102 British Journal of Learning Disabilities Vol, 23 (1 995)

Living under the Strategy: Do Outcomes for Users of Welsh Community Residential Services Live up to the All Wales Strategy’s Underlying P r i n c i p les?

Jonathan Perry and David Felce, Welsh Centre for Learning Disabilities Applied Research Unit, University of Wales College of Medicine.

The results of a two-year study which assessed quality of life outcomes for residents of fourteen small-scale staffed houses in Wales are discussed in the context of the principles which underlie the All Wales Strategy for the Development of Services for Mentally Handi- capped People. Housing quality and location, levels of community participation, individualisation and auto- nomy were generally found to be reasonably high. In contrast, levels of social participation and support for resident involvement in activity were typically low. Furthermore, it was found that people with more sub- stantial disabilities tended to fair worse than others. These results are compared with outcomes reported for users of earlier ’demonstration’ projects and brief suggestions for service development are made.

The translation of ‘new ideas for the care of mentally retarded people in ordinary dwellings’ (NIMROD) into a comprehensive local service which used ordinary housing for people resettled from hospitals, demon- strated the potential of community based residential ser- vice provision in Wales in the early 1980s (Lowe & de Paiva, 1991). Those who were resettled were found to gain skills, make more use of community amenities and have increased contact with family and friends. Develop- ments elsewhere at the same time paralleled these find- ings and also showed that residents in ordinary housing received greater support to participate in activities and more interaction with staff (Felce, 1989).

Bratt & Johnston (1988) referred to the early develop- ments of ordinary housing services as ’first generation’ projects. They used the term ’second generation’ projects

to refer to the considerably greater number of small-scale residential services which succeeded them. In Wales, provision of housing has increased steadily under the All Wales Strategy for the Development of Services for Mentally Handicapped People (AWS) (Welsh Office, 1983), particularly accelerating when resettlement became a core focus in 1988. The number of people living in hospitals in Wales decreased by 580 in the four years between 1988 and 1992, only five fewer than during the eight years between 1980 and 1988 (Emerson & Hatton, 1994). In most walks of life, second generation or sub- sequent projects would be distinguishable from their progenitors by increased sophistication and efficiency. For example, improved performance, fuel economy and safety with each generation of car is almost taken for granted. Given the impressive principles embodied in the AWS and the generous resources which ac- companied the strategy, it is reasonable, therefore, to assume a standard of quality in today‘s residential ser- vices which at least matched the first developments.

In view of this, and recent concern about the poten- tially deleterious effects of greater cost constraint in the second phase of the AWS (Community Care, 1994), it is timely to take stock of quality in today’s small-scale supported housing services. In particular, it is appropri- ate to assess what occurs in practice in these settings against the aspirations embodied in the AWS guiding principles. This paper is based on a two-year study which has been recently completed (Perry & Felce, 1994). It provides evidence, on a variety of quality dimensions, about a sample of fourteen staffed houses for people with learning disabilities in South Wales. The services were provided by the statutory, voluntary or private sec-

British Journal of Learning Disabilities Vol. 23 (1 995) - 103

tors and all had been established since the inception of the AWS. The number of residents in each ranged from one to seven (mean four) and the 55 residents served spanned the range of support needs, from those who required very high levels of support to those requiring only minimal input.

A Normal Pattern of Life in the Community The first AWS principle is that all people with learning

disabilities have a right to normal patterns of life in the community. What constitutes a normal or abnormal pat- tern of life is not defined precisely. However, few would disagree that there are certain standards of living which most people, given the choice, would like to achieve. Wolfensberger (1983) adopted the notion of cultural value as a more useful and less contentious criterion than normality. A pattern of life in the community valued by most people in Britain today, implies at the very least living in ordinary houses which are homely in terms of furnishings and personal possessions and which offer a good standard of physical comfort. It also implies reasonable levels of community and social inte- gration and positive relationships with those with whom we live. In addition, a normal pattern of life typically involves being constructively occupied. Aside from edu- cation and work, activity may be social, domestic or rec- reational but few people are totally inactive for signifi- cant periods apart from during sleep.

