protect itself, and in politicalterms, to the first task of government being to protect the people(Human Rights Act, 1998; U.S. Constitution, 1787). It is clear thatthe drive to protect runs deep within all levels of human activityand it is here that the first series of discourses about the institu-tion can be found.

Protecting people with intellectual disabilities The segregation ofpeople with intellectual disabilities into institutions has beenunderstood as necessary for their own protection. The discourseis intertwined with a role perception of the person with an intel-lectual disability as being either “holy innocent” or “childlike”(Wolfensberger, 1972). The perception has been one of vulner-ability and naivety; people who need a formal system to keepthem safe. Bannerman and Lindsay (1993) note that key recom-mendations during 20th century policy in the UK were for theprotection of people with intellectual disabilities from themselvesand from society as a whole.

Protecting members of the wider community The institution didnot however, serve only to protect those within its own walls. Thediscourse of protection also contained ideas that the isolation ofthe institution was necessary for protecting the general public

from those that lived within it. Throughout history, individualswho were considered either criminal or carrying infectious dis-eases have been held at a distance from the community in build-ings that could congregate, confine, and isolate them (Cocks &Allen, 1996). The belief that people that lived within the intellec-tual disability institution were dangerous was perpetuated bythe physical appearance of the institutions. The similarity of theappearance of the places that housed the criminals or infectiouslyill people, to the places in which masses of people with intellectualdisabilities lived, led to an association of danger in the minds ofthe community (Cocks & Allen, 1996).

Protecting society as a whole Victorian ideas about natural selec-tion and inheritance had a profound influence on the discourses ofdisability of the time, fuelling the growth of institutions in the early20th century (Jones, 1972). Intellectual disability was consideredto be caused by gene mutation due to the inappropriate breeding ofdefective parents (Goodley, 2000). This quotation from the timeillustrates this belief,“The feeble-minded are a parasitic, predatoryclass, never capable of self-support or of managing their ownaffairs . . . they cause unutterable sorrow at home and are amenace and danger to the community. Feeble-minded women arealmost invariably immoral, and if at large usually become carriersof venereal disease or give birth to children who are as defective asthemselves. . . . Every feeble-minded person, especially the high-grade imbecile, is a potential criminal . . . the unrecognised imbe-cile is a dangerous element in the community” (Fernald, 1912).The ideas of natural selection were misunderstood as relating tochange within a race over a handful of generations, rather thanover a number of centuries. The ideas of “social Darwinism” gaverise to a hope of preventing individual differences where thosedifferences were understood to be defects (Barnes, 1991). Theredeveloped a eugenics movement with the most serious of conse-quences for people with intellectual disabilities across Europe andthe United States during the first part of the 20th century.

Power

Foucault suggests that power relations arise whenever theactions of one person affect the field of possible actions ofanother. In this way power can be seen as a normatively neutralconcept (Patton, 1998). Power can be exercised in ways in whichthe other finds beneficial, such as the giving of advice, or passingon of knowledge, or in ways in which the other objects to. Whilethe parties are both able to exercise power, they are able to resistthe actions of the other and the power balance remains intact.However, in situations in which the possibility of resistance isremoved or reduced, the power relations become one-sided.Foucault (1987) describes these situations as states of domina-tion: “the relations of power, instead of being variable and allow-ing different partners a strategy which alters them, findthemselves firmly set and congealed.”

Powerlessness of people with intellectual disabilities The discourseof power in the institutions was without question one of the mostpervasive. People with intellectual disabilities were placed in aposition where others were able to restrict their possible fields



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of actions in a one-sided and dominating manner. From themoment of admission, power relations were one-sided with staffmaking decisions about everything from the admission itself tothe person’s every activity during the day. As the experts withinthe system, the medical professionals, who administered the insti-tutions, were afforded a power that went beyond their knowledgeof the human body, and gave them power over a resident’s everymovement. This power was legitimized by translating everythingthat would go on within a hospital into a medical frame of refer-ence (Goffman, 1961).

