18/08/2011 Newsnight Scotland

behaviour. Thank you both very much Tonight on Newsnight Scotland: In

the second in our series looking at the cost of care, we'll look at the

ethics and choices that we face - who should get care, who shouldn't

- and have we even begun to come to terms with the scale of the issues

that we have to confront? Good evening. Who deserves to

receive the full support of the state when it comes to social and

healthcare? Who makes those decisions and why? Is there such a

thing as the deserving and the undeserving? Should the family,

rather than the Government, be the main provider of care, regardless

of how difficult and painful that may be? All questions which experts

in the area say we need to face now but are we facing them? We'll

debate that in a moment, but first here's Ian Hamilton.

I feel my son has become a commodity and a value has been put

on his head that shouldn't be there. I don't think it is just about

money. Care can be about getting the job done or it can be about

affording a value to the individual. I think we are moving into pretty

difficult times. Resources are not increasing at the rate they have

increased in the past. Therefore, potentially conflicts will be

That is a nice one. You don't want that one? What about this one?

Jonathan is a young man who has multiple and profound learning and

sensory disabilities. He is double incontinent, he is registered blind,

he has epilepsy, a kidney disorder and he needs an adult to supervise

him 24 hours ago. Jonathan is 17 and is about to leave school. His

parents know that they are going to have to find enough cash to provide

Jonathan's care needs for the rest of his life. You did four. Almost

two decades of dealing with professionals has taught me

everything has a value, everything seems to cost and I feel that there

is a price put on Jonathan's head all the time for every service that

he needs access to. I have got to the point where I'm slightly being

made to feel guilty for asking for help.Ethically, in my head, I know

that is wrong. It's been brow- beaten all the time by people

saying, "Do you know this costs, do you know there is a waiting list

for this service?" That is a sad indictment on how professionals can

bear families down. You ready? Let's count four. Too many!

Jonathan, you have gone too far Policymakers are going to have some

tough decisions about who gets and who doesn't get care and what kind

of care that will be. Those decisions will have to be made

under the umbrella of social work, health and human rights legislation.

If you look at the cost of care, an older person is about �500 a week.

If you look at what we pay for children in children's home, it is

�2,500 a week. I would hate to think that is - I'm all for us

spending money on good childcare, believe me, that is equally

important. We should value our older people enough to say we will

also as a society make sure that people who have contributed

throughout their lives are well cared for in their older age.

is a group of people with a learning disability rehearsing

their next play. It is this kind of activity that could be threatened

in the future. I'm your dad and I'm telling you, you are getting off

that computer. On you go. I will have to go then! There is also a

concern that some services may shift from disabled people to an

ever-growing elderly population. There is a risk I think,

policymakers and so on are overwhelmed by the awareness of the

need to meet the increasing demand and expectation for the care of

older people. In that situation adults who need care are squeezed,

the perception is that people with learning disabilities have had

quite a large slice of the care budget. I think it's mistaken to

think of these groups as in competition to one another. Let's

do this one perfect. Resources are always scarce. There is always

going to be some level of conflict. There's also the issue of

preventative care. So there are bodies that would like to have the

Government spend more on preventative measures but of course

if you have a fixed budget, that might be at the cost of acute care

services. As we saw in the first film, we have an increasingly

elderly population. The babyboomers of the '40s, '50s and '60s, they

have higher expectations. Budgets are under threat. I think people

are equally concerned about people with learning disabilities and old

people getting kicked around nursing homes. By introducing

ethics, you are saying to people wait a minute, this isn't the only

thing that matters. What matters is the person you are caring for. It

means paying attention to their needs, not that it is lunch time

and you want your lunch and you are going to leave them there without

theirs. If we have a fixed budget and we have a group of people who

insist on their human rights for the provision of care, it may be

the case that those who haven't got a legal right to some care but

nevertheless are deserving of care get neglected, so there is a very

tricky ethical issue here over rights. Ultimately, resources are

scarce, they have to be allocated and if you allocate

disproportionately to one group, other groups will suffer. Do we

have the right to expect the state to deliver the kind of care we

would like? Or are we going to be forced to take personal

responsibility to contribute and save towards our own care? At the

moment, for example healthcare terms, we are fully insured.