The South Wales study assessed these aspects of com- munity living using a series of established measures. The physical quality of housing was generally found to be high. The upkeep and pleasantness of environments and the degree of personalisation of different areas, such as bedrooms, was also fairly good across the board. Whilst most settings were relatively homely, the degree of homeliness was found to correlate with the residents’ independent abilities. People with the most substantial learning disabilities tended to live in less homely set- tings.

Activities in the community were quite frequent. On average each person undertook 18 per month. However, the frequency was variable and, again, the less able resi- dents usually had fewer opportunities than their more able counterparts. This was also true of residents’ social lives which, on the whole, were very limited. On aver- age, each person had eight social contacts in a month, or just one meeting with someone who was not a fellow service user or staff every four days. The four people who lived most independently had an average of 20 social contacts per month, two every three days. The lowest frequency of social contacts was three per month, not even one a week.

Interaction with those with whom we live is con- sidered by many authors to be an important quality of life domain (e.g. Heal & Chadsey-Rusch, 1985; Blunden, 1988). The level of interaction between residents, meas- ured by direct observation, was found to be extremely low, averaging 2.5% (range, 0%-15%). This translates to an average of one-and-a-half minutes in each hour, with as much as nine minutes per hour at one extreme and virtually no interaction between residents at the other. When not engaged in domestic or personal activity, even those residents with the greatest ability to communicate tended to undertake leisure activities such as watching

television or videos which did not involve social interac- tion, more than they interacted with one another.

The final feature of a normal pattern of living iden- tified above was that of involvement in activity. Vari- ation was extremely pronounced. Time spent engaged in any form of typical daily living activity (household, personal, leisure or social) ranged from 16% to 89%, so whilst some residents had something to do for only ten minutes an hour, others were occupied nearly all the time. Where an individual’s level of engagement was located in that range was strongly linked to their level of ability. People in the six houses serving the least able residents had, on average, only something to do for a third of their time, whereas more able residents in the other eight houses were engaged in activity for just over two thirds of the time. Overall, residents were engaged in activity for a little over half of the time they were observed. Half their day, therefore, was spent without occupation, constructive or not.

Individualisation and Choice The second AWS principle is that people with learning

disabilities have a right to be treated as individuals. The extent of individualisation within the 14 services is illus- trated by the results of several measures. Individualis- ation in each setting was rated in the course of an evalu- ation using Program Analysis of Service Systems (PASS) (Wolfensberger & Glenn, 1975). Expressed as a percent- age of the possible total score, individualisation aver- aged 41% across the 14 houses and ranged from 0% to 90%. Scores in only two settings exceeded 50%. Not sur- prisingly, the highest rating was achieved in the only setting which served one person. The existence of indi- vidual plans (IPS) for residents would demonstrate one form of commitment to the treatment of people as indi- viduals. A Zaissez faire attitude was revealed by only three of the settings having such plans expressed in writing.

The extent of individualisation is also apparent from results on the Group Home Management Schedule (GHMS) (Pratt et al., 1979) which examines the presence of de-individualising management practices such as block treatment, rigid routines, depersonalisation and social distance between staff and residents. The settings studied were found to be individual-oriented insofar as they adopted very few institutional practices. The rather discrepant picture provided by the GHMS and PASS stems largely from their different reference points. PASS assessors would look at the full range of ways in which individual difference is provided for within the culture and explore the extent to which these were in evidence in service practice. The GHMS has a more limited agenda concerned with the extent to which negative institutional practices are avoided.

The amount of choice that residents are given and the level of autonomy they are able to exercise also reflect the services’ orientation towards individuals. Three of the four measures used to assess autonomy and choice among residents in the study indicated that residents, throughout the range of abilities, were said to enjoy high levels of autonomy and choice. However, the aspects of the PASS evaluation which related to autonomy showed it to be limited. Again, this discrepancy may be due to the emphasis on cultural comparison in PASS. It may

104 - British Journal of Learning Disabilities Vol. 23 (1 995)

also relate to the fact that PASS involved assessment by external observers while the other measures used mem- bers of staff as the source of the information.

