From the archives
'An ordinary life':
The King's Fund's work on services for disabled people
You can read this exhibition in one of the following formats:
Scroll down to read the online version
Download the text-only word version
Download the text-only word version (large print)
The documents in our digital archive are scanned images of the original reports. Where possible, we have created plain text versions of the reports referenced in the exhibition. You can find these versions in the 'Items' section of the archive page.
Introduction
To mark Disability History Month 2024, The King’s Fund library has delved into its archives to explore how the Fund has worked with, and for, disabled people over the years.
To find out more about Disability History Month visit the event website.
The King’s Fund has long believed that disabled people with social care needs should have autonomy in their own lives. This provided the basis of the ‘ordinary life’ work undertaken by the Fund in the 1980s but is evidenced in earlier work dating from the 1950s
This exhibition unpacks this a little more, looking at work we have produced or supported over the past 80 years with the aim of improving conditions for disabled people in all aspects of their lives.
A note on language
Before we continue, we should address the outdated language contained in some of these documents. Although once standard, much of the terminology now feels outdated and, in some cases, offensive. Historically, language around disability was shaped by negative or medical views of disability. Much of the terminology used in our older reports have their roots in these views, which are no longer held.
Language is constantly evolving, and the current accepted terminology generally uses either ‘person-first’ (eg, ‘a person with a disability’) or ‘identity-first’ (eg, ‘a disabled person’) language, depending on individual preference.
When considering the language for this exhibition, we consulted with The King’s Fund’s Disability and Long-Term Conditions Staff Network, where the preference was that we use identity-first language. It follows the social model of disability, which considers people to be disabled by barriers in society, and not through impairment or difference. We acknowledge that different people have different preferences in how they like to refer to themselves and others.
Our goal is to see [disabled] people in the mainstream of life, living in ordinary houses in ordinary streets, with the same range of choices as any citizen, and mixing as equals with the other... members of their own community.
An ordinary life: comprehensive locally-based residential services for mentally handicapped people, 1982, p1
‘It’s the smell of baking that hits you when you go in…’
Why the caring environment matters
'Enhancing the healing environment'
It is now recognised that disabled people and their families tend to benefit more from care at home and in community services rather than in hospital settings.
But for centuries, the care of disabled people, including those with learning disabilities or mental health conditions, predominantly took place within hospitals.
Even up to the mid-20th century, disabled people’s care was still largely institutionalised. In 1955, following the founding of the National Health Service a few years earlier, The King’s Fund produced a report providing an overview of the history of institutions and the legacy of poor care, stigma and isolation associated with mental hospitals that still prevailed at the time.
You can read the report on hospitals providing mental health care in our archive.
Reading the report, it is striking how little these institutions had evolved – the image of Victorian asylums comes to mind as you read.
The report signifies a shift in attitude towards disabled people and their care, even if the idea of care is still centred on the institution. It calls for institutions to provide environments that resemble ‘ordinary’ life and advocates for more homely long-term care settings.
The King’s Fund sought to make these improvements by providing grants to hospitals to ensure more trained staff, better catering and new leisure facilities.
Later decades would see the Fund place a greater focus on shifting care out of hospitals and into the community, but this report represents early efforts to enhance care for people with learning disabilities, introducing the concept of enabling as ‘ordinary’ a life as possible for patients living in long-term care.
In the meantime all who have advised us on the needs of the mental hospitals have emphasised the importance of giving the patient an environment and regime much more like the conditions of ordinary life than has been customary in mental hospitals.
Report of the sub-committee on mental and mental deficiency hospitals in the London area, 1955, p12.
The King’s Fund revisited this idea of enhancing the healing environment in a Department of Health commissioned project that ran from 2002. The project aimed to empower nurse-led teams to work in partnership with patients to improve their care environments. Over 12 years, the Fund worked with 250 health and social care organisations, including acute, mental health and community NHS trusts, care homes, hospices and prisons, to support their healing environment projects.
View our Department of Health Commissioned project on our website.
