ILF.Dumfries.20.06.16P2ilf.scot/.../uploads/2016/07/ILF-Scotland-Dumfries-Trans… · Web viewILF Scotland. Engagement Event at Easterbrook Hall, Dumfries. Monday 20 June 2016

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ILF Scotland

Engagement Event at Easterbrook Hall, Dumfries

Monday 20 June 2016

Afternoon Session

Group Discussion Two, New Fund Criteria Options.

HARVEY: Good afternoon. I hope everyone had lunch. It's

always a bit of a challenge, I'm sure, you're all familiar with that, we're going

to move into this afternoon's session.

Just for note, there is other things coming up through this

dialogue that may not naturally fit in some of the workshops we're doing.

Firstly, there is from my extremely, good graphic art on the things there. A

car, I took colours from colleagues today! Car park poster, there, after this

session, we're going to do a bit of collective feedback comments, and we

might draw some of the other points out. Lastly, we're going to be putting

the full documentation online if people, after today, want to give more

information or contribute more we'll be doing that through an online forum or

drop us an e-mail or pick up the phone. Whatever works for you.

I'm going to hand over to colleagues again who are going to take

you through this afternoon's session. There is sweets on the table, coffee

up there. So, the timings for this afternoon, people okay to take 40 minutes

for this next session and then we'll come back and do some collective


feedback if we need a few extra minutes at any point that's fine, we're trying

to get you away for 2.30 or 14. 30 for those with a military mind!

TABLE ONE DISCUSSION

PAUL: Good afternoon everybody, Phillip is new to the group.

PHILLIP: I'm an assessor, I go about, Edinburgh, Lothians, Fife,

Scottish Borders.

GILLIAN: Do we have an assessor in this area?

LESLEY: Is there much take-up on ILF in this region?

GILLIAN: I don't know, of anyone in ILF.

LESLEY: My sister’s in Ayrshire. I don't know if it's promoted

more there, we hardly ever hear of this down here.

PETER ROSS: One of our directors is ILF, she's confined to a

wheelchair, she was a doctor so would probably know.

LESLEY: Was that Dr Anne? We all know her.

PAUL: So the format to this workshop is identical to one this

morning, present an idea, expand on the idea and get some more context for

the back ground and then I have some questions to get through, one of the

things you mentioned this morning was about not being prescriptive, we

were looking at life events, saying we need to be bigger than that this

thinking is for a one off tranche. So, something or that could be anything or

one activity or type of service and think something you would get a bigger

lump sum as a one off? For something. So some of the ideas would be

equipment? Adapts - - adaptations, technology, home equipment,

emergency care, some of you mentioned this morning, short breaks, respite.


Alternative therapies, temporary.

LESLEY: For the carer or beauticians!

PAUL: Possibly, that's one of the things we're going to discuss if

there's one off grant what should or could it be for. Additional

transportation costs, tele-care.

LESLEY: Not provided by the local authority.

PAUL: Household appliances, mainstream or specially adapted.

LESLEY: Specially adapted I'm thinking.

PETER ROSS: These are things suggested by various, people at

various points in time.

PAUL: Support for business start-up.

LESLEY: This is the one I'm interested in.

PAUL: Or additional funding support during hospital admission.

GILLIAN: There would be that additional support for hospital

visit for funding visitors, that's limited.

PETER ROSS: It's the rural dimension.

LESLEY: For a lot of, transport things or transporting I think

people are more and more getting told that's what your DLA mobility support

you need to spend it on that, so, if it was something transportation wise, I tell

you what, I think would fit into that I don't know if it would fit into that, say

my daughter gets support from support workers say I allowed my car to be

accessed it would need to be insured for several different people, something

like that? Possibly, I don't know how much that to say costs and I have not

looked into it.


GILLIAN: It's what I've often thought, when they said, we can't

get the pool car. So the person would, benefit.

LESLEY: Like an open ended insurance or something. One

thing that sprung to my mind when you're talking about the short breaks a

couple of years ago, my son went to Australia for a year, three reasons, I

couldn't, go, if I did have the money I couldn't leave my daughter for a

fortnight and she would not have she would not have coped with the flights

or being away from home that length of time and my concern is in the future

he does want to travel again and I would love to have that opportunity if I

thought I could go away for say two weeks and I knew support would be put

in place which I don't think the Council would cover for that whole period of

time.

GILLIAN: Self-Directed Support is limited.

LESLEY: I would save up the money she would lose out on other

things.

PETER: Why, do you not get respite funded through your local

authority?

LESLEY: There is no respite there is no spaces available, if I

need respite, she goes away for the weekend or we go away for the weekend

but it's built this into our SDS which is fine, financially.

GILLIAN: Which I have for one son the other is a block booking.

PETER: That would be valuable for you for additional receipts

respite.

GILLIAN: It's about that addition that when you have a need as


a carer that you're using that the person you care for's budget to do

something for you and there is no extra funding, ideally we would have, our

own budget, during the holidays, my daughter has to get the support so I can

get the work.

PETER: That is Scottish Government strategy for supporting

carers.

GILLIAN: Carers, have their own budget but that hasn't

happened.

PETER ROSS: One thing added to that I would like to see some

sort of support for people moving into employment supported employment.

At the moment, once again, trustee of a charity, getting young people into

some sort of employment by building a social enterprise which is not easy

it's clunky dealing with social work and school, it's something, start that

process.

GILLIAN: Even to do a work experience for a young person,

school don't have the resources to put in the one-to-one support that might

be needed for that person to experience it something like that could be

worthwhile.

LESLEY: I was lucky Darcy did get to do that.

PETER ROSS: I was working I was a works manager we always

employed people with disability I'm used to it the benefits to these

individuals, there is one of them still in Stranraer, it was tremendous, really

really useful.

PAUL: You said moving into employment what about when


they're in employment.

PETER ROSS: Same thing, they the employment sphere.