Institutional life was organized around a hierarchy of powerbased on a medical narrative. A medical superintendent was likelyto sit at the top of this hierarchy, with power trickling downthrough other medical and nursing staff, to care staff, and finallydown to patients (Stevens, 1997). The superintendent’s powerwas exercised over staffing, management of the services, and thedaily routines of the institutions, as well as the individual treat-ment and life decisions of the patients. In addition, power wasexercised through the hierarchies through money, information,restriction of activities, segregation, block treatment, physicalforce, and denial of sexuality (Goffman, 1961). For the person atthe bottom of this hierarchy, the possibility of resisting the powerwielded by those above them was minute.

Humanity

The earliest example of human rights legislation came in theUnited States of 1830. The case concerned Standing Bear, aNative-American who was unwilling to accede to the direction ofthe state to live in a particular designated area in South Dakota(see Welker, 2004). The case turned on the question of whether ornot Standing Bear could be understood as a human being. Lessthan human status would, ironically have bestowed on him theright to wander free of state control. The court determined thatStanding Bear was indeed human and the notion of human rightslaw was instituted. The extent to which various marginalizedor oppressed groups are considered to be fully and completelyhuman marked much of the discourses of the institution.

Less than human—special management and practice In his cri-tique of the institutional process, Goffman (1961) discusses theways that people entering institutions become dehumanized. Hedescribes a process of “mortification” in which new entrants tototal institutions are “stripped” of their previous identities;through procedures such as cutting of hair, taking away clothingand changing or removal of their given names. Jones and Fowles(1984) continue Goffman’s original work and talk of the distanc-ing established between people who live and work in institutionalsettings. By distancing themselves from those whom they arecaring for, those who worked in the institutions were better ableto treat people in ways that they would not have felt comfortablein treating people whom they considered like themselves. Thediscourse here is one where people with intellectual disabilitiesare not seen as possessing the richness of emotional life enjoyedby others.

Less than human—need for treatment The overriding discourseswere protection and segregation during the early stages of the life

in institutions for people with intellectual disabilities. However,in more recent history these institutions became hospitals inwhich people were treated. In 1948, the National Health Service(NHS) came into being in the UK. In developing the structure ofthe NHS, intellectual disability was incorporated into mentalhealth services. Institutions for people with intellectual disabili-ties found themselves under control of the NHS. It has beensuggested that almost overnight, with little thought to the essen-tially non-health–related nature of the mental deficiency institu-tions, the care of people with intellectual disabilities becamemedical (Collins, 1992).

The medical discourse is one where the disability and relatedproblems are located within the person in the same way otherillnesses are understood. Change is understood as through treat-ment: The role of a professional is as a medically trained pro-fessional (Blackburn & Yates, 2004). The medicalization ofinstitutions contributed to the ideas of disability as being “treat-able,” and further disempowered people with disabilities bydistancing them from knowledge about their own conditions.The medical institution became one in which physicians wereafforded the role of power, authority, and absolute knowledge,while individuals with intellectual disabilities became powerless,passive recipients of care. People’s knowledge of their own needsand abilities, or the opinions of their families and carers, weredisregarded in favor of medical opinion.

Less than human—unable to contribute Since the early middleages, people who were unable to work and maintain their inde-pendence were placed in institutions such as work houses and poorhouses (Jones, 1972). Prior to the industrial revolution, peoplewith disabilities could often be involved in agricultureand small-scale industry alongside others without disabilities.Tasks that could be learned through observation without formalschooling, allowed people with disabilities to provide a valuedcontribution to a family’s or community’s survival. However, withthe dawn of the industrial revolution, and as capitalism developed,the move from cooperative-based systems to individually wagedlabor led to more people with disabilities being excluded fromproduction processes (Oliver, 1990). In this individualistic era,those who could not earn their own way were regarded a socialproblem and a burden, and frequently became segregated frommainstream society in various institutions. Despite the fact thatmany people living in institutions contributed greatly to theupkeep of the institution (see Atkinson, Jackson, & Walmsley,1997; Cincotta, 1995), the societal belief that they were unable tocontribute to mainstream society persisted.