Room for improvement, published in 1972, continued to reflect some of The King’s Fund’s early work on the importance of creating a safe and homely environment for people living in long-term care.
Read Room for improvement in our archive.
By the mid-1970s, the Fund’s focus had shifted from improving hospital environments to helping disabled people transition from institutions to living at home or in community-based accommodation.
From then on, improving community services became a key theme for The King’s Fund, and continues into our work today.
This shift coincided with developing UK government policies, where concerns were being raised about poor hospital care for people with mental and physical disabilities.
The Chronically Sick and Disabled Person’s Act was passed in 1970 and required local authorities to provide services and support to assist people with physical and learning disabilities to live at home.
Find out more about The Chronically Sick and Disabled Person’s Act.
In 1984, The King’s Fund published a report using three case studies to assess how well these responsibilities were being met, particularly regarding daily living aids and home adaptations for people discharged from hospitals. The report aimed to identify causes of delays and offer solutions.
Meanwhile, White Papers on Better services for the mentally handicapped (1971) and Better services for the mentally ill (1975) were published, advocating for moving people out of institutional settings to live at home supported by increased community services. These led to the publication of the Disabled Persons Act in 1986 and Community care: agenda for action (the Griffiths report) in 1988, strengthening the shift to community care that shaped policy in the following decade.
Read the White Paper on Better services for the mentally handicapped and read the White paper on Better services for the mentally ill.
Read about the Disabled Persons Act and learn more about the Community care: agenda for action report.
While the external health and care landscape has influenced our work, over the years our work has also helped influence policy. In 1999, The King’s Fund report A new era for community care? helped inform the creation of a community care charter: Better care, higher standards: a charter for long-term care.
You can view our report on A new era for community care? and read the charter for long-term care on the Health Foundation website.
'An ordinary life'
A recurring theme in The King’s Fund’s work in the late 20th century was that of ‘an ordinary life’. This phrase, used in the title of a 1980 report, came to represent the goal of enabling disabled people to live in comfortable homes, access education and employment opportunities, and maintain strong support networks with friends and family.
Read the first report in the 'an ordinary life' series in our archive.
The King’s Fund’s work in this area was wide-ranging and focused on improving housing and residential services, developing community-based services, and supporting disabled people into education and employment. We also explored the cost-effectiveness of different residential models and provided training for staff working in community settings.
You can browse our other reports from this project in our Further reading section at the end of the exhibition.
Clothing
What we wear is important in terms of comfort, ease and control over how we present ourselves. The freedom to choose what we wear is an integral part of an ‘ordinary’ life.
Thoughtful clothing design can significantly impact people’s lives, especially those with mobility issues. For example, clothing with front fastenings can make it much easier for someone to dress and undress independently. The cut and comfort of garments also matter for people who spend much of their day seated, and specific adaptations, such as side-seam openings in trousers to accommodate a leg brace, can make a big difference.
In 1970, The King’s Fund published a review of international research on the use, provision and design of specialised or adapted clothing for people with physical disabilities.
The essays explored the practical aspects of clothing, such as ease of care, cleaning, crease resistance and strength of fabric, considering the needs of those staying in hospitals and those living in the community. The report also emphasised the importance of style and patient autonomy in clothing choices.
A few years later, The King’s Fund published a catalogue of clothing, listing types of clothing that hospitals could purchase for patients. This catalogue, detailing suppliers, fabric types and washing instructions, showcased how the Fund’s grants could provide practical solutions, complementing its research.
View our catalogue of clothing in The King’s Fund archive.
Work on clothing continued with a report on a workshop held in 1979 for clothing managers, linen services managers and staff with responsibility for patients' clothing in long-stay hospitals. The workshop centred around personal choice of clothing for patients, as well as the practicalities of buying appropriate clothing in hospitals.
Read our report on Personal choice of clothing by the long stay patient.
Children
The Fund’s focus on the ‘ordinary life’ continued in our work with, and for, children with disabilities and their families. During the 1970s, 80s and 90s, The Fund consulted with the families of disabled children to learn what worked for them in terms of care.