PAUL: Sustaining.

PETER ROSS: Sustaining or it's not a huge amount, I don't

think, again it's a psychological boost.

LESLEY: Absolutely. Can I ask?

PHILLIP: How does Access to Work fit in?

LESLEY: I was told supported employment, I remember thinking

when she leaves school could look at something like that, they changed it I

was told they only support people into employment who have a chance of

getting a job.

GILLIAN: Paid employment, ten years ago, Chris got supported

into a voluntary workplace it was excellent service for that.

PHILLIP: Access to Work is restricted for the job.

PETER ROSS: What I'm talking about is supporting,

employment, enablement.

GILLIAN: Voluntary position.

PHILLIP: At the moment, some people use ILF funding to have

PAs, to drive them to work, perhaps support them at work.

PETER: What you're talking about is interesting. So,

something's happening in recent years as part of reduction in local services

is that supported employment services, supported employment projects

used to be run by local authorities or by voluntary organisations have gone.

By and large have gone and they did have some capacity at some point in


time to support people into voluntary and part-time work and the only

employability support now, as far as I can see now, comes through the DWP,

work programme, sort of.

GILLIAN: We've been down that, route.

PETER: There is an interesting suggestion an appropriate use of

ILF funding to support people for whom the work programme is not

appropriate for them, so for part-time or voluntary employment there might

be a legitimate use of ILF.

GILLIAN: There is a lot of youngsters capable of doing

something in support with voluntary a limited number of hours that are

missing out on getting that opportunity.

PETER: As somebody mentioned work experience, so, lots of

young people, forgive me if it's patronising or you disagree with me, my

experience of young people with learning disabilities have not had sufficient

exposure to the world of work have any understanding of what it is, what

they might be able to do, schools, even special needs schools aren't really

terribly good at giving young people with disabilities that experience, it's

probably worse now.

LESLEY: Even if they do it was only for a short period of time my

daughter was supported to go to Loch Arthur a community place outside

Dumfries, it was only a year, six months her support for learning assistants

went with her, she worked in the baking it was fantastic I then went out to

meet with the guy who runs that part of the project it's like a.

PETER ROSS: Camphill Community.


LESLEY: I thought this was a fantastic opportunity to continue, I

provide the support through SDS, no they couldn't allow it to continue, if

there was some sort of, I can't remember the reasons they were taking

someone else on from the school it was, here's a wee shot at this, it's like

dangling the card and then taking it away.

PETER ROSS: DG Voice had a conference here about

employability, DWP were great, the job centre, but, they were all keen, all

wonderful, but in actual fact nothing happened, it's too complicated.

LESLEY: It is difficult for people who run businesses it's almost

like you need to give them finance incentive to take them on, I would say I'm

going to pay you for my daughter to come here, each week.

PHILLIP: This particular thing was started by ARC, staff, ex staff

it's set up as a charitable business but the chunkiness of getting it through

social work and the time it takes, the wage bill doesn't go away. You know

you can get grants for so long but it's not sustainable in the very long-term.

PAUL: Ask a question that picks upon a phrase you just used,

dangling the carrot and taking it away, if somebody can get a one off grant,

should they have the expectation, I can get a grant for this but it's not there

again.

LESLEY: That's why you have to be careful about grants.

PAUL: Here's a one off grant could they maybe come back and

get another grant.

LESLEY: For people with disabilities, sometimes we short

breaks, some of the short breaks, funding where I work, if this is something,


say it's journey what's going to happen after that year I think this person get

their gym membership for a year, get fit at the end of the year, they have no

way of maintaining that, that's the same for a lot of different things you get a

grant for this, when it runs out it stops.

GILLIAN: Maybe, nobody, seen supported into that place for my

boys, walking through the door is a particularly difficult thing, say it was a

three month grant to do voluntary work, so somewhere you know they could

cope on their own, I can't think where that would be, depends, individually,

about individuals and their needs and outcome maybe you wouldn't be doing

too much giving money to folk, people who aren't going to do it long-term on

their own but might be used to those that could sustain it themselves but

can't, walk through that.

PETER: The way to do that is I wouldn't think so much about

paying the gym membership I would think about it as providing additional

support to allow the person who bought their own gym membership to learn

how to use the gym, make friends in the gym, become familiar with how it

works, routine, equipment, staff.

LESLEY: That's what SDS does.

PETER: There is going to be overlap if SDS are prepared to

fund it in Dumfries and Galloway great.

GILLIAN: I have been in SDS, four years and coming three years

for the two boys it's possibly different from those just starting out on the

journey now, you're kind of same Lesley?

LESLEY: Yes, yes.


GILLIAN: It's silly now the amount of hours, more restrictive,

they won't change us because we're on it.

LESLEY: I'm curious about the business start-up, what kind of

business.

PAUL: No idea.

PETER: These are as part of the consultation these are things

the members of the public have put in, we don't have all the back ground of

what somebody's thinking.

PETER ROSS: One of the things is transport, allowing disabled

people with their disabled cars to run a disabled taxi service.

GILLIAN: I was reading about that, recently, Driving Miss Daisy,

it's called. A franchise. I'll been reading up on business start-up ideas, it

was a franchise, called driving Miss Daisy. What a wonderful service for

people in an isolated situation that feel vulnerable going out and about on

their own, having this personal service. Maybe seeing you into hospital for

an appointment. Not necessarily support but, there is nothing like that, I

wonder if it.

PETER: You hear that all the time. Transport is a real issue.

GILLIAN: My younger son who coups use a taxi I would need to

know who the driver was, the driver would need to know him, Chris is limited

as well, perhaps a business like that.

PETER ROSS: The taxi and Stranraer set up a wheelchair

accessible taxi with a business, but it didn't survive because the market's too

small.


LESLEY: I don't know if there is one in Dumfries. It.

PETER ROSS: The taxi people wouldn't do it.

