 Lets stop kidding ourselves; Social Care & Health Services are in Crisis, which is due to get worse in the next two years, whatever we do in response to the Budget Crisis. The resources are not adequate and they are often used ineffectively, with too few (and often reducing numbers of) professional staff.
There are massively increasing administrative demands, reducing admin support, less locally available services and poor transport access to these increasingly centralised services. Critical Funds are used up in 'protective' and 'unproductive' Bureaucracy. In general, Service Managers and Professionals are not able to publicly acknowledge this. They do so at their professional peril and risk to careers. Those that do not privately acknowledge this are often deluded by the financial arguments, poor understanding of Community Care Law and almost absent understanding of peoples fundamental Human Rights. As a result the Human Rights and the Health and Safety of clients, patients and all staff are frequently put at unnecessary & unreasonable risk: Pertaining to; Personal Dignity; Equality of Treatment under the Law; Least Restrictive Practices; Anti-Discriminatory Practices; Best Practice; Informed Choice and obligations to properly assess needs and risks 'in equal detail', whether they are seen as Critical & Substantial, or not. These restrictions on the level at which services are provided are concessions for limiting the spiralling costs to providing services. They are 'Shortfalls'. Our specialist services are thereby, mostly becoming 'crisis' services. Those who are most vocally able and who's health and social care needs have become critical and substantial, now have a good chance of getting a good service. We know how effective this is will depend upon location, the agency providing the service and the individuals you happen to get. Even so, because of these variations, you may get anything from no support at all, through satisfactory, to excellent service (with a few little criticisms). Maintaining a consistent service is almost impossible. You are less likely to get an appropriate 'empowering' services if:  You live in social housing and have a down to earth way of expressing yourself; have in any way expressed yourself angrily; made frustrated (even unprovoked) threats; made repeated complaints; if your needs and concerns are disabling, but not deemed as 'Critical or Substantial' (in a particular respect); if you have multiple problems that are physically, mentally or socially disabling you, but no single problem is seen as critical or substantial by any one of the specialist services).
If you have a developing physical, mental or social problem, where you are not adequately informed & supported, you are unlikely to get early help to prevent these becoming bigger problems. Trying to get help early is frustrating and the rejection usually makes the problem worse. If you are referred to voluntary sector, or Citizens Advice, they are likely to be under resourced and (because of their local authority and government funding) are often required to work within these institution's guidelines. The help you get can often be as prescriptive as that from many professionals. For all the new initiatives and reorganisations, the situation does not 'substantially' improve. All too often, clients / customers / service users complain that it is all down to money. Well, I can see their point. Unfortunately they often do not realise that over 50% of the funds allocated to 'services' are assigned to the service organisation, administration, management, assessment and data collection. This proportion is steadily increasing and is on top of the funds already allocated for the purpose. Everyone agrees that this area is important but the proportion suggests a lack of trust of professional decisions and a disproportionate investment in 'covering the backs' of the poor decision makers.  You are also very likely to get a service that you insist that you do not want. If you are deemed by a professional, to lack 'mental capacity'; You are entitled to a service based upon the least restrictive practice, in your best interests, considering your established, preferred lifestyle and wishes. You are more likely to get a service which is determined by the fears & anxieties of family, neighbours & involved professionals. Any resistance, or anger will often be seen as part of your 'condition'. It is quite illegal, but you will be in no position to win that argument.
For all the impressive moves towards respecting Human Rights and the associated initiatives of Governments to improve the situation for people with a disability, the rights of the child and those in relative poverty, professionals and managers find the old excuses for overriding those rights. In my work I hear every kind of excuse for why there is no proactive action taken to improve things, within families and individual lives. Things are 'left' till they are in crisis. Even with the best of intentions, most responses are reactive, prescriptive, administratively cumbersome, disempowering and often unlawful.  Community attitudes are generally still inclined towards 'keep people safe, by taking and locking them away', 'out of sight and of mind'. This is unacceptable. Family members who had been lead to believe (mostly by poor professionals attitude) that 'there is no hope of improvement, or recovery', or 'the person will need to be in an institution for life', have been convinced that highly restrictive services are acceptable and necessary.
