Network 1000 information sheet 29 06 06 FINAL

							      Network 1000 – Information sheet for
       VISION 2020 UK 2006 Conference

                           June 2006




Authors: Graeme Douglas, Christine Corcoran and Sue Pavey


Summary

   What is Network 1000?
   Progress of Network 1000
   Some findings
    -   Some general figures about our sample
    -   Employment and unemployment
    -   Disability, health and hearing
    -   Travel
    -   Issues raised by participants

What is Network 1000?

VISION 2020 UK and the University of Birmingham have been
commissioned by the Big Lottery Fund to carry out the research
project “Network 1000: Surveying the changing needs of visually
impaired people”. The aims of the Network 1000 project are:

   To establish a consultation network of 1000 visually impaired
    people who can be regularly surveyed on a range of issues
    affecting them;



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   To provide a network for longitudinal studies enabling
    comparative data to be evaluated;
   To provide statistically useful data on the changing views,
    experiences and needs of visually impaired people which can be
    used to influence service development and provision.

The project started in March 2004 following a long period of
negotiation and the eventual development of a successful bid to the
Big Lottery Fund.

Progress of Network 1000

The project is initially funded for three years, due to end in March
2007.

We have worked with 20 social services departments. Approximately
6000 information packs have been sent out inviting people to take
part in the project. From these we have recruited and telephone
interviewed 1007 visually impaired people. We are currently
analysing this data and writing a fuller report. By the end of the
project we aim to interview our participants again.

The Sample

The sample of 1007 participants has been very carefully designed so
that we recruited people of different age groups. We have five
different age groups and the numbers in each group are as follows:

   18-29 year olds – 203 participants
   30-49 year olds – 212 participants
   50-64 year olds – 220 participants
   65-74 year olds – 186 participants
   75+ year olds – 186 participants

In most circumstances our sampling strategy proves very useful
because it gives us data about the whole population. However, we
know there are more older people in the visually impaired population.
To account for this, we can ‘weight’ the data we have collected.
Therefore, unweighted data gives us frequencies for our sample while


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weighted data can be more helpful in giving estimates for the entire
population.

There is another sampling issue which we should consider. Some of
our sample (47) have learning and communication difficulties such
that our questionnaire was not suitable. In these cases we carried
out similar interviews with a ‘key informant’ who knew the visually
impaired person. In many parts of the analysis this data is most
usefully treated separately.

Some General Findings from our Sample

We asked our participants a lot of questions e.g.:

   Details about them and their home
   Details about their vision
   Reading and access
   Hearing and health
   Employment
   Finance
   Independent living skills
   Travel
   Computer use
   Leisure.

Here we report some figures (sample and weighted). We also asked
our participants an important final question, “Could you spend the
final minute or so telling us about things in relation to your visual
impairment that are important to you – this might be something you
have found really difficult now or in the past, or alternatively
something that has been very positive.”

Our Participants and their Home

Below we list some figures for the sample in relation to some aspects
of our participants’ lives. Of course, many of these things are very
much dependent upon the age of the participant. For this reason we
give both the sample figures (which reflects our even distribution of



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age across the sample) and the weighted figures (accounting for the
general population of visually impaired people being older).

         Characteristic           Sample %      Weighted %
Marital status:
   Married/living with partner      50%             41%
   Widowed                          16%             42%
   Single (never married)           24%             10%
Living alone                        30%             45%
Housing*
   Own outright                     42%             62%
   Mortgage                         20%             10%
   Renting                          27%             20%
Registration
   Blind                           45.5%            43%
   Partially sighted               51.5%            55%
   Unsure/didn’t know category       3%              2%
Sex
   Male                             44%             40%
   Female                           56%             60%
* Based upon household (e.g. mortgage may be in a relative’s name)

Employment and Unemployment

We asked people of working age (n=559) how they described their
employment status. From the answers they gave, we are able to
make the following population estimates for registered visually
impaired people of working age:

-   34% - in some kind of employment (21% amongst those aged
    over 50; 45% amongst 30-49 year olds)
-   20% - unemployed
-   22% - long term sick or disabled
-   12% - retired from paid work altogether (majority being the 25%
    amongst those aged over 50).
-   4% - full time student (majority being the 21% amongst those
    aged under 30).




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Of those unemployed, about a quarter describe themselves as
seeking paid employment, the remainder are not. 60% of those
unemployed and over 50 years old do not want work. This is
reflected in a vast majority belief amongst this group that they are
unlikely to get employment in the next year.

We illustrate these figures with three case studies:

CASE 1: KATE

Kate is 24 years old. She rents a house with a friend. She has a
degree, and is finishing off her studies and looking for a job.
Registered partially sighted and has a lot of functional vision. Kate
has had her visual impairment from early childhood.