PAUL: Why wouldn't the person use the taxi?

GILLIAN: I would need to know the taxi driver was aware of his

ability, when you stop outside the, place, you don't let, Steven, he would

open the door and take off and get out.

PAUL: We have seen something recently, the support provider

has a picture of the person on the individual's tablet when the person comes

to the door, they match the image on the tablet with the person at the door,

so they are happy to open the door if your taxi driver has an app, to say, it is

your taxi driver.

LESLEY: You're talking about a disability friendly taxi service, I

don't have a disability and I don't think they are friendly half the time.

PAUL: Have you any ideas, about what a one off grant could be

used for?

LESLEY: The reason I asked about the business start-up, is we

generally have people with complex needs, who would do the business,

something carers get together and do on behalf of the people they support

and get an ILF grant or would that not tick the box.

GILLIAN: Is it about outcome?

LESLEY: See Gillian and I said, we have this brilliant start-up

venture; people with disabilities are going to access this, could we apply for

the ILF fund on their behalf to do this start up I shall tell you more and more;

my daughter is 20, doesn't have capacity, and I see there are lots of fantastic


rights groups, etc etc but I don't see people on these groups advocating,

people who don't have the capacity to make their own decisions that issue

came up last week when there was an invite to something.

GILLIAN: Up to 18 you could go as a carer, and after that it was

people to represent themselves, my boys, don't have capacity to and poor

communication skills. I felt it was discriminated against.

LESLEY: Say Gillian and I, or a few of us got together and we all

had children for example with complex needs and said: "Here's a brilliant

start-up", obviously they can't the run the business they don't have the

capacity to do it but they could be involved in the planning and delivery and

saying what they want.

PETER: What kind of business are you thinking about?

LESLEY: Yeah.

PETER: Around advocacy?

LESLEY: Not really, no that was just, a one off, because I'm

concerned. They may be not represented, no that is not the business idea.

PETER ROSS: There's a business in Lanarkshire, we would tell a

social worker who thought about using it for, it's a landscaping business, and

his.

PETER: Clydesdale.

PETER ROSS: But what I heard, you need contracts, he took on

and trained proper landscaping staff, you know, people who would work, so

work alongside each other and so that, people without the capacity felt

empowered by working but he actually still needs contracts.


PETER: It's run as a commercial business but it has a social

element to it where they get referrals through social work, people with

disabilities in their early years that didn't work so well, no. You have people

that have social and emotional behaviour problems, excluded from school or

young offenders type of people, it primarily works with now, they do a real

landscaping job they're out with their boots learning how to use tractors and

hammers and all that, brilliant, social enterprise.

LESLEY: No, I think it would be about finding a market, a niche

something required to be totally, selfish, something I, my daughter would

benefit from for me to get committed to it.

PETER: But the principle of it. ILF have no interest in

determining what the business might be, that doesn't, would be entirely up

to.

PETER ROSS: I think the ILF grant that would kick start all the

other grants, the EU organisations gives out grants for business start-ups.

It's all match funding and it needs that, you know, so.

PAUL: Should there be a maximum?

LESLEY: I don't know if we can make this a decision, I'm

assuming there would have to be a maximum it's not a bottomless pit of

money plus if Gillian applied and I applied you said to me you have 10,000,

but Gillian only gets five, how do you make those decisions you would have

to have those restrictions.

PETER ROSS: Universal grant, £1,000, which brings in, another

thousand a universal, minimum.


PHILLIP: I'm involved with a project - - can I mention a project in

Edinburgh? There was a group of three or four families, individuals, caring

for adults with learning disabilities they developed a small co-operative and

developed a project, they were getting quite a lot of support I don't know

where they're getting money from, they pooled their l budgets, a lot of

money together to develop a service which allowed them to be reassured

that their children could move along to as of they were directly involved in,

managing and planning and I gather it's been successful these were people

with high support needs that is I can send you details of that.

LESLEY: I would be interested in anything like that. So what

was the service they developed, they developed the service.

PHILLIP: They got some support from an organisation which has

- I can't remember the name of the organisation who provided them with a

great deal of support and how they could develop this, but at the end of the

day it was for people, three or four individuals with very very high support

needs who were able to move into a service which was very much allowed a

great deal of choice, control, you know there was a lot of recruited their own

teams of dedicated, a small dedicated team of staff with consistent with

support needs, this small group of individuals in this one house or two

houses or whatever it was, very localised need.

NEW SPEAKER: That's how that worked because it was families

they all had the same aim and wanted the same outcome because they were

so personally involved.

PHILLIP: It was locally based within their own community, close


by, but that's just another.

LESLEY: No, I would be interested.

PAUL: I was in a similar role in the past, doing funding, of start-

up organisations, everything was on a case by case basis, but you had to

have a business plan, maybe we could do that match funding you have to,

the group would have to have a formalised plan.

LESLEY: I wouldn't anticipate I could come to you and say I have

this brilliant idea for a respite facility, you would say, there is 20 grand.

PAUL: How you would assess it?

LESLEY: Prove that the person's done their homework, business

plans? I have run my own business it was very small, completely different

and it proves commitment if they have done the business plan, looked at

their local community, how many people would gain from it, etc etc you

would need someone to assess that, that would be an individualised thing.

In terms of the application process, I would think.

PAUL: The current, ILF eligibility, criteria is 16, to 64, in receipt

of higher DLA, PIP, how would you feel, about the criteria for anybody

applying for this grant, should it still be the same?

GILLIAN: Both of my sons, would be, exposed under that,

neither of them have capacity to live on their own without, support.

LESLEY: Not so much don't have capacity, but wouldn't be able

to live independent.

GILLIAN: Without support.

PETER: Why do you think your son wouldn't be able to do it?


GILLIAN: They don't get higher rate, DLA because they can

walk. Under the new PIP I hope that changes.

LESLEY: High rate, care means you're up during the night there

are, plenty of people on medication, that sleep all night but have huge needs

during the day.