The Fund recognised that institutional care was far from ideal for anyone but especially for children, who need the warmth and ‘mothering’ (the term used at the time) not usually available in a residential home. Our work emphasised the importance of creating a safe, comfortable environment, rooted in the ‘ordinary’.
Family life, friendship and autonomy were identified as key factors in helping children with disabilities live and thrive in their communities. These ‘common aspirations’ – though seemingly simple – are a huge part of everyday life, and something that can be taken for granted until they are gone.
A full life for people with intellectual disabilities means:
• Growing up in families
• Learning with other children
• Living in ordinary flats and houses in the neighbourhood
• Having opportunities for real work
• Enjoying life with friends
• Making choices for oneself
• Being accepted as citizens
• And receiving the support necessary to achieve all this
Find the full report on Enabling people with intellectual disabilities to lead fuller lives, 1996, in our archive.
In our 1981 report Bringing mentally handicapped children out of hospital, the essence of the ‘ordinary life’ is captured in a reflection from Julie’s mum:
Julie, who is now nine, has become much more alert and trusting since she came to the Ashington house. She still takes a long time to feed, and she still has severe physical handicaps; but her gains, like those of the other children, are already noticeable. She had lived in Northgate since she was 18 months old; her mother thought it awful but knew that Julie had to go somewhere. When the idea of the move to Ashington was first put to her, she needed a lot of persuading – partly, she says, because it had never entered her head that Julie could leave the hospital. Who would do the cooking, who would wash and clean, decide the menus and still have time for the children.
Now, Julie's mother is really pleased. She would, she says, have felt bitter if her daughter had been left behind. The nicest thing about the Ashington House? It's the smell of baking that hits you when you go in, she reckons—instead of the smell of disinfectant that greeted you on the hospital ward.
Bringing mentally handicapped children out of hospital, 1981
Something as simple as the smell of baking, rather than disinfectant, can profoundly affect the experience of children and their families who rely on care services.
Read the report Bringing mentally handicapped children out of hospital in our archive.
Independence
The King’s Fund was also interested in the transition to adulthood for children with disabilities.
In 1979, we hosted a study day for the parents of children with disabilities, described in the 1980 report Rights of mentally handicapped people and their families. The workshop looked at:
- employment and further education
- housing
- health, sex and marriage
- civic rights (bank accounts, voting, libraries, etc)
- guardianship, trusteeship and property.
Parents were encouraged to plan for their children’s future as they entered adulthood and to become better informed about their rights and the services available to them.
View the report on the Rights for mentally handicapped people and their families.
In the same year, The King’s Fund held three study days looking at further education for school leavers with disabilities and examining the relationship between education and employment. Using case studies, participants discussed the barriers young disabled people faced in securing meaningful work.
Read our report on further education for school leavers.
In the next section, we look at how The King's Fund would build on this work by empowering disabled people to live their lives with greater autonomy.
‘For the first time I feel like an adult’
Independence and empowerment
During the 1970s and 80s, The King’s Fund’s focus was on improving the lives of disabled people by changing their environment. By the mid-1980s, though, the approach was evolving, placing greater emphasis on listening to the lived experiences of disabled people, and working closely with individuals and their families and carers to improve and enrich daily life.
In 1985, the Fund began collaborating with groups developing citizen advocacy schemes around the country, as well as members of self-advocacy schemes. A conference report from that year detailed discussions around advocacy principles, as well as noting a change in language around learning disabilities.
In 1987, The King’s Fund followed this up with training workshops to help people with learning disabilities develop self-advocacy skills. The accompanying report outlined the workshop content, teaching methods and practical considerations for setting up workshops.
Read our self-advocacy skills training report.
A year later, the Fund held a seminar for disabled people and those with long-term health conditions to explore how services could make links with each other, crossing the traditional boundaries between different types of disability.
Explore the report from our seminar, Making our voice heard.
So, lets start, with 'People First'.
