For lived experience to be a resource enabling disabled people to take authentic action.....

Bernd Sass and Peter Beresford claim that the 'lived experience of disabled people is the most under-used resource in social care' which is why SEMPA (Supporting Employers Managing PAs) makes the lived experience or stories of disabled people who employ their own PAs shared on video, available as a resource to those new to this role.

I was very fortunate to work for the Grubb Institute about 10 years ago where I learned how to 'work with lived experience' and whilst I used this understanding recently as the foundation for SEMPA's latest product (on the Contract of Trust: go to  http://www.sempa.co.uk/2014/08/sempa-cic-contract-of-trust-promotional-video/ for its promotional video) I have felt the need to update my theory and practice.

I had a very helpful Skype conversation this week with John Bazalgette one of the Directors of the Grubb Institute at the end of which he sent me an article entitled 'Leadership: The impact of the full human being in role'. As I progress through it I want to share what I discover through my blog.

John believes that "for experience to be a resource enabling authentic action" three conditions need to be taken into account:

1. The first condition is "valuing lived experience".....in the "here and now" because it is "the best and truest place to be in; being anxious about past and future achieves nothing, since these are beyond the control of the individual". Given 'choice and control' is vital to disabled people as they strive to live independently, lets start by 'valuing lived experience' as something we can control
2. The second condition is that the structure or framework we are operating in provides "sufficiently predictable circumstances under which (we) can create together patterns of mutual expectations" to achieve the task or goal we set out to do. If we feel safe in such a structure we can explore the rich and diverse experiences we have such as "love and hate, despair and hope, exhilaration and boredom that constitute the realities of working life together", and 
3. This in turn creates the third condition which is "working in role". It is only when we know what the purpose or task of the structure or framework is that we can identify the role we need to take up to achieve it. For example if the structure created is about 'a disabled person being cared for' then this dictates the roles of the carer, providing the care, and the disabled person receiving it, as a recipient of care. A different structure might be where the disabled person wants their independence (as their goal) and so creates a framework or structure to achieve this by, for example, employing their carers; here the roles become employer instructing their personal assistant to give them care.

In order to get the best out of the above John refers to the importance of "the spirit of enquiry"; more about that in another blog

Where do disabled people who want to live independently go for help and support? Jeremy Kyle?

The following represents the personal views of Nigel Fenner, rather than Hertfordshire PASS.

The 5 young people on Hertfordshire PASS's employerABILITY programme were recently given the task, over a number sessions / days, to plan and perform their own role play(s) lasting about 30 minutes.  They could choose what the role play(s) focused on provided they covered any issues or challenges they have in taking up their role either as an employer of carers / Personal Assistants (PAs), or as a PA.

(For those who don't know, 'employing your own carer / PA' using a Direct Payment or Personal Budget is one of the most important means by which disabled people live independently in their own home, rather than being cared for by the State. The employerABILITY programme therefore brings both disabled people as prospective employers, together with young people, as prospective PAs, so that both work and learn together.)

What they came up with, working together as a group (3 x employers, and 2 x PAs), was 3 separate role plays covering 4 issues, all contained in a 'Jeremy Kyle show' format. I know little about this TV show, other than it is obviously popular with young people and those who have opportunity to watch day time TV. Wikipedia also describes it as "Kyle discusses the problem with the guests and "mediates" between all the involved parties, trying to help them reach a solution".

The 4 issues they chose and performed their role plays on, were

• A mum who has cared for her son all his life now wanting to put him into care because she was getting old, and 'wanting now to live her own life' 
• A PA 'taking over and doing everything' for a disabled student at college
• Two PAs employed by one disabled person spending too much time together (during work time) rather than providing a PA service to him, and
• These same two PAs stealing funds from the bank account of the same disabled person / employer.

As is often the case with role plays, all participants were able to take risks by pushing their character to limits they would not normally do, in 'normal' life. In addition, given the Jeremy Kyle format, there were attempts to resolve the above issues. These ranged from a social worker, as a guest on the show, being able to introduce the mum and her son to the merits of Direct Payments, to the use of a lie detector test to indicate that the two PAs in relation to the last 2 issues, were 'guilty'.

What struck me afterwards as we were reviewing the role plays was not so much why they chose these 4 issues ( - which is perhaps the focus of another blog), rather, why they chose Jeremy Kyle to resolve their issues / challenges. What was worrying was that they had little or no answer to my question 'who or what is the equivalent to Jeremy Kyle, in real life, for you, in addressing the challenges you might have in employing PAs and living independently?'

