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
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
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
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
membervalues 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
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.