Christies Care has a strong view that people are not objects to be “cared for”. All people are individuals who, whatever their disability, should be supported to lead as full a life as possible.
This is a philosophical position that we have held for over 25 years; during which time our live-in carers have given person-centred support to hundreds of people. The mainstream is slowly catching up; there is more emphasis on helping people live lives as they want, and not confining people to institutions – though funding remains a key issue. In this piece, we explain how the changes are taking place, and what training and knowledge are needed to make these successful.
We hope that the recent improvements continue, and that more and more people can be supported to live as independently as possible.
Care for the more vulnerable started with the extended family. The elderly, mothers, wives etc. looked after those unable to care for themselves, while those able worked. This system was efficient but fell down with the mobility of labour fostered by the Industrial Revolution. In 1886 the Government gave local authorities the responsibility for the care, education, and training of those vulnerable people, including those with Learning Disabilities, labelled under certain categories. This pigeon-holing was broad-brushed and lacked any finesse with which to reflect the myriad variations that make up a person. The bare minimum care was provided: – warmth, shelter and food, setting the model of “care” for almost a century.
Change was slow; institutions were renamed hospitals driving home the notion that a Learning Disability was an illness that could be fixed or cured. During the 1980’s a change in approach began, starting with the majority of adults with learning disabilities being transferred to modern models of care, consisting of Residential homes and Adult Training Centres, managed by Social services.
Those that remained in the NHS institutions were deemed not “OK” for the new provision. During the 90s these hospitals were redeveloped, becoming clusters of bungalows, changing the bricks but not the medical model of care. People were still patients to be fixed, bungalows were referred to as wards and although people lived here for years, sometimes decades, it was never referred to as home.
During the late 90’s a groundswell of self-advocates and family carers started to challenge the way they were being ignored and misrepresented, putting people into services based on their label rather than interests and aspirations.
The need for a person-centred approach
The big change, largely due to ‘Valuing People’ a Government white paper in 2001, saw a move away from fitting the person to the care and towards matching the Support to the person. This ‘Person-Centred’ Approach now underlines society’s response to the challenges facing adults with Learning Disabilities.
Manage the velocity of change
Moving from care in an institution to one-on-one or two-on-one support in your own home is an attractive concept but not always for a person who has been institutionalised for many years and feels safe in a daily routine performed by familiar faces in recognised surroundings. A change like this has to take place over time and in a planned manner including breadth and depth training for all involved. Person-centred means keeping the person at the centre of all decision making, planning and actions that affect them.
Get on with real life
It is estimated that for a significant number of people with learning disabilities (around 30%) the cause is unknown. This can cause considerable distress among the parents; guilt, blame and other emotions that distract from the day to day interaction that makes life worth living.
In 1987 John O’Brien and Connie Lyle O’Brien embarked on a piece of research in Seattle on what makes a good quality of life. Centred on five key accomplishments, these are covered in training for all Christies Care carers:
Community Presence – For too long services have hidden people who are “different” away. The carer’s role is to take any opportunities to access real activities and support new links.
Relationships – Spend time with people who have the same common interests, giving the opportunity to develop friendships, rather than being placed with those with the same label.
Choices – Be supported to learn how to make good informed choices. Beginning to understand that with choice comes responsibility.
Competence – What can you achieve, how far can you go, remove the barriers to growth.
Respect – For the individual and the person they are.
(Implementing Person-Centred Planning by John O’Brien & Connie Lyle O’Brien, Inclusion Press: Toronto, 1998)
Understanding your client is fundamental if you’re to support a person’s needs appropriately. A conversation or conversations by whatever means appropriate to the person will gradually reveal what is important to the person and how best to support them.
This can inform:
- How the person spends their time – Work, learning, hobbies, etc.
- Where the person wishes to live – Where, who with, supported by whom?
- Staying healthy – Good exercise, good diet and mental well-being (things that make you feel good).
- Friends & relatives – Spending time with the people who are important to you, having the opportunities to develop new friendships.
Right time right place
It seems a simple thing but the timing and location of these conversations is also important. It’s no good having an important conversation in the middle of a supermarket or standing next to roadworks. The location of a conversation lends gravitas or takes it away. Everyone takes something from the right time and place, morning or evening, at home, in the park, over a cup of tea.
Learn the language
People with learning disabilities are often not understood by those around them. This can be frustrating for both so there are various aids to communication available that can support better communication. Makaton is a combination of signs and spoken word and is widely taught in schools and services for people with Learning Disabilities. Other aids vary from low cost picture cards to high cost specialist computers.
Know your client
Knowledge of the client will reveal the strength of relationships they have with the various people in their lives and therefore the relative importance of them in various scenarios. For example if there is a medical emergency then certain family members, professionals and friends may be the best to involve whereas an issue about property and the client’s environment may require different people.
These people should be chosen for their importance to the client above all.
Write things down!
The nature of support is that those providing it inevitably change or cannot be there all the time. This can be as simple as a carer holiday or respite break, retirement or handing over to another professional. It’s important to write down a profile that covers; not only the hard facts about the client’s condition, food, medication and routine but also what they enjoy and their routines and rituals. A key element of the evolution to person centred support is that you start with the person at the centre and other issues, while vital, are secondary to knowing the client.
The NHS Passport provides vital information about the person and their healthcare needs; the document is easy to read and understand and should accompany the client at every medical appointment.
A person-centred approach is the answer
We know that all aspects of support faced by those with learning disabilities are made better by adopting a person-centred approach. To focus care on the whole person and not just the clinical diagnosis improves the quality of life for the whole person.
Christies Care has adopted this philosophy for the 25 plus years of its existence. It devotes two whole days of its industry-leading eleven day induction training to embrace the values widely seen as the future for Learning Disability support. The idea of person-centred Support fits closely with Christies long held belief that carers should always put themselves in the shoes of their clients and treat them as they would wish to be treated.