Given cuts to statutory funding the 'Jeremy Kyle role' is less and less likely to be taken by a social worker, which is why at Hertfordshire PASS we have always heralded the vital role that older and more experienced disabled people have in sharing their lived experience - in response to the sorts of issues and challenges that were featured in the role plays. This opportunity on the employerABILITY programme takes place every week in the 'hot seat' session where our prospective employers and PAs can ask whatever questions they like, and the visitor in the 'hot seat' is briefed beforehand to answer in terms of their lived experience - rather than lecture or make sweeping generalisations.

So perhaps a disabled person or better still a range of disabled people, experienced in employing their own PAs might be a suitable substitute for what Jeremy Kyle offers? I certainly think so, but is there more than just lived experienced that a disabled person offers?

(I've written about this a number of times in other blogs, see for example http://nigelfenner.blogspot.com/2009/09/boppis-song-and-darwins-survival-of.html or
http://nigelfenner.blogspot.co.uk/2011/10/foolishness-and-uk-becoming-more.html .)

In addition, I was also moved by a few lines in 'At the Wellhead', a poem by Seamus Heaney (Irish poet and winner of the Nobel Prize in Literature in 1995) who sadly died recently, who wrote of "our blind neighbour......; that blind from birth sweet voice.....was like a silver vein in heavy clay, night water glittering in the light of day....; being with her was intimate and helpful like a cure you didn't notice happening".

I'd like to think that when our hot seat sessions work well and the disabled person as the visitor, is humble, honest and open, that it can feel 'helpful like a cure (we) didn't know was happening'.

This may appear far fetched however when one considers that Carl Jung believed that "behind ones wound there often lies a person's genius" then maybe there is some wisdom and merit in what we do - in preference to whatever Jeremy Kyle might be able to offer?

"I want to be inde" (but we need to be 'interde' to be so)

(Hertfordshire PASS recently published User-Driven 3 a book containing articles written by users of PASS's WorkABILITY ( - preparation for employment), and employerABILITY ( - preparation for being an employer of PAs/carers) programmes. The book also contains a range of other articles, with the following being Nigel Fenner's contribution. User-Driven 3 is available from Hertfordshire PASS.)

I was sitting having my lunch and a staff member sitting next to me said "I want to be inde" to a colleague and because I was close by, I asked what he meant by this. He said he wanted to be independent, and that ‘inde’ was shorthand for saying so. I thought this was great, in that it reflects what PASS is aiming to achieve, as “a user-driven charity using employment, and ‘being an employer of PAs (or carers)’ to enable disabled people to live independently” – or inde, for short.

In addition to PASS encouraging young disabled people to use their own language to describe what they want, I hope too that this book, User-Driven 3, gives them opportunity to share their experiences in striving to be ‘inde’.

Given PASS’s aim, these experiences focus on disabled people using employment, through our WorkABILITY programme, or using ‘being an employer of PAs’, through our employerABILITY programme, to become more independent. These two programmes are featured at opposite ends of User-Driven 3, and in the middle, we’re sharing the experiences of some of our staff at ‘the crossover’ where employment preparation, and ‘being an employer of PAs’ preparation, intersect or overlap. So for example we have Patrick Fitzgerald sharing the experiences he’s had as Apprenticeship Co-ordinator in bringing apprenticeships to both WorkABILITY and employerABILITY. We also have Rob Voigt, Hanna King and Andrew Bird writing about their experiences of moving from WorkABILITY to employerABILITY, with Andrew also writing about how he has taken this to another level in creating his own award-winning social enterprise – and achieving this, in his own time.

In addition to the ‘added value’ in WorkABILITY and employerABILITY operating side-by-side, there are other exciting and innovative ‘crossovers’ taking place too in Hertfordshire PASS. For example the employerABILITY programme prepares young disabled people to be employers of their PAs at the same time as young people are being trained to be PAs. In addition we’ve always endeavoured to place disabled people on work experience with employers who have never or rarely ‘crossed-over’ or interacted with disabled people before ( - see for example pages 55 to 57 in User-Driven 2). We also endeavour to manage and drive Hertfordshire PASS using a cross-over between disabled and non-disabled people, using for example the ‘disabling experiences’ we all have, as a key resource.

So when the disabled people we work with strive to be ‘inde’, this is rarely achieved alone, as we all need cross-overs or interaction with other people to do so. So, in order to achieve independence, we need interdependence too – or perhaps ‘interde’ for short?

