51.Memorandum from Michael and June Power
1.1 We write as the close relatives of two
persons aged 54 and 68, respectively, with severe learning disabilities.
For over 14 and 12 years respectively, they have lived in separate
residential care homes. They can neither read nor write nor have
the mental capacity to make informed decisions outside a very
limited range of issues. Both have been the subject of abuse/neglect
on, at least, four occasions (in total) over the past 10 years.
Mrs Power has been their Court of Protection appointed Receiver
1.2 In the light of past experience, we
welcome the Draft Mental Incapacity Bill. It is an important improvement
in the area of decision-making on behalf of mentally incapacitated
adults; and should help clarify the present unsatisfactory legal
framework. However, there are two particular aspects of the Draft
Bill (or Explanatory Notes) which give rise to concern:
A. ACCESS TO
1.3 Both the 1995 Law Commission Report
(paragraphs 8.20 and 8.23) and 1999 Government Report Making Decisions,
(paragraphs 3.7, 3.9 3.11 and 3.12) expressly emphasised the importance
of providing the means by which a person's statutory rights to
accessing information could be achieved when the respective person
is incapable of initiating or evaluating such information themselves.
1.4 It should be noted the Data Protection
Act 1998 does not make any special provision for requesting access
on behalf of mentally incapacitated persons. This inequitable,
and most unsatisfactory, situation has been acknowledged by leading
legal practitioners (see Community Care and the Law, by Luke Clements,
page 36, paragraphs 2.28 and 2.29).
1.5 We have direct experience of invoking
the Court of Protection's assistance by way of requesting a special
Order. The Court were most helpful; but, within the limitations
of UK Law, were only able to issue a Direction to receivenot
compel disclosure ofthe documents requested (see Annex
1.6 The personal records involvedincluding
an important Abuse Report on our relative who was subjected to
ill-treatment in a Care Homewere only released after nearly
two years continuous legal representations; and commencement of
a Human Rights Act action at Strasbourg.
The Draft Bill does not contain any express
provision, as previously recommended, to overcome this problem.
This is a serious omission which should be corrected, possibly,
by an additional Clause to Section 17 of the Bill.
B. MISUSE OF
1.7 The term "Carer" has been
defined in previous Policy Guidance such as Community Care in
the next Decade and Beyond (DON, 1990,) as "a person who
is not employed to provide care in question by any body in the
exercise of its function under any enactment. Normally, this will
be a person who is looking after another adult in the home who
is . . . mentally or physically disabled . . .".
1.8 Increasingly, in recent years, the term
Carer has been arrogated by professional/service provider staff;
and, in our submission, misapplied to paid support staff. In turn,
Family Carers/Advocates appear to have become relegated to a lower
category described as "Informal Carer". It is noted
that the latter term appears no less than four times (see pages
44, 47, 48 and 50) in the Explanatory Notes to the Bill.
1.9 Is a family who visits their son in
a mental hospital, virtually every week of every month for over
38 years, and vigorously advocates for his intereststo
be dismissed as "informal carers"?; similarly, those
who struggle for nearly two years to obtain, on behalf of the
mentally incapacitated person, access to the latter's Individual
Care Plans/Assessments and an Abuse Report whilst living in the
community care programme?
To minimise future confusion, the term "Carer"
requires unequivocal confirmation in the forthcoming legislation
and/or explanatory notes thereto. The role, importance and particular
contribution of Family Carers to decision-making for persons with
severe or profound learning disabilities should be clearly recognised.
Finally, whilst we acknowledge the Scrutiny
Committee's time will be limited, we would much appreciate the
opportunity to offer oral evidence in support of the above, and
Direction to receive documents
THIS DOCUMENT IS NOT VALID UNLESS IT BEARS
THE IMPRESSED SEAL OF THE COURT OR THE PUBLIC TRUSTEE (IN THE
BOTTOM RIGHT HAND CORNER) ON ALL PAGES
IN THE MATTER OF (name
deleted, original available) ("the Patient")
IT IS HEREBY DIRECTED THAT:
Beryl June Power of 5 Groesfford Park Brecon
Powys LD3 7SF the Receiver in this matter is AUTHORISED in the
name and on behalf of the Patient to inspect and to receive copies
of the papers and documents and other information on the personal
file held by the Social Services Department of West Glamorgan
County Council and to receive on behalf of the Patient a copy
of the Social Services report prepared as a result of an investigation
carried out in 1995 by Mr Harper in respect of (abuse venue
deleted; original available).