CHILDREN & SOCIETY (1990) 4.1 104-108

Communitv care for : issues adults wi thlbisabili ty

for social services departments PHILIP MADDEN

This paper was read by Alan Long, Devon Social Services, in Philip Madden’s absence due to illness

Introduction OCIAL services departments (SSD) are yet again on the threshold of S major change. The forthcoming Children Act will increase the pressure

for detailed and more time consuming work in the already predominant field of child protection. The revenue implications of the poll tax are very unclear. The Government’s proposals in relation to adult services following the Griffith’s report will mean substantial differences in the organisation and delivery of services.

There will therefore need to be concerted efforts to ensure that SSD roles and responsibilities in relation to young people with disability are ‘kept on the agenda’. This is particularly true given the proposed split of services into those for children, and those for adults. Children’s services will remain intensively focused on child protection and child care work, and thus children and young people with disability could easily fall between two stools. This is even more of a challenge given that social services departments’ track record in this field is hardly impressive (though that criticism is not of course unique).

Whilst there are isolated pockets of good practice, social services departments have, in their response to the needs of young people with disability, been;

Fragmented; many young people and their families have had patchy services, or no services at all. There has been little coherence of purpose, and few attempts at maintaining accurate and appropriate

i.

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information to measure and plan for need. Equally, it is rare to find a rigorous allocation of key specialist staff who have a comprehensive and wide ranging mandate. Unimaginative; to take the example of day services, where these do exist they can be ‘herd-like’, miscellaneous units covering all ages and too wide a range of conditions.

The same criticism can apply in relation to day services for young people with severe learning difficulties - recently scathingly criticized by the Social Services Inspectorate as lacking in both vision and efficiency. Such services are all too often segregated - rarely, for instance, having an active link with further and continuing education in the provision of appropriate modular courses. Most important of all, they have little sense of expectation and movement.

iii. Impozlerished; it is bad enough that services are lacking in inspiration. At least where they do exist, they offer some occupation, and relief for carers. There are, however, substantial shortfalls in the volume of provision. MENCAP’S survey in 1987 estimated that at least 10,000 day care places were needed. The position for young people with other disabilities is scarcely better. There are numerous examples of young people with special needs leaving school and having nowhere to go. One is reminded of the exchange between the two old ladies coming out of a restaurant in the film ‘Annie Hall’:

ii.

‘Such an awful meal’ said one. ‘Yes,’ said the other ‘and, such small portions.’

Nor is the problem confined to day services. Young people with disability have other rights and needs to independent living, domiciliary help, counsel- ling, information, and so on. Here too, social services departments have rarely accepted or been able to deliver their responsibilities.

Recent developments Nevertheless, all is not doom and gloom. There is tremendous potential for improvement.

Practice has improved, however much further there is to go. People are beginning to adapt the service to the individual rather than vice versa. Dignity and choice are beginning to be reflected in deed as well as rhetoric. But people are not good at publicising success. Provided the ideas are sufficiently well publicised, they will inspire and spread, so that today’s inspiration becomes tomorrow’s standard practice. The main spur to progress is expectation.

Some practice developments mirror the structural, post Griffiths type

PHILIP MADDEN

changes alluded to earlier. For example, the ‘individual programme planning’ system, now at least nominally common, and often genuinely realised, in services for people with severe learning difficulties is in essence meant to be arrived at in conjunction and agreement with the client. The very process is an improvement, regardless of outcome.

The Canadian idea of ‘service brokerage’, now being proselytised by the more radical groups in the country, is based on the notion of a negotiated, flexible, person-specific programme, using an independent broker who is separate from the direct service providers - someone who can both represent and purchase. These ideas readily reflect the more welcome aspects of the new community care proposals - the notions of contracts, customised services, and packages of care.