Hertfordshire PASS in the Top 100 Apprentice employers in the UK - reported in the Trustees report for 2011-2012

Hertfordshire PASS Trustees Report

1^st April 2011 – 31^st March 2012
(The following report was written by Nigel Fenner and approved by the PASS Trustees following a number of additions and changes. The report was contained in PASS's Annual Report - available on request.)

Hertfordshire PASS in Top 100 apprentice employers in the UK.

In 2010 when PASS was celebrating its 10th birthday it set itself the ambitious target of appointing 10 further apprentices (to add to the 6 PASS had already appointed to its staff team). By March 2012 it had achieved 9 of the 10, and for this, and other achievements, Hertfordshire PASS was only 1 of 2 charities placed in the Top 100 apprentice employers in the UK for 2011 by City & Guilds, and the National Apprenticeship Service (NAS).

Being innovative

We believe such recognition is linked to the need for PASS to be highly innovative given its small size as an organisation. For example, over 2011/12 we tested 3 exciting and ground breaking hypotheses that went right to the heart of Hertfordshire PASS endeavouring to achieve its aim as 'a user-driven charity using employment, and being an employer of carers / PAs to enable disabled people to live independently'. The 3 hypotheses were:

1. The struggle a young person has in developing their independence, through becoming an employer of their care staff can be used as suitable evidence for an apprenticeship……
2. There are mutual and additional benefits to training and developing apprentices in 'being an employer' at the same time as apprentices in 'being a carer', and
3. There are also mutual and additional benefits to training and developing young disabled people as apprentices in 'being an employer' alongside young disabled people as apprentices preparing for work (as an employee).

In bringing apprentice employers of carers together with apprentice carers, and other apprentices preparing for work, we feel we created a unique 'melting pot' that threw up some fantastic results, matched too by some major challenges.

The 'fantastic results'…..

In working to test hypothesis 1, Hertfordshire PASS started to develop its new apprenticeship in being an employer of PAs in summer 2011, in full consultation with Andrew Bird and Hanna King - 2 existing PASS staff members with experience of employing their own PAs. This led to the appointment of 3 young disabled people as apprentice employers at the end of September, and in partnership with Hertfordshire County Council, and Hertfordshire Care Providers Association, the appointment of 3 apprentice carers, or PAs to work with them.

Political support

Given we felt our new programme had (and still has) the potential to address some significant national challenges such as meeting the government's vision for adult social care, cuts in disability services, a significant growth in demand for PAs and the employers to employ them etc, we invited Stephen McPartland, the MP for Stevenage to visit us, and after 2 visits (including PASS's AGM) he said:

"I was proud to meet some of the new apprentices and learn from Andrew and Hanna the journey they had undertaken in developing this concept. It is an amazing project and I am delighted that they are leading the way with such an innovative apprenticeship scheme. I look forward to working closely with them and keeping Ministers informed of our progress."

Such 'keeping Ministers informed' included PASS's local MP brokering a meeting between PASS's Manager, Nigel Fenner and the Rt Hon John Hayes (Minister of State for Further Education, Skills and Lifelong Learning) who also expressed plenty of interest in the programme.

Independent evaluation

In addition to getting an independent view from MPs, PASS also secured funding to have the new apprenticeship programme independently evaluated and a report on the first 3 months was published in early March 2012 by Margaret Martin. In summary this concluded that there was certainly some truth in hypothesis 1, and hypothesis 2, although more work was needed to confirm this - and funding was sought (and found) to extend the evaluation for a further 9 months. Margaret Martin also concluded

"the programme has been designed and run by the disabled people themselves, using innovative training models in order to address issues which are important to disabled people and their PAs……which is at the cutting edge of innovation……is entrepreneurial…..and is probably unique".

Generating national interest

In addition to politicians, the apprenticeship programme also attracted the interest of some key individuals / organisations from across the country including Tony Phillips (Realife Trust), Joe Whittaker and Tara Flood (both Alliance for Inclusive Education), and Julie Stansfield (In-Control).

Mixing apprenticeships in being an employer, with other apprenticeships.

As far as testing hypothesis 3 was concerned, it was not possible to do this through the independent evaluation, however it was noticeable that there are benefits in mixing together those who are endeavouring to develop their expertise in being an employer (of PAs) with those who are developing their expertise in being an employee.

