Joint Committee on the Draft Mental Incapacity Bill Memoranda

MIB 61

Please find enclosed our response to the most welcome 'Mental Incapacity Bill' which will clarify the decisions making process particularly in our area of concern for families with a dependant son, daughter or, relative having a permanent mental handicap/learning disability and who are without capacity to make considered long term decisions on their own behalf

The appointment of a 'deputy' in such cases as been long needed and will be very much appreciated.

We thank the department for the extensive consultation and the opportunity to respond to the Parliamentary Scrutiny Committee the members of which we trust will give our submission the fullest consideration.

Yours sincerely

Richard S. Jackson MBE

Honorary Chairman




Run by families for families of people with a permanent mental handicap/learning disability we represent through our affiliated groups, individual and family membership, thousands of such caring families and their dependent sons, daughters and relatives.

Through meetings, surveys, newsletters and direct contact we are able to assess and present their views, areas of concern and aspirations born from what is for them a life long commitment of love and experience with some 70% doing the caring in the family home and increasingly so.

1. In the context of the above we welcome the long awaited Mental Incapacity Bill as applicable to people with a permanent mental handicap/learning disability who by any rule lack capacity, many of whom suffer a greatly reduced mental age, and for whose families the making of decisions is also a life long process of challenge.

2. We fully endorse and welcome the ongoing recognition of the necessity for the appointment by a Court of Substitute Decision Makers to be now renamed 'Deputies'.

3.  We note and suggest to be carried forward the recommendation of the Law Commission in the Green Paper, "Who Decides 1997" ie "The Law Commission envisaged that the Court would be more likely to appoint as Manager (now Deputy) a family member or other carer ", (page 57).

4.  As within the Law Commission's Draft Bill 1995, Green Paper "Who Decides

1997", and Consultation Report 1999, Deputies should have access to healthcare records and other personal information; these being essential in carrying out his/her responsibilities in respect of the best interests of the person on whose behalf they are charged to act.

5. Legislative terminology should we feel leave no doubt as to factual representation. The general use of the term 'carer' is open to confusion in it's application and the terms 'Family Carer' and 'Care Worker' would give a correct differentiation between the two.

6. The Mental Incapacity Bill when given Parliamentary assent will obviously stand for many years. As Parliamentary Secretary Lord Filkin CBE says in his Foreword "We need to be confident that it would in reality deliver all the practical benefits that we intend". For our dependent sons, daughters and relatives it is the first time that legislation has taken in their real needs and even more so their protection. With the above points to be considered, we give it our blessing.


7.  We welcome the proposed Mental Incapacity Bill. People with a mental handicap/learning disability need life long care and support to a varying degree according to the extent of their disabilities. The Bill will clarify the Law and fill the vacuum that has long faced family carers whose dependent relative suffers incapacity.

8.  A major factor consistently recognised within case law, but omitted in the proposed legislation is the often greatly reduced mental age of the majority of people with a mental handicap/learning disability and its ramifications added to the issue of incapacity and hence the case for Extended Minority and their on going protection beyond the age of eighteen years. It is important to recognise that adulthood is not the arrival of an age of majority (18) but is the attainment of intellectual, psychological, social and sexual maturity. It also means being aware of one's rights and the social responsibilities which goes with these rights. It does not follow from this that a lesser value should be placed on adults with a mental handicap/learning disability but a recognition that their life long needs are indeed special and different.

9.  The normal age of majority is obviously inappropriate for a severely mentally handicapped person whose mental capacity in all, or most regards, is that of a young child. It cannot be considered disrespectful to give such individuals the protection already afforded a child. This does not mean abrogating any views or opinions the person with a mental handicap may have. Indeed parents continually consider the views and opinions of their normal children before they attain majority.

