Those of us conversant in the movie dialogues of the 1990s will remember the line from Pretty Woman, when the hero, Richard Gere, offers to buy an apartment for his call-girl girlfriend, Julia Roberts, to facilitate their relationship and take her off the streets. She replies blithely, ‘That’s only geography.’ Is there a sense that moving clients from congregated settings to community residential settings is ‘only geography’?
Congregated settings is the term used to describe the housing of ten or more service users, but despite the move to community care settings in recent years, many people with intellectual disability (ID) still reside in congregated settings.
The HSE recently commissioned a report on these large institutions and Time to move on from congregated settings: A strategy for inclusion” was published in June 2011. The findings of the report include 31 recommendations stemming from the conviction that congregated settings need to be closed down over the next seven years, and service users moved to a variety of community-based care residences. The issue for consideration in this article is how to avoid turning these community residences into mini institutions? Geography alone, as our heroine above suggests, is not sufficient to fundamentally change the nature of the care offered, or to realistically address the complex needs of our brothers and sisters with ID and/or challenging behaviors. Full implementation of the Report’s recommendations would contribute significantly to that. But the development of truly therapeutic communities is the only solution to addressing the needs of those with ID.
The move to community-based residential care is undoubtedly a positive development for those with ID and for society at large. It can address many of the criticisms leveled at congregated settings in the HSE report. But smaller, more focused and more intimate care settings may still become only smaller versions of what they set out to dismantle. With the advent of HIQA standards, care has become more transparent, the service users more visible, the issues around care more debated—so much has improved. But it remains the case that the model of care employed in community-based residences is more of a hybrid of the older medical model and the newer vision contained in various HSE and voluntary sector strategy documents.
The pervading culture in the care industry has set out to address the problems and deficits of the past, especially with the revelations in the media of practices employed in older institutions in previous decades. But I would argue that we are in danger of moving to a professional care service, instead of a personal care service. Is it possible that our attempts to regulate the care sector have meant the pendulum swinging even further to the other side? Examples of this include such regulations from both HIQA and the health and safety sector which prohibit open fireplaces in community residences, or the insistence that all curtains, bedding and nightclothes be fireproofed.
Also, the requirement to document practically every decision and action undertaken facilitates a more bureaucratic service and puts the service user firmly back in the category of patient. Well intentioned as these regulations are, they contribute to an overly-regulated culture—to the detriment of a service which could be far more personal, person-centered and intimate. Appropriate and realistic risk assessments are, of course, necessary in each and every instance. If we are honest we will acknowledge that anti-psychotic medication continues to play a key-role in the day-to-day life of many service users. Inflexible daily routines within community residences and day service centers often determine how the day will play out for the residents there. Even in smaller settings, the needs of all cannot be met, because of staffing or budgetary constraints. The original vision of community-based care—as small familylike settings for those with particular needs—has often given way to a structured, slightly bureaucratic professional service, turning some settings into mini-institutions. Day service facilities too sometimes lack the resources for individual programmes and large congregate settings remain the order of the day in many centers.
But there are many positives too. Many carers and care managers strive to challenge this direction in order to develop their service. The increasing role of person-centered plans (PCPs), optimal individualised plans to optimise quality of life and various initiatives to put in place specifically designed individual arrangements by some care organisations, often within tight financial constraints, are all worthy of commendation and support. Behaviour support plans are also tools to improve the quality of life for our brothers and sisters who exhibit challenging behavior. Perhaps the greatest challenge, though, for social care workers, carers and nurses involved in the frontline of care is not to rely solely on these tools to change or perfect the behaviors of service users, but to change or perfect our own relationship with them.
Carers also need to work on what it is we bring to the service offered. We need to challenge ourselves with questions around attitudes, practices and our vision of what it is we do.
The HSE report makes 31 recommendations for the transition from larger congregated settings to smaller, more personalised units. The recommendations include the possibility of individual budgeting for each service user, strong advocacy arrangements and the implementation of capacity legislation. Focused inspections and evaluations of units, developing a clearer vision statement, the use of different models of community support, and a change management programme to ensure transitions, are also encouraged. The report also suggests looking at different housing options, it limits the number of residents to 4 in any residence, advocates the development of supported living programmes, the coordination of support provision and the naming of an HSE official to lead the changes necessary. Transition strategies, funding mechanisms, housing policy and protocols for community inclusion are also envisaged in the HSE strategy document. Many will welcome these recommendations, but the jury is still out as to whether the resources, political will and determination to turn these recommendations into reality will follow.
So where does all this leave us? There is a clear need and desire to change our models of care. Efforts are well underway, especially with regard to community-based care.
There is a call in the Report (broadly welcomed by many) to close the large congregated settings over a period of seven years. A vision for care into the future exists, based on the specific individual needs of each person. But it is imperative that we get it right—with the vision which has the necessary resources to be implemented and which is therapeutic in its essence. Needs are so varied that no one model/setting will suffice for all.
Social care needs to involve multidisciplinary teams working in closer collaboration. Very often, professional supports are offered as add-ons to the care offered day-today and not as an integral part of it. This extends beyond those involved in day-to-day care and includes the various agencies and bodies concerned with this particular industry. It must be stated that the lack of coherent joinedup thinking between agencies, voluntary organisations and statutory bodies has often produced the cracks into which a vibrant vision of therapeutic care disappears. The quality of care on offer can depend on which agency, body or organisation the service user is associated with, meaning that a coherent approach to those more vulnerable is yet to be seen.
Social care workers have a role to assist in implementing this vision and to feed back from the frontline of care in a positive and constructive manner, always bearing in mind the well-being and quality of life of those entrusted to our care. It would be my hope that those to whom the development of policy and the implementation of the Report’s recommendations are entrusted will learn from the experience of carers. And, likewise, that carers (whether professional paid carers or family members) will be open to new possibilities, new experiences which contribute to more personal, therapeutic and individualised services. Much work also needs to be carried out with society at large and the local communities into which those with ID will live. We are all too aware of the degree of social isolation which exists for many other groups within society, particularly the elderly. Community-based care is two-way; it extends beyond the carer-service-user relationship. It would be to everyone’s advantage if our model of care was more professional, certainly, but also more personal and therapeutic in orientation.