MENTAL HANDICAP VOL. 16 MARCH 1988

Assessing the service needs of people with mental handicaps:

THE JAY PROJECT PHASE 1

David Freedman

The Jay Project was set up to devise a method for assessing the needs of individuals with mental handicaps, with particular reference to the services that they were then receiving and to identify future service needs. It presented service needs from the point of view of the individuals, rather than trying to tit them into current service provision. Assessments covered all the major areas of life. Findings were presented to a Steering Group whose members were drawn from all the relevant local statutory and voluntary agencies. It was hoped that the Project would be able to inform service planning both for the individuals assessed and on broader planning levels, would create a multi-agency forum and approach to services, and would help to improve inter-agency contact and cooperation.

In 1982 services for people with mental handicaps in south Southwark, London were patchy and uncoordinated. A few people in the voluntary sector recognised the problem and began considering how the situation could be improved. During the summer they had discussions with colleagues in the major statutory agencies in order to try and devise a project that would help to bridge some of the gaps. In March 1983 they formed themselves into a Steering Group and sought advice from King Edward’s Hospital Fund for London. The Jay Project (as it became known) then successfully applied to King’s Fund for a grant to employ a research worker to undertake a pilot study. A member of King’s Fund Centre staff agreed to serve on the Group. Later, additional funding was received from the Spastics Society; Camberwell Health Authority funding the final two months of Phase 1 of the Project. The Research Worker began in October 1983.

The Project had three main aims:

0 to improve relations between the agencies by focusing on individuals and to help foster a multi-agency approach to service provision;

0 by focusing on individuals, to try to improve services through an individual-centred, incremental, “bottom- up” approach to service provision (rather than trying to fit individuals into existing services or thinking in large numbers);

0 to develop a method of producing information relatively quickly, that would be of value to a wide range of service providers.

Structure and management The Steering Group included the key people working in

the area, in both the statutory and voluntary sectors. In the early stages of the Project the function of the Group was to take the broad policy and organisational decisions. Later it made service recommendations based on the results of the assessments carried out, and dealt with any matters arising from the assessments. It met about once every six weeks.

A Research Advisory Group (RAG) was formed as a sub- group, which met every two or three weeks. The RAG’S function was to supervise the activities of the Research Worker in detail, monitoring his induction, the compilation of the list of individuals to be assessed, the design of the questionnaire and assessment formats, and the piloting of the project. It subseqently supervised the assessments in great detail and offered much general support to the Research Worker.

Members of the RAG had particular expertise in research as well as in mental handicap theory and practice. Once assessments were being processed additional members joined this sub-group and they became the Project’s key contacts in the two most relevant local statutory agencies: the District Health Authority, and the Social Services Department’s area office.

Phase 1 of the Project was administered by Hummingbird Housing Association Limited.

Method Brief details are set out below. A fuller description is

contained in a follow-up article to be published in the next issue of this journal (Freedman, 1988).

Definition of mental handicap The definition of “mental handicap” chosen specifically

for the Project was: “individuals currently or formerly in receipt of mental handicap services”. The Project sought only to assess the appropriateness of services provided to individuals already categorised as being mentally handicapped. It did not test individuals’ capacities directly, or categorise people as to whether they had a mental handicap or not.

Data collection Data were collected by means of interviews with the

individuals, their close family members (where in contact) and/or friends, and professional workers who knew them well. The purpose was to elicit their knowledge, opinions,

~ ~~ ~~ ~

DAVID FREEDMAN, was the Research Worker on the Jay Project Phase 1 and Senior Research Worker on Phase 2.

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MENTAL HANDICAP VOL. 16 MARCH 1988

and perceptions on a wide range of subjects. Additionally, records were consulted where available.

Assessment design and contents From the data obtained assessments were drawn up,

categorised into three sections: basic demographic data; a synthesis of information gained from the interviews; and “service needs”, expressed from the individuals’ points of view.

Unlike many assessments which focus in depth on a particular area and collect data by direct testing, the Project assessments were much broader in design. They included socio-historical areas (such as life history, education, employment, leisure, finance, benefits, relationships) as well as more tradit ional areas (such as health, physical independence, domestic skills, communication skills); thus presenting a broad, relatively superficial, picture of each individual.

People studied The study was conducted in the major part of The Lane

Ward, which falls within Social Service’s Area 5 of the London Borough of Southwark. This Ward was chosen because it was demographically “typical” of the Borough.