GILLIAN: I don't know, it doesn't seem.

PETER: You still have concerns about the DLA.

GILLIAN: You don't know how everybody's going to come out.

PETER: Better than anticipated, the feedback I'm getting.

LESLEY: For the people who should be on it, are getting it and

the people who shouldn't be on it, that's the idea.

PETER: So some concerns about DLA because of the DLA rules

around, support, to get the whole of DLA you need to have overnight

support, there are a lot of people who have high day time, support needs but

no support needs perhaps because they are on medication, or sleep through

the night therefore wouldn't be eligible for higher rate, DLA.

LESLEY: Plus, somebody was talking about the equipment, tele,

care, that watches over you during the night you wouldn't be assessed as

needing support through the night if you had tele-care it's maybe about

taking that into account that's more and more what they're going to be

pushing.

PHILLIP: Respite, is a big issue in this area. What kind of

respite would you like to see?

LESLEY: This is part of my one of my business, ideas is to look


at respite provision to have respite but I don't know how to describe it, but

not, here's a respite base, like say, this month we're going to Ayr and the

respite is going to be, provided there, and this month, we're going to

Aviemore that's your respite and the person, it ticks a lot of boxes with social

care.

GILLIAN: Respite, with a local agency were envisaging, a town

flat and house you could book into so life went on as normal. But, in a,

homely environment, rather than a - my son uses respite care which is great,

he knows it well and enjoys, it, but it is very hospital beds, hoists in every

room he didn't need any of that. Just having a house where they could say.

LESLEY: I would rather my daughter went to a flat with three or

four of her friends.

GILLIAN: We have to move out of home too - for them to get

support at home.

PHILLIP: Transition flat?

GILLIAN: There's a good one in Ayr, care for - my son went

down to Annan for that - because it stopped - my eldest son he did

everything in Dumfries, so staying in Annan wasn't the answer. But there

was a training session flat.

LESLEY: A large house, there are several rooms, a common

room you have a big kitchen and people are supported, you could have it as

respite. Maybe at some stage in the future it would be developed, people,

live there, etc but that's how I see, respite, more, because my sister in

Ayrshire, goes to a respite, facility, it's very much a respite, facility, great it's


fantastic up there, but it should be a home from home, like Gillian is saying.

PHILLIP: I have seen some local authority where they have a

house accessible at the weekends for respite but during the week, they do

transition, planning for young people, moving on learning new skills, so

doubles up. In East Lothian, can send you some stuff, like that.

PETER ROSS: Turning Point.

GILLIAN: We opened one in Stranraer that was a guy from

Turning Point I was speaking to about a similar thing in Dumfries.

LESLEY: It's successful when parents are involved.

PHILLIP: There's a project in Edinburgh the break- away project,

where they people who don't qualify for high levels of support they don't,

need eligibility criteria, they're able to pool relatively small amounts to offer

at weekends, and throughout the week social programme which is organised

through what they call, a co-operative I can't remember, it's a lady, called,

Viv Nicolson in Edinburgh, she's a Local Area Co-ordinator. This project is

creative, I have spoke to families who love it, because again it's for people

who are mild to moderate learning disabilities who can gain a lot from social

opportunities and perhaps living with an older parent they're with their own

peer group and love it and enjoy it, they decide what they want to do,

nobody else decides. But it needs to be well managed and co-ordinated,

certainly there are projects out there.

LESLEY: We both use, key community supports, my daughter

goes to groups but it's only, groups, it's not always, only people supported by

Key that can access that, it needs to be people that access, turning point,


not all the time but quite a few of them, why can't they go through a Turning

Point group in Stranraer.

PETER ROSS: Competition.

LESLEY: That is why it works when parents or a co-operative do

it.

PETER ROSS: I'm intrigued by the pooling of grants how would

that work.

HOLLY: A few of you as a group?

LESLEY: We know other parents who would be interested in

some of the stuff we're talking about as well.

PAUL: If what if it was to support a person both of our

workshops you've mentioned the need for emotional and transitional

support.

PETER ROSS: Whatever it was appropriate.

LESLEY: What was your question?

PAUL: Funding a person in the realm of psychological support,

community support.

LESLEY: My only worry is the person's only there in post, two

years, then disappears. You hear people saying: "That was brilliant".

GILLIAN: You get from the regional schools going to the big

schools.

LESLEY: I see that as a local authority's job.

PETER: Talking about a community capacity building type

person somebody's job to work, like co-ordination.


PHILLIP: I am sorry I use that the term, Local Area Co-Ordinator.

GILLIAN: We used to have them before, there was one up in

Nithsdale way back.

LESLEY: Who employed them?

PETER: Almost always employed by the Council. There is two

services that aren't. But they're getting fewer and fewer. Midlothian's is

run by Enable Scotland and another Council's run by somebody else.

PHILLIP: You've come up with interesting ideas.

LESLEY: Part of what I was say ties in with short breaks you

don't need to pay someone, that's why you get parents involved, we don't

want paid for it, we do it for the love. I get frustrated too when the Council

pay someone, 100,000 to come in and tell us something we know, say me

and Gillian wanted the same thing for our children I put half in, you put half

in.

GILLIAN: I like that idea it's the better use of money.

PETER: Lots of people, people, like pooling, their SDS, budgets, if

they get X amounts of - my son and your daughter both like hill walking.

GILLIAN: We do that all the time.

LESLEY: The roving respite project! This month we're going to

Ayr.

GILLIAN: We've done that for a while, shared support, we can

make our budget almost double.

PETER: Natural Breaks it's a non-respite project, supports,

people to go on holiday for their respite, people going to Florida, Blackpool.


LESLEY: If she's going to Florida I want to go.

GILLIAN: You talked about that having to take your own

support.

