Nigel Fenner's blog

Hertfordshire PASS's integrated approach to enabling disabled people to become more independent - and parochial government departments.

2011-11-27T07:07:00.001-08:00

(This blog represents the views of Nigel Fenner and not necessarily those of Hertfordshire PASS.)

This last week I was considering making an approach to a government department given they have been advertising the availability of funding. By way of preparation I asked one of our senior staff what progress he had made a number of months ago when he invited the government minister responsible for the department to visit us. He told me he had received a letter suggesting we try a different government department given it was more relevant to PASS's work.

This last week I was also writing a funding application where one question asked 'what demand and need is there for the organisation's objectives?' and I wrote the following:

"Hertfordshire PASS’skey objective or aim is to enable disabled people to be more independent. Weuse employment (through our WorkABILITY programme), and ‘being an employer of care staff’ (through our EmployerABILITY programme) as the means by whichthis is achieved. The demand for WorkABILITY grows out of theexceptionally high levels of unemployment amongst disabled people (50%)compared with the non-disabled population (20%), linked also to recent Welfareand Benefit reforms where there is increasing pressure on disabled people tosecure employment. As a result disabled people need our services all the more.

The demand for PASS’s‘being an employer of care staff’ work, we call EmployerABILITY, grows out of many disabled peoplewanting to remain in their own homes rather than being taken into LocalAuthority or private care. Given the cuts in public spending there is extra pressure ondisabled people to ‘go it alone’, but without this being adequately resourced (- as highlighted by a recent National Audit Office report ‘Oversight of userchoice and provider competition in care markets’ published 15 September 2011).

One of the benefits ofoperating the EmployerABILITY programme, which prepares disabled people to be better employers oftheir care staff, is that it makes them significantly more employable, whichlinks directly to PASS’s WorkABILITY programme. Not only is such a (unique?)‘one stop shop’ creating a demand in local disabled people, it is alsogenerating interest from a political point of view both locally and nationally.

There is also demandfor our apprenticeship programme because PASS is the only organisation in theUK providing a specialist service for young disabled people, delivered by youngdisabled people – so the National Apprenticeship Service inform us.

Lastly we feel thereis demand for what we do because it is user-driven. Where users decide on whatis to be provided, and how, and deliver it, it will, by definition meet theneeds of their peers. (PASS has published 5 books / papers on its user-driven work– available on request.)"

I had thought to write a bit more about the demand and need for our work in this funding application, but I was worried the charity we were applying for funds to, might lose sight of what PASS does, a bit like the government department that encouraged us to go elsewhere.

We believe it is one of PASS's strengths that to enable disabled people to become more independent we use programmes in employment, and 'being an employer of care staff', not just separately, but together sometimes. In addition we try very hard to be user-driven. Unfortunately such an integrated approach may well be a weakness in terms of raising the profile of our work with the relevant (and quite separate) government departments, at local and national levels. For example

employment is the responsibility of the Department of Work and Pensions, and in relation to apprenticeships the responsility of the Department of Further Education, Lifelong Learning and Skills,
'being an employer of care staff' is the responsibility of Social Services (now called Health and Social Care), and
PASS's user-driven work, the responsibility of the Department for Disability Issues.

So perhaps it is no surprise one of the above departments referred us on to one of the others when we wrote to the Minister responsible, but it is nevertheless disappointing.

I don't think we'll change the way we work though. As Ernest Becker ( - the Pulitzer Prize winner) wrote we live "in an era of hyperspecialization (where) we have lost the expectation of.....delight.....(where) thought (and insights) span several fields of knowledge".

We hope heads of government departments might come and share in our delight. We'll see.

Hertfordshire PASS's AGM and the integrity of its user-driven work

2011-10-26T12:03:00.000-07:00

(The following represents the views of Nigel Fenner, and not necessarily those ofHertfordshire PASS.)

I feel we had an excellent Annual GeneralMeeting (AGM) last Friday which included the active participation of StephenMcPartland, our local MP, and Carol Latif, the Mayoress of Stevenage.

We try hard to be a 'user-driven charity….'so most of the AGM presentations were delivered by two trustees and 7 staffregarding the work they 'drive'. As ourlocal MP remarked, in responding to all these presentations….."withHertfordshire PASS, you get what it says on the tin".

But what is 'user-driven' when you openthis tin? Is it just about disabled people employed by Hertfordshire PASSleading the organisation's projects, or is it much more than this? To answer this question, let me share two recentexperiences I've had over the last 10 days…..

Firstly one of our senior staff ( - whorecently finished his apprenticeship with PASS) was in, what we call the 'hotseat', where he was asked questions about the experience of being an apprenticeby new apprentices and staff. Here ispart of the dialogue which took place:
Question: What do you feel are the greatest differences orsimilarities for you between school and the apprenticeship you did here atPASS?
Answer: ( - which was immediate) I wasbullied at school - which made mestronger.
Response by one of the new apprentices:Stronger - you're kidding!!?
Answer: I don't regret having beenbullied…..Of course it was something I hated….it was a living hell….but I seenow that it has made me stronger…...
Question: What might Hertfordshire PASSdo through its apprenticeship programme - to make our apprentices stronger?
Answer: It's clear to me that becauseHertfordshire PASS is user-driven I have been put under different challengeswhich have had the same effect of making me stronger.
(This quote / dialogue has been used withpermission.)

The other experience relates to a comment made by one ofPASS's existing apprentices during a discussion on 'what our 'starting point' was on our journey to independence?' The staff member said 'ifI had not had so many tantrums when I was younger I would not have been sent to(name of residential home) by my mum…...which forced me to be independent…... Ifthis had not happened I don’t think I would be where I am now…..in leading onthe work I do for PASS'. (This quotehas also been used with permission.)

What I feel these comments tell meabout user-driven work is that it is not enough just to put our staff intopositions of responsibility in 'user-driving' PASS's work, as there also needs to be opportunity for all of us to explore and understand what experiences we've hadin the past, that 'drive' us now as individuals. This is about the integrity of PASS's user-driven work.

In psychology going on this personal journey is called individuation. As far as PASS is concerned we call it independent living, and refer to it in our AIM statement: To be a user-driven charity using employment and 'being an employer of care staff / PAs' to enable disabled people to live independently - which is 'what it says on the tin'.

Foolishness, disability and the UK becoming more competitive in a global market.

2011-10-16T10:05:00.000-07:00

(This blog represents the personal views of Nigel Fenner, and not those of Hertfordshire PASS.)

The current economic uncertainty here and in Europe, and what the UK might do to 'grow its economy' enough to be able to pay off its debts is a key challenge at the moment. I get a sense many people feel that a return for the UK to manufacturing (beyond our reliance on 'banking and finance') is considered key - following the trend set by Germany over the last few decades. From reading the papers and watching the news on TV, I understand we're good at high-tech manufacturing ( - like Formula 1 racing cars), and also innovation in 'bio-technology', and computing.

So what do we need to do to enhance such 'high-tech-ness' and innovation? Steve Jobs (Founder etc of Apple) talked about 'staying hungry, and staying foolish' which I heard on Radio 4's Today Programme, the day he died - on the 6th October. This might have passed me by except that later in the programme there was a feature on a new play opening at Hampton Court Palace entitled 'All the King's Fools' exploring the relationship between Henry VIII and his court jesters, or fools, whose role "was not only to entertain the king but to bring him truth, (given) the fools were thought to be conduits to the divine - able to channel the word of God to the monarch" (BBC News online). According to Dr Lipscomb (Lecturer in Early Modern History at the University of East Anglia) the "natural fools" in the king's court "might well equate to somebody with learning difficulties or learning disabilities today".

So, are there any 'natural fools' that Steve Jobs might have referred to, to exemplify what he meant? He might have mentioned Bill Gates of Microsoft who is autistic, or Albert Einstein with Aspergers Syndrome, or Alexander Graham Bell, the inventor of the telephone, who had a learning disability, as did Thomas Edison who invented the electric light bulb. In addition both Henry Ford, and Leonardo da Vinci had dyslexia.

