Mental Capacity (Amendment) Bill [HL]

Written evidence submitted by Inclusion London and People First Self-Advocacy (MCAB46)

This submission was prepared by Inclusion London and People First Self-Advocacy. We based it on the feedback we received during our consultation with people with learning difficulties and their relatives. This submission is also supported by other Self-advocacy groups which are run and controlled by people with learning difficulties:

· Inclusion Barnet

· Speak Easy Now

· North Somerset People First

· Wiltshire People 1st

· Bromley Speak Up Group

· Lewisham Speaking Up

· The Learning Disability Voices Network: Brighton and Hove Speak out

· Portsmouth Self Advocacy Group

About Inclusion London

 

Inclusion London is a London-wide user-led organisation which promotes equality for London’s Deaf and Disabled people and provides capacity-building support for over 70 Deaf and Disabled People’s Organisations (DDPOs) in London and through these organisations our reach extends to over 70,000 Disabled Londoners.  

About People First Self-Advocacy

 

People First is an organisation run by and for people with learning difficulties. The organisation aims to speak up and campaign for the rights of people with learning difficulties. We also aim to support self-advocacy groups across the country in their work.

Summary

 

As organisations that are run and controlled by Disabled people we are extremely concerned that the proposed Mental Capacity Amendment Bill will negatively affect the human rights of thousands citizens in England and Wales with conditions including dementia, learning difficulties, autism and brain injuries, as well as their families and supporters.

Our concerns are echoed by leading academics and lawyers, other third sector organisations and general public [1] and are also reflected in the amendments to the Bill put forward in the House of Lords most of which we understand have been rejected by the Government.

We recognise that it is difficult to design a proportionate system that would respond to the needs of a very diverse group of people in very different circumstances. We believe the system needs to be simple and effective for professionals to implement, but most importantly it should offer robust guarantees and safeguards that promote Disabled people’s right to liberty. It should be legitimate in the eyes of those who face a deprivation of their liberty

We are very disappointed that the government failed to engage with Disabled people and their organisations when designing the system and we are deeply unhappy with the fact that the Bill is being pushed through Parliament with such speed further excluding Disabled people and our organisations from voicing our concerns. We accept there is a need to deal with the backlog of cases which built up after Cheshire West decision in the Supreme Court. However, it in no way can justify rushing through ill thought reforms. It is not right to reduce protections for everyone just because the system is not able to cope with current case load.

Not only does the Bill go against all the principles in the UN Convention on the Rights of Persons with Disabilities - CRPD [2] , which the UK is a party to, it will significantly weaken the few existing protections people have and still raises questions about the compliance with Article 5 of the European Convention on Human Rights. The Bill has been improved in the House of Lords by the Government itself and by the Peers, who had to push amendments to ensure the person concerned is informed of their rights and clarified the "necessary and proportionate" test. We believe very important issues still remain, which include:

· Ensuring deprivation of liberty is only used as a matter of last resort and all less restrictive alternatives are explored beforehand;

· Removing conflicts of interests that still remain in the process and ensuring there is a truly independent review in every case;

· Ensuring an unqualified, easy and effective access to advocacy for everyone faced with a potential deprivation of their liberty;

· Enabling appeals

· Implementing wider reform to make the Mental Capacity Act more compliant with international human rights standard

People with learning difficulties who have spoken to us told us about a huge power imbalance between themselves and care professionals. Many of them have experienced bad decisions being made for them, which they had to fight to overturn. The Bill gives more power to those professionals when it comes to deprivation of liberty and very worryingly removes independent reviews by trained and qualified specialists for the majority of cases.

"X told us a story how a social worker tried to prevent her from getting married and force her to live in a care home. X got help from local self-advocacy group and obtained legal advice and representation, so she could challenge this decision. She challenged that decision successfully and has lived with her husband happily for 10 years.

"If she got her way, I’d be in care home, miserable and feeling sorry for myself every day of my life".

C is a young woman, who lives in her own flat with support and is enjoying her life only because her mother challenged the local authority’s determined attempt to put C in a care home. Her mother was able to become her deputy for welfare and could make decision where C would live.