One of the features of our workshop was the way we all struggled with the label 'mental handicap'. The new terminology, 'people with learning difficulties', was more evident throughout the day's discussions and everyone seemed more comfortable with it. The trouble is I don't know anyone who does not possess learning difficulties in some shape or form; but no one makes a point of emphasising this feature of their lives. David Ward has said, and I agree with him, that 'mental handicap' should be banished from use in the English language. This might cause problems, even an identity crisis, for service organisations, charities, and the like; but David's point is entirely valid. All the time we label people they find that their lives become prescribed and circumscribed by those with the power to do the labelling. It is the process of labelling that is the problem not the labels themselves. That is why understanding the significance of 'People First' is so important. Effective, innovative self-advocates like David Ward force others to recognise and respond to them as people first. A fundamental purpose of "Citizen Advocacy" is to ensure that people who cannot speak for themselves, and who experience all the disadvantages and deficits of being labelled 'mentally handicapped', also have the opportunity to push back - to force the world to recognise that they are people first.
Advocacy and people with long-term disabilities: a report of a conference held at the King's Fund Centre on 6 December 1984
‘I know best about me, but they don’t listen to me’: user involvement in service development and evaluation
The reforms introduced by the NHS and Community Care Act 1990 brought significant changes to how community care services were commissioned. This led to commissioners and health and social care providers becoming increasingly interested in how users experience services and their impact on quality of life.
Find out more about the NHS and Community Care Act 1990 and explore our work on evaluating community care.
In 1991, The King’s Fund published information sheets to support health service staff and local authorities in consulting with people with learning disabilities.
Our 1995 report, The power to change: commissioning health and social services with disabled people, continued this work, providing information and guidance for commissioners on how and, crucially, why they should draw on the expertise and lived experiences of disabled people when developing and evaluating community services.
Read our report, The power to change.
A key takeaway from the report is the profound difference that commissioning health and social care services with people rather than for them can make in improving user experience. It recognised that ‘services which are developed and run by users themselves are likely to be the most responsive and flexible, the most accessible’.
To help achieve this, the report included a checklist for creating responsive, flexible and accessible services.
The report stressed that ‘health gain is not necessarily about cure or even about prolonging life. It can be about removing disabling barriers, thereby enabling people to assert choice and control in their lives.’ This echoes The King’s Fund’s earlier work on autonomy and extends the concept to include giving people control over the care services they use.
Another major focus of the report was the valuable role that people using services can play in developing measurable standards when evaluating services.
This core idea of partnership between service users and those providing the services was the driving force behind the Living Options Partnership, a joint project between the Prince of Wales’s Advisory Group and The King’s Fund. The partnership ran for 10 years between 1985 and 1995 and published a number of reports looking at user involvement in service development.
View our user involvement reports in our archive.
Two projects enabled disabled people to design and carry out evaluations of community care services in their areas. The learning from these projects is summarised in our 1995 report Evaluating community care: a guide to evaluations led by disabled people, which contains practical advice on how to set up user-led evaluation.
Read the report on Evaluating community care in our archive.
User feedback in this report captures both the positive impact that listening to people can have but also the fact that it happens too rarely.
- ‘I know best about me, but they don’t listen to me.’
- ‘For the first time I feel like an adult’ (person having control over his own personal assistants).
- ‘When you really allow users a voice, it is a shock to the system for professionals.’
Outputs from this work by The Living Options Partnership and The King’s Fund included two briefings aimed at improving services for blind and deaf people. These documents built on feedback from groups of blind, partially sighted, deaf and partially deaf people who were invited to share their views and experiences of community care services.
We also published two papers on people with disabilities getting involved in or leading service evaluation projects. The first, published in 1995, discusses the benefits and practicalities of user-led evaluations and includes case studies on two Living Options Partnership projects in which disabled people evaluated community care services. The second, published in 1997, offered guidance for people with learning disabilities interested in service evaluation projects.
View our archive for more on our Living Options Partnership projects.