(Look also at a blog I wrote in 2009 entitled 'Boppi's song and Darwin's survial of the fittest': http://nigelfenner.blogspot.com/2009/09/boppis-song-and-darwins-survival-of.html )

Today though in our society, it strikes me that having a disability is by definition viewed negatively, so that there is little opportunity for disabled people to develop any capacity to be 'conduits to the divine', and / or become the next generation of innovators needed at this time in the UK.

I hope though at Hertfordshire PASS we give people with a 'learning or physical challenge' ( - the term that the PASS staff who are disabled prefer to call themselves) opportunity to innovate. This comes from being user-driven so that now we have staff in place who lead on pioneering innovative solutions promoting independence for their (disabled) peers. Such innovations we can boast include an apprenticeship programme resulting in Hertfordshire PASS being one of only two charities listed in the Top 100 Apprentice Employers in the UK for 2011 by City & Guilds, and the National Apprenticeship Service. We're also pioneering the first ever (so we are told) apprenticeship in 'being an employer of personal assistant(s) / carer(s)' so enabling (disabled) people to live independently, rather than being taken into care by the local authority.

I'm not saying that what we're doing can solve the UK's current economic woes, but with economists and politicians 'scratching their heads' regarding what should be done, we do feel we have something to offer.

An update about fools from Radio 4's Today programme 'Thought for the Day' given By Clifford Longley - 31st October 2011

"Good morning

I came across a track-suited Jimmy Savile in the flesh in London in 1982, during the visit of Pope John Paul II. He was fooling around, telling people where to stand to get the best view of the Holy Father, as he called him, as the Pope went past. But Jimmy himself wasn’t stopping, as he wanted to race the Popemobile to the next papal engagement.

Jimmy Savile was a man of faith as well as a keen marathon runner, and he was awarded a knighthood by the Pope as well as by the Queen. Equally proud of both, he insisted his title and the initials KCSG, his papal honour, appear on his television credits.
Probably he thought it was all slightly ridiculous. If we wanted a category to put him in, it would have to be as a “holy fool.” This is an interesting and remarkable group of people that includes St Francis of Assisi and even John the Baptist. We encounter “holy fools” in various novels by Dostoevsky, and in the Russian Orthodox Church they even had a special name for them - the yurodivy.
The idea comes originally from St Paul when he wrote in his first letter to the Corinthians “We are fools for Christ’s sake...” and later “For the wisdom of this world is foolishness in God's sight.”
There is no room for holy fools in the wisdom of the world, which tends to take a cynical view of anyone remotely eccentric. So Jimmy Savile had to endure endless media insinuations about his private life.
That was the cross he bore. But it did not stop him becoming one of Britain’s greatest philanthropists and money raisers, who lived frugally and gave away 90 per cent of what he owned.
His gift was to see the humanity even in the most marginal sections of the community, such as the inmates of Broadmoor with which he developed a strong association. He was drawn, it is said, to anybody in a wheelchair, and he surely ought to become the patron saint of Stoke Mandeville Hospital, for whose special injuries unit he raised millions.
In the Bible it is not St Paul who best puts his finger on the holy fool phenomenon, however, but Jesus himself, when he declared “Anyone who humbles himself as this little child, will be greatest in the kingdom of heaven.”
There was something very unselfconscious about Jimmy Savile. It was not so much a pathological refusal to grow up, as an unwillingness to let go of the natural simplicity and humility of his own childhood personality - and the spontaneous pleasure of living without anxiety from one moment to the next. And foolish or not, that is close to holiness."

The health impact of employing your own personal assistant / carer

2011-10-15T09:42:00.000-07:00

Hertfordshire PASS was considering applying for a health impact award with Glaxo Smith Kline, so instigated a study on its 98 Direct Payments users who employ their own personal assistant(s) / carer(s). Whilst we decided not to apply, we feel the need to publish some important results. What follows therefore is the report we prepared - subsequently sent to all 98 users.

INTRODUCTION.
Hertfordshire PASS aims to be a user-driven charity using employment, and ‘being an employer of care staff’ (- through the use of Direct Payments) to enable disabled people to live independently.

In addition to enabling people to live independently, Hertfordshire PASS believes its work may have an impact on the health of the people it provides a service for.

As a result a questionnaire was prepared (appendix 1) and sent to the 98 Direct Payment users (ie ‘employers of care staff’) who access PASS’s Hertfordshire PASS’s Payroll and Support Service.

RESULTS.
Response rate
Of the 98 who received ‘the impact on your health of employing your carer(s)’ questionnaire, 35 were returned to PASS – a response rate of 36%. Of these, 2 questionnaires were sent back blank.

Changes to health – comparing average scores
The average score for health before employing a carer for the 33 Direct Payment users was 4.0 (on a 0 to 10 scale) - equivalent to Poor to Average health, and 6.0 after employing a carer - equivalent to Average to Good. A paired t-test shows this is not a significant difference statistically, however, many of the comments listed below demonstrate how important employing one’s own carer is for health. (We would need a bigger sample than 33 to prove 'employing your own PA / carer improved health'.)

Reasons given as to why employing a carer has an impact on health.

A respondent....

....who rated their health as good, then very good, once they employed a carer reported: “I’m more confident with help can do much more. Not so much at risk when having seizures as the carers take care of me.”

....who needed help with bathing, cleaning and shopping, who went from ‘very poor’ health to‘average’ health reported: “I can get out and about”.

....with multiple health problems went from ‘very poor’ to ‘average' reported: “there is less stress”.

....with multiple health problems went from ‘very poor’ to ‘poor’ and reported “better diet management, significantly increased independence and management of conditions and its symptoms”.

....with depression who was housebound who reported poor health before having a carer, and good health after reported “I feel in control again”.

....who because they were “always falling, so cannot go anywhere” had poor health, then very good health once they had a carer reported: (I now have a) “balanced lifestyle, enjoying activities”. (Has having a balanced lifestyle, reduced the falling?)

....who reported her health as poor because “I went without meals. Had no motivation to struggle to get dressed. Saw no one from one day to the next. Forgot my medication. Couldn’t keep my house clean. Just very very depressed”. Once employing their own care staff, their health improved to very good because “I feel looked after, depression has gone. I eat regular, healthy meals. I love going to my “day care” too and having a carer get me up and motivated for the day. Its made me very happy.”

....whose health went from average to good and included the comment: “my health has improved now as all the carers I employ look after me very well”.

....with angina etc whose health moved from poor to ‘average to good’ reported: “I feel more secure that I have someone in every day to help me.”

....slowly losing her mobility, whose health went from average to good reported: “maintained my cleanliness..” once she employed her own carer.

....reported very poor health because of a brain haemorrhage and stroke when 3 months pregnant, and very good health after employing a carer because “the help I receive has enabled me to concentrate on improving both mentally and physically…to help looking after my son. I couldn’t manage without the help I receive”.

....who reported speech problems and confusion if they go to places they don’t know, and average health, reported good health after they employed their carer whilst adding: “I now have bit more confidence in myself also my speech is getting there; still a long way to go. Still need someone with me when I go out”.

....who was “not able to get out of bed or wash or dress” went from very poor, to average health given their carer gave “help with daily tasks. Has made a great impact so less stress”.

....with multiple health issues moved from very poor, to average health because employing their own care staff meant they were “not so tired all the time, help cooking, shopping, cleaning, child care, more time to rest and pain not so bad 27/7 with ability to rest”.

....with progressive Multiple Sclerosis reported average health both before and after employing a carer however they reported “my general health is good but obviously my disability has increased so my carer is indispensible”.

....rated their health as average because “more stressful trying to keep up with everything (as well as being) quite dependent on my husband for help”. After employing a carer they reported their health as very good and “more independent and therefore stress levels have diminished both for me and my husband”.

LINKS TO THE ACADEMIC RESEARCH.
The above findings tally with the academic research, for example that reported by a Social Care Institute for Excellence report (briefing 20) entitled ‘The implementation of individual budget schemes in adult social care’ published 2007, and updated 2009 which states: “positive outcomes for satisfaction, quality of life, social integration and health have been reported by older people, physically disabled people, people with mental health problems and people with learning disabilities who use a personal assistant they have chosen” (and provides 4 references to substantiate these claims).