LESLEY: A couple of weeks ago we took my daughter, to

Disneyland, she's 20, I'm 45, my husband's 50, there's a picture of her, my

daughter, sitting on Dumbo the elephant. I say: "Are we going to be doing

this in 15 years' time?" He says: "I don't care." At the same time, is that

best for her?

PHILLIP: A bit more support for transition, I see a lot of, these

where it's a lot of like a confidence in what a local authority can offer to

moving things along.

GILLIAN: I don't want the local authority involved in my

decisions.

LESLEY: They bring in SDS it's all about meeting outcomes you

spend the budget: "They're not doing that", going, "sorry that wasn't in your

plan, can't spend your money on that", that's what they're doing to people.

PHILLIP: They didn't have confidence in the local authority.

GILLIAN: They run better areas.

PETER: Definitely got enthusiasm for group, collective sharing of

resources. Did we get, express a view on whether or not there should be a

limit to the how often people can reapply?

GILLIAN: Possibly, not everybody's going to hear about this at

the same time, so you - takes quite a long time for these things to filter

there.


LESLEY: Somebody could have a one off grant of 10,000, you

said you can only apply three years in a row?

PETER: Rather than a maximum number you could say a

maximum amount per person?

LESLEY: You have to have a maximum amount definitely, so

you're not building people's hopes.

GILLIAN: Get them to appreciate if you're taking five grand,

that's you.

PETER: Maximum for any one individual, is ten grand, two year

period, whatever.

LESLEY: Ehm em.

PETER: That's a means of rationing it. That kind of contributes

to the maximum or minimum award doesn't it, because there is the

maximum is an overall maximum for an individual and there is no minimum

then.

PAUL: Might kick start the match funding.

LESLEY: Say someone came to you and said: “Look, I only need

100 to start this up, that is all I need.” Would you want to turn someone

away?

PETER: Probably making that administratively worthwhile.

GILLIAN: Maybe that person hasn't thought everything through

you need to work with that person you only need 200, but you have got an

extra, 400 on top of that.

PETER: In one of the Ayrshire's a woman with severe enduring


mental health problems whose life has been transformed by a greenhouse,

her Council brought her a new greenhouse through SDS, she's living in the

countryside, started gardening and is doing brilliantly.

LESLEY: We did that for a carer, short break for a carer she got

a greenhouse.

PHILLIP: We talked about older people, there was a high

proportion of older people in Dumfries and Galloway and it just, looking at

how they might be supported to avoid having to move into institutional care,

what kind of options, how could we create and try and support, older people

to be sustaining.

LESLEY: You're talking about over 65s. I wonder if it is about,

and I know it's not everybody wants it about the tele-care aspect, one of the

other things especially in Dumfries and Galloway there is less and less

people to take on the jobs of paid carers, so going forward, who is going to

look after us when we get older? I know there's a big question around that

as well, it's about on off grants for aids and adaptations to allow you to stay

in your own home that the local authority wouldn't cover.

PETER: So, that, that's the obvious question.

PHILLIP: Historically ILF is only funded up to 60s, but now,

they've moved on, it's restricted to under 65, the current criteria for

applications I do feel there may be opportunities to support people to remain

longer in their own home if we could create a kind of.

LESLEY: As soon as you reach 65 you can't apply for DLA

mobility component you don't get the mobility component all of a sudden


you're not allowed to move around once you're 65.

PHILLIP: We all know of disabled people con find to their homes.

PETER: Peter, I'm sure you will be supportive of the principle

Phillip is referring to you should not stop applications at age 64, what do you

think about that?

LESLEY: I don't have any issue with it, it's widening it out, would

that mean you have to look at the amounts? Especially in Dumfries and

Galloway.

PETER: Monetary amounts or number of people amounts?

GILLIAN: Is there any other funding for older people in that age

group, would they be accessible to other funding?

PETER: There is different funding streams available for people

over 65, transport, what are they called, free social care for older people,

there was millions and millions.

PHILLIP: There is lots of various projects out there, it's still for a

lot of individuals I see, I worry what might, worry families worry about what

happens as they get older, whether they are at risk of going into care.

PETER ROSS: Carers allowance, if you are a pensioner you

don't get it. You get your tenants allowance, that's not means tested, you

get DWP, if it's been awarded, for the rest of your life basically.

LESLEY: If you got it before you were 65?

PETER ROSS: A new bus pass, care if you require it, but it's not

free.

GILLIAN: It's means tested. For some it will be free.


PETER ROSS: A lot of the time it's not. The means test level is

low.

PETER: Any last points before tea? We've got general questions

for when we come back. Anything about the single grant scheme, people

want to chip in before tea break? Added on to that list is support for

employment and voluntary work that was an addition you added in earlier.

PHILLIP: Are you able to access services like physio.

LESLEY: You would have to be assessed as needing physio,

speech therapy, my daughter has none she still has limited speech I don't

know if there are opportunities where she can develop her speech.

PETER: There are opportunities for communications adaptations.

LESLEY: I can't remember the last time she saw a speech

therapist. She would have been at school.

PHILLIP: Communication tools widely available iPads.

LESLEY: We bought the iPad when she was at school, speech

therapy paid for the app on her iPad. That has now disappeared, I done an

awful lot she types and sign language and we understand what she means so

it's maybe something like for example, if I was getting older and she wasn't

going into her own accommodation, at the moment me and my husband are

probably the only people that always know what she means, and Steven

(looking to Gillian) her son! But if we were to die tomorrow, no one would

have the knowledge we have, say that that's a bit scary, but then there's

loads of people in that situation.

PETER: Are you not working on emergency plans and future


plans?

LESLEY: It's a bit like: "Have you written a will?" It when you're

a parent carer, I know.

PETER: Lots of people, I speak to, there is head in the sand,

you're thinking about it, already and you're only 45, get the plan done. It's

easy for me to see.

PETER ROSS: I have told my children, we're having a reading

next year, it's a significant birthday for me.