'Changing our days': a focus on accessibility
Looking at the reports we have just highlighted, involving service users in the development and evaluation of care was clearly a central theme for The King’s Fund in the 1990s. Many of our reports on this topic, including the ones we have already looked at, address the challenges and barriers people faced in being listened to by people designing services.
The Changing Days project led to even more work in this area, exploring how consultations with service users could be made more accessible.
In 1993, The King’s Fund ran a national consultation that identified the development of ‘day opportunities’ for people with learning disabilities as a priority. The Changing Days Project was launched in response to this consultation.
The three-year project sought to improve daily life for people with learning disabilities by enabling individuals to make choices about how they wanted to spend their time. Working across five development sites, the project helped to develop services that could help people move into adult education, find paid employment, create friendship groups, and develop skills and leisure pursuits based on their interests. It recognised that the best way to achieve these aims was by working with services users, carers and staff to understand and meet these needs. The project was later extended for a further two years to provide day opportunities for people with more complex needs.
The Changing Days project led to four publications that offered guidance on how to redesign day services to promote fuller engagement in the community. Although these publications were aimed at managers and commissioners, each of the books were produced with an easy-read summary to help service users understand the opportunities and choices available to them. These summaries were written in concise, easy-to-understand sentences and were supplemented with the use of symbols to make them easier to follow.
In 1999, we published Changing our days: finding ways to get what you want from life, a resource specifically for people with learning disabilities. It was a simplified version of a previous publication, written in plain language with accompanying symbols, and included an audio CD for those who preferred to listen.
Read the Changing our days resource in our archive.
The use of symbols in these books reflects a particular area of development at the time and something The King’s Fund was interested in. In March 1999, we published Symbols in practice, a discussion paper that gave an overview of the use of symbols for communication by people with learning difficulties. This letter from the paper illustrates the symbols in action.
Seeing the whole person
Earlier in this exhibition we explored how The power to change: commissioning health and social services with disabled people advocated for disabled people to be involved in decisions affecting their care, as well as the development and evaluation of services.
View The power to change report.
This publication emphasised not only the importance of autonomy but also the need to treat each person as an individual with unique needs and experiences.
It highlighted that disabled people have diverse needs and live in all types of households, across all sections of society. It emphasised to commissioners that they must consider that disabled people will need to use some services that are not provided purely for disabled people and design the services accordingly.
Linked to this is The King’s Fund’s work on the intersection between race and disability.
In 1990, Double discrimination highlighted the experience of people with learning difficulties from black and ethnic minority communities. Written from an anti-racist perspective, the report provides practical suggestions for service improvements.
Read our report, Double discrimination.
A subsequent report followed in 1995 and was published as a guide calling for services to be more culturally sensitive when developing services for Black disabled people.
Read the report on developing culturally sensitive services in our archive.
In 1998, The King’s Fund funded a piece of work by Sexual Health and Equality (SHE) UK. The project was the first of its kind to seek the views and experiences of Black disabled women around sexuality. Interviews were carried out with heterosexual women and lesbians and the resulting research highlighted the intersection of disability with race, sex, gender and sexuality and the discrimination experienced by disabled women from different backgrounds. Reflecting on their own experiences, women taking part in the research reported how their sexuality was often dismissed or ignored because of their disability.
‘They aren’t in the brief’: representation of disabled people
As well as giving disabled people a voice in service development and evaluation, The King’s Fund also recognised the importance of representation in how people feel about themselves.
One aim of The King's Fund Centre is to promote the integration and empowerment of people with disabilities, a task which demands a sensitive understanding of the significance and impact of imagery, language, tone and presentation.
They aren’t in the brief: advertising people with disabilities, 1989
In 1989, The King’s Fund published They aren’t in the brief: advertising people with disabilities examining how charities depicted people with disabilities in their advertising. It found that the advertising companies’ focus was on how these advertisements influenced the public’s perception of the charity’s brand, rather than whether the people being represented were portrayed fairly and respectfully.
Read our report, They aren’t in the brief: advertising people with disabilities.