“My main issue to do with my visual impairment is I personally find it
hard to know how much to tell people when you are applying for a job
- and although the new DDA says people have to provide you with
things, I still don’t know how much you should tell people. Do you wait
till you've got a foot in the door and then tell them, if you haven't
stated it in your job application. I’m applying for jobs in civil service at
the moment - partly because they're keen to employ people (with
disabilities). In terms of university, attitudes are changing a lot but I
think there's still staff, individual people who can be difficult. I think
people don't realise, when you ask for something when you need it,
you shouldn't have to - some people think you’re getting an
advantage by asking for things - they don’t realise it's because you
really need it - you don’t want to think you got it unfairly.”




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CASE 2: MOLLY

Molly is 46 years old. She and her partner are buying a house with a
mortgage. Molly has a part-time permanent job in education. Molly is
registered blind, and while she has some vision she cannot read
ordinary print. The onset of her visual impairment was only two years
earlier and she worries about it much of the time.

“Access to work has been brilliant. Without them I couldn't carry on
working at all. They came and assessed my work situation, provided
magnifier at work.”



CASE 3: TOM

Tom is 59 years old. He lives with his partner and grandson. They
are buying their house with a mortgage. Tom is registered blind and
while he has some vision he finds reading any kind of print very
difficult. The onset of his visual impairment was in childhood. Tom is
looking after family at home.

“The only thing that annoyed me when I got early retirement and
couldn’t get another job was having to tell people you're blind.
Annoyed me to think that I had been at work since school as people
gave you the opportunity, but eight years or so ago they didn't want to
give you the opportunity. Just because you can’t see, you can still do
things by feel. I would have liked to carry on working but didn’t get
the opportunity. This did annoy me a bit, but you can’t let it get you
down. When I was at Blogg’s, there was another old boy there who
couldn’t see and our boss said we was the best two people there. It’s
being given the opportunity. I’m older now and wouldn't have time for
it now. The last few years at work, the politics, people changed -
people used to show you how to do things, but in the last few years
didn’t as they were frightened to show you too much in case they got
rid of them and kept you - due to loads of redundancies over the
years. I was one of the last people in there.”




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Disability, Health and Hearing

Many of the sample (particularly those 50+ years old) described
themselves as having long-term health problems or disabilities (other
than their visual impairment) giving a population estimate of 70%.
This very high figure is reflected (though not exclusively) in many age
related health conditions being reported. For example, heart
problems and arthritis were most commonly reported. Diabetes, high
blood pressure and general skeletal system health problems or
disabilities were also commonly reported.

Similarly, 27% of the sample (particularly those over 65 years of age)
describe themselves as having difficulty hearing giving a population
estimate of 43%. Nearly a half of these people had a hearing aid and
about a third felt their hearing had deteriorated over the previous
year.

Nevertheless, our participants were also asked about the make-up of
their household. In 12.5% of cases in the sample (an estimated 10%
of the population), visually impaired people live with other people they
describe as sick, disabled or elderly. In approximately three-quarters
of the cases, the visually impaired person provides all or some of the
support given to this person, who in most cases will be their spouse.

Travel

We asked participants how often they go outside their home, and
various other questions about travel and transport. Based upon
these responses, we make the following population estimates for the
registered visually impaired population:

-   81% leave their home every day or several times a week; 19%
    once a week or less (how often people go out decreases with
    age)
-   56% make use of private cars in their journeys
-   43% would leave their home more if they were able to.

Those who wanted to leave their home more often were asked what
would help them get out more, and what stops them getting out more.

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32% of those asked described their visual impairment as a barrier to
leaving the home. This figure was consistent across all ages.
However, other ‘individual’ explanations of barriers to leaving the
home were more common amongst older people – ‘lack of mobility’
being higher for those 50+ years of age, and highest amongst 75+
year olds (this age group also more often referred to ‘poor general
health and other disabilities’ as a barrier). In terms of social
explanations, younger age groups (under 50 years) were far more
likely to identify general issues related to public transport as a barrier
to leaving the home compared to older age groups (in particular those
over 75 years).

CASE 4: EVE

Eve is 81 years old. Eve lives with her husband in a house which
they own outright. Her husband is unwell and Eve provides some of
the support. Eve is registered as partially sighted. While she can
read newspaper headlines she struggles with normal print.

“I'm stuck with it [visual impairment] and so I have to get on with it.
But it does worry me. Went to shop one time and two youths stopped
me and it scared me, I thought they were going to have my bag. I
haven't been out since because I feel vulnerable. I can be short
changed sometimes in the shop but most people are nice, for
example the bank helped me by getting me a bank card where I don't
have to punch numbers in, I only ever have to sign.”