This is rarely the case, as skilled professionals are constantly demonstrating, often against the prevailing, defensive and negativistic attitudes. These defensive attitudes blatantly undermine the rights of many people with disabilities. It is lazy and fearful practices. This is what produces the Postcode lottery which we now frequently speak of. It determines what quality of service you will get. If you do not believe this will affect you, think again. There are professionals who have always resisted the proper implementation of community care and 'least restrictive' practice. They need shaking out. This is the thin edge of the wedge. The services to yourself, in your old age, will be affected if the current trends continue. The resources are so tied up in these 'restricted' ways and there are so many vested interests for many providers, making a good living, that the improvements are slow and even more costly as a result. The good examples are relatively rare and meet significant resistance, you will rarely hear of them, they make little news and few inspire the very rare 'positive' documentary.  By the time it is your turn (if you are fortunate enough to live into older age), only those who are best informed and who understand their own (& others) rights, are guaranteed an appropriate service. The rest will be 'binned' as they have in the past. In the absence of anything else reliable, families, out of frustration choose the best 'bins'. I should start writing you living wills while you can, if I were you. Money is less critical than attitude.
As a professional and as an Advocate, I am experiencing increased pressures to justify the support of the individual's wishes to retain, or gain, control over their lives. There are increasing pressures to take account of family and community 'anxieties', even were least restrictive practice produces clearly manageable 'normal life' risks. The professions are responding more to the increasing examples of media criticism and the institutional reactions make further failure inevitable; further reactive practice. Family Carers deserve support in their own right, but this should never interfere with the professional's obligations to the 'person'. There is a separate support to Carers which should never infringe the rights of the 'primary' client. We have a duty to make this clear and resist any pressures to concede to family, or community pressures, based upon cost, inconvenience, or fear. No individual has the right to insist on the over-restrictive treatment of another, even a family member, without clear justifications of 'actual' risk. Professionals created these fears, it is our job to undo this enduring problem.  The level of professional, managerial and community ignorance in this area is astounding and is rarely malicious. The simple test is 'Would I want to be treated like this, under any circumstances'?. Any invented justifications are just that, especially; 'well they are not me'. I have even experience situations where criminal process was less damaging and more insightful than other professional interventions. I have, of course met the flip side of that coin. It is not the professions so much at fault, it is the attitudes of disproportionately powerful, often poorly informed, professionals and managers.
The lawful justification for any limited and progressive restriction on a person's freedom of action and expression, can only be justified on the basis of an imminent, injurious risk to self &/or others. Actions should be of a degree necessary to adequately reduce that risk and only for as long as this remains an imminent risk. It is then our job to 'manage' any residual risks. No one said that being a professional was without challenges and some degree of professional risk to ourselves. Our job is about managing the risks best we can; Take professional responsibility for decisions and work in the client / patient best interests, not our own, or those of the employing institutions.  If it is the clear, 'fully informed' and un-pressured decision of someone to live within a 'residential', 'retirement home' or 'nursing home' type environment, they clearly have need of this kind of support and all other alternatives have been properly offered, tried and seen to be inadequate, then we can feel justified that we have done all we can to provide the most empowering, dignified and appropriate service. If the alternatives are not there then there is a clear shortfall. If they are and not offered? Well think about it.