The criteria for people to be included in the survey were: either that they currently lived in the area or had done so at the time of admission into care; and that they met the definition of “mental handicap” as detailed above. It was also agreed that people in care whose address at the time of admission was not from the selected area but whose next-of- kin were currently living there should also be included because there would be service implications if they moved close to their family.

Results The method of data collection and interpretation used,

within a framework that focused on individuals rather than on a comparative survey, meant that much of what emerged was “qualitative” rather than “quantitative”.

Hard data Phase 1 of the Project can be divided into two periods: four

and a half months for induction, register collection, design of questionnaire and assessment schedules, piloting and amending; and 11 months for actually carrying out the assessment work. Interviews usually lasted for about two hours (excluding interruptions). With travelling time added on this generally meant a maximum of two interviews per day. At least three interviews were conducted for each assessment. Additional time was spent studying available records.

The population of the study area in the 1981 census was 4,870. The number of people discovered in late 1983 who fitted the survey criteria was 39. Three people living in Darenth Park Hospital, Kent, were also included because their next-of-kin had moved into the area. The total number of people studied, therefore, was 42. The 39 people found gave a prevalence rate of mental handicap within the population of 0.80 per cent; with the additional three people this rose to 0.86 per cent. Dupont (1981) details 11 significant epidemiological studies of children aged between 10 and 19 carried out this century which give lower prevalence rates, of between 0.27 per cent and 0.43 per cent (although three give a rate of 0.36 per cent and a further three of 0.37 per cent).

The Lane Ward, now in Southwark, falls within the old

London Borough of Camberwell which also forms the area for a long-term study being conducted by the MRC Social Psychiatry Unit. Dupont gives its prevalence rate as 0.37 per cent. T h e current Project, however, using a service definition, found a prevalence rate of more than double this figure. If the part of The Lane Ward in the Project is not a freak, then the significance of the prevalence rate for service planners is that many more people could return from hospitals and other homes and legitimately make demands on the mental handicap services than is currently envisaged. Given the policy of community care and plans for the closure of large mental handicap hospitals this is quite a likely prospect.

The study found 11 adults actually living in Southwark: eight with their families and three in Social Services Department hostels. Of the others 17 were in long-stay hospitals of whom six were in Darenth Park (three by origin and three added - where Camberwell Health Authority is active), six in Leavesden, four in St. Lawrence’s, and one in Princess Christian’s Hospital. Another three lived in private a n d v o l u n t a r y h o m e s , a n d o n e was i n P a r t I11 accommodation. It was the unexpectedly large number of people living outside the Borough that made the prevalence rate so high.

There were nine individuals of school age (that is, up to and including 19 years), eight of whom attended schools for children with severe learning difficulties and the other one attending a school for children with moderate learning difficulties. Six lived with their families and three lived in hostels run by Southwark Social Services. One pre-school child lived with relatives.

With the exception of the woman living in Part I11 accommodation the assessments carried out highlighted serious deficiencies in service provision.

Qualitative information As the study focused on individual assessments, not on

general implications for service providers, there follow some examples of findings on individuals and consequent recommendations of the Steering Group. None of the examples is “typical”. Each person’s story was different. The examples given, therefore, cannot be taken as showing the full spread of what was found.

Example 1. DESCRIPTION: A young man, aged 2 2 , who had been to a local school for children with severe learning difficulties and then to a local college for a further two years was no longer in receipt of any services because his family did not want him to to the local ATC and no other option was offered. The family felt “let down” by Social Services. ACTION: Refer to social worker at area office for further contact, if unsuccessful refer to Camberwell CATT (Community Assessment & Treatment Team) for input by appropriate member. RESULT: CATT member made contact and young man was registered at ATC in order that he could attend appropriate adult education classes in centres other than the ATC. Additionally, the local Brjdge-Zn* scheme made contact and a worker takes him out to leisure and educational activities.

Example 2. DESCRIPTION: A woman of 38, attending the ATC, living in a Social Services hostel, with frequent contact with her mother aged

*Nine Bridge-In schemes are funded by the MSC and run by MENCAP. Full time organisational staff and support workers make contact with families and, if appropriate, rake the person who is handicapped out for lcisureieducational purposes.

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MENTAL HANDICAP VOL. 16 MARCH 1988

78 and her aunt 68, appeared relatively able. She was not interested in attending classes or achieving much and appeared very passive. She had problems with certain hostel rules. ACTION: Social Services member of Steering Group to instigate mechanism for a full case review at the ATC. RESULT: Unclear, but no immediate change in circumstances although preparation for moving into a hostel supported flat was being made.