INSTITUTIONAL DISCOURSES IN MODERN SERVICES

Having explored the key discourses of the institutional era, itis possible to discern the extent to which they have survived oreven flourished in the new community-based services.

Protection

Protection of people with intellectual disabilities—dangers and risksof everyday life The closure of the institutions was not an easy



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task. The culture was one of care and protection, of block treat-ment and routine. The people who worked within the servicewere socialized within that culture. To become successful in thatculture they were required to internalize its values and beliefs(Collins, 1992). Yet it was the workforce that came from thisparticular hospital culture that was then asked to become theservice providers of a community care system that was aiming fora fundamentally different ethos.

To be able to live ordinary lives, people need to be able to takerisks, test things out, and sometimes get things wrong. This is verydifficult to tolerate for a staff group that has been socialized tocare and protect. In the current context, examples of the “caringprofessions” struggling with balancing their role in enabling inde-pendent choices, with their need to protect, arise constantly. AsSchwabenland (2000) notes that workers are asked to empowerpeople while adhering to all the organisation’s policies and pro-cedures, helping people with intellectual disabilities take risks andlearn from their mistakes while ensuring nothing happens thatmight bring about bad publicity, and “supporting people in thechoices they make while protecting them from harm.”

These struggles are evident in everything from diet to pre-scribed medication from spending money to making friends.However, perhaps the area that creates the greatest debate amongthe caring professions is that of sexuality (see Sheerin, 1998). Thebalance of protection from abuse, with the rights to fulfillingsexual relationships is complicated, not least because of societaltaboos around discussing sexual relationships. Moreover, thereappear to be remaining repressed discourses about the dangers ofpeople with intellectual disabilities becoming parents (Booth &Booth, 1994).

The extent to which there continues to be a genuine concernfor people with intellectual disabilities and the impact of theredesign of services can be seen in recent developments in theUnited States. In California, studies revealing a higher mortalityrate among those who had left the institution has led to a desireamong some parties to go back to protecting the vulnerable byhaving them in places with 24-hour special care (Anonymous,1997). The development of community-based services seems tohave become snarled in confusion between a concern for peoplewho are seen as vulnerable and the institutional discourse ofprotection.

Protection of the general public England and Wales now have anew White Paper titled “Valuing People: A new strategy for learningdisability for the 21st century.” Here, the principles of the publicpolicy are established as inclusion, choice, rights, and indepen-dence for people with intellectual disabilities (Department ofHealth, 2001; a consultation paper was also published in 2000 inScotland titled “Same as You,” which highlighted similar policyaims—Scottish Executive, 2000). There is a sense, however, that adiffering voice concerned with the protection of the public isdirecting actual practice. This discourse is normally only heardwithin pleas for helping troubled individuals, yet there is an over-riding sense that the rights of the public for protection far out-weigh the rights of people with disabilities for freedom. In adiscussion paper regarding the need for specialist services in theUK, P. Shackell (personal communication, 8 April 2005) illus-trates this interest in public protection: “An important issue in thecommissioning of specialist services for people with learning

disabilities, as in mental illness services, is to acknowledge a needto protect the public. . .”.

This importance of public protection has been witnessed inproposed changes to public policy in the UK. New legislation hasbeen drafted to manage people with mental health needs andpeople with intellectual disabilities who have come into conflictwith the law or who are seen as a danger to themselves or others.The Mental Health Act revisions, as laid out in the Draft MentalHealth Act (Department of Health, 2002), show a shift in thebalance between public safety and individual rights, in favor ofprotecting the public. The proposed new act uses the definition ofmental disorder, which lays open the risk that almost anyone withan intellectual impairment could be detained. Within the sameact, there is a removal of the previous acts’ consideration of treat-ability in detaining risky individuals. This leads to a risk of peoplewho have not committed offenses being detained involuntarily,for long periods of time, without the aim to help these individualsbut solely for the purpose of public protection.