CONCLUSIONS - AND WHAT NEXT?
Hertfordshire PASS’s service clearly has an impact.
The findings from the questionnaires demonstrate that Hertfordshire PASS provides an invaluable service to disabled people, in enabling them to be more effective employers of their care staff which in turn clearly has a positive impact on the health of some very vulnerable people.

Offering PASS’s service to other Direct Payment users.
In Hertfordshire PASS’s experience, there has been an increasing trend for many Direct Payment users to move to cheaper payroll providers which do not provide the additional telephone support provided for 2 days every week by Hertfordshire PASS. It is therefore hoped, for the more vulnerable disabled people, that they be signposted to Hertfordshire PASS’s excellent service – which includes plans for its telephone support to be extended by early 2012 for a further 2 days / week, staffed by disabled people, for disabled people.

THANKS
Finally thank you to all Hertfordshire PASS's Direct Payment users who participated in the survey, to Sylvia Bishop for the excellent service she provides them, and to Karl Hunt and Sharon Willing who processed the data.

Nigel Fenner (Manager – Hertfordshire PASS)
13th September 2011

Appendix 1
Hertfordshire PASS
The impact on your health of employing your carer(s) - QUESTIONNAIRE.

Hertfordshire PASS ( - who manages your payroll) wants to find out what the impact of you employing your care staff has had on your health, so would be very grateful if
you would answer a few questions on this.
1. Before employing care staff or Personal Assistants my health, in
general, was….(circle one answer, please)

Very poor

Poor

Average

Good

Very Good

Can you describe what health issues you had before employing care staff?

2. Since I started employing care staff or Personal Assistants my health, in
general, has been

Very poor

Poor

Average

Good

Very Good

Can you describe what changes (if any) to your health have taken place since you
started to employ care staff?

Thank you. We will circulate the answers to the above questions to all Hertfordshire PASS’s Payroll clients in September.

Nigel Fenner (Manager Hertfordshire PASS).

Please return this questionnaire to Hertfordshire PASS using the enclosed stamped addressed envelope provided – by the end of August. Thanks.

The use of art for Co-production ( - in bringing users together with providers and commissioners on a 'level playing field')

2010-10-30T07:55:00.000-07:00

(The following represents Nigel Fenner's personal views rather than those of Hertfordshire PASS.)

As part of Hertfordshire PASS’s involvement in the planning of a User Led Organisations (ULO) Conference in Hertfordshire, it was invited to prepare and lead the Art Workshop, given its experience of running similar with young disabled people through its Job Forum.

Having delivered the workshop I wrote the following report for members of the planning group, which is reproduced her – without the photos of the artwork, and names - to protect the identity of individuals. The report summarises what took place, and finishes with some reflections relevant to the overall aim of the conference: users taking control of their services in Hertfordshire.

2. What each conference delegate was expected to do.
After lunch the 100 or so delegates were split into groups of 10 made up of a random mixture of ‘users’, carers, providers, commissioners etc. Each group of 10 worked at a table with a range of arts and crafts materials, supported by a facilitator - mostly from Adult Care Services, briefed before the conference by Nigel Fenner using a briefing sheet (Appendix 1).
The Support Co-ordinator Senior Apprentice at Hertfordshire PASS introduced the Workshop by setting the following brief:
“Everyone is asked to pick the best or worst example of a service you know of which is led by a user or users, where for example users ‘have a say in what happens’ – and then use the arts and craft materials on your table to communicate this.”

3. Nigel Fenner’s experience of facilitating his group
As soon as the group started it was noticeable how all the ‘non-users’ worked with the ‘users’ to help them follow the brief, at which point, as the facilitator, I reminded everyone that we were ALL asked to work to the brief. This resulted in the manager sitting next to me declaring that ‘this was taking her outside her comfort zone’.
After about 30 minutes, when everyone had finished their art work I asked them:
“to reflect on the art work we have all created, and using only a few words or phrases, each describe what is important in terms of ‘users taking control of their services’ in Hertfordshire”.
In response each member of the group shared their art work and said the following ‘words or phrases’ ( - the numbering below being used in this report as a link to photographs of their artwork in appendix 2 - not reproduced in this blog):
1. “We have healthy lunches which we help to choose” (said by a user – as their best example)
2. “I lost my purse when on my way to the gym” (user – worst example)
3. “This shows me (pointing to his clay model) on the recruitment panel at the Daycentre. I ask them if they are good….if they will support us very well….. I get paid for this role” (user – best example)
4. “I went to a residential centre to lead a ‘pampering session’ but the residents were all sat in front of the TV” (provider – worst example)
5. “We discuss what we do for activities and my picture shows the Holiday Inn, Michael Jackson, using a spa….” (provider – best example)
6. “Public transport….; the drivers are rude and sometimes bully disabled people” (provider – worst example)
7. “The Sunnyside Trust…..” (provider – best example)
8. “The Learning Disability Parliament in Barnet is user-led” (provider – best example)
9. “Stop and listen” (provider – best example)
10. “’Mirror, mirror….’ kept in the pocket to check whether what we’re doing is user-driven”(Statutory sector manager)
11. “We need the tools for power…..to help us” (Statutory sector manager)
12. “A disabled person saying the truth in a group discussion, when no one else had the courage to do so” (provider – best example).

As facilitator I asked what all our art work, taken as a whole, was saying in terms of ‘users taking control of their services in Hertfordshire’, and together we spread the pictures across our table, in an order which told a composite story, which went something like:
“We get sat in front of the TV (4).... get our purses stolen by bad people (2)....and the buses are inaccessible and sometimes the drivers bully us because of our disability (6)...What is needed is for people to ‘stop and listen’ (9), and ‘look’ (using the mirror) (10), and appreciate that disabled people have wise things to offer (12)...so we can use the ‘tools and power to help us’ (11)....so we can choose our own healthy lunches (1), decide where to go on our outings (5), be involved (7), be on interview panels to select staff (3) and be part of the LD Parliament (8).”

Given this was too much to feed back in the plenary, the group was asked to
“decide as a group what is the most important word or phrase that will have the most impact on ‘users taking control of their services’ in Hertfordshire.
Also agree on who in the group will share this in the Plenary session.”
The group decided on ‘Stop and Listen’ (9) as the most important phrase, with a user from the group feeding this back in the plenary session.

4. Plenary feedback from all groups( - as noted down by Nigel Fenner)
 ‘Stop and Listen to me to support me better’
 ‘Getting into my own flat; choice and control; working together is necessary’
 ‘Important to have 50 – 60% of users on the management committee to have a voice’
 ‘A Parliament; Direct Payments are important; awareness’
 ‘Working together with confidence and honesty…to include everyone’
 ‘Being heard…; support and understanding’
 ‘Change for the better’
 ‘Time; the clock….care and the clock; our picture shows a disabled person left in their hoist because the carer’s shift had ended’
 ‘There’s a lot of crap in our ‘life tunnel’, but once we got a PA our lives got brighter’
 ‘Power, listening, trust, obstacles….; users need to be listened to and empowered…’
(The written notes taken and recorded by each facilitator on their briefing sheet are listed as Appendix 3.)

5. Post conference reflections – to the Art Workshop, and the conference in general
5.1 Feedback from the facilitators
Nigel Fenner wrote to all the facilitators asking them for their post conference reflections and received 2 responses, one from an Adult Care Services (ACS) Manager, and the other from a Senior Apprentice at Hertfordshire PASS. The questions asked and their full replies may be found as Appendix 4 – reproduced with permission.
One suspects that their reflections represent the two extremes of views held by participants on the Workshop: The Apprentice reading much more into the art (ie assisted suicide) than the ACS Manager and her group who found the ‘brief confusing’.
Nevertheless the ACS Manager’s group produced an excellent piece of art on ‘time and time for change’ – see below.

