Examination of Witnesses (Question Numbers
720-739)
MR DAVID
CONGDON, MS
SOPHIE CORLETT,
MR STUART
NIXON AND
MS IMELDA
REDMOND
26 NOVEMBER 2009
Q720 Dr Taylor: Can I ask each of
you for a brief initial reaction to the policy of providing free
personal care at home for those in greatest need. We have only
just today had this document, so no detail, just a brief initial
reaction.
Mr Nixon: Some of the issues are
around the tightening and narrowing of the brackets of eligibility
for this care. We really see that, potentially, at the moment
we have a very narrow bracket as it is, and if we are moving down
this road it is only likely to get tighter and so the number of
people excluded from some care is likely to go up. That for our
constituency is an enormous issue.
Mr Congdon: The general concern
we would have from a learning disability point of view is that
although the funding is available for anyone over the age of 18,
as I understand it having briefly looked at the document, in practice
most people with a learning disability would not in fact pay because
of the way the rules work. That is good on the one hand, but the
concern is much broader than that. The £250 million that
has to be paid for by local authorities is inevitably going to
lead to even more pressure on what we were talking about already
as that pressure, and the only way that local authorities would
be able to square that circle would be to tighten their eligibility
criteria. That is the fundamental concern. They have to find that
£250 million amongst all their other efficiencies they are
trying to achieve.
Q721 Dr Taylor: Really the same view
about eligibility.
Mr Congdon: Yes.
Ms Corlett: We have not looked
at it from Mind's point of view at all. I am thinking that for
people who are in the critical stage and are needing that level
of care, then home is probably somewhere they would be getting
health services rather than care services, so it gets complicated
by this health/social care divide again.
Ms Redmond: We welcomed it because
we know that many families are in the situation of somebody who
is at critical level of need—I think there are four levels
of ADLs—and they are really struggling. They are really
struggling with the costs of that care and so we welcome it. Anything
that helps families, we really welcome. We really like the idea
that you have the first period of that time, which is about rehabilitation
and proper assessment, to see what the ongoing needs will be and
whether other interventions can come in to assist the family and
reduce the costs—like, for example, Telecare coming in or
some sorts of therapies going in—and give somebody back
more of their independence. Currently people at that level of
need are discharged from hospital, and they either have to set
up their own package, because the local authority has said they
have too much assets, or they are put on the 15-minute slot thing.
The idea of the rehabilitation and guaranteed care will take a
huge worry from the families who are in that situation.
Q722 Dr Taylor: Can you see any unintended
consequences of perverse incentives?
Ms Redmond: Yes, and our colleagues
earlier today talked about it. But you have that with most policy,
do you not? This is about free care in the home. What is the incentive?
An older person who has been very frugal all their lives finds
it incredibly difficult to start spending out £200 or £300
a week on their own care. They might say, "No, no, no, I'm
not going into a care home because I will have to pay £800"—
Q723 Dr Taylor: And that might be
the best place for them.
Ms Redmond: It might be the best
place, but they might be saying, "No, I'm not prepared to
pay £800 a week for that." You can see it. Likewise,
the local authority might be saying, "You get into a care
home."
Q724 Jim Dowd: I want to look briefly
at technological breakthroughs. There was a recent report of attempts
to find a drug therapy for Down's syndrome. How likely is that
kind of scientific advance, and what effect will it have for the
need for social care?
Mr Congdon: As I understand it,
it is too early to judge whether the Down's syndrome bit of research
will lead to anything significant or not. On a broader point,
it is unlikely—but one can never predict the future—that
there are medical solutions of any shape or form to learning disability
as a generality and, therefore, the idea that advances in medical
science of any shape or form or genetics will lead to a significant
reduction in the demands in terms of social care for people with
a learning disability I do not think are valid, to be perfectly
frank.
Q725 Jim Dowd: One of the previous
witnesses, who was from the Alzheimer's Society, said there was
nothing on the horizon and it would be 15 years and maybe longer
before anything even changes. Is that true for MS, Mr Nixon?