Protection of society as a whole—the value of human life Theneed for disapproval and condemnation when reflecting on anera of open eugenicist thinking is now apparently unchallenged.However, it may be argued that remnants of that eugenicist move-ment remain in the discourses of disability acting on the beliefsand practices of today. As has been noted, the notion of rights isone of the four central ideas of the recent White Paper, “ValuingPeople” (Department of Health, 2001). However, Sooben (2004)seeks to demonstrate how a stated aim can be contradicted by theunspoken assumptions of worth running through other policies.Sooben (2004) discusses the apparent incongruence between UKpublic policy on intellectual disability (Department of Health,2001) and UK public policy on human fertilization and abortions(Human Fertilisation and Embryology Act, 1990; The AbortionAct, 1967 amended 1990)1.

In recent years, the discriminatory practices of some medicalinstitutions have been brought to light following complaints byparents of children with intellectual disabilities. For example, in2001 doctors within a UK hospital were found to consider chil-dren with Down syndrome less favorably when consideringappropriateness for corrective heart surgery (BBC News, 2001).Equally the experience of many individuals with intellectual dis-abilities requiring medical treatment suggests that there remains acontinued belief that some human lives may be more valuablethan others. Health screening of adults with intellectual disabili-ties in the UK has shown a high level of unmet physical needs(Barr, Gilgan, Kane, & Moore, 1999; Howells, 1986; McGrother,

1Valuing People acknowledges the prejudices and discriminatory practicespeople with intellectual disabilities often face and proposes changes throughwhich the valuing of people with intellectual disabilities can be realized. Yetthe fertilization and abortion legislation suggests a fundamental devaluing ofpeople with intellectual disabilities. The Fertilisation and Embryology Act(1990) sets out the rules that govern the management of the human fetus. Itstates that a termination of a fetus with ‘serious handicap’ can be carried outat any time, even up to full term. This is despite the amended Abortion Act(which sets out the law pertaining to the termination of pregnancy), whichreduced the time scale in which termination of a fetus without “serioushandicap” may take place to 24 weeks gestation (Kennedy & Grub, 2004). Thisseems to suggest that after 24 weeks, a non-handicapped fetus is valued as ahuman being and needs to be protected, while a serious handicap leaves a lifeless valuable.



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Hauck, Bhaumik, Thorp, & Taub, 1996). Most people withintellectual disabilities have greater health needs than the rest ofthe population, and yet there are often large inconsistencies in theprovision of health care suggesting people with intellectual dis-abilities often find it harder to access the medical treatment theyneed (Department of Health, 2001). It appears value judgmentsabout the worth of different human lives are being made not onlyat a prenatal stage but also continue to be made later in life. Theimplicit message of these considerations is that there remains adiscourse within society that the birth of a disabled person, andtheir continued life, is a bad thing.

Power

Power—the provision of information Foucault asserted thatwithin our modern society there is a deep connection betweenknowledge and power (Johnson, 1998). Those perceived aspowerful are those who are afforded that role by others basedon the scientific or professional knowledge they hold. The con-tinued dominance of professionals who carry an expertise inintellectual disability is just one example of the tensions aroundthis issue. There remains power in expertise, and it may be sug-gested that there remains (perhaps an unconscious) desire ofprofessionals to hold on to this power by continuing to disre-gard people’s own life choices in favor of expert opinion, and bynot sharing their expert knowledge. There has been someimportant progress made in the provision of accessible infor-mation for people with intellectual disabilities in the sphere ofhealth and social care provision (Change, n.d.). However, thereis a sense that accessible information is of secondary impor-tance, there are serious questions about use of material in every-day life, and issues of access for people with high support needsremain unaddressed.

