Week 13: What I learned from 10 weeks working in a large disability charity head office #LDWeek15 #107days

This post offers personal reflections about an experience just over two years ago. It is my (George Julian’s) opinion, reflections and memory. I offer it as food for thought for #LDWeek15 as JusticeforLB Week 13 continues to explore whether charities are part of the problem.

This post is not an attack on all (or any) charities for an attack’s sake; it is not fiction or exaggerated; it does not question the intention of the many, many excellent people who choose to work for a charity, although it does question the blanket assumption that all who do are quasi saints! I’ll come to that point.

My experience

After eight years working in a (very) small national organisation, trying to make a difference to people’s lives within many constraints, not least working underneath the umbrella of a very confused, multi-purpose charity, it was with joy in my heart and a spring in my step that I pitched up for the first day of a maternity cover post in the (self-named) leading learning disability charity in the UK. I was due to hold the position of Head of Research and Impact, a perfect match for my skillset and professional expertise and qualifications. Having completed a PhD looking at the education of profoundly disabled children over a decade previously, I was delighted to return to the learning disability arena and confident with a focus on research and impact had a contribution to make.

My experience was short lived however and I left after 10 weeks. There were many reasons for this, including large scale restructuring within the organisation and my complete disillusion with what I found, compared to what I’d expected!! The thoughts that follow have percolated over the last two years and I offer them now for debate and discussion.

I have written a series of general statements that emerged from my experience, I’d welcome your contributions and comments and would love to receive examples of where my generalisations are misguided, I genuinely hope a lot of them are.

1) It is incredibly difficult to critique a charity I’m not sure whether this is a uniquely British stiff upper lip, terribly polite, hold our resolve thang, but it seems to be incredibly difficult to in any way to critique the work of a charity. Invariably it is met with at least some suggestion or kick back that you’re somehow a) being unfair b) denigrating the brilliant people who choose to work for charities c) are unaware of their exceptional work and so on, and so on.

2) It is also difficult to be a dissenting voice within a charity I suspect for some similar cultural reasons as are at play in the first point, together with an unhealthy dose of confirmation bias, it is hard to truly challenge within the hallowed walls of head office. A relatively new CEO and a senior management team looking to assert themselves all too readily overlook those within their teams, rushing to squash autonomy in favour of compliant flag wavers for their latest strategic plan.

3) Not everyone who works in a charity does so because they believe in the charitable cause, nor are they necessarily exceptional at their job Pretty much like any organisation, there are good and bad within charities. A quick glance at charity accounts will show that this doesn’t always come without a cost, seemingly huge amounts of charitable funds are spent on redundancy or termination payments.

4) Not everyone in a charity is poorly paid I’m not for a minute suggesting that they should be either, however, if your CEO is taking home over £100k I’d sort of expect them to be bloody good at their jobs, and at the very least for the charity to be effective and innovative.

To give you some perspective on this, I had a quick look at Mencap’s 2014 Annual Accounts and can share that their senior management team salaries minus pension contributions (I assume it is them given they’re all on £60k plus) are as follows:

£60–70k: 8 staff members

£70-80k: 6 staff members

£80-90k: 2 staff members

£90-100k: 3 staff members

£100-110k: 1 staff member

and presumably the CEO, one staff member, takes home £130-140k.

These are not insignificant figures, and this total spend on large salaries, sits alongside 7 staff members who took home over £60k when including their termination payments (1x 60-70k, 3x 70-80k, 2x 90-100k and 1x 110-120k).

5) Excessive staff turnover or excessive staff retention – pick your poison The uninitiated may look at the salaries and termination payments above and consider 2014 an unusual year, a new CEO obviously changed the strategy at Mencap.

However a tiny dig beneath the accounts surface reveals that in addition to the 7 staff members taking home over £60k including payments when their contracts were terminated in 2014, there were 5 in 2013, 13 in 2012 and 11 in 2011.

If we assume a mid range payment in the bands offered that’s £595,000 in 2014, £615,000 in 2013, £960,000 in 2012 and £975,000 in 2011.

How can any organisation defend such waste?

6) Large, national, leading charities are no more organised, slick/devoted/competent than many smaller charities or organisations with tiny staff teams Perhaps the biggest shock for me on arrival in head office was how inefficient, uncoordinated and generally uninspiring life was. I’d fantasised about a large charity being a slick operating unit, about IT services being efficient, strategies and action plans being in place, coherent strategy and measurement processes. Who knows, maybe it is unrecognisable in its progress over the last two years, but my experience was of a chaotic and confused organisation that struggled to understand what its priorities were, never mind any of the rest.