5.2 Nigel Fenner’s reflections.
In planning the Art Workshop, facilitating a group, reviewing all the art work in depth with another Hertfordshire PASS Senior Apprentice, and getting feedback from facilitators (see above), the following personal reflections are made by Nigel Fenner:

a. The art workshop produced some important and creative insights
 The use of TV in residential or day care settings as the worst example of a user-led service (picture 4 in appendix 2). In another group someone had drawn a TV and next to it written ‘free from TV’.
 How the use of long words by professionals exclude many users. For example one picture included the words: ‘When the ULO do there workshop the peop who read the ULOs they make to many long words’. In addition a member of the planning group (for the ULO conference - presumably) also reported in their ‘art workshop group’, they found it difficult to take part.
 Some images told some sad stories:
- someone in a wheelchair being struck by lightning and being told ‘you can’t do that’…and falling into a shark infested sea
- a mass of wool stuck on the page and ‘aarghhhhh!’, and ‘tied up in knots!! cannot escape’ written beside it, also with a list of these words: ‘confusing, frustrating, emotional, upsetting, angry, bitter, restricting’, and
- a life size piece of ‘crap’ coming out of one end of the ‘life tunnel’ piece of art work created by one group.
 The importance of time as portrayed by one group, given their only art work was a very large sheet covered in clock faces, surrounding the central image of a disabled person suspended in a hoist above their bed and left by their carer, who had ‘clocked off’ ( - already referred to above).
This links to the discussions we regularly have at Hertfordshire PASS about the use and management of time given we believe ‘time is one thing that disabled people can begin to manage, compared with many other aspects of life’.
 The mirror (10 in Appendix 2) which because of its association with the Fairy Tale ‘Snow White’ (whether meant or not) raises all sorts of questions such as ‘who is the fairest of them all?’.....in terms of ‘Users taking control of their services in Hertfordshire.’

b. The ULO conference felt like ‘co-production in action’
Given the conference gave significant space and opportunity for users to
 lead ( - through AB introducing the conference),
 share ( - through the 4 stories delivered at the start of the conference by a range of different users regarding a range of different interpretations of what user-led means in practice), and
 work together ‘on a level playing field’ with commissioners and providers ( - through the art workshop) – see c below,
that the ULO conference felt like ‘co-production’ in action.

c. The importance of meeting users in a place they find ‘comfortable’...and that they understand.
Once during the conference and then immediately afterwards I was told separately by 2 senior managers ‘the art work session took me right outside my comfort zone’ which led to us discussing how important it is for commissioners and providers to perhaps experience such discomfort, if co-production is to work. This is set in the context of the discomfort that users probably experience when they attend our meetings and conferences – as communicated through a number of pieces of art.
Getting it right is not easy though, as the experience with the conference evaluation form demonstrated. Whilst the form was very ‘easy-read’ no one on our table filled it out because it was not possible to relate the symbols to the sessions in the conference.

d. ‘User-led’ operates at both individual and corporate levels
It may be stating the obvious but the art workshop and conference in general enabled me to better understand that ‘user-led-ness’ is as much about developing individual authority in users (in choosing menus, or activities, or whether to watch TV, or managing their own time), as in creating User Led Organisations (ULOs) – and that these are not mutually exclusive.
Therefore the challenge involves knowing how and when to move users who, having developed such individual authority, are ready and willing to develop a more ‘corporate authority’ in enhancing the ULO they are part of, or if necessary, creating a new one.
From answers to one of the ‘quiz-dom’ questions ( - the session which followed the Art Workshop), it would appear as though a significant number of disabled people are willing – see below.

e. A significant number of users want to develop their capacity to lead
I was astonished that 38 users expressed a wish to get involved in developing their leadership, with only 14 saying no in response to the ‘quiz-dom’ question. This was a question posed by KF (Hertfordshire PASS) who has attended the Leading Ability course run by the Essex Coalition of Disabled People as commissioned by the Department of Health earlier in 2010.

f. Disabled people’s stories are so important
I was very impressed with Mrs B’s story about her experience of Direct Payments, so much so that I asked her if we might publish it on Hertfordshire PASS’s website – to be featured on Hertfordshire PASS’s new ‘PASS experience’ page.

Appendix 1
User-led Organisation (ULO) Conference
16th September 2010
Art Workshop – FACILITATOR’s briefing sheet

Facilitator’s name: …………………………………………………………………………………………………………………

Thank you for agreeing to facilitate this Art Workshop session. There is no right or wrong way of facilitating the session however all facilitators need to account for
 the BRIEF given to each group,
 the OUTPUT we expect from each group,
 how the session will link to the PLENARY session, and
 that we have to finish the session by 3pm.
The BRIEF for each group
Each table of 10 or so people have the following brief to work to:
“Everyone is asked to pick the best or worst example of a service you know of which is led by a user or users, where for example users ‘have a say in what happens’ – and then use the arts and craft materials on your table to communicate this.”
The OUTPUT we want from each group
Towards the end of the session please ensure there is time to get your group “to reflect on the art work we have all created, and using only a few words or phrases, each describe what is important in terms of ‘users taking control of their services’ in Hertfordshire”.
Please list these words or phrases below ( - continue over page, if needed):

The link with the PLENARY session
Once everyone has shared their ‘words and phrases’ decide as a group what is the most important word or phrase that will have the most impact on ‘users taking control of their services’ in Hertfordshire.
Also agree on who in the group will share this in the Plenary session.
It should now be 3pm.
What to do with your group’s art work – by the end of the day
Please deliver this ‘filled out’ sheet and your art work to the Hertfordshire PASS stall. If you can, it would be very helpful to note on the back of each piece of art whether it was created by a user, provider, commissioner, or ‘other’, as well as describing what the creation represents.
Thank you.
Hertfordshire PASS
15 September 2010

Appendix 2
Pictures - not reproduced here.

Appendix 3.
The feedback from each group as written up by the facilitators

SS’s group
1. Empowerment. Enlightened; changing belief in our capabilities; enhance our lives; finding what suits you best; incentive to go out; raising awareness, passion, LOCAL
2. Democratic. Best interest heard; restoration of your self esteem
3. Awareness

CB’s group
Meaningful inclusion; choice; move forward; together
(Facilitator not identified)
Bad: confusing, tied up knots, bitter, angry, frustrating, emotional, professionals using long words and not explaining them.
Good: Path of meeting different people and organisations; different places; good to be involved and help each other; smiling; meeting people.
Confused about long words
Larger font size – use organisations which are expert at making easy read and pay for it!
Really hard for people for LD to take part
Difficult to be part of the planning group.
Working together with confidence and honesty to have a strong voice and to include everyone. Being honest; kiss; making it easier to understand; going forward together; working together with people; good support; be included; building confidence; good support

CS’s group
Hard work; more choice; listened to; organisations that are user lead have more power; if you don’t trust your committee you won’t get anywhere; only someone who has experienced it can really understand; obstacles can get in the way of people; it is good to listen.
5 pieces of art: power, listening, trust, experience, obstacles.
Users need to be listened to, they need support and funding to be empowered.

HDT’s group
Finding out things you never knew you could do
Opportunity – confidence building
Support
Social friendships
People come up with ideas themselves
Responsibility
Knowledge – sharing – parts make a whole
Opportunities
Being heard + support + understanding.

Appendix 4
Facilitators reflections on the Art Workshop.

Email to all facilitators
Subject: Reflections on the Art Workshop at the ULO conference
To all facilitators
Thank you for facilitating the Art Workshop at the recent ULO conference.
I am writing a report and have used the ‘words and phrases’ you recorded on your briefing sheet as well as had a long look at all the art work – with AB.
I was hoping to have a section in the report on the facilitators reflections after the conference so can you please answer the following questions?
1. When you look back at the Art Workshop what ‘piece of art’ comes to mind first? Can you describe the piece…..?
2. Can you say what you feel the link might between this ‘piece of art’ and the aim of the ULO conference: ‘users taking control of their services in Hertfordshire’?
3. Any other reflections…?
4. Finally can you indicate whether I can use your answers to the above questions + what you wrote on the facilitators sheet, with your name, or without your name, or not at all?
Thanks.