Healthcare is free at the point of delivery. We have a very mixed

economy in terms of the insurance that is provided by the state for

social care. So we can get personal carefree but then other forms of

care we may have to -- personal care free but then other forms of

care we may have to pay for. That was lovely. My husband and I intend

as long as possible, as far as we possibly can, to look after our son

at home. The chances are Jonathan will survive into at least mid-

adulthood. It is a concern we will become older carers. It is maybe a

position we are coming to realise that we are in for the long-haul.

We thought we might lose him sooner than we have. Jonathan is very

funny. He doesn't talk but his voice is breaking. We are getting a

lot of deep voices. Jonathan's condition is rare. His situation is

not unique. Most of us will require some care. We will be looking

towards the state or each other for some kind of support. Well done.

Surely with a limited pot of cash isn't it a danger that we end up

dividing society? Who will make these decisions?

With me to discuss these issues are Jo Armstrong, who is an economist

with the CPPR and chair of Enable Scotland. Andrew Lowe is the

Director of Social Work for Dumfries and is also President of

the Association of Directors of Social Work. And Pam Duncan, who is

herself a service user and sits on the Board of Directors of the

Disabled people's organization, Inclusion Scotland. Pam Duncan, is

this a picture there that you recognise? Are people who use these

services being told things are not affordable? Absolutely. We are

hearing across-the-board - I have to ask the questions because I

don't remember when times were affluent. People are increasingly

being asked to contribute more towards the cost of their own

social care. They are also increasingly getting less and less

of social care for what they are paying and for what the state is

offering. We are hearing of situations where people are being

left in incontinence pads for 12 hours because it is cheaper to do

that than to provide direct support. People are being told there isn't

money around and the resources are much tighter. So you are not going

to be able to have the social care that you want, deserve and have a

need in order to access your human rights in society. We are being

told we need to use resources differently and how we are going to

go about that. These are really big issues. I would ask the question,

why are we consistently talking about a cuts agenda? In my own home,

when my belt needs tightened, I don't decide this week I'm not

going to pay the electricity bill, I look to raise revenue from other

sources. All right. Andrew, you are coming at this in a way, you have

to make these decisions. Are these decisions the kind of decisions you

are having to make? Are you having to say to people sorry, you either

have to pay more - right across Scotland, is that what your

directors are having to do? correct you, my leader would expect

me to say I'm from Scottish Borders Council... Is that what we said?

Don't worry. Right across Scotland, including Dumfries and the Borders,

we are having to make very difficult choices every day. I

don't think it is entirely as bleak as the picture that's being painted.

This is - these are very difficult circumstances but they represent

real opportunities as well-to-do things differently and to move from

-- as well to do things differently and to a system where people are

more fulfilled. We are targeting people in greatest need. We are

preventing people from falling into the most extreme need. I tell you

what, can I - people who are not elderly, who need social care, is

that a significant - what is that as a cohort group relative to

elderly people? How big is it? circumstances that the older

population is by far the highest volume... Right. In terms of the...

The younger adult population and the childcare population which was

mentioned on your film is the population of people who have

complexity of need and high levels of cost. Sorry to be blunt. If this

is a small proportion of people, yes it may be that people are

living longer because of the advances in medical technology. If

it is a small proportion of people, it should be manageable, whereas

when we are talking about all of us living longer when we get older and

being healthier for longer but needing medical care and social

care, that is a potential - with advances in medical technology -

that is unquantifiable? There is a distinction, isn't there? Society

has to make choices. When I came into social work in Dundee, people

lived in long-stay hospitals, make no doubt about it, there has been a

transformation in the way in which we consider people's rights to live

independently and that's been a fantastic transformation. We need

to go beyond that. We need to go towards an empowering kind of world

where we help people to make choices. OK. Jo, there does seem to

be an unquantifiable effect from healthier elderly people? Yes.