Those who were developing their expertise as an employee were doing so as apprentices on placements at Henkel, POhWER, Hertfordshire County Council Adult Care Services, and St Albans City Youth FC.

Fundraising successes.

In addition to all the above fantastic results, PASS was able to largely secure the resources necessary to deliver the above programmes. Credit for this goes to Stuart Sapsford, PASS's fundraiser who having been appointed on 1st April 2011 (on a 6-hour / week contract) proceeded to raise over £150,000 during the financial year. In addition to 'hard cash', PASS was also able to secure a significant number of (second hand) laptops from Henkel, as well as have a number of highly innovative bespoke pieces of accessible equipment made by REMAP, including a page turner and a push bar extension on the rear fire door for wheelchair users.

PASS’s Payroll Service.

Lastly, mention must be made of the invaluable work that goes on 'behind the scenes' supporting the programmes referred to above. For example PASS can boast a Payroll Service (- for disabled people who employ their own care staff) that in addition to being in existence since 2003, works with over 80 disabled people across Hertfordshire. In addition to providing payslips, P45s, and P60s the service also provides telephone support with one very satisfied customer reporting

"the PASS payroll service makes the difference to me with it's personal approach, just being able to leave your details and those of your PA and just sitting back to let someone else work out all the details is so easy and asking a question of a person and not a computer makes the service so easy and accessible to use. If you have ever tried to talk to a computer or ask an automated answering system a question and not getting an answer you'll know what I mean. Or have you sat there on the telephone pressing button one for customer service and button two for another service and then getting put in a queue followed by someone who doesn't know you from the other callers, you will also know what I mean. As they say you get what you pay for and you certainly do with this service from PASS. Without it I would have to reconsider being an employer of a PA and go back to those agencies sending strangers through my door everyday."

Support Services

Another 'behind the scenes' excellent service is PASS's Support Services, which provides reception, office, admin, marketing, and HR support as well as a proposed new 'information service' providing support (in being an employer of PAs) run by disabled people, for disabled people - to complement what PASS's Payroll Service is already providing.

The major challenges

Finding a training provider and suitable apprenticeship

The challenges PASS had in 2011/12 included finding both a training provider and suitable apprenticeship for 'employers of PAs'. Despite approaching 10 further education colleges or commercial training providers, PASS was unable to enrol the 3 employers of their PAs on a suitable apprenticeship. The reasons given include there not being a suitable apprenticeship for the work the employers of PAs were doing, plus the 3 employers of PAs not achieving Functional Skills Level 2, and not working enough hours in the week (15 compared with the 30 hours / week set as the standard). In independently evaluating PASS's efforts to work with such training providers and the apprenticeship framework, Margaret Martin reported that the challenges PASS has encountered

"derive ultimately from trying to fit disabled people into educational models designed for able-bodied people. In terms of Functional Skills the National Apprenticeship Service allows "reasonable adjustments" to be made for disabled people, but there is no obvious guidance on how this can be interpreted by colleges. Their reluctance to take risks in a tight financial climate is understandable. The unique nature of the (being an employer of PAs apprenticeship) programme, designed by the disabled people themselves (not a tried and tested, off-the-shelf model), and using evidence for portfolios from "lived experience", may also appear to be high risk for some providers".

Funding dependent on outcomes

Whilst PASS was largely successful in securing funding for its work, it had problems with 2 of these 'pots' because they were linked to achieving apprenticeship outcomes, which PASS failed to do, for the reasons described above. This meant grants being frozen and reduced after lengthy and difficult negotiations, putting

a lot of pressure on PASS. As Margaret Martin subsequently reported in her independent evaluation, there are tensions "between the requirements to meet particular targets and "milestones" defined in advance by funders, and the reality of barriers" encountered by pioneering organisations like PASS, which "are national issues, and the practical challenges this presents for training providers need to be addressed. More flexible models of outcomes need to be agreed for work of this kind….. which focuses on "lived experience" in quite a unique way".

PASS and the recession - and its deficit.

As with all organisations the current recession has had an impact on PASS. However, whilst the trustees considered the possibility of making staff redundant on 2 occasions over the year, such decisions were averted because of PASS's successful fundraising. PASS also considered taking on a contract with the local authority which whilst it offered funding, would have taken PASS away from its core work. Fortunately, such 'mission drift' ( - a real problem for small charities) was averted because of PASS's fundraising efforts, however a compromise was agreed with the local authority where a PASS staff member was seconded for 6 months onto the programme in question.