Response 1 – used with permission
I think the piece that really stood out for me was Andrew’s tunnel of life that he and his table made as it symbolized the way how disabled people see life and I have heard these stories about disabled people wanting to end their life and I am on a campaign list to stop assisted suicide happening so the tunnel of life reminded me of the campaign.
I think the link with this piece of art reflects how disabled people are with their carers and the services that they get from having personal assistance with day to day tasks and the services that they provide to get personal assistants to help them.

Response 2a - used with permission
Hi Nigel
Answers to your questions:
1. None
2. I don't believe there was a link - my group struggled with the concept - they thought the brief was confusing (And was a topic of conversation for some time) and could not relate this to how they could control services in Herts.
3. Although a bit of fun (my view only) - it is hard to ask people to conceptualise in art what are often no more than feelings..e.g. frustration etc
I am not sure the brief was appropriate - reading the questions here I can relate them to the exercise - but this was not apparent on the day.
4. These answers are taken from the day itself - from the comments made to me during this exercise (Apart from q 3)
I hope this is helpful

Nigel Fenner’s response
All feedback is helpful – however be useful to know in what way the brief was confusing…..?
Did your table produce the large picture focusing on ‘time’? If so I’m really pleased, because the management of time is one area of disabled people’s lives that they can start to manage, as a start to growing to independence…. We often discuss the management of time in meetings at PASS….
I want to use your answers in your email in my report. As I asked in my email, can I quote you? Thanks

Response 2b – used with permission
yes it was the piece about time or time for change
The briefing as we understood it was to relate to a poor experience that was user led? We produced the piece we did to reflect 'time for change' - being about an experience that wasn't necessarily user led but the remendy to the problem was user-led -
The group felt they could only talk about poor experiences - we were then able to talk about what happenned and what the remedy was - in each case the remedy was SU/Carer taking control..which for me did answer the question (Which was why we created what we did) but the group felt it didn't though they were pleased with the outcome (I hope this makes sense)..which was the dilemma or confusion
I have no problem with you using the comments and the comments here which are entirely factual - in terms of that's exactly what was said on the day..
I hope this all makes sense nigel

Social Impact Bonds and disability

2010-09-19T11:30:00.000-07:00

(The following represents Nigel Fenner's personal views, rather than those of Hertfordshire PASS.)

There has been quite a lot of media coverage recently on social finance or social impact bonds:
"A Social Impact Bond is a contract with the public sector in which it commits to pay for improved social outcomes. On the back of this contract, investment is raised from socially-motivated investors. This investment is used to pay for a range of interventions to improve the social outcomes. The financial returns investors receive are dependent on the degree to which outcomes improve. By enabling non-government investment to be raised, Social Impact Bonds should lead to greater spending on services that prevent costly health and social problems.
Take, for example, re-offending by released prisoners, which costs government millions of pounds a year. A Social Impact Bond could be used to raise money to pay for the expansion and coordination of services to reduce re-offending.
The more effective these services are at achieving the target outcome, the higher the blended (social and financial) return investors would receive."
'Towards a new social economy'. Published by Social Finance Ltd. March 2010.

Because I believe disability might benefit from such investment I today emailed the MP responsible for leading a review on this with 4 questions:

1. Have you considered user-driven projects?
I currently manage Hertfordshire PASS, a charity which starts with the premise that the best people to solve the problem of unemployment amongst disabled people, are disabled people themselves. For example our WorkABILITY project is currently managed by 6 young disabled people employed as apprentices, providing work experience, apprenticeship and employment opportunities for their peers. We’ve not only written 2 books on the users experiences, but also 3 academic papers on the ‘user-driven’ methods we employ. Whilst I have spent the last 5 years in ‘disability’, I learnt the theory and practice of user-driven methods over 6 years with the Grubb Institute of Behavioural Studies where we developed a user-driven approach to relationships education in 7 Young Offender Institutions. From my experience these methods developed with young offenders apply equally well with disabled people......

2. Have you considered social enterprise?
Given many social challenges lend themselves to enterprising solutions we have published a major paper entitled ‘User-driven Social Enterprise’ – go to http://www.hertspass.com/2010/08/user-driven-social-enterprise/#more-356

3. Have you considered ‘disability’?
I understand the brief to your report focuses on crime, when I believe there is as much potential for social impact in disability, given the significant dependence on State Benefits for this group. Are we not ripe for investors to invest in our WorkABILITY project and secure a return for each of the young disabled people we get off benefits into employment? At the moment this stands at 2 of the 6 apprentices we employ.

The potential for saving the government money and generating a return for an investor is not just restricted to moving disabled people from benefits into employment. For example the whole Personalisation agenda endeavours to move disabled people from state provided care to care determined and managed by the individual, usually in their own homes. There are considered to be over 100,000 disabled people on Direct Payments in the UK; some evaluation studies claim Direct Payments (or personal budgets or self-directed support) are cost effective, other studies are not so convinced. "However, with government funding for councils expected to contract from 2011 onwards and the numbers of older and disabled people requiring care set to go on increasing, social care leaders will hope that self-directed support can definitely deliver more for less." Jeremy Dunning 12th Feb 2010. 'Are personal budgets more cost effective? Community Care.

4. Have you considered the ‘disabled £’ or ‘purple £’?
One advantage ‘disability’ has over ‘crime’ in terms of being an attractive investment for would-be investors is that the ‘disabled £’ or ‘purple £’ is worth £85billion / year. So, not only will an investor make a profit out of a programme which moves disabled people off benefits, but also increase the likelihood of selling their products / services to the 20% (and increasing) of the UK population who are disabled. Again we’ve written a paper on this area entitled ‘The relationship between disabled people and the commercial sector – moving on from ‘fight and flight’ to access the purple £’. This paper was presented at the Social Enterprise Research Conference in 2008 (Go to: http://www.lsbu.ac.uk/bus-cgcm/conferences/serc/2008/papers.shtml - and scroll down on the first page to the paper presented at 15:15.)

Whether I get a reply from the Minister or not I still see 'Social Impact Bonds' as being important for the sustainability of the work we (and many other innovative charities) do, given the current economic climate.

Users, and 'wounded healers' - and user-led organisations.

2010-01-20T18:00:00.000-08:00

(The following represents Nigel Fenner's personal views, rather than those of Hertfordshire PASS.)

I went to an event recently with two of my staff and Chairman of Trustees, all of whom are disabled, to consider whether Hertfordshire might establish a User-Led-Organisation (ULO) network in support of disabled people, so following the example of some other counties. The meeting was set up and run by the County Council, and included a presentation by the Director of the National Council on Independent Living.

I'm not sure exactly who attended but from what was said in the welcome there were 5 commissioners from Social Services amongst an audience of about 30. As far as how well represented organisations who consider themselves to be user-led were, I can only share a conversation I had at the start of the meeting with one of my staff, who said "there aren't many users at this event" which during our chat about this, prompted me to ask the question "am I a user?", eliciting the answer (to my surprise) of "yes".

This begs the question 'who are the users in relation to user-led organisations?'.

There is no doubt in my mind the member of my staff who is disabled ticks all the boxes for a ULO, not only as a 'user', but now also as a 'leader' providing a professional service to other disabled people.

But what about the commissioners, and me? Are we 'users'?

In a roundabout way this was asked of me recently by a researcher from NIACE (National Institute of Adult Continuing Education) who visited us wanting to explore my management of a user-driven project (amongst many other issues), and I answered in terms of the aim or purpose of WorkABILITY, which I could identify with in terms of my own personal experience. The aim (originally agreed by users) is 'people with a learning or physical challenge overcoming barriers to work', and because I have experienced barriers to work over my working life, which have, and continue to challenge me, that I can work to this purpose statement from personal experience. I also pointed him in the direction of one of my blogs ('The framework that informs managing user-driven work' dated 18th September 2009), as well as an article I'd written in the first book published by WorkABILITY early in 2008. This article was in the 'My learning or physical challenge' chapter, where all contributing authors, disabled or not, were invited to write a piece. In mine I wrote:

"I have learning and physical challenges but in order to 'get on' in the world of work I have learnt to manage them so they are presented to employers and work colleagues either in a positive light, or not all. Since becoming involved with WorkABILITY and its aim......it is no surprise I have had opportunity to reflect on my own, and others challenges. From my experience with WorkABILITY, I don't believe some people have learning or physical challenges, and others haven't - as if certain types of people are better at driving WorkABILITY forwards than others. Given the opportunity, everyone has contributed their skills, insights, wisdom, perceptiveness, passion, honesty and understanding. Sometimes this has been because of our learning or physical challenges, and sometimes not; whatever, it has not mattered - as far as driving WorkABILITY forward is concerned."