Alternatives to Deprivation of liberty

 

We believe in order for the Bill to be more compliant with the UNCRPD and with article 5 of the European Convention on Human Rights it should make it clear that Deprivation of liberty should be used as a matter of last resort. The UN Convention on the Rights of Persons with Disabilities makes it clear that states should not deprive people of their liberty solely on the basis of their disability. It also requires states to put in place necessary support to enable Disabled people to enjoy their right to living independently and being included in the community.

When deprivation of liberty is considered as part of the care planning process it should not be possible to authorise it when less restrictive alternatives exist or could be put in place. It is vital that all possible less restrictive alternatives are considered fully, if this requirement is not fulfilled the decision-making process will be flawed and people will be deprived of their liberty unnecessarily.

In our work we come across many situations where people are forced to live in or move to a care home without thorough consideration of how they could be supported in the community. In practice too often Disabled people are deprived of their liberty because it is the most convenient and safest option for professionals to implement, because of the lack of resources and support in community.

Article 5 of the European Convention on Human Rights requires that alternatives to a deprivation of liberty should be considered. This is not reflected in the Bill. This principle is fundamental to protecting Disabled people’s right to liberty and should be a central tenet of the Bill. We believe the Bill should require the responsible body to consider alternatives that exist and alternatives that could be reasonably put in place. There must be a written record of this consideration. It is also important that in cases when authorisation has been granted less restrictive alternatives are considered as part of every review and a plan of actions to put in place less restrictive alternative is developed after each authorisation. We believe public bodies should be required to take active steps to promote Disabled people’s right to liberty.

Conflicts of interest and the lack of independent scrutiny

 

Article 5 of the European Convention on Human Rights requires an independent review of whether or not conditions for deprivation of liberty are met. Despite some changes to the Bill made by the Government it still creates the system where important steps which will have significant consequences will be taken by professionals who have conflicts of interest.

For instance besides having ability to choose who will do the assessments the care home managers, who in the vast majority of cases will have financial and other interests in getting an authorisation to deprive person of their liberty, will still be responsible for identifying whether or not a person is objecting to the arrangements and what person’s wishes and feelings are. Although the government agreed to prohibit some individuals who have connection with care homes from undertaking the assessment, it is still possible that care home managers will choose the assessors who are more likely to agree with their views. Those care home managers are also supposed to undertake reviews of authorisations.

We do not believe care home managers should have any role to play in this process. There is a huge distrust between care home managers and people with learning difficulties. We heard from people who told us they cannot speak truly about their wishes when managers of a service re there, because they are too afraid of possible negative consequences of doing so. This new system will only increase the distrust and power imbalance that already exist.

It is also not clear how much those who authorise the arrangements will be independent from those who make decisions about commissioning care and placing a person in those arrangements. A social worker deciding that it is most appropriate for a person to receive care in a care home may well be the one who authorises the deprivation of liberty.

We are particularly concerned about the fact that hospital managers of independent hospitals will be authorising deprivation of liberty and carrying out reviews when there is a clear financial conflict of interest, as there could be a motivation to maximise the profit and therefore keep most patients within their service for as long as possible.

We know of cases where independent hospitals get people to the point where they feel better, but then do not do anything to support a person to move on to the community placement. We believe hospital managers of independent hospitals should not be responsible bodies and deprivation of liberty should be authorised by the local authority or CCG that commissioned treatment in independent hospital prior to the placement. All such cases should be a subject to a review from Approved Mental Capacity Professionals (AMCP).

We believe the system should insure that assessments, authorisation decisions and reviews are made by professionals who are truly independent.

Access to independent review s

 

Although the government is saying that there will be an independent review in each case, we are not convinced this will be the case. At the moment in our view the only people who are likely to get a review by qualified professionals with appropriate knowledge of the law and available alternatives to deprivation of liberty are those whose cases will be reviewed by the AMCP. We do not think limiting the review from AMCP only to cases when there is an objection from the person concerned is a good enough safeguard, especially in a situation when a care home manager or a hospital manager is tasked with identifying whether or not individual is objecting. In addition in many cases deciding whether or not a person is objecting is not easy and there may be different opinions.

