Human rights: empowering people with learning disabilities and/or autism Listening to the news this morning I was pleased to hear former Care Minister Norman Lamb describing the poor treatment of people living with a learning disability(s) and/or autism as a human rights issue. The fact this happens, even after Winterbourne View and similar tragedies, is a sad indictment of our system, and one which has significant human cost. But using human rights to find a solution gives cause for hope. Empowering people The Human Rights Act means that anytime we interact with a public service, its officials need to respect and protect our human rights not just as a nicety but as a matter of law. For many people, including people living with a learning disability(s) and/or autism, and their families, this can be a game changer. Human rights can help redress the power imbalance, turning the conversation from an appeal to conscience or fairness or dignity, to one which is about legal duties on services to fulfil rights. The same rights that we all share, whether we receive a service or help provide that service. Being empowered by human rights enables people to stop poor treatment from happening or address it when it does happen. Essentially human rights is the language to prevent abuse, to stop a breach of a legal duty, or to remedy a situation and change a decision before things get worse. This places people in strong position to negotiate for better outcomes from services, without the need to go to court. Take the story of Gemma, who is part of our current project to empower support groups and service-users to better advocate for human rights. Gemma is in her 40s, and has a learning disability. When her mum passed away the local authority paid for Gemma to be placed in a care home. But it was an older people’s home, completely inappropriate for Gemma and did not provide the support she needed. Gemma was locked into the home, unable to come and go as she had when living with her mum. Although Gemma was distressed by the situation she didn’t want to raise it directly with the home so she contacted her local Healthwatch. The Healthwatch staff had been working with BIHR and decided to arrange ‘Enter and View’ visits to five local care homes, so as not to identify Gemma. They talked to staff and residents about whether they were able to come and go, which is part of their right to liberty protected by the Human Rights Act (Article 5). Using human rights in this way shone a spotlight on Gemma’s situation and the local authority now support her to live independently in her own flat where she is much happier. Through our current project, which works on mental health and mental capacity broadly, it was clear that there is a specific need for more human rights resources for people living with a learning disability(s) and/or autism. People told us they wanted a booklet to take to meetings, to show officials and to go through the decisions that affect their lives. People told us they wanted posters about their human rights which they could display in their community spaces, and share with the services that should be respecting and protecting their rights. Being guided by what people themselves told us, along with families, carers and support groups, we produced Learning Disability(s), Autism and Human Rights, along with posters. Changing Services This project mirrors one we have recently completed with frontline practitioners providing services, which lead to our 8-piece toolkit on using human rights in the delivery of mental health and/or capacity services. There we saw how empowering staff on human rights, and particularly their legal duties under the Human Rights Act, meant they could challenge their own practice and change decisions and behaviours, policies and practice. As one service head says: “it has revolutionised decision making. People are thinking differently and making decisions differently. It needs to be rights based not just risk based.” So now instead of all young people having no access to the phone or the internet upon entering a mental health unit for fear of risk, there is a process to manage this and ensure children can remain in contact with their loved ones, a vital part of their right to respect for private and family life (protected by Article 8 of the Human Rights Act). At a recent meeting with an NHS Trust Board I was asked an all too familiar question: our staff already comply with the Mental Health Act (MHA) or the Mental Capacity Act (MCA) so why do we need to think about human rights, isn’t it just more confusion for our staff. My team and I spend hundreds of hours with thousands of practitioners. No matter how reticent some may initially feel about human rights (and they do) that light bulb moment happens. The realisation of the “why” behind other laws, and how this can change decision-making. Ultimately, that the delivery of positive care is not simply about applying the MHA or MCA, but rather it is about seeing the person in front you as a human being with rights, and it is your duty to respect and protect those rights, emboldening you to stand up with and for that person to get the best for them. As the staff we work with tell us: “Understanding human rights puts all the legislation in proper context” “This has been a way of providing a different focus which helps support our service users live independently with dignity, respect and pride” “Although we are a values based service I really needed to know how to put human rights into practice. We needed that integrity” “It’s very enabling and there have been many light-bulb moments – it’s turned decision making on its head” Spread the word So as we enter #7DaysOfAction, a family-led campaign which raises awareness of the stories of people with lived experience of inpatient settings, we need your help in getting our free resources into the hands of people that need them! Please spread the word via social media, you can find us on Twitter @BIHRhumanrights and Facebook “The British Institute of Human Rights”. Free copies of resources can be downloaded here, but you can also get hard copies by contacting us on [email protected] or 0207 882 5850.