Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

37.Memorandum from RESCARE (MIB 61)


  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 per cent 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 its 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 18 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 maintained". 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 life 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 partners 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.

August 2003

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