Mr Nixon: We are in a position
where we have moved in the last 20 years from what was effectively
a diagnosis service, "Go away and live with it," to
something where hopefully in the next five years or so there will
be a range of disease modifying therapies. None of these are a
stepping back on the line of disability that you have gone down,
but they are hopefully about arresting that progression and making
sure that it happens a little less slowly. There are some positives,
but by no means are we looking at something that within the foreseeable
future is going to change.
Q726 Jim Dowd: The impact on the
pressure for social care will be minimal.
Mr Nixon: Yes. We do not see it
having an enormous effect.
Q727 Dr Naysmith: All of you have
spoken this morning about how it is important for the various
client groups that you represent to get into work if possible
as part of rehabilitation, yet the Green Paper has been criticised
for failing to spell out clearly how the various future funding
options for social care would affect working age adults. Do you
agree with that? Once you have answered that question, which of
any of the funding options in the Green Paper do you favour and
why?
Ms Corlett: We struggle to know
how things would affect working age people, so we do agree with
that assessment. We did quite a number of focus groups and work
with people with mental health problems, a higher proportion of
whom, over 70%, are likely to be dependent on welfare benefits,
less likely to be working, more likely to be on very low income
and therefore to be in debt. We are concerned that they might
need to find big amounts of money at some point or it would all
be reliant on their assets after they died and then thinking,
"What assets would those be then?" People do have those
concerns and the funding option—
Q728 Dr Naysmith: Are they valid
concerns?
Ms Corlett: They are valid concerns.
Particularly if you are thinking about insurance, particularly
private insurance, a premium might well consider those to be people
at higher risk and, therefore, a higher premium, which would obviously
be self-defeating.
Q729 Dr Naysmith: The insurance matter
is particularly important for your group of people.
Ms Corlett: Yes. The general taxation,
the fifth and ruled-out option, was the one that people overwhelmingly
preferred.
Ms Redmond: The Green Paper was
weak on working age. I do not think it was intended, but then
people started looking at: How do you fund older care? One of
the things I want to make sure we do not forget about is that
80% of carers are working age and they are mostly looking after
older people, so any older people's service that does not work
right means that more and more carers fall out of work. At the
moment it is around one in five people with caring responsibilities
who are falling out of work. In terms of a model, it will not
surprise you at all to know that when we went out to our membership
they said taxation. That is partly for some of the reasons that
Ms Corlett said: the people who would be in our membership are
likely to be the people who are most hardest hit, so they are
either on very low income part-time work or out of work completely,
and so the idea of paying lump sums in large amount is just beyond
their comprehension. They might have a house; they might be paying
the interest on that house but not necessarily the capital. As
an organisation, taking a different view, we do understand the
need to bring more money into the system. The idea of lump sums
at 65 did not resonate well, because it is an unimaginable sum
for people who are earning £20,000-£25,000 a year, but
some sort of inheritance tax death duty, when thrashed through
with our policy people and our trustees, was more acceptable.
Mr Congdon: We struggled with
the Green Paper as presented, because clearly, as presented, it
did not really address the funding issues for younger age adults
and it was quite an effort to crawl through the impact assessment
and fully understand what it meant. We understand the modelling
made the assumption that younger adults would not really be making
any significant contribution to their care, and so in that sense
it is helpful and the Government has confirmed that. There is
a difficulty, of course, if other policies start to work well
and we were in ten years' time to have significant larger numbers
people with a learning disability in work, for instance, then
there would be issues around that. We struggle with that. Nine
out of ten of our members, and we consulted widely, felt that—surprise,
surprise—a tax-funded option would be the best, but if we
had to go and vote for any one of the three in the Green Paper,
then we would probably go for the comprehensive option, but we
do not really think that is necessarily the best way forward.