Example 3. DESCRIPTION: A boy, aged nearly 16, had variable skills and socially “inappropriate” behaviour towards women. ACTION: Refer back to Social Services area office for social worker to consider working with CATT regarding his behaviour towards women. RESULT: When aged 16 CATT member began work with him.

Example 4 . DESCRIPTION: A girl, aged 3 years 8 months, attended a school for children with severe learning difficulties that was convenient before the family moved, four months prior to interview. The gir! now has a ’bus journey of over one hour each way. She falls asleep on the journey and is then awake until very late at night. The family does not want her to change to a nearer school. ACTION: Contact health visitor and clinical psychologist for help with sleep patterns. RESULT: Social worker has raised the issue of the ’bus route a number of times but to no avail. Psychologist has begun work with the family over the girl’s sleep patterns and the girl is being prevented from falling asleep on the ’bus. Social worker and child psychology services need better liaison.

Example 5. DESCRIPTION: A woman, aged 34, had been resident in Darenih Park Hospital for eight years, the general consensus being that, since admission, her level of skills and mental health had deteriorated. ACTION: New consultant psychiatrist to reassess her on taking up his appointment. Camberwell Health Authority to consider her for a flat scheme to be in operation from September 1984. CATT needs to contact Social Services area office for a social worker to be allocated. RESULT: Unknown, but the research worker continued to visit Darenth Park Hospital until the autumn of 1986. He frequently saw the woman walking around the hospital and would stop for a brief chat. From these superficial meetings i t seemed to him that her condition had continued to deterioriate.

Example 6. DESCRIPTION: A man, aged 42, resident in St. Lawrence’s Hospital for 33 years, at the time of assessment had been living on a locked ward for seven months because of an obsession with shoes, which he stole at every opportunity. He is a loner and communicates little. Therapy consisted of removing the opportunity to steal shoes and withholding food (which he very much likes) as a form of punishment when he stole. There was no evidence to indicate that the man was able to link the “punishment” and the “crime”. ACTION: Assessments sent to all interviewees m d to the hospital consultant psychiatrist, director of nursing services, and social worker. No direct action. RESULT: Unknown.

Example 7. DESCRIPTION: A woman, aged 57, living in a secluded private home, funded by local authority, having a high level of independent living skills and craft skills. Prior to admission into care she had held a job in industry for several years. Available records did not inform why she had gone into care. The home considered that the major “problem” was that she had become emotionally attached to female members of staff several times. This had been considered undesirable behaviour and she had been separated from those staff. It was not perceived as a strength that the woman was capable of forming positive emotional attachments. The woman had said that she wanted to return to parenth Park Hospital but her next-of-kin was determined that she should not leave the home. ACTION: Send a copy of the assessment to the interviewees. No direct action by Steering Group. RESULT: Unknown.

Discussion The Project provided a series of broad-based profiles of

individuals that had not existed before. These could be used for various purposes: as shared knowledge for all individuals and agencies involved; as a shared document to which more detailed information could he added; and as a stimulus for action.

T h e people assessed divided crudely into two service g r o u p s : “ local” people w h o c a m e wi th in t h e service provision of the agencies represented on the Steering Group; and those in long-term care who received services from other authorities. T h e potential for any direct action with most of the people in long term provision was highly complicated, if not impossible. Even where members of the Steering Group could have taken direct action this rarely occurred because it was considered that , although the assessment indicated a poss ib le n e e d f o r f u r t h e r inves t iga t ion , i t was itself insufficient to warrant direct action.

By including everyone from a particular area the Project assessed many people who did not have pressing special needs, were nut obviously in a crisis, and did not have behaviours that were parricularly hard to manage. I t assessed people uho might usually have been overlooked or placed relatively low on a priority list for services. It showed that such “middle of the road” people with mental handicaps faced just as many problems and service deficiencies as those with higher profiles.

O n a n individual level the assessments did not replace case conferences or the need for fur ther input by specialists prior to taking action; b u t they did highlight serious service deficiencies a n d present them to people who were in a position to take action if they saw fit.

T h e “service needs” were written from the individuals’ perspective. If all the stated needs were met it might be supposed that they would be receiving services that were ideal for them as individuals. It was recognised that service providers could not possibly achieve this in the immediate future. Consequently, a n incremental approach to service improvements within t h e existing service s t ructure was adoprcd by [ h e S teer ing G r o u p in m a k i n g i t s service recommendations. F r o m the service providers’ point of view the Project acted as an external form of service evaluation which made discrete spot checks o n individuals and helped to inform rhem about the quality of the services they were provid ing f r o m t h e consumers’ po in t of view. ( F o r a discussion of what the Project meant by the term “need” see Freedman, 1988).

