We have used the terms listed below in the Green Light Toolkit, whilst recognising that some people prefer alternatives. Each term has its advocates and detractors, and so we ask the reader to look beyond the weaknesses of the language to the message of the Green Light Toolkit.
We recognise that people have different views about person-first language (‘people with learning disabilities’) and identity-first language (‘autistic person’) and support people in making their own decision about how they describe themselves and how they want other people to describe them.
Autism affects how a person sees, hears and feels the world, processes information and communicates with others. It is a lifelong difference which brings strengths that can enrich life as well as situations where the person may need support.
Family Carer means unpaid relatives (including a partner, parent or child as well as more distant relatives) as opposed to paid care workers. The family carer may share the home with the person they care for, or they may live elsewhere. On occasions the term ‘family carer’ could also be taken to apply to friends and neighbours who feel that they have caring responsibilities. As the Carer’s Action Plan 2018 puts it “a carer is considered to be anyone who spends time looking after or helping a friend, family member or neighbour who, because of their health and care needs, would find it difficult to cope without this help regardless of age or whether they identify as a carer.”
In the Green Light Toolkit, the term ‘harmful behaviour’ refers to violent actions taken by the autistic person or person with learning disabilities against themselves, other people or property as well as acts of fire-setting, sexual offending and terrorism. People told us that they felt that the alternative term ‘challenging behaviour’ is often used to locate the problem with the person rather than the environment, and ‘criminal behaviour’ suggests acts that are intended to cause hurt or damage. Some services refer to ‘behaviours of distress’, but it is not always clear that distress drives these actions. Lifestyle issues, like the harm caused by unwise decisions such as smoking, a poor diet and exercise regime or reckless sexual conduct are not included in this item and belong elsewhere. We recognise that no term suits everyone and encourage people using the Green Light Toolkit to look for the reasons behind such moments and to recognise the harm caused by the incident itself and inappropriate responses to it.
Autistic people and people with learning disabilities who have mental health issues have a right to full and effective participation in society on an equal basis with others. This includes participation in education and health, the labour market, access to justice, home and family life, information, political and cultural life.
People with learning disabilities have a significantly reduced ability to understand new or complex information, to learn new skills and cope independently. This started before adulthood and has a lasting effect.
Mental Health Issues
The term mental illness is generally used to refer to the more serious mental health challenges that are often treated by specialist services. Such illnesses include depression and anxiety as well as schizophrenia and bipolar disorder. In the Green Light Toolkit we refer to mental health issues rather than mental illness.
The term reasonable adjustments was first used in the Disability Discrimination Act 1995 and refers to the duty on those providing goods, services and employment opportunities to ensure that their arrangements do not discriminate against disabled people. Public Health England has declared that, under the Equality Act 2010, public sector organisations have to make changes in their approach or provision to ensure that services are accessible to disabled people. Reasonable adjustments can mean alterations to buildings by providing lifts, wide doors, ramps and tactile signs, but may also mean changes to policies, procedures, and staff training to ensure that services work equally well for people with learning disabilities and autistic people.
Universal Design is a concept that was put forward by the United Nations in its 2006 Convention on the rights of persons with disabilities. It says that the following provisions are needed in this sequence:
- basic designs to meet the needs of the greatest number of the population;
- alternative designs for those who need them, such as environments that can be individually controlled through the use of lighting dimmer switches and so on;
- additional assistive technology should for those who require it, and finally;
- Personal assistance should be available for those for whom nothing else will work.