There should be a much wider set of circumstances when a review from AMCP is required and the list of people who could trigger a review from AMCP should include relatives or anyone interested in person’s welfare and IMCA.

Advocacy

 

Access to advocacy is an important way to ensure the voice of individuals is heard and their rights are protected. Disabled people who took part in our consultations told us that an advocate for them is someone who helps them to get their voice heard and someone who can help them to understand what is going on, who makes their voice heard, who fights their corner and can help to challenge decisions. An advocate should help a person to understand the options they have and support them to make decisions. Many people told us that currently advocates cannot do their job properly, because they are not resourced properly.

We are very concerned that access to advocacy is still limited. It is based on a complex capacity and best interests assessments and whether or not there is a relative or a friend who would help. It seems to us that the system of relying on relatives is mirrored from the Care Act advocacy. We do not believe there is evidence that the Care Act model is working well to ensure everyone who needs it has access to advocacy. The number of referrals is very small and we know from our experience how difficult and sometimes almost impossible it is to get an advocate in the Care Act process if there is a relative even when relatives are not able to support.

Relatives have an important role to play, but they cannot be a substitute for a trained professional. There are situations when relatives have their own interests which conflict with interests of an individual concerned. Many relatives who will be appointed will struggle to understand how the system works and how to navigate it. We believe it is not fair or practical to rely on relatives to perform the role of an advocate as a default position. It seems to us that this model is aimed at saving money on advocacy than enabling individuals to take part in the process or challenge decisions.

Basing access to advocacy on capacity and best interests assessments is limiting the right of a person to challenge their deprivation of liberty. It is not clear how those capacity and based interests assessments will be done, who will do them, who will pay for them and most importantly what will be the process for challenging the outcome of those assessments. Will the person ultimately have to go to the court of protection just to challenge the fact that an advocate has not been appointed for them?

Advocacy is an important safeguard against arbitrary deprivation of liberty. We believe an advocate should be appointed in all cases unless the person is actively objecting. The Bill should require access to advocacy from when the authorisation is being considered, not only after it was approved. This will ensure the person is included in the process and can make their views heard.

Advocacy services should be resourced to ensure individuals have access to advocacy from the beginning of the process.

Enabling appeals

 

We also believe the Bill does not include sufficient provisions to ensure everyone is supported and enabled to exercise their unqualified right to have their deprivation of liberty reviewed by a court or tribunal as required by article 5 of the European Convention on Human Rights.

The right to challenge deprivation of liberty in court or tribunal is unconditional and it cannot depend on what professionals think. Therefore, the law should ensure this right is practical and effective. In reality many people who are subject to deprivation of liberty authorisation will find it hard and almost impossible to start a case themselves. It is totally disingenuous for the government to say that a person, who lacks capacity to consent to arrangements, lacks capacity to ask for an advocate can easily start the process in the Court of Protection.

Our experience shows that relatives supporting them are often lost and confused, because the process of applying to the Court of Protection is not accessible. It is not appropriate to leave the duty to bring cases to court to under-resourced and overworked advocates. Responsible bodies should have a duty to refer all cases where a person is objecting to the Court of Protection. Likewise, AMCPs should have a duty to refer cases to court when they think it is appropriate to do so. There must be a presumption that a person will give evidence in the case about them.

The government has tabled an amendment which deletes the duty on local authorities to refer cases to the Court of Protection. We can only interpret this as an active attempt to limit opportunities for a person to appeal. We are also worried by the rhetoric in previous debates about the Bill where the minister assumed that the fact that a case gets to the Court of Protection is a bad thing. In many cases it is the first time where decisions of professionals, the evidence they used are properly scrutinised. Easy access to appeals could help to improve the system.

The right to information

 

It is absolutely important that individuals who are deprived of their liberty and their families are given information about their rights and supported to understand and act upon it. We therefore welcome the amendment that was made to the Bill in the House of Lords. The right to information should be protected and strengthened by placing a duty on responsible bodies to provide individuals concerned, their relatives and other people concerned with their welfare with a copy of an authorisation record in accessible format.