Mr Nixon: MS starts to affect
people between the ages of 20 and 40, so has a significant impact
on their ability to accumulate wealth over a lifetime. As I have
stated, the idea of a large lump sum on retirement just seems
far and away from reality. In view of that, when we surveyed widely
across the organisation, needless to say the tax-funded option
was the preferred one. If we are going to do anything else, the
only other area that our constituency talked about was the comprehensive
funding option and we had about 28% acceptance that this was the
way to go.
Q730 Dr Naysmith: A special question
arising out of the Green Paper for Mr Nixon and Ms Corlett, both
your organisations oppose the integration of disability benefits
into social care funding. Would you explain why. Are you reassured
by the Government's clarification that Disability Living Allowance
for people under 65 has been ruled out of any such reform?
Mr Nixon: From our perspective,
the disability benefits are the original independent budgets,
because they allow somebody with, at times, lesser needs to make
up the shortfall because of the costs that they incur because
of their disability. We have large numbers of testimonies about
how people use their benefit to level that gap, be it through
simple things like buying higher quality linen because they need
to change their beds that much more often than anybody else does
because of continence issues, through to financing complementary
therapies, complementary treatments which are not available through
the NHS, through to things that might on the face of it appear
quite frivolous, in the way of having somebody paint our nails
or wax your legs. Most ladies will do that themselves, but if
you have a significant long-term condition and you cannot move
around and you cannot do that, to have those things done for you
really makes an enormous different to your feeling of self-worth.
Those sorts of things allow people to actively make choices and
live in the way that they want to, so any attempt to remove those
sorts of supports for people living with long-term conditions,
living with MS, would be anathema to us. That flexibility is all
about the prevention. At times, when people have a relapse, if
they do not happen to live in East Sussex or they are unfortunate
enough not to live in East Sussex, they can pay somebody to come
in in the morning and help them get out of bed during that two
or three month period possibly when social services are not able
to respond to their needs. They are very flexible benefits and
they are the things which enable people to live with long-term
issues.
Q731 Dr Naysmith: It has been suggested
that such benefits can be very poorly targeted. The people who
make that statement have an idea that there might be gains to
be made from distributing this money and other funding streams
differently, but presumably you will go along with that.
Mr Nixon: Our view on that would
be very simple and straightforward: what makes this community
different from the main society is that all of us have additional
needs, additional costs that we incur because of our disability.
It is not about whether or not you have an extra £10 in the
bank; it is about the fact that your daily life costs you that
much more to live.
Ms Corlett: They are covering
different things. DLA is not about care; it is about the extra
costs of living with a disability. Somebody with agoraphobia might
be spending an extra £5 because they are shopping online
and they are paying £5 for delivery or someone with OCD might
be spending a lot more on cleaning material. Somebody I know is
spending a lot more on cleaning materials because they are doing
a lot more cleaning in the house. It is the principle of the thing.
It serves a different purpose and it carries with it already that
personalised independence that you can use it in your own way
which hopefully Care will do later but it currently does not.
The second thing is the number of people who are eligible. Just
under three million people—2.87 million is the figure I
have here—in the UK who receive Disability Living Allowance
or Attendance Allowance are not eligible for social care services,
so it is no good saying, "We'll wrap it all up as one"
because that leaves a whole bunch of people who are not going
to get anything at all and they are the people for whom those
small amounts of money are providing a preventative mechanism.
They are using those to keep themselves well or to keep their
lives turning over. It is a fairly small intervention, but it
does affect the bottom line for society as well as for that individual
in terms of how their lives turn around but also in terms of how
the economy turns around. By all means target it better if that
is a problem, but do not assume that you can wrap it up into one
thing and that the eligibility system for that one thing will
work for something which was set up to do something completely
different.
Q732 Dr Naysmith: Ms Redmond, do
you think there is a possible concern about possibly losing disability
benefits that are "carer-blind".
Ms Redmond: Absolutely. My postbag
is full of letters from people saying, "Please don't let
this happen." It is the only benefit that is carer-blind
like that. The Green Paper does not intend to be carer-blind.
