Personal stories - safeguarding & liberty

Delighted to be contributing a regular column for the PWSA UK newsletter. My articles all focus on transition to adulthood with an emphasis on some of the real issues that have arisen for me and my family as our disabled child grows into adulthood. Telling can be hard, especially when what we have to say touches on the lives of others that we love very much. But, if we really want to be heard, we do have to speak up.

I agree with American filmmaker and screenwriter Dustin Lance Black that telling our own stories is a good way to try and change people's hearts and minds. Dustin talks about personal storytelling as a way for LGBT people and all minorities who are treated differently by society to be heard and accepted. He is persuasive.

In my latest newsletter article, I tell how, as soon as my son reached 18 years old, his social worker told me I was no longer allowed to lock the door to a room in our house which contained equipment which I feared might harm him. ‘He has the right to make his own decisions and it’s against DoLs,’ she said. What’s DoL’s? I thought, imagining a whole load of angry Barbie’s trailing me about and kicking me in the shins. Later that afternoon a quick google revealed the answer. Deprivation of Liberty Safeguards (DoLs) were originally placed within the Mental Capacity Act 2005 with the best of intentions to prevent carers from putting inappropriate restrictions in place. But, as the campaigner Rosa Monkton has highlighted, DoLs can also act as a barrier to keeping a cared-for person safe from harm. In fact, restricting something isn't necessarily a deprivation of liberty if an individual's diagnosis indicates that they may not have capacity to make safe decisions in relation it.

The Mental Capacity Act Code of Practice states that restrictions may be put in place if (a) You deem that they are necessary, (b) There is a risk of harm to the person if these restrictions are not put in place, and/or (c) The person lacks capacity to understand interventions. But professionals continue to be confused by DoLs and parents can find themselves in the position of having to fight for the right to put boundaries in place to ensure their child is not exposed to danger.

Thankfully, the Mental Capacity (Amendment) Act 2019 has now received Royal Assent and become law. The new legislation provides for the repeal of the Deprivation of Liberty Safeguards (DoLS) contained in the Mental Capacity Act 2005, and their replacement with a new scheme called the Liberty Protection Safeguards (LPS) The LPS establishes a process for authorising arrangements enabling care or treatment which give rise to a deprivation of liberty within the meaning of Article 5(1) of the European Convention on Human Rights (ECHR), where the person lacks capacity to consent to the arrangements. It also promises to provide for safeguards to be delivered to people subject to the scheme. Let's hope it delivers on that promise.

(The government has not yet announced the date on which LPS legislation will come into force. But it could be as early as Spring 2020. The government has confirmed that for up to a year the DoLS system will run alongside the LPS to enable those subject to DoLS to be transferred to LPS in a managed way.)

Please note that I am not an expert in law. Always check facts for yourself.

An open door offers both freedom and risk.