Whether via the market place language of ‘customer’, or the humani- tarian language of dignity of choice, such changes are fundamentally concerned with listening to the individual, rather than the label, and respond- ing and shaping services accordingly. This links with the burgeoning consumer movement - there are an increasing number of situations where politically sensitive and accountable social services departments are having to respond, however, sometimes unwillingly to the wishes and voices of parents, carers and people with disability themselves. The relationship between parents and all young people is constantly having to be renegotiated. But parents can still speak validly for and with their sons and daughters even as they grow, and often it is indeed the parents who galvanised by desperation, are the most effective in producing change. However, in whatever form it manifests itself, the voice of the consumer is here to stay - and a voice that will create its own dialogue since you cannot give a person a voice and tell him or her what to say.

Another reason why progress may be more possible is legislative - viz. Sections 5 and 6 of the Disabled Persons Act, 1986. For the first time it will require that children and families with special education needs be referred to social services departments by education departments for assessment as to whether they are disabled under the adult definition of disability contained in the 1948 National Assistance Act (2.e. that they have a ‘permanent and substantial handicap’) and then for assessment about the range of needs they have. Such a process does not in itself bring resources, and at worst could be a game of bureaucratic ping pong. But that is not the spirit of the Act, and it is hoped that the very establishment of such a system will become a powerful structure and catalyst for proper transitional planning and improvement.

A transitional planning system There are a number of components of a good transitional planning system.

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Firstly, a commitment to an annual assessment - starting from the time of the young person’s statement review around their 14th birthday. This would be administratively driven by the education department.

Then, there is need for a multi-disciplinary analysis of the range of services a family may require: educational, health, personal and social needs are intertwined; problems in one area affect another, achievements in one sphere need to be carried over.

Thirdly, there should be a specific ‘individual transitional plan’, with named responsibility for implementation and the establishment of a single point of entry into the adult world. Such a system does not have to be bureaucratic or excessively cumbersome. Nor does it have to be expensive - it will require staff time and probably specific extra resources and this will have to be argued for, but the number of statemented children who will be disabled under the adult definition of disability referred to earlier is actually a minority percentage of statemented children, most of whom are ‘emotionally or behaviourally disturbed’. Of course, I am not suggesting that the latter group of children have no adult needs, but that they must be separately argued for.

As I have stated, such a system of planning and provision is not the sole responsibility of social services departments. In addition, the specific key worker could be drawn from a variety of disciplines - depending on the particular need, or simply on who gets on best with the young person. Nevertheless, as part of its general duties under the 1986 Disabled Persons Act, the primary responsibility for orchestrating such services clearly lies with the social services department from the time the young person leaves full-time education.

The social services role Apart from orchestration, there is much that social services departments can do ‘in house’ to make improvements.

Infomation They can provide clear, accurate, attractive available and ethnically appro- priate information. Many young people with disability and their families (and professionals in other agencies!) are unaware of rhe potential range - counselling, advocacy, welfare benefit advice, respite services, help in the home with domestic tasks or aids and adaptations. There is a major task in producing this information in a clear and accessible form.

Identifying specialist workers SSDs should earmark time for specialist staff to link with other agencies

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operating in the same area of disability. Such workers would need to be able to have knowledge of and link in with the social networks in the neighbour- hoods in which the young people live, and the wider the catchment area for the disability service the harder it is to do so.

Nevertheless, any diminution of local expertise is more than outweighed by the knowledge of, and contribution to the network of agencies and resources that are part of the specialist service.

Dzsability policy There should be an active anti-discriminatory policy, in particular a pro-active target of employing people with disability thus providing both a range of places and setting an appropriate example.

Taking initiatives at senior management level To complement the ‘individual transitional planning’ system arrangements need to be made for collating information for planning and service develop- ment, and creating regular planning forums with education and health counterparts.

Modular programmes Further education colleges and employment organisations should be engaged to produce complementary modular programmes so that individual people with disability do not have to make limited or ‘all or nothing’ choices about placements or patterns of services.

Joint training This should be established both with other agencies and, most importantly, with parents, carers and the young people themselves. It may not be possible to put on such ventures frequently, but every area would be able to do something.

Conclusion This is quite an agenda for social services departments, just as there are equally full and challenging agendas for other agencies. There is no sine qua non - that way lies paralysis. Progress may be more incremental and episodic than we would wish. But progress is possible, and must be made where it can. Good ideas and practices can spread upwards and outwards.

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