It assumes that families are still going to carry the vast majority
of work of caring for ill, disabled and frail people. The people
are very anxious about the removal of Attendance Allowance and
I can really understand why. As Ms Corlett said, many of the people
who are getting Attendance Allowance are getting absolutely nothing
else. They are not getting any help from anywhere else at all.
It pays for the costs of disability: it pays for the cost of putting
your washing machine on five times during the course of a day;
it pays for the cost of having to get a taxi to go to your hospital
appointments. It covers those sorts of things. I have heard the
anecdotes, and I am afraid I have heard the anecdotes from people
in the Department of Health about their own family not needing
it. They are not the families I am dealing with. I am dealing
with families who have been on low income most of their lives
because of sickness and disability.
Q733 Dr Taylor: We have talked quite
a bit about personalisation of social care already. One of the
main benefits obviously appears to be flexibility. Would anybody
like to summarise other benefits and particularly talk about risks
of personalisation.
Mr Congdon: As Mencap we were
involved as one of the partners in the original work, In Control,
which led on to the Department of Health having the individual
budget pilots. Although the evidence base is quite small, both
of those evaluations show that it can work and can work well,
and builds on much earlier work that was done in the physical
disability movement, with people wanting to have control over
their lives, not having things always done to them, so they are
in control. We are very enthusiastic about personalisation, want
to see it done properly and to do it properly it needs to be properly
funded. The point about safeguarding is an important issue. It
is an important issue in the current system. Whether you have
personalisation or not, there are still safeguarding issues that
do need to be properly addressed whether people are in hospital,
whether they are in care homes or whether they are being supported
in the community. There are concerns about safeguarding. It is
one of the reasons why we want to see safeguarding strengthened
as a generality because too often safeguarding issues are ignored,
but that must not get in the way of enabling people to have choice
and control of their lives.
Ms Corlett: Interestingly, some
of the work that has been done on personalisation is that people
with mental health problems benefit more than other groups from
it because of the benefit it gives to your psychological wellbeing
by empowering you to make decisions for yourself. That is found
across the board for people with other conditions that their psychological
wellbeing improves by having a personalised budget, and yet ironically
people with mental health problems are the group least likely
to have been given that opportunity because of some of the stigma
and discrimination that exists within the people controlling the
system that this is the group least likely to be able to manage
their budgets sensibly or safely or whatever. There are some risks
around safeguarding, but they are not as we think and they are
manageable with brokerage, with advocacy services, with support.
Some of the bigger risks are around public perceptions. Mental
health is very little understood and some of the things that you
might need to support you because of mental health problems are
very little understood and so I think there is a risk of a public
backlash around how public money is spent which needs to be managed
and I think that goes alongside education of people who are managing
the system as well. There is a massive inequality risk that the
system really favours the financially literate and the articulate
and we need to find ways of supporting people. Not everybody will
want to have the money. They might want it personalised but not
to take the money; other people might not want it personalised
at all. We need to leave those options open, but we need to be
able to encourage people towards taking the steps to say what
will work for them rather than receiving a system Going back to
one of the earlier questions: What does poor service look like?
Poor services institutionalise you. Albeit in the community, they
institutionalise you. A personal budget can help to reverse that
process. The last risk is around market management. People were
talking about this in the last session, around services that are
going to be extremely valuable but need to be maintained because
you cannot run them on a one-off basis and particularly group
services. We know that a lot of people with mental health problems
benefit quite significantly from having a group place to go as
well as the individual things that help them. That will probably
need to be additionally funded if it is to be viable.
Q734 Dr Taylor: Do you have any ideas
for how you would support people with mental illness to be able
to take these decisions and to control their personalised care?
Ms Corlett: Yes, we have been
doing a project that the Department of Health funded called Putting
us First, where we have been supporting individuals, where we
have been championing, really, personalised budgets with individuals.