GILLIAN: I have a will and nominated trustees, for them. It's

my younger son who doesn't have a disability, a family friend and my niece

and I've - I can't tell em this is what to do but I can leave instructions. That's

- there will be a list, he was laughing, I can review my list every year,

whenever I want!

PETER: You can start create a discretionary trust fund. With a

letter of instruction.

GILLIAN: That's what I'm doing.

HARVEY (From the Floor): If people want to get a cup of tea,

start back in five minutes. 13.46.

Tea Break

HARVEY: Our timing's are slipping, it's a slippery slope, as they

say. I thought this afternoon - thank you for your input this far - we're going

to come on to, we're in the final furlong - all of those metaphors, etc etc - to

the end of the session.


I'm going to ask you three questions actually and open it up to

more feedback.

I'm going to do the first question, ask you to discuss this briefly,

in your tables, and then, essentially you have Post-it notes, I'd like you to put

your preferred options from the themes.

So, the question is, that we would like answered is: Do you

personally have a preference between the options presented between theme

A and theme B are out of those two themes which would be your preferred?

If - but we are going on to - if something is missing do you have a preference

between options presented between theme A and B, could you put it on your

post it note? I'm going to collect them and put them on the flip chart and

feedback what everyone's saying. Five minutes to have a quick discussion

and write your preferred options from the themes.

Group 1.

PETER: Option A is for a limited period X amount a month or

option B is, one off Point in Time payment. Your suggestion this morning,

Gillian, your older preference would be a one off payment you could use

flexibly, it's like a tie breaker of the two options.

LESLEY: That would be less admin.

PETER: If that is your preference write that down, your

preference is options 1, paid as if it was option 2, option 1, is more money,

associated with option 1, it would be for a longer period of time but rather

than having to get it in instalments on a monthly basis you would get it up

front.


HARVEY (From the Floor): Do you have a preference between

the options presented within theme A and theme B?

LESLEY: Is it one and two?

SUSIE: Option 1 is A and Option 2 is B?

GILLIAN: I'm saying Option 2, I'm saying, A and B.

PETER ROSS: We messed that up a bit. But Option 1, is.

GILLIAN: What would be for one person wouldn't work for

another person. I see that as a one off payment to be used.

HARVEY (From the Floor): There's a bit of discussion, so, what

this is asking for in group, preferred option in A would be things like support

for discharge, support transition from for options or Option 1 or option A, for

Option 2 it would be things like, looking at where my flip charts are,

equipment adaptations short breaks, alternative therapies, we're going to

group them under each flip chart, A or B.

PETER: You're asking for two different things, life summary of

the discussion on this table around the answer to this question is in option,

one, clear preference for support for people leaving the family home.

Everyone agree with that, lots of conversations about supporting people

leaving the family home. So you're preference for option 1 from the options

available is support for people leaving the family home. Option 2, there are

whole, probably two things, stood out in the discussion there, one was

around short breaks, respite, and one was around, support with employment,

but particularly focused on voluntary employment for those people who don't

fit with the DWP work, Job Centre Plus type interventions.


People comfortable with my summary there, I'm not putting

words into our mouth.

GILLIAN: No.

PHILLIP: Models of supported living.

PETER: So, option 1, support to leave the family home. So what

do you want to call it, national breaks, respite? Non-traditional respite.

LESLEY: Non-traditionally respite that could fit a whole load of

things.

GILLIAN: Creative breaks.

PETER: What was the other thing, there was something else?

LESLEY: What else, I'm worried, wondering about the business

start-up thing that ties in with the respite.

GILLIAN: That's how we spoke about that being managed you

were talking about Peter and group of parents?

PHILLIP: Supported living.

PETER: Business start-up, around a new model of supported

living.

LESLEY: I'm going to copyright that Roving Retreats!

PAUL: All the stuff that mum does?

LESLEY: You.

HARVEY(From the Floor): Can I ask the group facilitator to

collect them all up.

PAUL: More fun things.

HARVEY(From the Floor): Moving on to the next point.


GILLIAN: Is this an either or? That it's going to be set up, Option

1 or Option 2.

PAUL: The information is going forward to the working group.

LESLEY: This is the first consultation?

LESLEY: Gillian and I are going to come to every one.

HARVEY(From the Floor): Has everyone got their points up?

There is interesting stuff here, let me try and take you through, some of the

points. What we will do, so people know, we will be typing this up and you'll

see what's been produced in terms of input. Some of the preferred options

option A: Fun things, that's what life's about. Don't forget transgender

transitions. Support to leave the family home. Non-traditional respite,

roving respite, whose point was that? Can I ask you what do you mean by

roving respite?

LESLEY: Rather than a traditional respite facility that - rather

than, going to a traditional, place, we have a group, and say, "this month

we're going to Ayr", "this month we're going to Aviemore."

HARVEY(From the Floor): So the respite moves, rather than a

fixed location? I had a mobile, sort of a caravan idea! I have a couple of

options of hybrids, option B - Option 1A, employment support for people who

cannot get paid to work, leads into Option 2, business start-up, new model of

supported living. Other one in there, would be may not be necessary to

have an assessment? Or what we class as a formal assessment, social

worker, etc could we do it in a less bureaucratic way. That's a valid point

you don't want to be spending £2,000 to deliver a £200 intervention it


doesn't make any sense. Flexibility, one larger payment. Adaptations,

business start-ups, twice? So, really interesting stuff up there.

We're going to move you on. Because I don't want to overrun.

Because I know that some people have been champing at the bit for things

we may have missed off. The question is - that we'd like answered - is is

there anything missed, missing that is not covered by the options presented?

So I'm going to give you five minutes and be strict, because I've got people

that like to edge over the five minute point, we're sticking to five minutes. Is

there any point that we've missed off in those options?

LESLEY: One thing that's not been mentioned is outcomes, did

you?

PETER: I did at the beginning, one of the principles of the fund

was it can be used to meet.

