Mental Capacity (Amendment) Bill [HL]

Written evidence submitted by Learning Disability England (MCAB39)

About Learning Disability England

Learning Disability England is a small, not for profit membership organisation. We bring together learning disabled people, their families, professionals and organisations to ensure all perspectives are considered in working towards our goal, to make life better for people with learning disabilities and their families.

Executive Summary

· We share the consensus that reform is necessary.

· We raise concerns about the extent of agreement raised to LPS proposals between learning disabled people, their families and social care providers.

· The removal of a citizen’s liberty should only ever be within a properly functioning judicial system. We are concerned exempting a particular group of people from this on the basis of their disability is effectively disability discrimination.

· Learning disabled people are anxious these proposals will return them to institutions.

· We think that the removal of an individual’s liberty, outside of the criminal justice system, should remain within the purview of the judicial system via the Court of Protection

· The model of funding, particularly for the private sector, creates potential perverse incentives in the conflict of interest between the financial demands placed upon local authorities for community support, and the more accessible, NHS funded healthcare costs for inappropriate inpatient treatment.

1. The Deprivation of Liberty Safeguards (DoLS) need reform. The Mental Capacity (Amendment) Bill introduces the Liberty Protection Safeguards (LPS) through amendments to the Mental Capacity Act 2005. It aims to provide the legal safeguards required under the European Convention on Human Rights for people who lack the capacity to consent to their care or treatment.

2. W e share the consensus that reform is necessary. However, significant areas of concern in relation to LPS remain. Many social care providers and charities have responded in detail to the committee. We do not seek to reproduce their objections, but to add concerns raised with us specifically by learning disabled people and their families.

3. We have particular concerns around this consensus of objections. Where disabled people and their families have been properly consulted and supported to give their views, there is typically some dissent. That dissent is a marker of the provision of suitable advocacy support during a consultation. T hose who are being deprived of their liberty, or love someone at risk of losing their liberty, should, in a correctly functioning sy stem have different priorities to those who decide on the removal of that liberty, or those whose role it is to provide the ongoing guardianship of that detention. Across the sector, providers, families and learning disabled people are unified in their objection to the manager of a service being the person who decides about the disabled person.

4. Liberty is the basic tenent of citizenship, and to deprive someone of their freedoms is the most serious duty of the state. For most people that duty would be carried out by the judicial system, ensuring evidence is heard impartially, representation provided and crucially that one is judged by a jury one’s peers. It is particularly difficult to do this for people who can’t decide for themselves, or who might be what is called a risk to other people without meaning to be, or without understanding what they have done. Usually when someone hurts another person, it will be the court and jury who decide what should happen. But, for some disabled people that decision can be made about them, without a court. We think that is a form of discrimination – it means that some learning disabled people are treated differently from other people, because they are learning disabled.

5. Learning disabled people are especially worried that this will be like going back to the days of the institutions. Historically decisions about disabled people were usually made about disabled people, without disabled people, by people like social care commissioners, or care home managers. These days most people know better and try to ensure they think about what the disabled person wants and needs. The person deciding about an individual should ask what the person thinks and feels, and if they are unable speak for themselves, then family, friends or an advocate should be consulted.

6. All of our members who told us what they think about this said it should be an independent person who gets to make decisions. Otherwise it is potentially as though judge, jury and gaoler are the same person. There won’t be anyone to help, or to appeal to if you don’t agree with the decision. Our members, Sunderland People First said There is a risk that we take away people's independence and giving power to people that may not be doing a good job - look at Winterbourne View.’ Our members, Grace Eyre Ambassadors told us very clearly, We do not want to go back to the days of the institutions!

7. Our family members said they thought that if a disabled person is going to be deprived of their liberty because of worries about the safety of others, then it should always be the Court of Protection to decide that. One parent of a young adult with learning disabilities and autism told us Families still have precious little influence in the care of their loved ones. Access to the Courts is expensive and time consuming – and providers know that. These amendments will make a poor situation even worse and make abuse of power by providers much more likely’.

8. In addition to the conflict of interest introduced by the registered manager making the decision about deprivation of liberty, and lack of advocacy support, we are particularly worried about the financial conflict of interest created by the funding models , particularly within the private sector. The person who controls an individual’s access to liberty and advocacy is employed by the organisation which receives income from providing the institutional place to that individual , which is an inherently dangerous model. In addition, the way in which funding for healthcare costs is borne by the NHS, whereas community support is funded by local authorities, creates financial incentives for local authorities to pass costs to the NHS. Without appropriate community funding, it is easy to see how individual lives become funding streams on a balance sheet, condemned to remain in inappropriate but financially accessible inpatient provision.

January 2019


Prepared 15th January 2019