is not the same thing with younger people, is it? Or is it? People

with a lifetime disability, it is quantifiable to some extent. Most

local authorities don't know how many people they have got. It is

important to remember the majority of care is provided by people in

their own homes by their own families. There are - there is a

charging structure in place? There are charges being imposed,

increasingly so from local authorities for some of the care

that was traditionally deemed to be free. Are these charges means-

tested? They will be means-tested. Is that fair? There is an obvious

argument to say in cases where a family is taking care of someone

who is severely disabled, that that should be entirely socialised,

rather than... It is also perhaps worthwhile thinking taking one step

further back again. The choices are not just the choices within the

healthcare groups, the choices are having to be made at the Scottish

Government level or within local authorities between what proportion

of the fund goes to health, what proportion goes to local authority,

and what goes to social work and education, what goes to roads or

leisure. We have... Do we have a framework for... We don't have a

discussion about that. We also have this implicit set of choices that

have been made which says we want to give bus passes to people over

60. That group are deemed to be sufficiently important enough to

give them free bus passes. Duncan, where do we go from here?

Obviously, none of you would want a situation where we somehow people

who are elderly seem to be in competition with younger people who

need care. That seems to be the situation we are running into.

Where do you - how do you resolve that? The point that you have made

is absolutely personal, it is about choices. One of the things that has

become evident to me over the past few years is about the value we

place on social care and how we budget for it. If we were having a

similar debate about the NHS, rationing NHS services, I think we

would have a completely different debate. Society seems to value that.

One difference would be that everyone would be pretending that

rationing didn't happen in the NHS. Yeah, you are right. There is

rationing there. At the end of the day, we value something like the

structure of the NHS. When we are talking about social care, we get

into debates about - we almost treat it in the same way as we look

at how we determine budgets for bin collection. So I don't think we

would ever consider asking people to contribute almost 70% of their

income in some cases in order to just basically get out of bed in

the morning if it was considered to be part of that care system. Sure.

I hear what you all say, you are going to have to ask people to

contribute 70% to that because you won't have very much choice, are

you? It is the thing that is getting people back and

contributing in society. People who previously wouldn't have been able

to do that are being encouraged, supported to take control of their

own care, to choose the people to support them. That is cost-

effective and we are getting the most... We are running out of time.

It is important. The problem with that, Jo, is that the very cuts

that are making this more difficult are caused by a recession which

also makes it more difficult to carry out that agenda? Yes, I think

if you ask people who do you want to spend your �100,000 a year on, I

can guarantee you they will find different ways of spending it. Far

better outcomes from it and save money. It is about giving choice.

It is about empowering and that will create some savings. There is

a pot of money? Yes. At the moment there is a drive... People

receiving this should have a choice? Yes. That is essential and

we would never deny that as a positive agenda. You can only do so

much with the money you get. All right. We will have to leave it

there. My apologies, we don't have time for the papers tonight. That

is a mixed bag. That is all for this week. We will be back next

Hello. Summer makes a brief return on Friday. Most of us having a fine

day. It will start off a bit chilly. It will be a grey day in Northern

Ireland. Overall, expect spells of sunshine. By the afternoon,

temperatures will reach 20 degrees. A much brighter day across southern

counties of England. Sunny spells across the far South West, a fine

day too across most of Wales. Cloud will increase here. The sunshine

may turn rather hazy. It will be quite cloudy in Northern Ireland.

Not much sunshine on offer here. There will be outbreaks of rain,

particularly so in the west. Some of that rain may work its way into

the far west of Scotland. Most of Scotland looking dry and bright.

The morning showers tending to fizzle out by the afternoon. There

is some uncertainty as we head into the weekend. Further north, sunny

spells and a few showers. Some of the rain across the Midlands may

affect parts of Wales and the South West. At the moment, it looks like