Support and Development The third principle emphasised in the AWS includes

a commitment to help people with learning disabilities develop to their maximum potential. Since the earliest attempts to evaluate the quality of services for people with learning disabilities, developmental gain has been recognised as a central criterion. Certain processes such as use of IPS, goal setting and teaching programmes would be expected in settings keen to promote individ- ual development in an organised and structured way. In the three settings which had IPS, they were either out of date or rarely referred to as a source of guidance for day- to-day activity. Six of the settings had a system whereby residents took turns to stay at home for a day rather than attend the available day service, with a view to working intensively on household and community activities. Sev- eral settings worked towards residents’ independence on an ad koc basis. However, none of the 15 settings system- atically assessed abilities or took a programmatic approach to promote personal development.

The right to receive support to ’. . . live as indepen- dently as possible . . .’ was explicitly stated in the third AWS principle. Observed interaction between staff and residents showed that each person received some contact from staff for between 2% and 31% of the time. The aver- age was 14% or eight minutes per hour. However, less than a sixth of this involved directly assisting residents to do activities. That is, 85% of interactions comprised ordinary conversation which, although companionable, especially under the circumstances where interaction between residents was often limited, did not reflect a primary function of support to residents to be as active as possible. Even residents with the most severe dis- abilities received low support relative to their needs. Indeed, the support-need discrepancy was probably greater for these residents than their more able counter- parts. In light of this, the findings about the extent of their participation in activity described earlier are not surprising.

Overview Comparison of outcomes found in these houses in

South Wales with those reported for housing services in the broader British deinstitutionalisation literature showed them to be a fairly typical sample (see further discussion in Perry & Felce, 1994). Good quality ordinary community housing stock provided the physical context for the services studied. Houses tended to be decorated and furnished to a high standard and in a homely way. House management procedures have certainly moved away from de-individualising practices associated with institutions, and individuals appeared to exercise some degree of control over their lives. Many residents also participated in a range of community activities. The con- cept of ‘an ordinary life in an ordinary street’ (King’s Fund, 1980) seems to have been partially operationalis- ed.

However, one might have expected more, given the far reaching ambitions espoused in the AWS principles,

the relatively good resource context and the usual assumptions that more recent developments maintain and refine the strengths of those which went before. In keeping with an extensive research literature, residents still had impoverished social lives; true social partici- pation as a result of community location appears to remain a largely unfulfilled aspiration. As reflected in the dearth of individual plans, services did not have established methods by which to focus on individual need nor did they have formal strategies to address spec- ific areas of development where these were recognised. Residents received minimal support for involvement in purposeful activity despite living in settings conducive to activity and despite a high investment in staff who were generally referred to by the title of ’support work- er’. Moreover, it was emphasised in the AWS that the principles stated applied to all people with a learning disability, however severe. The results showed that much of the variation in the quality of outcomes for resi- dents was related to their level of disability, with the more severely disabled people tending to come off worse.

In conclusion, the sample of housing services studied in South Wales lived up to the AWS principles to some extent. Certainly these settings offered residents a better quality of life than they would have received in larger community units or hospitals, if we compare the out- comes reported here to those found for these other types of setting in previous research. However, there is also some way to go before outcomes can be said truely to measure up to the aspirations of the AWS. Moreover, there is no ground for concluding that resident outcomes were more favourable than those reported for earlier projects (see Perry & Felce, 1994). Indeed, comparing like with like, that is taking staffresident ratios and the rela- tive severity of learning disability into account, we con- clude that the lessons from the first demonstration pro- jects have been inadequately followed.

Many of these demonstration projects had features in common other than small-scale and community location. For example, there was always a clear expression in ser- vice mission statements of a committment to staff sup- port for individuals’ involvement in purposeful activity. Timetabling of household, personal and community activities and staff availability was carefully planned so that each individual had daily multiple opportunities for engagement in activity with the necessary support. Staff were trained to provide effective support which made use of procedures known to facilitate learning. First gen- eration projects were also characterised by the regular monitoring of quality of life outcomes. Attention to these details, summed up by the term ‘the active support model’ was also recommended in a wider review of the deinstitutionalisation literature conducted recently by Emerson & Hatton (1994).