Power—the opportunity to make key decisions There certainlyappear to be structures in place in public policy to address issuesof power. As has been noted, one of the main tenets of “ValuingPeople” is “choice”; and in defining the means of operationaliz-ing this great store is set by person-centered planning (Depart-ment of Health, 2004b). Person-centered planning is intendedto embody an approach that sets the person with a disability atthe center of planning services (Dowling et al., 2006). It is nowa required approach for all people who receive services inEngland. It is also possible for people to carry budgets for theirsupport under direct payment schemes and maintain somehousing rights through the more widespread introduction oftenancy agreements.

It is the foundation of choice however, that demands atten-tion here. The notion of choice has been prominent in publicpolicy over recent years, often forming the battleground forparty politics rivalry. Ideas of consumerism have been applied topublic services with the aim of competition aiding quality, andchoices influencing commissioning (Leadbetter, 2004). Thenotion of choice however, is a weak one compared with therobust and theoretically well-developed ideas about power.Where power is maintained by services, choice can be offered,but only within a complex web of set frameworks. Restrictedchoice does not empower, however, where power is genuinely

transferred; choice is one of the automatic by-products of theexchange. It is possible that the structures in place to offerchoice are not able to offer power over the decisions andresources that might be considered to be fundamental. Thesemight include deciding when to leave home, whom to live with,what job to do, who to provide personal support to, or who tohave an intimate relationship with.

Humanity

Less than human—the need for special care As has been noted, inEngland and Wales, “Valuing People” (Department of Health,2001) has laid out an aim for people with intellectual disabilities,emphasizing the importance of choice, inclusion, independence,and rights. These are discussed as the new discourse, yet they lackthe intellectual rigor and consistency needed to achieve the aimsthey are promoting. In particular, the White Paper (Departmentof Health, 2001) emphasizes the importance of people with intel-lectual disabilities being able to access mainstream services, whenit says, “Being part of the mainstream is something we all take forgranted. We go to work, look after families, visit our GP [GeneralPractitioner], use transport, and go to the swimming pool orcinema. Inclusion means enabling people with [intellectual dis-abilities] to do those ordinary things, make use of mainstreamservices and be fully included in the local community.”

The government’s application of the policy of inclusion doesnot, however, insist that ordinary supports and community-basedoptions are available. Rather, it describes them as desirable andallows for the continued provision of specialist services. Supportsprovided for people with intellectual disabilities often continue tocome from specialist providers. People with intellectual disabili-ties often live in specialist care homes, receive health care fromspecialist intellectual disability professionals, receive respiteprovision in specialist units, access specialist forensic or mentalhealth care, and attend day services specifically for people withintellectual disabilities. The many years of segregating peoplewith intellectual disabilities in hospitals that provided “specialist”care appears to have led to the assumption that the members ofthis group are so vulnerable that they require something morethan, or different to, what other groups might need. The contin-ued reliance on specialist care providers allows this belief to beperpetuated and continues to deny other support systems theexperience of engaging with people with intellectual disabilities.As contact remains infrequent, society has to rely on the messagesthey pick up from the nonverbal sources provided by formalservice systems (Cocks & Allen, 1996). If these messages are thatspecial care is needed, this discourse will continue.

Less than human—understanding distress as illness It is self-evident that people with disabilities can suffer illness and diseasethat can, in some instances, become disabling over long periods oftime. In modern services, however, there remains confusionbetween the original disability and the existence of health difficul-ties. This in turn continues to maintain people with intellectualdisabilities in a series of separate health services. Interestingly, it isalso perhaps through the postinstitutional phenomenon of themultidisciplinary team (MDT) that the discourse of distress asillness is promulgated.An MDT is not complete without a range of



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expert professionals, including psychologists, occupational thera-pists, speech therapists, physiotherapists, and nurse specialists.There are systems of referrals, presenting problems, diagnoses,treatment plans, and discharges on reduction of presentingproblem. Teams struggle to claim that only special teams who“understand disability” can provide these services and even accessto generic services is said to require planning and accompanimentby a disability specialist. It seems that while disability itself isunderstood as a social issue, there remains a pervasive need tounderstand any kind of distress as internal, in some sense related todisability and requiring the attention of services that“understand”disability in some special way.