Despite PASS's fundraising efforts, it made a deficit of £27,933, compared with a surplus of £32,863 in the previous year. The deficit in 2011/12 includes a £9,374 deficit in the Unrestricted Funds (sometimes referred to as the General Fund) which is a cause for concern, however this was exacerbated by PASS having to settle up the expenses, amounting to £5,777 it had incurred in successfully defending itself in a long running employment tribunal case that ended with PASS being awarded compensation in May 2010. The remainder of the deficit ie £3,597, is the result, we feel of the difficult economic times.

Lack of office and training space.

Whilst PASS had fantastic offices in Welwyn Garden City these were mostly open plan, small and relatively expensive. Through Owen Parry's (Chair of PASS trustees) connections with POhWER, PASS moved in June 2011 into premises in Stevenage over twice as big (including a dedicated training / meeting room), and ¾ of the rent PASS had been paying.

The future

The Trustees agreed a 5 year plan on the 1st April 2011, which Hertfordshire PASS is largely adhering to. This plan focuses on growing PASS's:

WorkABILITY programmes:

- Work Club
- Work experience, and
- Apprenticeships

employerABILITY programmes:

- Further development / piloting of the apprenticeship in 'being an employer of PAs', and
- Payroll and support, and

Support Services including:
- Publishing User-driven 3 ( - the 3rd book PASS has published on the experiences disabled people have in accessing employment, and becoming a more effective employer of PAs).

In addition, PASS is also considering creating a Community Interest Company which would enable it to operate more effectively as a social enterprise.

"It's so fantastic to be a normal person"

- the last word from one of the PASS staff members who serve on the Board of Trustees - as reported at its 21st July 2011 meeting:

"I used to travel to PASS using a taxi but it meant I was paying out more than I was getting in my pay-packet, so I started to use the bus, which has saved me a lot of money…… I realized my disability does not get in the way of me being a normal person… I started at PASS as a Junior Apprentice and then moved on to be the Access to Work Officer; at this time I was still living in a residential home…however 5 or 6 weeks ago I moved into my own flat…and it's the best thing I've done…; there were so many barriers in my residential home that did not allow me to lead a normal life….. Now PASS say I am such an inspiration to them…. Andrew Bird says I'm so determined to get things done…. I love the fact that they let me take risks whereas in my residential home they would not let me do that. Recently (two staff) and (PASS chairman) have discussed the changing of my role to include 'Benefits'….but it's just so fantastic to be a normal person…"

 

 

Gold Medals, the Paralympics and Apprenticeships

I was fortunate to go to both the Olympics and Paralympics, and given their amazing success, I've been wondering what impact they might have on Hertfordshire PASS. What encouraged me greatly was that Gold Medals are Gold Medals whether Olympic, or Paralympic. In the work that we do / aspire to do, 'achieving an apprenticeship' is comparable to winning the Gold Medal, however at present only the able bodied can 'win'. Given what we've seen and marvelled at in both the Olympics and Paralympics, why can't there be two different routes to the same Gold Medal end - applied to 'achieving an apprenticeship'?

(The above represents the personal views of Nigel Fenner following discussions with Margaret Martin who is currently engaged in independently evaluating Hertfordshire PASS's pilot 'apprenticeship' in being an employer of PAs / carers. These views are not necessarily those of Hertfordshire PASS.)

Margaret's response:
Thanks Nigel, that was an interesting discussion in the light of our visits to the Paralympics and watching Arthur (Hertfordshire PASS Trustee) do the torch relay. The other correlation with the Paralympics is that the route to the same medals is not an inferior or lesser route, it’s a different one. In fact you could argue that it’s a tougher one in many respects for those involved and for those who support them. There is an important parallel with the current deliberations about the apprenticeship framework for disabled people in employing their own care staff. Some in policy and tertiary education suggest that it is best to go down the “exceptions” route within the current apprenticeships programme. I think that this would be similar to saying that Paralympians are unable to follow the Olympian “route” so had to be given their own route on this basis. No, it is different, and should be recognised as a route in its own right – otherwise the status of disabled people who want to employ their own care staff in the apprenticeship programme would be as “exceptions to the rule”.
I know these are tricky negotiations, and a way forward needs to be found even if it means compromise and flexibility on both sides. It does feel to me that there is a principle at the bottom of this debate which we should not shy away from. As Hanna said at the National Steering Group meeting in August, “as soon as you put the word disabled in front of somebody everything becomes ten times harder!” It’s a good time to raise this whilst the Paralympics are fresh in people’s minds. The word “para” in Paralympics means “alongside” (Greek) – maybe that’s an indication of what is being sought by Hertfordshire PASS in the apprenticeship programme.
(As with Nigel’s Blog, these are my thoughts and not necessarily those of Hertfordshire PASS. Margaret.)

