National care standards - care homes for people with physical and sensory impairment

Annex C: The context of the standards

The scope of the standards

Clearly, the standards can only refer to matters that are the responsibility of the service provider and are within their control. For instance, having good access to effective health services will be as much determined by the nature and availability of local health services as by the practice of the care home provider.

Similarly, it is important to recognise that a great many factors which will have a large impact on an individual's quality of life are also outwith the scope of the standards. These include: personal issues such as the individual's health, or the availability of family support; and broader, social issues such as the limited accessibility of public transport, the built environment, or public attitudes.

There are also important issues which, though not directly within the scope of the standards, are largely determined by social welfare policy and practice. These include: financial issues such as means-testing and cost ceilings; assessment and review; the availability of alternative support options within the community; and the degree of choice and control that the individual is allowed to exercise over their support arrangements.

Who speaks for whom?

One of the key principles articulated by the Independent Living Movement is that virtually everyone, regardless of the degree or nature of impairment, is capable of expressing preferences and making choices. However, all too often, this decision-making capacity can be undermined if proper steps are not taken to preserve and promote it.

For instance, it is wrong to assume that the views of family members and the disabled person are never in conflict and that it is, therefore, acceptable for one to speak for the other. If, as intended, the standards are to focus on quality of life issues, the disabled person's own experience and their own views must be recognised as central.

Improved access to independent advocacy, either formal or informal, clearly has an important role to play but there must be clarity about who is speaking on behalf of whom and about the individual's own views, especially where these differ from those of relatives or professionals.

Communication

Clearly, self-determination and communication are closely linked. However, communication needs have been unrecognised, ignored or set aside as being too difficult or costly to meet in the past, particularly outside specialist settings or services - rather than being viewed as basic to human need.

You may use different methods of communication to spoken or written English for a variety of reasons:

• your first language is not English;
• you are deaf and use sign language, Lip speakers or Deaf-blind Communication;
• you are visually impaired and access information using audio materials or large print;
• you have communication impairments and use aids or require time to express yourself in speech;
• you have learning difficulties and use signs or your own individual means of expressing needs and feelings; and
• you have dementia or mental health problems and your language and non-verbal communications may need adept consideration at times to understand.

When you face barriers to communication, you have a right to be consulted about your needs, preferences and views, no matter how much time or how many resources this requires. Again, if services are truly to be assessed from your perspective, then avoidable barriers to effective communication must be removed. At its simplest this must involve providing information in whatever format is needed e.g. large print, Braille or audiotape. It also means listening to you, seeking to understand your experience, asking questions and seeking your views. It includes being able to use assistive technology such as text to speech synthesisers and services such as sign language interpreting. This two-way process may require time, patience and sensitivity.