From care to support for adults with learning disabilities

2017-11-16T10:32:35+00:00 December 2nd, 2016|Categories: Live-in Care|Tags: , , , , , , , , |0 Comments

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.

History

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.

“A lady I supported, called Emily, used to attend a large day centre I worked in. One day she gently kicked me (from her wheelchair) to get my attention and said “you should go to the place for bald people” – extending the warped logic of her own experience that a person’s ‘label’ dictated activities and relationships.”

Ian Hart, L.D. & Health and Social Care Diploma Training Co-ordinator, Christies Care

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.

“The social model of disability says that disability is caused by the way society is organised, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives.”

Scope

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.

Christies Care’s Experience

National statistics indicate that there are still approximately 80,000 adults with Learning Disabilities living in residential settings and some 3,500 living in an NHS services. All of Christies Clients with Learning Disabilities receive 24hr live-in home support in their own homes.

We train our carers to be mindful of the impact of a client’s background when a client is behaving in a way which may be a direct consequence of their history.

Younger clients are more likely to have experienced a more ordinary life, made easier by a person-centred approach through school and a transition planning journey from the age 14 informing a person-centred plan, moving towards an adult life.

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)

Communication

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.

Relationships

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.

Christies Care’s Experience

At Christies Care another benefit of a strong knowledge of the client’s personality is the ability to better match carers with clients. Carers are all trained to deliver a high level of care but what makes Christies different is that it’s booking team and carer support team are aware of the client’s likes and dislikes so, if they like fishing or computer games we can match them with a carer who shares the same interests.

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.

Christies Care’s Experience

We have adopted the one page profile for all of our learning disabled clients. As well as covering the important information about their needs it first and foremost addresses the person; what people like and admire about the person, what are their skills, what are their gifts, what’s important to them and what’s the best way to support them. Carers and our Emerald Booking Team are aware of client’s individuality as well as their essential support needs.

NHS Passport

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.

Christies Care’s Experience

Christies completes a NHS Communication Hospital Passport for every Learning Disabilities client keeping these up-to-date. These easy-to-read guides ensure that anyone has the vital information that they must know before administering any kind of treatment, the necessary level of care required to maintain a comfortable life and last but not least a record of the individuals likes and dislikes. This ensures that any treatment and care is person-centred.

Furthermore our carers check every client to make sure they are registered with their local GP and have received their free 360 degree Annual Health Check to which anyone with LD registered with a GP is entitled. It is estimated that over half of those with LD in England and Wales are not registered with a GP.

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.

There is still a long way to go to improve support for those with learning disabilities but the rate of change has increased remarkably over the past decade and shows no sign of slowing down, though the gap between rhetoric and funding is also starting to grow. Christies Care will continue to be an early adopter of better ways of helping people live as independently as possible and looks forward to the challenges ahead.

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