The concepts of community care are not new. Many have been successfully applying them for 35 years. If these services and environments are lacking 'as homely and dignified environments', then this should be challenged, adequately funded and improved. Help people to help themselves and where this fails, provide dignified environments where people can enjoy individually planned levels of care and the least necessary restrictions in their lives. Professionals have a responsibility to enable Carers (Paid & Family) to do this, taking responsibility for the decisions person can not make themselves. Been there, got the tee-shirt. If you think you can undermine any of my arguments, try me. I can give you hundreds of successful challenges to bad practice and dozens of successful outcome to alternative forms of support, without increased 'life' risks above 'average normal'; with satisfactory declarations of outcome by client's and their carers. There are no excuses for bad 'restrictive' practice and fearful professional& managerial reactions. All these alternatives, applied appropriately and skilfully, cost less than all but the worst institutional care. Someone is profiteering at others expense. The risks that these fears and restrictive actions produces are far greater that those that are ever feared. The real risks are in directions we are often not looking. Fear causes us to be blinkered, defensive and over-restrictive. The at prevailing attitudes and ignorance causes more damage and opens up further risks for the future of us all. Try me, I have countless examples. Some are described on this website. These are no longer political arguments - these are painful realities for everyone. If we are not careful as professional, it will be us who are diagnosed as 'deluded'. We are all in this together: Look, I am going to be as frank with 'service users' and 'Carers' as I am with Professionals. Everything looks and sounds very complicated, but it is not. It is actually quite simple. The problem is, very often, getting people to see the simple solutions. This requires us to be honest, transparent, caring, sensitive and realistic. This is true whether we are Professionals, Carers, People in receipt of services, or more importantly, trying to get properly considered for obtaining some kind of 'enabling' service. This is entirely possible in you own home, in sheltered housing, in supported living, or in a retirement / nursing home. It should remain you informed choice and the least restrictive option. First of all; The services are not there (and were never intended to be) to provide a free 'maid service' for people who miss having someone around doing everything for them. But it is there to help them adjust to such changes. Nor is it a service for keeping people as dependent as they were, when living with their parents (often having been told as children that there was no hope of advancing as adults). The service is there to correct these errors, engage ordinary lives and undo 'induced' dependency. The purpose of Community Care (and the smoke and mirrors change to 'Care in the Community') is to enable and re-enable people, who were disabled in these ways, to have substantial control over their daily lives and adequate, 'enabled' access to the normal services and resources of the community. Most healthy people want this. Those that don't want this have lost their way, have become 'made' dependent, have lost the spark of life and are in need of patient, enabling, sensitive support. Most importantly, they are not services intended for 'eliminating all life risks'. I have personally seen the effects of attempting to eliminate 'all' risks, by misguided families, professionals and institutions. It is very 'dangerous' practice and produces more dangerous risks than the relatively small risks being 'protected'. The individuals become deprived, restricted, have seriously increased mental health problems, become highly dependent &/or highly challenging and even violently aggressive. You can see the consequences every day, by ordinary people who feel they had a raw deal (perhaps they did). The services were intended to be 'enabling'; helping people to help themselves, if their abilities have not developed, or have subsequently failed in some way. This is always possible, when we are creative and take a positive attitude towards 'including' people in our communities. This does not mean that there is no direct practical support; where there are very real, persistent, physical, neurological and psychological inhibitions to undertaking life tasks. The person should, however, retain 'control' over this and provided every opportunity and encouragement to participate fully. Families, parents and partners have a natural role (in some measure), to supporting and enabling people who have impairments, but these 'felt' responsibilities and duties should never be allowed to substantially interfere with the person's, or the Carer's Human Rights and other entitlements to a personal life. Community Care was introduced to compensate for the modern cultural demands which require us to meet general parenting & relationship obligations, work commitments, contribute to general social welfare & civic responsibilities, in increasingly fragmented, modern family networks. In this respect, Family Carers and Community Volunteers should never be used as cheap care options, relieving the community purse. Community Care is a locally organised insurance, which we all contribute towards, which partly replaces, partly compensates for, and progressively rebuild modern, enabling communities. Many of the 'dependencies' that had been created in Institutional Care (and are still apparent) are now showing their tendencies in 'Community Care'. This is unacceptable, unhealthy, unprofessional and contradictory to Human Rights and Human Dignity. Much of this unacceptable interference and the serious distortion of the community support provided, are the result of various professional (and resulting family & community) anxieties. Fear of litigation and uniformed public criticism has lead to 'over protective' and prescriptive forms of care and intervention. In addition, there is still a powerful component of professional 'we now best' attitudes, sometimes using very poorly evidenced; and even interpreting 'evidence' from the wholly inappropriate and inadequate perspectives. Many of these are discussed on this web site and referred to else where. More to come. Under Development . . . . . © Terry Couchman; Visitweb / Your Choice; June, 2009. |