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CASE 5: CAMERON

Cameron is 22 years old. He lives on his own in a flat within a
converted house. Cameron is registered blind and while he has
some vision he finds reading any kind of print very difficult. His visual
impairment was only identified three years earlier and he worries
about it much of the time. Cameron is currently studying at college.

“Things like when you're outside - street furniture, I find that a major
problem. [Large city] pedestrian areas have put in silver bollards -
through the research I've done with VI people, people walk into them.
Stairs I find a big problem, changes in level especially when they're
unexpected and when they don’t have hand rails and tread markings.
Colour and contrast need to be thought about a lot more. Tactile
markings - need to be more on the ground. And signage - a big
problem - should be eye level. In places like stations it's as high as
the roof or writing too small to see it. Glass doors are also a problem
- don't see them. I won’t travel on buses as I have no idea where I
am as there's no audible alerts. That's why I use the trains - they
 announce it. Research I carried out interviews, site visits to 50
visually impaired people in [the] area. I used SPSS to analyse info
collected from questionnaires. I went out and did case studies for my
course.”



Issues Raised by Participants

As described, we asked participants a final open question. This
served two key purposes. Firstly, it gave people a chance to raise or
emphasise issues which the questionnaire may have missed.
Secondly, we are very keen to enable participants to guide the
research team as to what they judge to be important. A key aim of
the research is to return to participants to gather data on relevant
research themes. We want participant’s own opinions to be a key
driver of what these research themes should be.




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In such a short report it’s difficult to capture the diversity and richness
of the many issues our participants raised. Please also bear in mind
that this is an ongoing analysis. Nevertheless, below we list some of
the issues which were raised by many participants (each was
discussed to some extent by over 100 different participants or more).
In each case different people discussed positive and negative
experiences, barriers and enablers. There are many other themes
which, although no less important, are not discussed at this stage.

1.   Travel, transport and mobility. This includes issues relating to
     various aspects of moving around (including within the home and
     outside). There are four sub-groups of this theme relating to
     ‘mobility on foot’ (including mobility, mobility training, and
     physical obstacles), ‘public transport’, feelings of ‘independence
     and flexibility’ (both positive and negative), and references to
     ‘driving’.

2.   Independent Living Skills. This covers a range of skills
     necessary for independent living, including housework tasks,
     meal preparation, personal care and hygiene, getting around the
     home, basic DIY, and shopping. It also includes comments
     regarding a perceived lack of independence and dependence on
     others, and the need for training or ‘gadgets’ to facilitate
     participants' independence.

3.   Family issues. This includes issues relating to participants' family
     members; for example, the support provided by participants’
     families, the changing roles within the family since losing their
     sight, support for family members to help them cope and adapt
     to the loss of their loved one's sight, and support for visually
     impaired parents in caring for their children.

4.   Social and emotional issues. This includes aspects of visual
     impairment that people felt impacted upon things such as being
     able to socialise, communicate with others, understand body
     language, social conventions, being able to ask others for help,
     having self-confidence.

5.   Communication and reading. This includes issues (both positive
     and negative) relating to reading in terms of print, the use of

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     LVAs, Braille, talking books/newspapers, the management of
     mail and ability to read labels on grocery items and medication,
     and the use of technology such as mobile phones for
     communicating both verbally and via text messaging.

6.   Counselling, emotional needs and adjustment. This includes
     people’s reflections upon emotional needs and support they
     have had or would like to have had, including references to
     counselling services and emotional adjustment to eye sight loss.

7.   Leisure activities - outside of home. This relates to activities that
     participants did in the past but are now unable to for various
     reasons, activities that they are currently participating in and
     issues regarding how easy or difficult such participation is, and
     activities that participants would like to do either now or in the
     future.

8.   Employment. This covers a number of issues relating to
     employment. In some cases participants simply describe the
     work they do or would like to do, whilst others describe the
     support which helped them to attain or stay in a job, or the
     difficulty they have faced in attaining/keeping a job due to
     various barriers.

9.   Agencies and user groups. This includes issues relating to
     statutory and voluntary agencies that support visually impaired
     people, and self-help groups/organised groups for VI people.

10. Sighted people’s awareness of visual impairment. This relates to
    participants’ perceptions of the awareness of the general public
    about issues relating to visual impairment and how they can
    affect visually impaired people.

11. Attitudes of others. This includes descriptions of occasions
    where participants have encountered both positive and negative
    attitudes regarding their visual impairment and circumstances
    from other people, including family and friends, work colleagues,
    medical and other agency staff, and the general public.

VISION 2020 UK Annual Conference - Network 1000 information sheet (29-06-06) - FINAL.doc



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