It is not as difficult as it seems. Things around brokerage and
around advocacy are the safeguards that you need to put at either
end of it. Within that, people are very able to make decisions.
Q735 Dr Taylor: Moving on to personal
assistants: should they be regulated? If so, how?
Ms Corlett: There is no harm in
having regulated personal assistants but that cannot be the be-all
and the end-all. There are two problems with it, and they exist
at either ends: the number of false positives and the number of
false negatives. This was brought up by a lot of the people who
came to our focus groups on this particular issue. A lot of people
will benefit from peer support, from somebody who has been through
the same as them, who has come out the other end, and who is currently
well. Many of those people, when they have been unwell, will have
come into difficulties with the criminal justice system. They
might well not get through a CRB check and yet, actually, they
are extremely able, and so there is a false negative there. A
CRB check only counts obviously those people that have been caught
and you then are not necessarily providing any safer system by
running that. People were saying that it would be useful to have
a pooled system, which would have the benefit of being regulated
and also have the benefit of being there flexibly, that they could
have access to.
Q736 Dr Taylor: By a pooled system,
you mean a local authority holding sort of bank.
Ms Corlett: A local authority
or a bank to which you could go to in crisis or when you needed
more and know you were getting somebody who was regulated and
safe, but that for your more ongoing needs you would have the
autonomy to choose somebody you trusted, maybe with the support
of somebody else helping you to interview, or maybe knowing that
there was advocacy available were you to get into difficulties
in that relationship.
Q737 Dr Taylor: So there should be
some interview technique, interview system, to help people do
it themselves.
Ms Corlett: Should they want that
support, yes.
Q738 Dr Taylor: Any other comments?
Mr Nixon: The issue always when
you are last on a question like this is that all the good points
have been made, and both my colleagues here have made very, very
strong points which I would echo. I would just pull up on two
things. One of the dangers with personalisation is the potential
for the development of a two-tier system, a system where if you
exercise your right to personalisation then you can design a very
good system, and if you do not do that you do not get the benefits
and you get left with whatever is left over. We would advocate
that that is something you must make sure does not happen, so
that if somebody chooses, "No, I don't want to personalise,"
the services are still of the same quality. Yes, they may not
have some of the flexibility, but they will still be of the same
quality and they will still offer somebody the quality that they
would expect. I would echo the issues on PR. That is an enormous
issue. One of our members, Gavin Croft, was very well publicised
in buying a season ticket for his carer to go to the football.
The media headline of that is potentially quite damaging, but
Gavin recognised that respite care for him and his wife was about
her having half a day a fortnight to go off and be able to do
exactly what she wanted to do while he was in a safe and managed
environment, doing something he enjoyed doing as well. That sort
of creativity is something that is wonderful within personalisation
but can be put across quite negatively if we do not get that PR
situation right.
Q739 Dr Taylor: I fear I misread
your paper, because it was the carer who went off to the football
match, not the disabled person.
Mr Nixon: No, he went to the football
match but he paid a PA, basically, and his wife went off and did
whatever she wanted to do. It was their approach to respite care,
not a traditional one of saying, "Gavin, you go off and spend
a week in a care home and she can go on holiday," which at
the end of the day was not want they wanted. They wanted to live
together but to be able to have a "normal" (if that
is the right word) life but by just having that ability to take
the lid off the kettle once a week everything is maintained. A
very cheap solution to respite care: not putting somebody into
a home for £1,000 a week. A great example. The other point
that I would make really with it—and it might not fit desperately
in this area—is on the difference between choice and control.
We have talked a lot about choice and control today and one of
the positives I see with personalisation is that it is the opportunity
to exercise control rather choice. Choice is something that we
tend to offer: more often than not somebody says to you, "Would
you like this or that?" That is not independence. Independence
is the control that says, "Actually, I don't want juice or
milk to drink, I want the control to choose what I drink and when
I drink it." That is something else that personalisation
is going to offer to those recipients.
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