Day care for persons with profound multiple disabilities
This report, commissioned by the State Secretary for Health, Welfare and Sport, considers the value of day care for people with profound multiple disabilities. The State Secretary asked for advice on this matter in response to a campaign organized in 1997 by the VGN (an umbrella organization that works to promote care for the disabled). This campaign had focused attention on the qualitative and quantitative shortcomings in day care provision for people with serious mental disabilities. In the report, the committee describes the role it thinks day care should play within the general context of care for the mentally disabled, summarizes the known benefits of day care activities and indicates how ’customized day care’ might be provided.
In the committee’s view, people with profound multiple disabilities — i.e. people who are seriously disabled both mentally and physically — are more severely disadvantaged than any other group. The report therefore focuses on this group in particular. Having mobility problems and a reduced capacity for self-expression, such people are very difficult to care for properly. This is true not only in a general sense, but also in relation to day care (by which the committee, in line with most other commentators, means (a wide range of) planned, periodic activities taking place under professional supervision).
From the letter in which she asked the Health Council to report on this matter, it was apparent that the State Secretary was particularly interested in the effectiveness and efficiency of day care for people with disabilities of the kind referred to. In studying this problem the committee met with gaps in knowledge. A literature search showed that in the light of current thinking it is not easy to indicate exactly how the nature, amount and organization of day care activities influence the quality of life for people with profound multiple disabilities. This can to a large extent be attributed to the fact that the meaning of (changes in) their behaviour is very difficult to determine. Established models for investigating the effectiveness and efficiency of interventions provide little hold. It is known, however, that clients who do not receive day care are more likely to exhibit serious behavioural problems. Therefore, the committee felt justified in addressing the issue in a somewhat wider context. Regarding day care as an indispensable component of ’adequate care’, the committee looked at the provision of day care in relation to the general quality of life afforded to recipients. To be regarded as ’adequate’ under the Care Institutions Quality Act, care must be not only effective and efficient, but also client-oriented and appropriate to the client’s real needs. The committee decided to analyze day care provision on the basis of the latter two characteristics of adequate care. Given the correlation between shortcomings in day care and the risk of behavioural problems, combined with general opinions about a decent existence, day care is definitely required, whatever the most effective and efficient way of providing it might be. Hence, the committee supports the current policy of eliminating the backlog in day care provision.
As highlighted by the VGN, the issue of day care provision has both a quantitative aspect and a qualitative aspect. However, the committee does not believe that the two aspects can be linked in any simple formulaic way. In the committee’s experience, individual-oriented care is the correct approach, and the length and timing of day care activities are particularly important. It can be better to do certain things with a client every day at appropriate moments than to follow a routine programme from nine to four. Making suitable arrangements for each individual client is an intensive and time-consuming process that requires great expertise, patience and sensitivity on the part of the care providers, and sufficient resources.
Not enough is known to indicate which types of activity are best for particular groups of clients. Nevertheless, there is ’locally coloured’ professional experience, and remedial education programmes do exist, which can provide care providers and activity supervisors with a reference framework. Unfortunately, the way such programmes are implemented often leaves a great deal to be desired. Poor implementation is not only detrimental to the immediate interests of the target group, but in the long term also hampers the development of scientific understanding and the improvement of care. In view of this problem, the committee makes a specific recommendation: that the government and the caring professions should treat the care of people with profound multiple disabilities as a form of ’specialist care’. This expression, which has been chosen by analogy with specialist medical care, would be justified in the committee’s view, since such care requires special expertise of a kind that relatively few individuals and institutions possess. In this context, the committee would like to see closer regulation of this field. The committee favours a system based on a small number of expertise centres. These centres would have the job of giving consultations and of promoting the use of best practices in the field, the organization of evaluation and research programmes and the development of new forms of care.