10.  There is a danger of the dilution of the caring family influence, as suggested in some circles, fashions come and fashions go, caring families do not. The DOH local authority Circular "Social Care for Adults with Learning Disabilities" in "Links with Family" said "the most important life long stable relationship for many people with a learning disability is the relationship with their families and it is important that this should be maintain ed'~ The Westminster White Paper "Valuing People" and its statutory guidance gives encouragement and hope of immediacy to the families and rightly acknowledged that "caring for a family member with a learning disability is a lWe long commitment which continues even when the person is living away from the family home. Carers (family carers) make a vital contribution to the lives of people with learning disabilities, often providing most of the support they need'~ 'Valuing People' goes on to say "statutory agencies do not always properly recognise the extent of carers (family carers) contribution or its value. Carers (Family Carers) face many problems and challenges. They need to be treated as valued partn ers by local agencies not as barriers to their son 's or daughter's independence."

11.  This Incapacity Bill (2003) will obviously stand for many years and so the strength of the family role must be uppermost.

12.  At the recent Care Standards Tribunal "Alternative Futures Limited v National Care Standards Commission June 2003. Judge David Pearl emphasised the importance of meaningful family involvement, real choice and the application of Common Sense as his Tribunal rejected the Alternatives Futures Limited appeal against the deregistration of care homes.

13.  There has been a consistent failure to recognise the values that tie such families to their dependent member — values that need to be acknowledged as a meaningful part of the care equation and which can be best met in a monitoring and substitute decision making role. The ultimate goal is surely and simply one of care, satisfaction, contentment, and general well being leading to the happiness of society's most vulnerable and dependent members and that of their families whose role is firmly interwoven.

14.  Our families and dependent relatives desperately need and fully deserve the long awaited support of the effective, clear, simple and informed Parliamentary legislation envisaged by the Minister.

15.  The Bill has the one off opportunity to so deliver and in welcoming also the establishment of the Parliamentary Scrutiny Committee we ask its members to give its fullest consideration to the uniqueness of our area of concern and the expertise of the caring family unit in the decision making process.

16.  For they, and their dependent relative their life's improvement is the longed for prize bringing light to the end of a long tunnel of endeavour to make it so. Give them your confidence and your support.

17.  We are grateful for the opportunity to place before the Committee our submission and wish its members well in their deliberations.

For and Qn behalf of the RESCARE Committee

Richard S Jackson MBE Honorary Chairman

August 2003



Mental Incapacity Bill

This Bill should start from the position that a person can make decisions and that appropriate support is in place. There must be recognition that some people can't make decisions if their communication needs aren't met, whether through provision of interpreters, communication facilitation or appropriate equipment or their behaviour/gestures have not been correctly interpreted alongside inaccessible information. There is nothing in the bill which will makes it law for such support to be provided so that the person without perceived capacity can be involved in the decision making process.

Additionally, there is no provision of advocacy. This is an obvious gap in this proposed legislation and the Disabled Peoples and Representation Act 1986. It is critical that any proposed legislation must include such proposals as one person says:

"My carer is trying to stop me getting my own house, if it wasn't for help from my advocate I would not be moving.

Without such proposals many people may be WRONGLY perceived to be without capacity, when in fact they need support on how to participate in the decision-making process.

The Mental Incapacity Bill assumes that anyone making decisions on behalf of people without perceived capacity is always acting in their best interests. There is no acknowledgement of any conflict of interest which may rise in any decision, both "significant" and "insignificant". Some examples where the bill may allow others to make decisions on behalf of people without perceived capacity where conflict of interests will arise WITHOUT FAIL.

John and Lesley were living in separate group homes. Both of them were married and wanted to live together as a couple in their own home with support of Direct Payments. The staff in the group homes were against the idea and made this clear at John's care planning review meeting.

The conflict of interest arises where the staff are only being paid whilst residents live in the home. It is not in the staffs' interests if residents want to live on their own.

Another example will be where persons without perceived capacity are living at home.

"I did not have control over my money at all. When I asked for money I only got £5. If I spent it she got mad."

This is another example where there will be conflict of interest. In this case, parents may rely on the financial income from their daughter or son with learning difficulties and therefore be unwilling to give money to him or her.

We have concerns that the Mental Incappacity Bill will violate the fundamental rights of people without perceived capacity. Under Article 6, the claimant must have a right to an effective remedy where his / her European Convention Of Human Rights (ECHR) have been violated. The proposed Bill GIVES NO EFFECTIVE Remedy if a person without perceived capacity believes his/her fundamental rights (ECHR) have been violated. In this case Article 6, 8, 10 , 14 (the right to a fair trail, right to privacy and family life, freedom of association and assembly and not to be discriminated against on the grounds of disability.

