Independence, The Government White Paper - Valuing People

Independence

Can the Government White Paper ‘Valuing People’ be effective for adults with learning difficulties who live at home with ‘family’ carers?

The recent government White Paper “Valuing People’ (2001) explains in clear terms the rights of adults with learning difficulties. Firstly it is important to discuss the issue of independence if the White Paper is to truly benefit adults with learning difficulties. Adults with learning difficulties may be dependent on the state and on others for care. However, independence should be defined, especially in terms of adults with learning difficulties, as the ability to be in control of and make decisions about one’s own life. Above all, we need to remember that we are not providing yet more ‘one size fits all’ services but making possible an equality of opportunity to adults who often face discrimination, have a lower status than other members of our society and live with a degree of learned and often taught helplessness. We need to hold onto these thoughts when supporting all the people involved in the life of an adult with learning difficulties to make the necessary changes to take forward those rights afforded by the White Paper. I would like to discuss here the dilemma raised by including ‘carers’ (which for the purposes of this article means family carers) in the White Paper when these guidelines purport to be about the rights of adults with learning difficulties.

The White Paper ‘Valuing People’ as mentioned before is about the rights of adults with learning difficulties but it also states that we must listen to the opinions of carers. How can this be? As carers are I suspect mostly primary in function it is easy to see why they are included in any government document relating to their sons, daughters, nephews, nieces etc. The overriding fear and consideration on the part of government both national and local is probably that if the carers don’t get what they want they will stop the process of caring for their loved-one, a sound economic imperative, which coupled with an historical view in our culture that seems unable to disassociate carers from adults with learning difficulties provides a strong case for governments to maintain the status quo. Despite the enormous strides which can be witnessed in the development of such a White Paper society’s view still seems to be that adults with learning difficulties cannot think for themselves and make choices about what they want to do with their lives? Carers being included in a government White Paper about the rights of adults with learning difficulties is symptomatic of this view and it is in danger of fudging the complex issues arising from acknowledging the rights for adults with learning difficulties at the same time as recognising the needs of carers.

As an independent advocate, in my view, it is the ‘carer’s ‘ role that carries a measure of rights in these situations and not that of the ‘family’. Carers have their own legislation in the Carers Act (1995). These rights are the ones of a right to services for themselves and for their loved ones. However, this does not mean that the carer has a right to decide what service their loved one gets or how their loved-one chooses to live their life. This is surely up to the adult with a learning difficulty, even if they have communication difficulties. It is vital that social workers, care managers and other service providers glean the views of an adult with learning difficulties directly from the person themselves. This may mean using an advocate, a communication expert or a resource partner. True progress in the lives of adults with learning difficulties can only be made if this distinction is both made clear and acted upon. Of course carers have a vested interest in the lives of adults with learning difficulties and they do need to be considered but such an interest must not enable them to thwart the development and independence of the people for whom they care. Both the interests of primary carers and adults with learning difficulties can be best served by firstly, a strong distinction being made between the views and choices of both people involved in this caring relationship as separately expressed in a) the Carers Act and b) the White Paper and secondly by keeping the view and choice of the adult with learning difficulties at the forefront of our minds.

There is a whole range of issues upon which carers may be unlikely to agree with their loved-one. These include sex, money, friends, activities, relationships, leaving home, etc. What can we do to assist carers to let go of adults with learning difficulties whilst still having positive input into their lives, even if the adult with learning difficulties chooses to stay at home? What could be happening when a carer’s views are at odds with an adult with learning difficulty’s and what are the possibilities for positive change? If the carers have organised their lives around the person with a learning difficulty for so long, it may be difficult for them and the professionals to gauge what effect this has had on themselves and their relationships and therefore difficult to implement change. However, this is not impossible given a variety of techniques ranging from family therapy to peer support groups. Carers may also fear that if they support things changing for the person with a learning difficulty, a major part of their own lives and effort will be dismissed and these are fears that need to be sensitively allayed. At the further extreme there may be issues of a power differential to work through. The nature of power being defined in this instance as the person, usually the carer, who is powerful and having their reality prevailing over their loved -one i.e., their view predominating. Though often a carer may feel powerless in the face of the professionals. The ownership of this kind of power differential is still rarely possible for adults with a learning difficulty. This problem needs firm but just handling keeping a focus on the person with learning difficulties, the real customer in this case.

Many families can find it difficult to achieve a balance between over-protection and the positive risks of independence that can be faced by someone that may be a vulnerable adult. For carers, the normal life cycle events that they see experienced by their children may be out of synch with their peers who do not have learning disabled children thereby opening a gulf between them that may lead to increased anxiety and guilt. A way of addressing the dilemma inherent in the White Paper is through independent advocacy. This is focussed on the adult with learning difficulties. The advocacy role would be one of communicating with the adult with a learning difficulty, recording their needs and desires and recommending the services of other professionals to assist them and their carers with change, family dynamics and the law. There are dangers in moving forward realistically and truthfully with the ‘White Paper”. For instance , our ever-increasing litigation culture where it is possible for carers to seek to drag service providers through the courts. The distinctions discussed here between the needs of adults with learning difficulties and their carers in the context of the White Paper are vital. Such litigation instigated by carers often occurs not because the service being offered to the person they care for is bad but because they, the carer, do not want the boat to be rocked, the adult with learning difficulties to step outside the carer’s view of them or the family dynamic disrupted or destroyed. We must primarily focus on the needs of adults with learning difficulties at all times and objective, transparent and independent advocacy is a useful tool in this respect.

Conclusion –
As mentioned before we need to ask ourselves who is the customer in the White Paper? We cannot serve two groups of people at the same time. The White Paper in the context of this article is about the rights of adults with learning difficulties alone and there can be no room for any other group to hold sway when attempting to operate these guidelines. I for one will continue to advocate for carers to be dropped from these guidelines in order to benefit not only people with learning difficulties but also carers and professionals. Of course we do need to hear the carer’s story and to be able to support them in positive changes both for the adult with learning difficulties and themselves. However, this must not be at the expense of those same adults with learning difficulties. The best place to start from in this issue is the general principle of competency that the law assumes for everyone over the age of 18.

Simon O’Corra is an independent advocate and resource partner.

Independence, The Government White Paper - Valuing People

Simon O'Corra

Rouvres Les Bois, France

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