There has been a lot of attention on Parliament due to Brexit in the past few months, but little focus has been given to what is a hugely significant piece of legislation that has been making its way through parliamentary processes.
The Mental Capacity Act (Amendment) Bill was first published in July 2018 and has the potential to significantly impact on the lives of disabled people, and organisations who provide care and support. To tell the story of the Bill and the impact it could have it’s probably easier to start at the beginning of the journey.
The Mental Capacity Act (2005) was a landmark piece of legislation which sets out how health and social care providers must support individuals who might not have the capacity to make some or all decisions for themselves.
The Mental Capacity Act is about supporting people and keeping them safe, one element of which may involve putting in place certain restrictions; this might include the use of locks or key pads which stop a person from going out or into different areas of the building. The Mental Capacity Act sets out how to assess whether this is needed and how to involve the person to ensure it’s in their best interests. In this situation, anything which might be deemed as restricting someone’s liberty has to be approved and evidenced that it is the ‘least restrictive’ option. This is known as a Deprivation of Liberty Safeguard (DoLS).
Whilst the Mental Capacity Act and the DoLS system were welcome, there have been some day to day challenges with how it is implemented. The main issue relates to the delays in DoLS applications being authorised. A recent data release showed that in March 2018 there were 125,630 applications awaiting authorisation, with nearly 40 per cent of these having been waiting for over a year. As a result, people are likely to have restrictions in their life without the necessary safeguards and best interests considerations in place.
It is because of these challenges with implementation that we at Sense had joined the wider call of the sector to reform and streamline the process. This was vital to ensure that disabled people weren’t being unnecessarily deprived of their liberty or having these arrangements reviewed to ensure they were in their best interests.
The result of the sectors campaigning work, however, is not what we were expecting. The Law Commission carried out extensive consultations and published a draft amended Bill which we broadly supported. Sadly, the bulk of the Law Commission’s work wasn’t included in the Bill when it was published by Government in the summer of 2018.
It’s at this point where I could list a whole number of reasons why we believe that the Bill as it stands isn’t fit for purpose. I could reference the revised role of care home managers in the process which introduces conflict of interest, the lack of impact assessment, the reduction of rights to advocacy, the length of renewals being extended to 3 years or many other things. The element that stands clear amongst all of the technical concerns is, where is the person in all of this?
At the heart of any decision about care and support should be the person themselves; they should be central to everything and given the chance to make choices about how they live. Through our emphasis on total communication, at Sense we have developed a range of approaches and tools, such as decision making profiles; to support people to be involved in decision making and have choice and control over their lives.
The Bill may make some references to people making choices about how they live but the pace of its journey through Parliament has not allowed for engagement with people who it will affect, or the people who support them.
We have been working in a coalition of many equally concerned organisations who have been holding on to the coat tails of the Bill as it careered through the Lords and now into the Commons, keeping up with proposed changes and edits as fast as we could. There hasn’t been time for us to consult the people who matter in this.
It is important to remember that the Bill has come a long way since it was first published in the summer, but there’s still a long way to go. A key success was the introduction of an amendment which set out the rights of the person and their family to receive information about their rights and what the process of DOLs entails. This is a key priority for us at Sense, and it’s vital that it remains in the Bill as it continues.
The intention of the Bill was to reduce the backlog and to simplify the system, but as it stands I have no confidence that it will achieve either. Whilst we need to resolve the backlog – and it’s important to remember that this isn’t simply a case of ‘clearing it’ – we need a system that’s fit for purpose and champions the rights of the person first and foremost. The bill isn’t there yet, so we will keep going until we are.
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