LESLEY: That is right.

PETER: Cynicism around outcomes.

LESLEY: No, no, not at all, I wondered if that was the ethos,

what I mentioned earlier about, SDS it's all about meeting outcomes but a

social worker saying: "You can't spend your money on that, you can't spend

it on that." That's the cynicism.

PETER: You want as much choice and little bureaucracy in how

the fund is used?

GILLIAN: It would be nice for somebody to presented with what

ILF is about and go away and think: "That's made my day, feel good about

that." Not: "Oh my God, I have got this forms to fill out, they want me to go


in and assess somebody."

LESLEY: I don't think it's that. Going by what my mum says, if

you compare the process of ILF to me accessing SDS for my daughter, much

less work, I think. My sister gets ILF, so my mum's been in control of,

charge of that. I would say the process she's going through compared to the

process I have to go through for SDS for my daughter, my mum's experience

is probably much better. They meet different needs the packages, but,

yeah, I'm starting to feel like I have to jump through hoops.

PHILLIP: Qualifying Support and Services. Some people have

said that the ILF definitions are not, are too restrictive and they are much

more restrictive than SDS?

LESLEY: Going to be what you said yes they are.

PETER: We said that this morning, that needs to change.

GILLIAN: We've never mentioned the health and wellbeing, I

don't know what these come under, now it's a forgotten area amongst

learning disabilities, people considering their health and wellbeing and

perhaps there's funding needed.

PAUL: Would that be discussed through the access

conversation?

GILLIAN: It's not really. Does anyone ever come and say.

LESLEY: I did my study a few years ago, learning disabilities

steering group to see what was missing in the area, one thing, our children

we look after, we're advocates, a lot of people with learning disabilities

maybe their health needs aren't being looked at and we're talking about


there should be an annual health check for someone with disabilities who

maybe can't express how they're feeling.

GILLIAN: Funding some of your parents’ groups.

PETER ROSS: Is that not a life event?

LESLEY: It's not a life event. My daughter can't tell you when

she's in pain she doesn't understand when she's in pain it comes out in

different ways if I'm not around, who is assessing that?

PHILLIP : No support from Community Learning Disability in

your team?

LESLEY: Only if there's a crisis. The only time I have had

support from the learning disability team was when all hell broke loose, it

was horrendous. That's something different.

PETER: That support should be there, that's a health service.

LESLEY: I think there should be an annual health check.

PETER: Peter, conscious your family circumstances are different

is there anything you think we've missed out in relation to your

circumstances?

PETER ROSS: It's a crisis payment. It's not a payment for an

emergency something crisis support I think is the issue. Yeah, for me, and I

think 65 plus, it's inevitable. That's the issue it's not so much the

bureaucracy, which I don't know anything about it, but I'm sure I can manage

but it's that confidence needed to manage the ongoing situation. Whether

it's to do something.

PETER: I've only got two things.


HARVEY(From the Floor): Moving forward, is there any other

points here I need to put up. Some more. Great points coming out of here.

Actually there's some around the actual fund, some more about how we

engage with people and how we keep people informed if that is right. We've

got stuff around employability, we've - there's comment around discussing a

little for those over 65, who may be going through life events themselves,

that's a valid point. There's a piece around three stage process, about

applications so about, like sort of stage one, light touch, more grant means

can other agencies, refer you, guarantee, essentially we have very little - I

wouldn't say, balance and checks but few balance and checks in terms of the

proportional assessment.

It says here it shouldn't be more than the cost of administering

the fund. I would argue the aspiration is that it should never be more than a

quarter of the fund that you're administering, i.e. if you're going to give a

grant it shouldn't cost, £200 for a £200 grant, makes no sense for me.

There's a piece around there.

Then there is: "How do we promote awareness?" A good piece

of feedback for the day. Are there groups we haven't got represented here?

I'm not talking about the - some of the people from multi-cultural centres,

associations, who have a who can get this to other constituents that we may

not be reaching. That's a really valid point. We'll have a discussion

afterwards about how we also include that group in here.

Then there is about - mental health is a common theme running


through the last two slides. Mental health about individual's being

disconnected from the very services. Perhaps the only which they come

through those services, if at all, is through voluntary sector so it's about how

we perhaps use them as the gatekeepers and as little bureaucracy I love

that, that's an aspiration for all, should be an aspiration for all public-sector

organisations.

Then there is a bit about young people, LGBT, mental health, so,

again, thank you very much, but again, like I say this isn't just a one hit

wonder if you go away and have a light bulb moment, please send in an

e-mail, we'll include it in a collective, sort of feedback or consultation.

Right, so. Can I say, the actual question is do you have any

other thoughts or comments on the options presented, are you going to say,

on the options presented specifically, if you have any other thoughts or

comments about anything else, please put them up now and put them up

here, we'll group them together. We'll give you three to four minutes on

this, we'll have a bit around evaluation and next steps of this, four minutes,

which should be coming into the final final few metres.

TABLE 1

LESLEY: If Scottish Government are opening up this next year,

how much money have they allocated to that?

PETER: £5 million.

LESLEY: I thought that 5 million, is being accessed already, no,

55 million, is that?


PETER: Total ILF Scotland budget roughly, so the fund, then

there is Northern Ireland, is about 8 million, that comes to about £55,

another five million.

LESLEY: Not a huge amount of money.

PETER: Which is why we talk about criteria for access.

Targeting it.

LESLEY: 5 million per year.

GILLIAN: Is it means tested?

PETER: The existing fund is means tested there is no decision

about the criteria for a new fund. Essentially if you get income support or

income support type benefit, then nobody.

Lesley: Most people with disabilities.

PETER: Most people, are on benefits and don't have tens of

thousands of pounds tucked away in bank accounts.

GILLIAN: They will inherit one day.

PETER: That is you putting in the discretionary trust fund.

