Let X stand for an adult day centre in what was one of the most troubled and deprived areas in the province. The centre was not purpose-built. Rather, it was adapted. Nearby is a heavily fortified police station. And, apart from housing estates, that’s about it. There is no supermarket or leisure centre within walking distance. Nearly all the families of clients (and some staff) have been directly or indirectly touched by the troubles. One former client, who has a mild learning disability, and his widowed mother, used to live in a house, now boarded up, not far from the centre. I visited this lady, a gentle soul, when she was going through a particularly bad patch. Two of her daughters were heavily involved with paramilitaries. Her son, an only boy, craved excitement and used to disappear from home for hours on end in the evenings. In the front door frame were holes made by stray bullets.

Let Y stand for an adult centre in a pleasant seaside town little affected by the troubles. The building, which dates back to the nineteenth century, and which has undergone much addition and modification, was originally the home of a prosperous businessman. There are two supermarkets within walking distance. There is also a very attractive leisure centre but it’s farther away. To my knowledge only two families have been affected by the troubles, one of them when they were living in Belfast.

Three years ago, a couple of colleagues and myself completed the Adaptive Behaviour Scale (ABS-RC:2; Nihira et al., 1993) on all clients (N = 90+) at centre X (MacKay et al., 1997). Now, I have neither the time nor the inclination to describe the ABS in detail, so if you’re not familiar with it, too bad. Part One yields three factor quotients: Personal Self-Sufficiency (PSS) which, as the title suggests, denotes an individual’s level of ability in independent functioning. Community Self-Sufficiency (CSS) has to do with an individual’s ability to interact with others and to use community resources; Personal Social Responsibility (PSR) denotes personal and social responsibilities which must be maintained to satisfy the interpersonal side of adaptive behaviour. Factor quotients are standard scores based on a distribution having a mean of 100 and standard deviation of 15.

The CSS and PSR distributions were reasonably symmetrical. But the PSS distribution went lollopy: it was bimodal, the higher peak hitting 130 plus. Ninety five per cent of the clients had higher PSS than CSS quotients. In just over half the cases the difference was more than one standard deviation, and in a quarter it was more than two standard deviations. Someone suggested that a major problem contributing to the comparatively poor CSS scores was the restriction of movement in dangerous neighbourhoods. For example, carers of clients who were quite capable of coming to the centre under their own steam insisted that centre transport be provided, otherwise their charges would not attend.

There the matter was allowed to rest for a while. May I digress for a minute? One curious, minor finding was that quite a number of the highest PSS scorers were less than proficient when it came to having a bath. Relatively few got a score of six, "Prepares and completes bathing unaided". At first, we thought this was because parents were worried about safety - scalding water and so on. But no. There were other reasons. Some clients would use a full bottle of shampoo or tin of talc at one go. Others would stay in the bathroom for a month, if allowed. In a few cases, and we hadn’t thought about this, bathing was less frequent than washing and dressing, so there was perhaps a lack of practice effect.

Anyway, from shampoo and talc, let’s get back to the main story. About a year and a half ago, a colleague and I repeated the ABS exercise in centre Y, which, you’ll recall, is in a quiet seaside town. It involved sixty one clients (MacKay and Kidd, 1999). By a sheer fluke, the two centre populations were comparable in terms of age and ability (ICD-9) levels, gender and Down syndrome numbers. And guess what? The CSS and PSR distributions in centre Y were reasonably symmetrical but the PSS distribution, although not as frizzy as in centre X, was still pretty erratic. Ninety two per cent of the clients had higher PSS than CSS scores. In half the cases the difference was more than one standard deviation and in thirteen per cent it was more than two standard deviations. So our hunch that restriction of movement in dangerous neighbourhoods might in part account for depressed CSS quotients in centre X went down the pan.

At this point, we go back upstairs to the bathroom. Only a few of the highest PSS scorers obtained a score of six, "Prepares and completes bathing unaided". Alright, so the reasons proffered earlier in the case of centre X for poor performance may apply to centre Y as well, but I think someone ought to look at this problem a bit more closely. It won’t be me, I’m a showerman myself.

We returned to the centres to ask staff about ABS Part One items which have to do with activities in the community, activities away from home. We selected eight: Sense of Direction (e.g. "Goes around ground of facility or home alone"); Transportation (eg "Rides in taxi independently"); Mobility (eg "Can go to school or work independently"); Safety on Street (eg "Looks both ways and waits as necessary before crossing the street"); Errands (eg "Goes on errands for simple purchasing with a note"); Purchasing (eg "Makes minor purchases without help"); Shopping (eg "Has general credit cards or other credit arrangements"); Leisure Time Activity (eg "Organise leisure time activities on a fairly complex basis - going on a fishing trip etc."). Since no client in either centre has a driving licence, there was no point including the item.

We selected for attention those clients whose PSS quotients were 121 and over (Superior and Very Superior - ABS categories). In centre X, thirty eight candidates qualified. Of these, six are doing extremely well and therefore obtained high scores on the items we choose. For example, Jean (a pseudonym) is thirty years old, has Down syndrome, lives at home with her parents and two siblings. She attends the centre two days a week, travels independently to her work placement in a large store the other three days. She has excellent social skills and a bubbly personality. Her parents encourage her to be as independent as possible. She does not want to live on her own. The main factors affecting freedom of movement in the remaining cases are: poor physical health (4); mental health problems (3); personality problems (6); inappropriate behaviour (4); other (4); overprotection by parents/carers (11). These categories are not, of course, mutually exclusive.

In centre Y, twenty clients met the PSS criterion. Three are doing extremely well in terms of movement in the community. For example, Tina (a pseudonym) is the only married individual in either centre; she travels independently by train and taxi, does all the shopping (she and her husband live semi-independently). The main factors affecting freedom of movement in the remaining cases are: poor physical health (2); personality problems (2); other (4); overprotection by parents/carers (9).

Staff at both centres meet regularly with parents and carers, and encourage them to allow their sons and daughters greater independence. Some parents go along with the idea of work placements but are reluctant to consider greater independence in leisure time. This holds especially for parents who are getting on in years.

We were very interested to note what can happen when responsibility for a client passes from one relative to another.

For years Tony had a history of challenging behaviours, especially at home. He was often non-compliant and stubborn. He comes from a big family in which there was a lot of friction. Mother was constantly at odds with the children. She remarried when about sixty years old and went to live in a town some eighty miles away. A married sister took over Tony’s care. Since then, there has been a major transformation in the man. He does not threaten violence any more, does not taunt others. Instead, he is "remarkably" agreeable, co-operative and cheerful.

 

Sadly, though, our findings in the case of some clients in both centres seem to be in line with those reported by Flynn and Saleem (1986) and Cattermole et al. (1988), the latter concluding that adults with a learning disability living at home,

. . . were given only limited autonomy in very basic aspects of their lives, their parents exercising a large degree of control and protection (page 55).

 

This is a pity. In the USA, where the ABS was standardised, adults with a learning disability must enjoy a greater degree of independence than adults in this country. And, presumably, that applies to the minor matter of bathing as well.

More research is needed - I only said that because everyone else does.

D. N. MacKay

I should like to thank Mary Drain and Edna Clarke of the Department of Psychology for all their help with this paper.