Not only do I still stand by this (2 years after I wrote it) but I can also claim to "have learnt much from the disabled people I have worked with" ( - see my 4th October 09 blog: 'Boppi's song and Darwin's survival of the fittest' and 19th Aug 09 blog: 'Giants and foxes that 'eat you up' - and the world of work').

But does this make me a user? I'm not sure, but what might help in answering this question is to try to uncover where my identification with, and appreciation of disabled people comes from. I think it all surfaced when I attended a L'Arche conference about 15 years ago. I was working for the YMCA at the time and setting up a mentoring / befriending scheme with disabled people ( - which was my first professional involvement with disabled people), so L'Arche, which has over 130 communities across the world where people with learning disabilities and their assistants live and work together, felt a good place to start.

At the conference we were all attending a communion service, which was no surprise given L'Arche and the YMCA are both Christian organisations. I was in a circle made up of disabled people and their assistants where we took it in turns to wash each others feet. At the time I could not understand why it had such a penetrating and unsettling effect on me but many months later I realized that having my feet washed by a severely disabled person was not what made me want to leave the conference, instead it had exposed the previously hidden 'disabled' person inside me I wanted to run away from.

I felt this was an embarrassing revelation that needed to be kept private, however what helped in the process of coming to terms with this, was reading Henri Nouwen's bestselling book 'The Wounded Healer' ( - which interestingly he wrote having had 7 years in a L'Arche community). Nouwen was convinced that

"for the minister ( - perhaps all of us in the caring professions?) is called to recognize the sufferings of his time in his own heart and make that recognition the starting point of his service. Whether he tries to enter into a dislocated world, relate to a convulsive generation, or speak to a dying man, his service will not be perceived as authentic unless it comes from a heart wounded by the suffering about which he speaks".

It's important to say here that the 'wounded healer' is much more widespread than you might think, being found in mythology, alchemy, eastern religion (ie the 'rainmaker'), shamanistic healing, psychoanalysis as first identified by Carl Jung, and in the caring professions where it is understood to be "a normal response to care giving...a normal human response" (Irene Ens, 2004. 'The lived experience of countertransference in psychiatric / mental health nurses.')

So what is the 'wounded healer'; where does it come from? Carl Jung believed it grows out of the countertransference or usually hidden impact the 'patient' has on the 'doctor'. The best practical definition I've found which explains not only my reaction at the L'Arche conference but also why I've worked for over 20 years in the caring professions, is from Richard Tillett (2003). He said "our urge to care for others is to some extent driven by our hidden identification with the patient role, based on projection of our own unmet emotional needs. We have an internal relationship with our own personal vulnerability ( - to be ill, frail, helpless, afraid etc) and our external professional behaviour is driven partly by this". (Tillett's article is called 'the patient within - psychopathology in the helping profession'.)

And maybe because I have faced this, and endeavored to understand how it informs my work, and that somehow this is demonstrated to those around me, that my staff member said at the ULO event that he believed me to be a user.....?

But what about the commissioners? A recent development that endeavours to bring commissioners (and providers of caring services) closer to users is that of

"co-production which rejects the traditional understanding of service users as dependents of public services, and instead redefines the service:user (or government:citizen) relationship as one of co-dependency and collaboration. Just like users need the support from public services, so service providers need the insights and expertise of its users in order to make the right decisions and build effective services" (People and Participation website).

This is good news but can, or will commissioners and service providers including myself, work on our own frailties, as 'wounded healers' for true co-dependency? This is an enormous challenge because "it is easier to live through someone else than to become complete yourself" (Betty Friedan (1963), The Feminine Mystique).

However if we 'live through someone else' are we not users of them......?

A user-led approach to appointing staff

2009-12-18T01:49:00.000-08:00

(The following represents Nigel Fenner's personal views, rather than those of Hertfordshire PASS.)

Thanks to funding from the Big Lottery Fund we were able yesterday to interview and appoint 3 apprentices ( - to join 3 'senior' apprentices already in post). This staff team of 6 will manage WorkABILITY, an 'employment preparation' project driven by, and for other disabled young people.

We believe we have made 3 excellent appointments and I feel this was mostly due to the process being largely user-driven.

For example in the letters we sent to those shortlisted for interview we wrote

"Because WorkABILITY tries very hard to be user-driven we want you to think
of 2 questions you expect to be asked in your interview. Please write these
questions on a piece of paper with your name on them and hand (them to us on the
day). We will ask one of your questions of you, and all the other
candidates."

This had all sorts of benefits. Firstly it communicated how strongly committed we are to being user-driven. Secondly it gave the shortlisted candidates opportunity to think about the type of questions they might be asked and at the very least, opportunity to plan answers to their own question, and thirdly it threw up some excellent questions we had not thought of ourselves.

As you can see ALL the questions handed to us were excellent:

Describe what ideas you have to bring to WorkABILITY?
Why should we employ you?
Have you ever had an opportunity to work regularly with young people?
Do you find it difficult to talk to people who you do not know?
What difficulties have you had to overcome because of your special needs?
What kind of person are you?
What I feel is most important in working as part of a team?
How would I handle someone coming in asking for help?

These questions, and some others we had prepared ( - linked to the reqirements in the Person Specification - see below) were ALL asked by the 3 Senior Apprentices who themselves are all disabled. These Senior Apprentices, the chair of Hertfordshire PASS who is a wheelchair user, and I made up the Selection Panel.

A further example of the selection process being more 'user-led' than normal was in preparing the person specification ie the list of characteristics (such as knowledge, skills, attitudes, and experiences) we wanted in applicants. Had we been advertising apprenticeships in plumbing or car mechanics, the person specification would largely have writen itself, however because an apprenticeship in employment preparation is considered unique, we had to start from scratch. In addition we did not want to go down the road of stipulating 'the usual criteria' such as qualifications or experience, given disabled young people, often through no fault of their own, have not had the same opportunities to acquire these as other young people.

We therefore started by focussing on the aim of WorkABILITY - as determined originally by its users: 'young people with a learning or physical challenge overcoming barriers to work'. Clearly therefore we wanted applicants for the apprenticeship vacancies to have had experience of attempting to overcome such barriers.

Under attitudes we wanted "applicants who are very strongly committed to use this apprenticeship to progress into full time or more permanent employment ( - with WorkABILITY or with another employer)". We considered this important because we found some talented disabled young people who attended our most recent Summer Job Forum lacking in drive and aspiration to progress into employment. What we wanted therefore were people aspiring to develop rather than to survive ( - a point made by David Armstrong on page 153 of Group Relations, Management and Organization).

We also wanted applicants "to drive WorkABILITY forward as a user-driven project working together as a team......(and who) want to work with other disabled young people to enable (or mentor) them to access work experience opportunities and possible employment".

What we did expect in terms of skills was that applicants could read and write (and that if they did need some help, what this amounted to) and that they could use a computer and possibly some other office based equipment (such as a telephone or photocopier). We also wanted to be reassured they could work 22.5 hours each week (2 days work, and 1 day training).

We asked applicants to demonstrate in their application form they had the above listed experience, attitudes and skills, however we did appreciate an applicant might need some help in doing this. However because of our commitment to being user-driven we asked the following question at the end of the application form:

"The help you might have received: We appreciate you may have needed some
help in understanding the information we have sent you about WorkABILITY and
the apprenticeships, however because we try hard to be user-driven please let us
know what you did yourself in submitting this application, and what help you
received?"