What a Personal Assistant (PA) wants from their employer - on their first day

We're 6 months into piloting our new apprenticeship in 'being an employer of PAs'  with 3 young disabled people working with 3 apprentice PAs. This has given us opportunity for the 'employers' to experience working with different PAs. Over the last 6 weeks or so, we've been working up to such a change, by following the processes and procedures required in finding and appointing a PA, culminating in a 'first day' working together.

At the end of this 'first day' recently I asked everyone to recall what they had covered over the previous 6 weeks, and this is what they shared:

• The importance of honesty, confidentiality, responsibility, and independence
• The need to separate the personal from the professional
• To reflect on and use experiences
• The importance and use of a Job Description, and Person Specification
• The use of an application form
• The management of interviews, references, and the contract of employment, and
• Considerations early on such as income tax, induction, and the 'first day'.

Having compiled this list I then asked 'what do they think is the most important consideration for the first day of employment of a PA?'.

Almost immediately one of the PAs said "honesty", then another said "independence….because when I work for someone I want to know what they can do, and the things they can't".

Whilst we've always focused on the relevance of independence (and not just the apprenticeships as 'ends in themselves'), I was astonished at this comment, given I had expected other more practical issues to be raised as requiring consideration on a 'first day'.

In reflecting on all of this I recall a friend, and mentor who spent many years as a Prison Governor, say to me "you only become truly independent, when you know and name your dependencies". In other words there is no shame in all of us being honest about the things we need help with, because it's only through doing this that we become clearer about those things we can do for ourselves.

And for a young 17 year old apprentice PA, this is what she would want to explore with you on her 'first day' of work for you.

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

(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’s key objective or aim is to enable disabled people to be more independent. We use employment (through our WorkABILITY programme), and ‘being an employer of care staff’ (through our EmployerABILITY programme) as the means by which this is achieved. The demand for WorkABILITY grows out of the exceptionally high levels of unemployment amongst disabled people (50%) compared with the non-disabled population (20%), linked also to recent Welfare and Benefit reforms where there is increasing pressure on disabled people to secure 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 people wanting to remain in their own homes rather than being taken into Local Authority or private care. Given the cuts in public spending there is extra pressure on disabled people to ‘go it alone’, but without this being adequately resourced ( - as highlighted by a recent National Audit Office report ‘Oversight of user choice and provider competition in care markets’ published 15 September 2011).

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

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

Lastly we feel there is demand for what we do because it is user-driven. Where users decide on what is to be provided, and how, and deliver it, it will, by definition meet the needs 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

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

I feel we had an excellent Annual General Meeting (AGM) last Friday which included the active participation of Stephen McPartland, 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 staff regarding the work they 'drive'.  As our local MP remarked, in responding to all these presentations….."with Hertfordshire PASS, you get what it says on the tin".

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

Firstly one of our senior staff ( - who recently finished his apprenticeship with PASS) was in, what we call the 'hot seat', where he was asked questions about the experience of being an apprentice by new apprentices and staff.  Here is part of the dialogue which took place:
Question: What do you  feel are the greatest differences or similarities for you between school and the apprenticeship you did here at PASS?
Answer: ( - which was immediate) I was bullied at school  - which made me stronger.
Response by one of the new apprentices: Stronger - you're kidding!!?
Answer: I don't regret having been bullied…..Of course it was something I hated….it was a living hell….but I see now that it has made me stronger…...
Question: What might Hertfordshire PASS do through its apprenticeship programme  - to make our apprentices stronger?
Answer: It's clear to me that because Hertfordshire PASS is user-driven I have been put under different challenges which have had the same effect of making me stronger.
(This quote / dialogue has been used with permission.)

The other experience relates to a comment made by one of PASS's existing apprentices during a discussion on 'what our 'starting point' was on our journey to independence?' The staff member said 'if I 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…... If this had not happened I don’t think I would be where I am now…..in leading on the work I do for PASS'.  (This quote has also been used with permission.)

What I feel these comments tell me about user-driven work is that it is not enough just to put our staff into positions 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 had in 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.

(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.

The health impact of employing your own personal assistant / carer

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')

(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

(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.

(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......?