Anything else we've missed? What is the question? Any other thoughts or

comments. Any general thoughts or comments from what's been said?

PETER ROSS: All revolves, for me around the administration,

bureaucracy in money, that is the key thing, I don't know whether we'll get

influence over that, perhaps' the real thing to say, bureaucracy, there's got

to be more.

LESLEY: Simple application process.

PETER ROSS: But I'm talking about the whole gamut of


bureaucracy, there has to be more talking about between the DWP, NHS all

these folk.

GILLIAN: That's supposed to change into the new integration.

PETER ROSS: This particular fund hasn't got enough money.

PHILLIP: As an assessor I would support more simplifying,

administrative focus, we've inherited, as ILF shut down in England, we've

inherited policies, speak as an assessor, it's a nightmare.

PETER ROSS: I read through the document, I started and then

went!

LESLEY: I would apply for funding, I know I would be fine with

the forms, a lot of people wouldn't bother.

PHILLIP: Do you find it onerous in terms of record keeping, all of

that reviews where people are having to look at, people like me having to

look at?

LESLEY: I think my mum uses an agency to do that for her, she

doesn't do that.

PHILLIP: A lot of people have big folders, several folders.

LESLEY: I thought about SDS, when I have to have a PA, I'm a bit

head in my sand.

PETER ROSS: I had PA's for my sister it fell apart. "That person

isn't suitable for your sister". I can't sack her.

GILLIAN: I used PA's, under the old direct payment scheme SDS

but I prefer using agency -

PHILLIP: In Edinburgh, they are PA's but in Scottish Borders. It's


problematic, travelling.

- GILLIAN: You can get a team of people.

PETER: You have the relationship with the local authority?

GILLIAN: I wouldn't want them to know too much.

HARVEY(From the Floor): Any more points on this table, put

them up?

So, I was going to give a quick feedback going into the closing of

the day. And, is everyone okay, to? Just giving you a couple of themes

from this, are two out of six that says no LA involvement, keep ILF

independent of local authorities, interesting, comment.

Keep it simple. I love it, keep it simple, including application

process. Two around person centred delivery, not making it too restrictive.

Coupled with equalities making it firming it into the ILF process. Our

colleagues in the Scottish Government are looking at some of the legacy

issues we've inherited from the Independent Living Fund specifically around

equalities.

My favourite, I'm not choosing! "Get more money. Get more

money!" I didn't put that up there, I didn't tell anyone to put it up there

either. So. Thank you very much.

I'll hand over to Peter to say a few closing words, I will only do

the more dull, boring but nevertheless important points before we finish.

Expenses.

ROBERT: Final thoughts from this group in poetry form. To


sum up.

PETER: You can finish off Robert.

HARVEY: Expenses, form we have got ability to pay today if

people want to, if not, you have expenses forms in your packs or e-mail us.

We'll turn this around within a week. Give it to us we'll turn it around within

a week if not quicker we're not going to wait for months. Evaluation forms,

can I please ask you too. Come to these events, give an evaluation form

they are really important for us, especially your first event you can help us

shape future events but also gives us a better idea. Something around,

venue, some of it is about, if we could have done better, I'm particularly we'll

take anything on the chin looking for what could be done that we could do

better.

In terms of stuff on the website, feedback, all the stuff you pin

pointed today, put all that on the website, give us time to type everything

up, but all the relevant forms you referred to today will be accessible in full

on the website if you look at them, any points you want to add afterwards,

there will be a direction on the website to take you through, but simply fire

an email to us. There will be details there you can use.

I would like to thank you all from me for not falling asleep on me

in the afternoon, after lunch, thank you, Eilis, who is going to have a detailed

actually of all the conversation on that table, thank you very much, hand

over to Peter to close off.

PETER: Robert, will do some sort of closing, I want to say, a huge

thanks. This was our first event as Harvey said, pleased from my


perspective, went well, I have sat at this table and talked to, individual family

people affected by disability, just keeps bringing me back home to what ILF

is all about, improving the lives of people with disabilities and the last point

from Peter over here, was this one: Harvey mentioned "get more money," of

course we'd all love to get more money, but nevertheless we've got five

million, and the existing fund. Our job is to get the best possible outcomes

for as many disabled people as we can with that money.

The reason I work for the Independent Living Fund is from friends

of mine who have relied on the fund to get a life for years and knowing

first-hand the difference it makes in people's lives. We'll now have an

opportunity to give that benefit in one way or another to a whole lot more

people. I appreciate your input in helping us think how we're going to do

that, we're going to make lives better through this money and what you have

told us today will go to the working group and inform the thinking and

ultimately help inform the Minister's decision, really appreciate your time,

take it away. Robert.

ROBERT: We had a discussion about parameters and age, Joe

managed to write this down. He wanted to make a point of, life is a very

long time. And we have to climb a strong vine. Let's get to see our

complexity, listen to our feedback, let it glisten and stretch it, make it listen.

JOE:

Life is a very long time.

We are there to climb a very strong vine.

Let's get to see our complexity.


Listen to our feedback, let it glisten, we need that.

Stretch our vision, keep it simple.

Great services integrate, this we can use, we can add another

squint.

Fortunate to be in the company of Susie who represents

Scottish Government.

There is a plan to have an affect we also have Andrew, Alex and

Eppie.

There is a verse we can fold, the will is great, person controlled.

Here to facilitate, go to ground.

Experience to bank with the thoughts of Len, Robert and Frank.

Hope to leave people stunned.

So much we have graced because of the Independent Living

Fund.

Please leave with a smile on your face!

HARVEY: Thank you very much, again, safe journey home to

everyone, we'll be around for a while longer.

Documents

ILF.Dumfries.20.06.16P2ilf.scot/.../uploads/2016/07/ILF-Scotland-Dumfries-Trans… · Web viewILF Scotland. Engagement Event at Easterbrook Hall, Dumfries. Monday 20 June 2016