The answers to this question helped us to understand who was the 'driving force' ( - such as the applicant themselves, their mum, or a support worker etc) in the application process which we were later able to check out at interview.

Obviously time will tell whether we made the right appointments, but in using a selection process which we believe was user-led, we are optimistic. Not only was the process extremely satisfying, but throughly professional too.

Boppi's song and Darwin's survival of the fittest

2009-10-04T22:00:00.000-07:00

(The following represents Nigel Fenner's personal views, rather than those of Hertfordshire PASS.)

I visited the 'Endless Forms' exhibition at the Fitzwilliam Museum in Cambridge recently. It explored the impact of Charles Darwin's theories on the artists of the nineteenth century - and it was excellent, and it made me think what 'survival of the fittest' might mean today.

Over millions of years before Darwin, survival of the fittest was achieved by the physically strong combatting disease, the cold, predators and hunger. Those who did it best of all, survived, with the physically weak dying off. However, since Darwin, advances in technology, medicine, science and other areas of our lives, means physical prowess is not now as critical as it was. So what is?

Quite independent from visiting the Darwin exhibition I recently finished reading 'Peter Camenzind', a book written in 1904 by Hermann Hesse ( - who later won the Nobel Prize for Literature). It tells the story of a young man 'trying to discover the nature of his creative talent' through his deep love of nature, the girls he meets (mostly unsuccessfully), his studies at university, writings and travels, his melancholy, and at the end of the book, his relationship with Boppi "a grotesque, deformed figure...a wretched, half crippled hunchback". Things change though when Peter hears Boppi sing resulting in them spending much time together; "if ever I should complete and publish the work that I had begun so long ago , it should contain little of value that I had not learned from Boppi."

In the same way there is much I am learning from the disabled people I work with, and the 'song' they are singing ( - see my 19th August 2009 blog: 'Giants and foxes that 'eat you up' - and the world of work'). This song has been heard too by Steve Lopez, a reporter with the Los Angeles Times who 'discovered' Nathaniel Ayers, a homeless African American man playing the violin exquisitely on the streets of downtown Los Angeles - now made into the film, the Soloist, which I saw last night at the cinema. Lopez says "he (Ayers) knows what life is about. He knows why he exists, and he has found his passion. Most people I know never find their purpose. It means he lives more in a spiritual than a material world".

But not every 'song' is channelled appropriately. For example there is the sad story of Gary McKinnon, a 43 year old who has Asperger's Syndrome, who having hacked into the US military and NASA computers faces up to 70 years in prison if convicted. But he must be hugely talented to have done this....

I'm not sure where this 'song' will take us in our evolution over the next million years, but I feel very strongly it will have much more of an impact than our physical prowess.

The framework that informs managing user-driven work

2009-09-18T02:51:00.000-07:00

(The following represents Nigel Fenner's personal views, rather than those of Hertfordshire PASS.)

I am Manager of Hertfordshire PASS 'a user-driven charity using employment to enable disabled people to live independently'. In fulfilling this aim we run WorkABILITY, an employment preparation programme run by, and for disabled young people.

Such user-driven work is not just a simple matter of allowing disabled young people to get on with it alone, as there needs to be some sort of framework within which such work can take place. (This is not peculiar to disabled young people as it applies to all young people growing up).
To appreciate the framework we use, it is necessary to understand the implicit outcome in user-driven work. We want disabled young people to move from being 'just a disabled young person' (often imposed on them by others) to taking up a wide range of 'driving' roles such as facilitator, writer, mentor, planner, strategist, or manager. In the context of WorkABILITY such roles are currently being taken by our 3 apprentices, as they plan and deliver employment preparation for their peers.

Clearly 'role' is important, but it begs the question 'where does a role come from?' In our view a role is always linked to achieving the aim of the project, or meeting, or organisation. Therefore being explicit about the aim enables the participants in the meeting or project to take up an appropriate role to achieve that aim. However, many meetings and projects have implicit aims ( - or none at all) and / or are driven by strong and charismatic individuals, resulting in a vagueness of role. Therefore being clear about the aim of the project, meeting or organisation is vital. (See my 'Being clear about purpose' blog dated 29/7/09.)

In turn this begs the next question 'where does the aim of the project, or meeting, or organisation come from?' There is a danger the aim often emanates from the strong and powerful - and their ideas, thoughts, hunches, opinions or beliefs. Alternatively the aim can grow out of a sharing of relevant lived experiences, which when weaved together reflect the shared story of those involved and what they want to do together. (See my 'Everyday experience at work: vital to disabled young people exploring the world of work' blog dated 30/6/09.)

So in summary, in our user-driven work we focus on three main areas:

the person and their lived experience
defining the system (ie meeting, project, organisation) through clarifying its aim, and
the roles we all take up in achieving this aim.

So when people ask me 'how do you manage a user-driven project?' I answer in terms of ensuring there is an aim, that it is validated by the lived experiences of users, and that roles are being taken up to achieve the aim. Such a framework frees up the 'users' to take up suitable 'driving' roles such as manager, planner, innovator......

(I am grateful to the Grubb Institute of Behavioural Studies who I worked with for 6 years, for introducing me to this 'Person-System-Role' framework and giving me opportunity to hone my skills and understanding with young people in schools, and young offenders in 7 prisons.)

Giants and foxes that 'eat you up' - and the world of work.

2009-08-19T07:18:00.000-07:00

(The following represents Nigel Fenner's personal views, rather than those of Hertfordshire PASS.)

We've been running a Job Forum over the summer holidays for young disabled people to explore the barriers to work they face and how these might be overcome. Given it's been holidays we've tried to make the sessions fun, including having a 'media' theme throughout. I want to share experiences we had at two of the sessions.

At one session Mat Fraser joined us; Mat is a well known actor, musician, writer and performance artist. Following the usual dialogue we have at every Job Forum session for visitors, where Mat was asked to share his work story in response to questions from the young disabled people present, we asked what we might focus on for the role play planned for the afternoon. The question I posed to the group 'might we focus on a 'barrier to work' that Mat experienced and shared with us, or might we focus on something else?' appeared straightforward but the answer 'let's do Jack and the Beanstalk', less so, but because we try very hard to be user-driven, we went for it.

What unfolded was a remarkable unplanned piece of Forum Theatre ( - which Mat introduced us to, and led). First we retold the story of Jack and the Beanstalk and explored what modern day metaphors the characters and key props represented in terms of young disabled people searching for work. For example the beans represented qualifications, the beanstalk represented the ladder Jack needed to climb to get a job, the giant - a difficult manager interviewing Jack for a job, Jack's mum - the 'parent trap', the gold - a job, and so on. We then wrote a basic script and those present put themselves forward to act the parts. Mat directed, including periodically stopping the 'action' to ask the audience what might Jack do or say in relation to the predicament he was in, in keeping with the methods of Forum Theatre.

There were many fantastic performances, and excellent insights, however there is only one insight I want to focus on here. Early on in our unpacking of the story of Jack and the Beanstalk, the young person who originally made the suggestion to use this story, wanted reassurance that there would be no real giants in our production because they really frightened him, and that our focus was to be on work only. In the context of what we were doing this was key, because I was getting somewhat concerned how, in entering the world of fantasy, we were also going to keep our 'feet on the ground'. I think we succeeded and there was much learning by all.

At our next session, a week later, we planned to use art to communicate the barriers to work we all face and how these are overcome. We had a large lump of clay, watercolours, coloured and patterned tissue paper, wax crayons, old magazines to cut up etc, and after a couple of hours gave opportunity for everybody (staff included) to each describe their creation.

At the time one piece of art grabbed my attention above all the others; it was of a gingerbread man made out of clay, with its creator being unsure why he had made it. So there and then, as a group, we retold the story, and were amazed that it mirrored the struggle many of the young people, in fact most of us, have in becoming independent from our mums and dads. We then talked about what happened to the gingerbread man, having left his mum and dad, and realised he was eaten by the fox. This begged the question 'what does the fox represent in our efforts to get a job?', and it became apparent that for some, the fox represents the job that 'eats you up'. Given the nervousness and lack of confidence of the creator of the gingerbread man, this was no surprise.