16 and 17 year old individuals

 

There has to be a wider consultation and clarity about extending the scheme to 16 and 17 year olds. We believe there is a risk that the new scheme will make it easier for authorities to remove young people from the care of their families despite objections from the families. We are concerned those provisions will make it far too easy to institutionalise and exclude young people from society instead of setting up effective support to ensure they can get education and support in community as required by the UN Convention on the Rights of Persons with Disabilities.

The wider reform to the mental capacity legislation and strengthening human rights

 

It is deeply disappointing that all recommendations of the Law Commission which were aimed at strengthening Disabled people’s rights and bringing the law more closely aligned with the UN Convention on the Rights of Persons with Disabilities were not included in the Bill. This again suggests to us that important rights were sacrificed to push the Bill through the parliament to address the backlog problem.

Article 12 of the UN Convention on the Rights of Persons with Disabilities requires that each Disabled individual should have support to exercise their legal capacity. Although the Mental Capacity Act requires that a person is given support to make decisions for themselves, in reality it does not happen.

It is hard to overestimate how much Disabled people value their decision-making capacity. It is discriminatory when decisions are made for Disabled people, especially when those decisions clearly go against all wishes and feelings of the person concerned. This is often caused by a huge power imbalance which is allowed by the Mental Capacity Act, as professionals and others can use general defence to justify decisions they make for Disabled people.

Although the law requires others to only make decisions that are in Disabled person’s best interests, the best interests test itself does not require placing greater weight on person’s wishes and feelings. This goes against the principles set out in the UN Convention on the Rights of Persons with Disabilities. The law commission recommended changing the best interests test to place more weight on person’s wishes and feelings. The government initially accepted this recommendation, but the Bill is silent about this.

The Bill should include this amendment and also amendments allowing a person to nominate someone who will support them to make decisions. Those amendments will make the law much more compliant with international human rights standards.

The lack of consultation with people affected by the Bill and their organisations

In many important aspects the Bill is at odds with what has been proposed by the Law Commission after it undertook its review and engagement to develop proposals for reforming Deprivation of Liberty Safeguards.

There is no evidence of the engagement with people who are affected to discuss the divergence from initial proposals. Despite all the promises, as far as we know there has been no meaningful engagement with organisations that are run and controlled by Disabled people until very recently [3] . We believe it is unacceptable and potentially in breach of the Equality Act and Public Sector Equality Duty that none of the materials for the Bill and the Bill itself are available in alternative formats, especially in Easy Read – thereby excluding at a stroke groups of Disabled people most likely to be affected by this legislation. This indicates to us that people, who are affected could not and still aren’t able to meaningfully engage and comment on the proposed changes [4] .

Likewise, too many important issues, which will have an impact on Disabled people’s right to liberty, are left for the Code of Practice, the draft of which has not been published or consulted on either. The government has published its Equality Impact Assessment for the Bill only on the 17th of December 2018, which also raises the question about compliance with the Public Sector Equality Duty.

We therefore believe the passage of the Bill should be halted at least until all the materials are available in accessible formats, the government has consulted with Disabled people and their organisations as required by the UN Convention on the Rights of Persons with Disabilities, the Equality Impact assessment has been published.

January 2019


[1] Our petition about the Bill was already supported by 146,250 people

[2] The Bill goes against the following key articles in the United Nations Convention on the Rights of Persons with Disabilities: 12, 14, 17, 19. In 2017, in its Concluding Observations for the UK Government, the UN Committee on the Rights of Persons with Disabilities has urged the UK government to "Repealing legislation and practices that authorize non-consensual, involuntary, compulsory treatment and detention of Disabled people on the basis of actual or perceived impairment or any form of forced intervention or surgery" and "allocating appropriate funding and setting up adequate support systems to enable Disabled people to live in the community in a place of their choice".

[3] This is required by article 4 of the UN Convention on the Rights of Peron’s with Disabilities. The UN Committee on the rights of Persons with Disabilities made it clear in its General Comment 7 that these can only be organisations that are run and controlled by Disabled people.

[4] The lack of information in alternative formats is potentially a breach of duty to make reasonable adjustments under the Equality Act 2010.

 

Prepared 16th January 2019