Such cases where people without perceived capacity rights will be violated:

This Bill will affect the rights of people without perceived capacity, in this case disabled people labelled with learning difficulties.

"I don't like people (staff) interfering with my choices. I would like to go where I want when I want….Staff have stopped me from washing up." (ECHR article 8 violation)

"I am not allowed to take my own medicine; the staff say I can't manage it, even though I coped with it well in both group homes I have lived in." (ECHR article 8)

"Julie and I planned to get married, the staff at Julie's group home stopped us from seeing each other and have sent Julie's engagement ring back to me." (ECHR article 8 violation).

"My daycentre staff will not let me go to my local People First office and try to stop me going to conferences and other events," (ECHR article 10 violation).

If the Mental Incapacity Bill becomes law Disabled People with learning difficulties like these would have no RIGHT to appeal where a declaration that their rights have been violated. Furthermore, the person with learning difficulties will not be able to seek an injunction against the decision makers.

It is very clear that the Human Rights Act covers the actions and decision-making processes of statutory bodies. This also includes service provision. Such landmark cases include X, Y and Z where it was ruled that the manual handling procedures of carers / personal assistants services must respect disabled care receipt ants with learning difficulties fundamental human rights (Article 3 and 8). The Human Rights Act is limited to STATUTORY Bodies decisions which may include their directly contracted services. The Human Rights Act is likely to fail when non statutory bodies or persons employed by them make decisions on behalf of persons without perceived capacity. Many people with learning difficulties are stopped from making and implementing their own decisions by their parents and carers who would not be covered by the Human Rights Act.

"I do a lot of volunteer work for People First which means I travel all over the country. I have to keep my trips around the country secret from my Mum, I am sure she will try to stop me if she finds out."

"I am stopped from going out by my Mum, I would like a place of my own because sometimes I am treated like a child, and I wish I could do things myself."

When such decisions are made on behalf of persons with learning difficulties there will be no redress even under the Human Rights Act. Such redress will need to be incorporated in any proposed Bill.

The Government says there is sufficient checks and balances to ensure that only the right people can make decisions on behalf of someone without perceived capacity. From our understanding a person can make decisions on behalf of another if she or he "reasonably" believes that a person lacks capacity to make a particularly decision. The problem with this is that it allows anyone to consider another can't make decisions based on the stereotypical assumptions about what people with learning difficulties can do as People First say

"People without learning difficulties often only think about what they think we can't do, rather than what we can do, or could learn to do."

The Government says that some decisions should be made by the courts. Here, the Bill have not specified which decisions should or should not be made by the courts. As a consequence it will be left up to the "integrity" of the decision maker to invite the courts to make a ruling. We would assume that most decision makers wouldn't refer the matter to the courts. As with now, the courts are involved with financial and healthcare matters for people without perceived capacity where one would expect legal safeguards to be in place. However, it is unclear whether such legal safeguards will remain.

Where a person is unable to make a decision for whatever reason legal safeguards must be in place to ensure ALL decisions are made in the best interests of the person with perceived incapacity. Anyone making decisions must be registered. Independent advocates must also be involved.

We think having a lasting power of attorney is a good idea where people who are unable to make decisions can choose people who they can trust to make decisions for them. This could be extended to selecting particular persons to make specific decisions.

To conclude we would like to see a Bill titled "Supported Decision Making" where the focus will be on how people can be supported to make their decisions. Where decisions can not be made by a person a tough legal framework is in place to ensure conflict of interests of decision makers is kept to a minimum.

Changing Perspectives providing training and consultancy on disability rights issues. Simone Aspis (director) and disability rights activist was the former People First Parliamentary and Campaigns Worker. Additionally, Simone has been very active in campaigns to safeguards the rights of disabled people who are perceived to be without capacity.

Alongside People 1st, we would be interested in submitting oral evidence. It is important that the committee hears the voices from many disabled people with learning difficulties. The Committee needs to find a balance of hearing non disabled people's organisations that claim to represent people with learning difficulties and self-advocacy groups run by disabled people with learning difficulties.

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