Every advertising campaign sponsored by a disability-related charity will inevitably run the risk of harming the very people who are meant to ultimately benefit – that is, people with disabilities.
They aren’t in the brief: advertising people with disabilities, 1989
Despite evidence that negative images don’t necessarily generate more donations, advertising agencies and charities acknowledged that what constitutes ‘negative’ or ‘offensive’ is subjective. The report highlighted the delicate balance between eliciting empathy and maintaining a respectful portrayal.
As one advertising agency candidly stated:
If we could use the word ‘death’ we would raise more money and find the cure faster, but the person portrayed might read it.
Advertising agency, They aren’t in the brief: advertising people with disabilities, 1989
At the time, there were no established guidelines for how people with disabilities should be consulted regarding their depiction in advertising campaigns. Consequently, any involvement was sporadic, if it happened at all. Individuals who voiced concerns about their portrayal were often dismissed by charities and advertising agencies, sometimes even being seen as part of the problem.
How can they justify a campaign which brings in money but reinforces an employer’s assumption that I am unemployable?
Disabled person, They aren’t in the brief: advertising people with disabilities, 1989
The report concluded that there was an urgent need to develop practical guidelines governing the portrayal of people with disabilities in advertising. In response, in 1989 and 1990 The King’s Fund provided grants to support further work in this area.
Conclusion
Published to coincide with Disability History Month 2024, this exhibition opens up The King’s Fund’s archive and explores some of our past work on disability research. Remembering and learning from our past is essential if we are to continue tackling inequalities in health and care.
We have explored how our work has evolved since our earliest report in this area, which highlighted the need to improve old institutions. By the 1970s we were focused more on moving people out of hospitals and into the community. The benefits of improving care for people in the community became a strong theme through the 1980s, right up to the turn of the century, and was focused around the belief that everyone was entitled to ‘an ordinary life’.
By the 1980s and 90s publications such as our Home bound report contained more examples of people’s lived (and sometimes shocking) experiences in residential care and the need for this to be improved. As the 1990s progressed, our work continued to develop around the importance of independent living and access to care. That decade also saw a recognition of inequalities in access to care services and we published reports around how race, sex, gender and sexuality intersect with disabilities and affect people’s experiences of, and access to, good care.
Grants from The King’s Fund were used to improve services and fund practical projects, and we also collaborated with grassroots organisations, as well as pulling learning from places demonstrating good practice. The Changing Days project looked at helping people to live independently and The King’s Fund experimented with producing easy-read material for the first time.
There is also evidence of working with government to inform national policies and the development of our work around care in the community strongly reflects government policy of the time.
But more can and must be done to improve health and care for disabled people. Our biggest report in this area in almost 25 years was published in July 2022. Highlighting how the health inequalities already faced by disabled people were made worse by the pandemic, this was a joint research project carried out by The King’s Fund and Disability Rights UK. Picking up where past research left off, this report once again highlighted the importance of disabled people’s voices in planning and delivering health and care services, and better staff awareness and training about the barriers disabled people face.
Read our report produced with Disability Rights UK on our website.
Our most recent work on tackling the worst health outcomes more widely picked up on the need for better representation and co-production and an end to health inequalities and stigma. We are calling for action in seven key areas, to ensure that the NHS can better tackle health inequalities and improve care for those experiencing the worst health outcomes.
Read more about our seven priorities for action on our website.
Crucially, putting the voices of disabled people – and others facing inequalities – at the heart of service design is essential if services are to truly meet their needs.
Acknowledgements
Huge thanks go to the Disability and Long Term Conditions Staff Network for their support and guidance through all stages of the creation of the exhibition.
Further reading
Further reading from the 'an ordinary life' project is available from our online archive.
Download An ordinary working life: vocational services for people with mental handicap.
Download Ties and connections: an ordinary community life for people with learning difficulties.
Download The employment of people with mental handicap: progress towards an ordinary working life.
Download An ordinary life in practice: developing comprehensive community-based services for people with learning difficulties.
Built with Shorthand