At this same session I made a clay model too, however it took a number of weeks before I realised how significant it was.

I started by making a larger-than-life figure set behind an altar on which I ( - represented by a much smaller figure) was making my offerings. This larger-than-life figure represented powerful individuals (managers, teachers etc) in my past I have had to cow-tow to. My experience today was represented by a dynamic figure turned away from the altar, actively pursuing some brightly coloured pieces of tissue paper, representing more fulfilling goals in relation to my work.
I didn't use the word 'giant' to describe my larger-than-life figure at the time but now I realise that is exactly what he is. Maybe I didn't say 'giant' because I felt I was above fairy tales, but now, given the fantastic insights we all had working through Jack and the Beanstalk, and the Gingerbread man I realise how timeless and wise they are - to us all. And the wisdom is not just with the fairy tales but the two young people who introduced them to us all.

(Since this blog was written, the Jack and the Beanstalk session, and the art session have been talked about more often than one might have expected and I'm not sure why, given our focus on overcoming barriers to work. This morning (2nd January 2010) however I came across a slip of paper in a management book I often dip into on which I had written "...... pictures operate as vehicles of human experience" a quote lifted from the chapter 'The Recovery of Meaning'. Given I feel exploring human experience is vital in the work that we do ( - see my 30th June 2009 blog: 'everyday experience at work: vital to disabled young people exploring the world of work') there is clearly a link between our art sessions and overcoming barriers to work. Not sure precisely what this is yet but I can feel another blog in the offing.)

Being clear about purpose

2009-07-29T07:44:00.000-07:00

(The following represents Nigel Fenner's personal views, rather than those of Hertfordshire PASS.)

I am becoming more and more convinced that being clear about the purpose of a meeting, or event or organisation is key - if the vulnerable, or disenfranchised, or for that matter anyone taking part, are to take up a meaningful role.

Without clarity of purpose it is no surprise powerful individual(s) exert influence on what is going on. Often this is done with the best of intentions, and the results are often very good, and for all those taking part, there is often relief that someone strong, assertive and charismatic is leading. However in the work that I'm involved in, where we endeavour to build capacity in young disabled people to run their own work preparation programme ( - see http://www.hertspass.com/ ), it is no surprise 'how meetings, events and organisations are run and managed', is up for scrutiny.

Hertfordshire PASS is currently planning for the visit of a high ranking government minister to our offices, who wants to see the apprenticeship scheme we operate with and for young disabled people. The visit has been set up by another charity with a national brief striving to enable more disabled young people to access education.

Whilst the purpose of the visit may appear obvious, in dialogue with this charity, we have identified a number of potential agendas that the visit will not have time to fully cover. We at Hertfordshire PASS believe very strongly the 3 apprentices should have a closed meeting with the minister 'to give opportunity for PASS's apprentices to share their experiences of being an apprentice, and as a result of these experiences explore what might be done to enable more disabled young people to take up apprenticeships'.

Such a purpose obviously restricts what the charity we are working with can contribute to the visit, as well as other partners involved in the apprenticeship scheme, such as the local college. It also limits what Hertfordshire PASS might do to raise its profile more generally in showcasing its other work and staff. With this in mind we are planning a short meeting with the minister to follow the closed meeting with the apprentices, to share our experiences - as organisations - in contributing towards the apprenticeship programme.

Of course none of the above accounts for what the government minister believes the purpose of the visit is. However if we're not clear about the purpose as we understand it, it will be no surprise the government minister will fill the vacuum by taking up the 'strong, assertive and charismatic' role of the powerful we want to avoid.

Finally, I believe that unless the purpose of a meeting, event or organisation is worked on to ensure it is clear, explicit and acted on, it is very difficult for 'disabled people' to shake off this label and take up a different role, such as 'apprentice', and 'shaper' of government policy and practice we hope will occur when the government minister comes visiting.

Everyday experience at work: vital to disabled young people exploring the world of work

2009-06-30T09:53:00.001-07:00

(The following represents Nigel Fenner's personal views, rather than those of Hertfordshire PASS.)

I have had two recent experiences of projects failing to appreciate the value of their day-to-day work experience to disabled people. The first experience relates to a management group convening for the first time to deliver a European Social Funded programme providing work related skills and opportunities to people with mental health problems. I asked why such people could not be part of the management group, if for no other reason than to experience a meeting and how it is managed, how people behave, how people get heard, how disagreements are resolved, how progress is made etc. There appeared to be agreement to start with, closely followed by a number of obstacles (such as how big the management group would grow to). The outcome is a users reference group, separate from the management group.

The other experience relates to some early plans to explore how best to develop and train an apprentice bookkeeper. When I suggested that the individual (yet to be appointed) might have a day observing the 3 bookkeepers in the department this was met with scepticism. Their understanding was that the apprentice bookkeeper would be trained first before they would be able to get involved and contribute in the office. Whilst I agreed there was a need for technical training, why couldn't the minute by minute bookkeeping experiences such as dealing with customers on the phone, entering data on the computer and exploring issues together as a team, be made available to an apprentice to observe?

Whenever possible I always open up what I am doing to one or more of our apprentices and following a period of observation I might ask for their first impressions and / or provide a context for what is going on etc - taking no more than a few minutes of my time to do so. Not only does it keep me on my toes in terms of being clear about what I do and why, but it gives insight for the apprentice, into how to take up a role ( - which you can never get through a text book or training).

In addition to making the second by second work experiences of staff available to disabled young people ( - as described above), we also have a scheme where ordinary adults visit us to share their work story in response to questions from a group of disabled young people - who lead the discussion. Afterwards the adults who take part are often unsure whether what they said was of value. To test this out we asked our 3 apprentices, who took part in these discussions, what was the most significant story they could recall from the 10 or so visitors we've had. Firstly they recalled one successful manager who left school with no qualifications, then another visitor who said her biggest barrier to starting out in work was her shyness, and the third visitor who said he went out to get his first job because he didn't want to keep asking his mum for pocket money. These may appear trivial but for young disabled people setting out on the 'work trail' they are invaluable.

So why can't we provide opportunity to young disabled people to observe the day to day experiences we all have? There's a lot more value in them than we think.

Thoughts and feelings - and independence

2009-06-28T11:17:00.000-07:00

(The following represents Nigel Fenner's personal views, rather than those of Hertfordshire PASS.)

Hertfordshire PASS, the charity I manage, has the following aim: 'a user-driven charity using employment to enable disabled people to live independently'. Since I started with PASS the focus has been on creating the context within which user-driven work might flourish, particularly through WorkABILITY, which was established from scratch using Big Lottery funding, at the end of 2006. My role as Manager, in 'creating the context', is described in our current WorkABILITY leaflet as "creating a safe, supportive, yet challenging setting for disabled young people to:

Identify their aspirations and dreams for the future – in relation to work and employment,
Explore, share and learn from their own, and others experiences,
Shape the purpose and agenda of meetings, events, projects and PASS itself,
Understand the wider context in which PASS is operating, to appreciate the constraints and opportunities available,
Monitor the work of PASS, its staff and other resources to ensure PASS’s aim is being met,
Work or volunteer for PASS, and
Take up positions of leadership and authority in leading PASS forward."

Whilst we have attended to all of these, the two areas requiring most attention have been the focus on experiences, and shaping the purpose of meetings, events etc. I think we're very good at doing this, but we need to get better at it.

I had a hunch the other day that it might be something to do with 'thoughts and feelings'. In my experience our 3 apprentices ( - all disabled young people employed to drive WorkABILITY) are able to share relevant experiences but not so good at reflecting on these in terms of what they 'think or feel' about them. Maybe it's a bit simplistic but if you can't 'think and feel' for yourself, it's probably because of the dependency you have on others ( - such as parents) to do this for you, particularly so for disabled young people.

So over the next few months I'm going to focus on 'thoughts and feelings' in our apprentices and the disabled young people they work with, to see whether it develops not just greater independence, but PASS's ability to be user-driven.