The apparent lack of attention to staff training and working methods which take account of the particular support and training needs of people with learning dis- abilities may have been due to an underlying assump- tion that changes in the nature of the setting, such as in its location, the numbers of staff and the replacement of the ‘medical’ model with a ’social care’ model, and the espousal of new values would naturally lead to the out- comes desired. If ever made, this assumption has been

British Journal of Learning Disabilities Vol. 23 (1 995) 105

found to be wanting. We now detect a resurgence of interest in how to define the staff support task and estab- lish the conditions by which the level of help which indi- viduals need can be delivered to create opportunities which were previously denied.

Acknowledgement

Welsh Office/Department of Health.

Correspondence Any correspondence should be addressed to Jonathan

Perry, WCLD, Applied Research Unit, Meridian Court, North Road, Cardiff CF4 3BL.

This research was conducted under a grant from the

References

Blunden, R. (1988) Quality of life in persons with disabilities: Issues in the development of services. In R.I. Brown (ed.) Quality of Life for Handicapped People. London: Croom Helm.

young adults with profound handicaps following discharge from hospital care into a ’second generation’ housing project. Mental Handicap Research 1, 49-74.

Community Care. (1994) Reversal of Fortune. 7 July. Emerson, E. and Hatton, C. (1994) Moving Out: The Impact of

Bratt, A. and Johnston, R. (1988) Changes in lifestyle for

Relocation from Hospital to Community on the Quality of Life of People with Learning Disabilities. London: HMSO.

Felce, D. (1989) Staffed Housing for Adults with Severe and Profound Mental Handicaps: The Andover Project. Kidderminster: BIMH Publications.

Heal, L.W. and Chadsey-Rusch, J. (1985). The Lifestyle Satisfaction Scale (LSS): Assessing individuals’ satisfaction with residence, community setting and associated services. Applied Research in Mental Retardation 6,475-90.

King’s Fund (1980) An Ordinary Life: Comprehensive Locally- Based Residential Services for Mentally Handicapped People. London: King’s Fund Centre.

Lowe, K. and de Paiva, S. (1991) NIMROD: An Overview. London: HMSO.

Perry, J. and Felce, D. (1994) Outcomes of ordinary housing services in Wales: Objective indicators. Mental Handicap Research 7(4), 286-311.

the dimensions of the quality of care in small community residences. American Journal of Mental Deficiency 85, 188-94.

Welsh Office (1983) The All Wales Strategy for the Development of Services for Mentally Handicapped People. Cardiff Welsh Office.

proposed new term for the principle of normalization. Mental Retardation 21, 6, 234-9.

Wolfensberger, W. and Glenn, L. (1975) Program Analysis of Service Systems: Handbook and Manual (third edition). Toronto: National Institute on Mental Retardation.

Pratt, M.W., Luszcz, M.A. and Brown, M.E. (1979) Measuring

Wolfensberger, W. (1983) Social role valorization: A

Please mention British Journal of Learning

D isa bi I i t ies

when answering advertisements

~

International Advances in Research and Practice Global Problems - Local Approaches

10th World Congress of the International Association

for the Scientific Study of Intellectual Disability

(IASSID)

8-13 July, 1996 Helsinki, Finland

The Program Committee invites researchers to sign up as convenors of a symposium and to include up to three other presenters, rep resenting, if possible, a number of countries.

Symposia topics include: genome research/genetics biomedical aspects epidemiology specific syn- dromes prevention neuropsychology social inter- action transition * quality of life * etc.

8 For further information please contact: Prof. Trevor R. PARMENTER, Unit for Community Integration Studies, School of Education, Macquarie University, Sydney NSW 2109, AUSTRALIA.

Fax:+61-2-850 9397 E-mail: tparm@ted.educ.mq.edu.au

Ph. +61-2-850 8706

I For second announcement and call for papers please contact: Kansalaiskonsulti t, ’I ASS1 D’, P.O.Box 762, FIN-00101 Helsinki, FIN LAND . Fax: +358 0 492 810

Hosted by Finnish Association on Mental Retardation, address: Viljatie 4 A , FZN-00700, Helsinki, Finland.