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
Richard S. Jackson MBE
RESCARE RESPONSE TO THE PROPOSED MENTAL
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 ",
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
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
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
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
MENTAL INCAPACITY BILL
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
"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
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
"I don't like people (staff) interfering with
my choices. I would like to go where I want when I want
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
"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