How do we move beyond platitudes and empty words in our response as a society to the systematic and widespread abuse of people with learning difficulties?
The BBC Panorama programme ‘Undercover Hospital Abuse Scandal’ shown on 22.05.19 shows devastating treatment of people with learning difficulties and a lack of respect for their human rights. The Position Statement below is PSC's response.
The issues documented in the programme in long-stay hospitals are recurring and therefore cannot only be attributed to an individual failure of care by a specific group of staff in a particular institution. They must be seen as reflecting a range of failures of health, education and social services throughout the lifespan of the person who needs support. Of course, those involved need to be held accountable for the horrific nature of their actions in accordance with the law. However, there is a pattern to the continued abuse of people with learning difficulties (*please scroll down for a discussion on language) that silences, marginalises and excludes them from vast sections of society and makes abuse more likely.
More children are being admitted to long-stay hospitals. This increase coincides with the government’s austerity agenda, where there has been a reduction of funding in real terms for social care and education. This equates to cuts in services, with families being unable to access respite support such as short breaks or community activities which meet the needs of children and young people with learning difficulties or autism. In the education system, the focus on a narrow range of academic educational outcomes, alongside less money, has led to a curriculum environment that cannot tolerate diversity in children’s approaches to learning, and staff who do not have the training and support to make sense of the behaviour of children whose needs may be harder to understand. Children with learning difficulties are being off-rolled or excluded if they cannot meet the behavioural expectations of the classroom. Such actions do not always lead to the child being able to access a more suitable placement.
These cuts to services reduce the wellbeing of individuals through limiting their access to their community or preferred activities, and isolate families. It changes the focus of the services to firefighting crises, rather than on the long-term work of building the capacity, through infrastructure and human resources, that enable people to live fulfilling lives.
Lack of services and opportunities
On transition to adulthood, there has not been the investment in small (no more than 8 people in one place), supported environments which enable young people with learning difficulties to live close to home, within the communities that they grew up in and near to family and friends. In addition, cuts to social services means that there are few services which can offer a high intensity of support to people in their own homes, enabling people to learn to look after themselves within a supportive environment. For people with learning difficulties who want to work, there are few opportunities to contribute in a valued way to their community and to be recognised for that effort with a meaningful wage. Such a lack of services and opportunities means that people are not safe from exploitation and abuse within their own communities and are vulnerable to ‘mate crime’. These things combined means that there is no alternative to long-term hospital stays for people who can no longer be looked after at home, or who cannot look after themselves with minimal support in their own home.
At times, people with learning difficulties, like all people, need additional help to develop new skills and cope better with the demands of everyday living. Often, when the person is very distressed or behaves in ways that perplex or frighten others, this support is offered in residential placements. Such providers need to have a clear remit and the additional value and skills that they can offer need to be made clear. Too often, a specialist placement merely means that somewhere calls itself a ‘specialist placement’. Additionally, providers of such 'specialist care' are incentivised to, not discouraged from, holding people with learning difficulties for as long as possible. In a privatised sector, filling beds means that the bottom line is met and profit is assured. Without active dis-incentives, such as meaningful financial penalties equivalent to the entire fee for every week over six months that a person spends in a specialist healthcare hospital, the system is loaded towards people becoming long-term patients.
Training and culture
One of the most painful aspects of the programme was the attitude and behaviour shown by individual staff members. In order to do their jobs well, staff need to be trained to see people with learning difficulties as people who are trying to get their needs met as best they can. This requires learning to see behaviour as a communication and having the skills to respond to people who are distressed. People need to be taught how to do this; no-one can develop into a skilled practitioner without support. Staff cultures also need to be designed, supervision needs to be built into the working day, be focussed on values and issues of power, and be a space where everyone is able to raise concerns about practice. Throughout education, health and social care, cash-strapped services fail to invest in sustained ongoing training and supervision that is tailored to help staff respond to the needs of individual people in their care.
The lack of local supported homes for people with learning difficulties, the lack of valued work and the lack of community activities is not down to funding alone. Commissioners and regulators are not accredited professionals with training, development, accountability and supervision, overseen by independent professional bodies. Furthermore, the development and sustainability of such key community resources will fail to meet the needs of the very people that they are meant for, if those people and their families are not included in deciding what services are needed, how they are delivered and whether what they are receiving is worthwhile.
The voices of people with learning difficulties are too easily sidelined, ignored or silenced. In the Panorama programme itself as well as in media response to the programme, the social expectation that people with learning difficulties are not people who can meaningfully comment on their own experience was clear. This widely held attitude contributes to an environment where people with learning difficulties and their families are not believed when they raise concerns about care. We need to continue to challenge this injustice in our own campaigning. At the very least, we should all remember that once the media coverage, investigation and reports stop that abuses like this will continue happening until the changes are wide ranging and exist at the individual, group, institution, service, local authority, health trust and commissioning level. Such profound change can only happen if all of society, not just the individuals working face-to-face with people with learning difficulties every day, make adjustments to include and welcome people with learning difficulties.
A WORD ABOUT LANGUAGE
There are many terms used to describe the group of people who were living at Whorlton Hall when the Panorama documentary was filmed and who were abused by the staff there. Many of the terms feel very medical or are associated with the negative ways society sees people who have significant support needs. In everyday language, ‘learning difficulties’ can give us an intuitive sense of the needs a person might have. The phrase ’learning disabilities’ is also widely used. It has a specific medical meaning, as well as an alternative legal definition. Some people prefer the term ‘learning disabilities’ and feel that the phrase ‘learning difficulties’ does not go far enough in being clear about the specific needs of the people who would be placed in Assessment and Treatment Unit like Whorlton Hall. These people are using the medical definitions of ‘disability’ and ‘difficulty’, as defined in psychiatric textbooks such as ICD-10 and DSM-V. However, the term ‘learning disability’, when used in a legal sense (Equalities Act, 2010), might not be any clearer in describing people’s needs, as it simply indicates that the person has ‘substantial’ and ‘long-term’ needs and is therefore entitled to ‘reasonable adjustments’ to enable them to partake fully in their community. Therefore, both terms can be used to describe very different people. For instance, someone who struggles with some aspects of reading and is therefore categorised as ‘dyslexic’ and someone who can only rely on their behaviour to communicate their needs. The phrase ‘learning difficulty’ was used in the Panorama programme and is therefore the word used in this statement.