On a broader sphere, the Project was able to inform planning in two main ways. Firstly, it offered concrete, detailed examples of individuals’ lives to people who were operat ing at a broad, abstract level. Southwark has n o comprehensive register of all the people for whom its mental handicap services are “responsible”. T h e Project, therefore, provided a comprehensive register and detailed assessment of individuals f rom a particular area. Secondly, a picture emerged which was able to inform service planners when devising broader strategies. At the broadest level it meant Southwark revising its figure of the total number of people with mental handicaps who may require services f rom 600 to 1,000, the consequences of which could be substantial.

T h e s t ructure of the Project enabled the Steering Group to create a forum for discussion not only of individual needs but also of individual circumstances. T h i s often led to a much b r o a d e r d iscuss ion , s o m e t i m e s on general issues a n d s o m e t i m e s on i s s u e s p a r t i c u l a r t o s o u t h S o u t h w a r k . Examples of the former k ind were: the problems of the transference of young people f rom children’s services to a d u l t se rv ices , i n c l u d i n g t h e genera l fa l l ing away of ind iv idua ls ’ services a f t e r t h e s t a t u t o r y provis ion o f education; the inappropriate placing of people in residential

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care, such as in particular hospitals and particular wards within them; the problems encountered over the use of private and voluntary homes; the difficulties of adults living with elderly parents. Examples of the latter included: why one Social Services’ children’s hostel was almost entirely filled with young adults; problems within the Health Service over the transfer of people from children’s community services to the adult community services; problems with a Social Services hostel for adults; and inadequate social worker provision for adults.

By focusing on individuals in the context of an independent project, administrators and managers from the different agencies were able to join in free and frank discussion, based on a comprehensive level of detailed information that had not been available to them previously, without feeling that what was said could have direct consequences for their particular agency. The independence of the Project meant that interviewees also felt free to talk frankly because there was no direct link with a particular, powerful agency on which they depended either for services or employment.

There have been various “spin-offs” from the Project. A tangible spin-off is that Hyde Housing Association (which now incorporates Hummingbird Housing Association) has bought three houses within the Phase 1 area. Some of the accommodation will be allocated to local people with mental handicaps, either to live in independently or with their families. People assessed during the Project will be amongst the first to be considered for places. This could be very valuable as none of the locally resident adults assessed had homes of their own and some of the children also had housing problems.

A second, less tangible spin-off is that agency staff have become much more aware of the value of talking together, and of mutual cooperation and coordination. It is not being suggested that the Project was the cause of this growth. In fact the Project occurred as a result ofa growing awareness of the need for greater links between the agencies. It was an early mechanism, used where opportunities existed, which helped inter-agency contact and cooperation to grow.

A third spin-off was that at every meeting of the Steering Group staff from one agency met staff from other agencies whom they had been trying to contact and talk to confidentially without success. Meetings finished with

huddles of two, three, and four members discussing confidential business in a neutral location; another example of growing inter-agency cooperation!

Conclusions The Jay Project Phase 1 was more a success than a failure.

It did help to improve relations between the agencies on a personal level. I t was not able to make much direct improvement (if any) to the services received by the individuals assessed and, as there was no follow-up built into the design, i t was not possible to update the findings.

People living outside The Lane Ward were under the care of agencies not d i rec t ly involved in the Project . Consequently, it is largely unknown what response there was to their assessments. Even for individuals receiving services from agencies involved in the Project, the assessments were not comprehensive case conferences. Rather, they brought together information mostly already known, but not necessarily shared, into an unbiased form that could be shared bv service providers, families, and individuals.

The Project showed that a method could be designed from scratch and assessments carried out in a relatively short time. However, although i t could present issues and make recommendations on behalf of individuals the Project could not tell services how to do their job.

Acknowledgements lhanks are expressed to Ritchard Brazil, John Clements, Nancy

Korman, Ian MacDonald, Nikolas Rose, and especially Sheila Damon, for comments on earlier drafts.

REFERENCES Dupont, A. The definition and identification of severe mental

retardation. In Cooper, B. Assessing the Handicaps and Needs of Mental1.v Retarded Children. London: Academic Press, 1981.

I:reedman, D. Assessing the service needs of people wirh mental handicaps: methods used. Menral Handicap, 1988 (ia press).

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0 1988 British Institute of Mental Handicap 35