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.