Less than human—unable to contribute The institutions mayhave closed but society continues to function in an economicallyindividualistic manner. If one person’s earning ability is reduced,it is seen as their personal misfortune in the same way as dis-ability is often considered a personal tragedy (Oliver, 1990). Thedesired individual position is one of independence; dependenceis viewed negatively. There is an economic element to this, withan implicit assumption that those with impairments are a costlygroup for whom society must carry the burden of care. Thesocial, economical, and political participation of people with dis-abilities is not accorded monetary value. This means that pro-viding enabling environments for people is considered a drain inwhich the costs outweigh the benefits (Meekosha, 2000). Further,people with disabilities are likely to face exclusion from employ-ment because of their perceived inabilities. Despite antidiscrimi-natory laws, it appears the common belief among employers isthat employing people with particular limitations will be aburden rather than an asset. People with disabilities are thenexcluded from the possibility of taking part in the socially desir-able sphere in which an individual is able to economicallysurvive unsupported and take part in the social world ofemployment.

Towards the Future

Given the analysis up to this point, it would seem that serviceprovision in new restructured services would be advised to reflectupon the core discourses of an institution as it relates to thepeople who receive the service. To conclude this account, briefcomments will be made concerning each of the main discourses.

Protection What, in the person’s immediate environment,addresses a discourse of protection? Here an individual may makechoices or be involved in experiences that might reflect her per-sonality and individuality rather than be governed by an overalldiscourse of being “vulnerable.” This is perhaps the most difficultarea to address in a context of safeguarding adults and concernabout risk, abuse, and the possibility of harm. It will be necessaryto have some model to understand and process situations wherean individual does indeed experience harmful outcomes as aresult of the choices he or she makes. It will be equally importantfor other levels of the systems that interact with the person to besupportive of a challenge to the discourse of protection. This willgo beyond the clinical and management systems required whentaking positive risks. It will include policy and practice in relationto parents who have intellectual disabilities and work in the field

of human genetics aimed at reducing the occurrence of disabilityin society as a whole.

Power It has been noted that while progress in offering choice topeople who use services has been observed, the thinking requiredto address issues of power among people with intellectual dis-abilities remains incomplete. Power in terms of information,physical control, self-expression, independence, and economicactivity are all issues to address on a day-to-day basis with theinteractions of carers and support staff. Wider supervisionsystems, engagement with brokers of power in communities, andfamily systems are also important areas to address from the per-spective of power. This will also be in the context of social policyand access to community development resources for people withintellectual disabilities. A key and hugely challenging task will beto support people with intellectual disabilities in becoming orga-nized as a group to tussle for power on their own behalf.

Humanity In terms of immediate environment, there areserious questions here for services for people with intellectualdisabilities. How do those in direct contact with people interact inways that support and affirm their humanity? This in turn will bethe subject of training and supervision from those less directlyinvolved. A model of distress that emphasizes communicationand relationship beyond diagnosis and classification will con-tinue to require attention (Lovett, 1996). Perhaps the mostchallenging debate however will relate to whether services arerequired that are specific to people with intellectual disabilities.Such a debate will be particularly difficult, given the powerfulinterest groups involved and there will also be significant andlegitimate concerns among people with intellectual disabilities,their supporters, and families about the discrimination that maybe faced in generic services.

CONCLUSION

This paper has explored a different understanding of theinstitution that may help to explain the uncertain success ofthe deinstitutionalization efforts in the UK. Exploring the extentto which institutional discourses have survived leads to a seriesof important questions for modern services. This will involverestricting structural change to that which can be shown toaddress issues of process and outcome. It will then involve a fargreater challenge—the transformation of services based on a newkind of relationship.

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Documents

Reflections on Deinstitutionalization in the United Kingdom