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TRANSCRIPT
This is a draft transcript which has been prepared from text typed in real-time for the purposes of communication support. It is not for further circulation and has no legal standing.
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
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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.
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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.
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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
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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
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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
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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.
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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,
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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.
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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.
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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
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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.
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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.
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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
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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?
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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
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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
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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,
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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.
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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.
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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.
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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
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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
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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.
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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
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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.
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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.
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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.
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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.
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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
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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
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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
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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.
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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
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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?
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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
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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
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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
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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
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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.
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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.