7) Business and turnover are key In one way you could argue this is par for the course, a sign of our times, inevitable – that business should dominate charitable activity. Indeed, given the salaries paid for the management team, you’d almost welcome efficient and competent business drivers underpinning all activity, that could then ultimately improve the lives of the people it is meant to support. The reality in my experience was that money talked, anything could be written into a funding bid to secure funds, that was more important than due diligence of the activity that followed. I suspect my experience was in no way unique but it appeared that on too many levels the money tail was wagging the dog; projects and bids were devised to meet funding calls, strategic plans (where they existed) were adapted and tweaked to meet a newly funded ‘need’.

I’m no business expert, it’s not for me to say whether this is an appropriate course of action or not, I’ll leave you to make your own mind up. That said, if you have no vision, or if your vision is embedded wherever the latest pot of money is, rather than where your end beneficiaries are, you probably shouldn’t call yourself a charity!

8) You can hide anything you like with ‘good’ reporting and messaging Call me naïve but I desperately wanted to believe that the focus would be on the charitable aims I’d researched before deciding whether to take the post; campaigning, improving people’s lives, supporting learning disabled people – what’s not to like?

What I observed was that reputation was key; managing the message was as important (if not more important) then delivering on quality or improvements for learning disabled people.

If any charity believe in what they stand for, then just get on and do what you’re aiming for. For example, if your focus is on supporting learning disabled people to get work, employ them. Not one or two tokenistic people who can be sat on the reception desk and brought out for public events, I mean really employ them. If you can’t manage to walk the walk within your own organisation how the hell do you expect the rest of society to? Which leads me to my penultimate observation…

9) Beware of values that are for wallpaper not for living by! Everywhere I looked during those ten weeks I’d see value statements, they were stuck on the walls, in the lift, on the screensaver that flickered across your laptop; bold, ambitious, optimistic values, but to be honest that’s where they mostly stayed. If you have to plaster your values everywhere then they clearly aren’t embedded within your organisation.

My experience, and I’d go as far as to say those of many other colleagues there at that time, did not reflect the values being espoused. If you can’t treat your staff well, if you can’t treat the beneficiaries of your charity well, if you can’t actually make progress to what you’ve been talking about for years, maybe it’s time to shut up shop, redistribute the wealth and let some others have a go.

10) Stop speaking for – give up the power I’m not sure how anyone can be the ‘voice of’ or how it helps. Maybe it’s time to stop speaking for and just give over the power.

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Day 94: Citizen Advocacy and Education Fest #107days

Day 94 is another shared day, this time between Barbara and Gail. They both opted to write blog posts, Barbara’s is featured below, together with extracts from Gail’s although you’ll need to visit her blog for the full piece.

When asked why she was supporting #107days and #JusticeforLB this is what Barbara had to say:

I’m a citizen advocate who is also a teaching assistant on the BA(Hons) Learning Disability Studies course at University of Manchester and a volunteer supporter with their Partnership Steering Group. I first became aware of LB when I stumbled on Sara’s tweets last winter as a novice on Twitter. Shocked by Connor’s death, struck by Sara’s frankness, I was and remain in total admiration of her determination and staying power. I too want to see Justice for LB, justice for all the dudes young and old. The campaign makes me wonder what becomes of abuse victims who don’t have anyone to speak up on their behalf… I believe many people, members of the public, can make a positive difference through citizen advocacy: you don’t have to be an expert to be an abuse watchdog.

Barbara asked to write a blog post for her action, which is reproduced below, Speaking up for Citizen Advocacy.

In this blog I am going to touch on abuse, promote citizen advocacy and question current advocacy trends for learning disabled people. Abuse continues despite numerous reviews and recommendations. The reasons are complex but two issues stand out for me:

1. Bureaucracy, ingrained in service culture, obstructs and takes precedence over the support and care of individuals. Ever expanding, repetitive and often seemingly pointless, it leads to the neglect and abuse of individuals who are supposedly being ‘served’. There would be less abuse if services streamlined all this red tape!

2. Social Devaluation: People make unconscious judgements about others. Negative judgements mean marginalised people like those labelled as learning disabled are considered of less value. This can lead to them being treated badly and abused. Also they may well be denied valued things in life like supportive relationships, respect, love, autonomy and participation in meaningful activity. To combat this social devaluation Wolf Wolfensberger, an American psychologist, promoted the importance of creating, supporting and defending valued social roles for people at risk, social roles like family member, friend, worker, volunteer, artist, cinemagoer, holidaymaker, car owner. Thus vulnerable individuals can gain self-esteem and are likely to be viewed more highly and treated better by others in society (Wolfensberger, 1998). This is how citizen advocacy originated.

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Citizen advocates are volunteers who develop long term relationships with vulnerable individuals and speak up on their behalf. The advocate partner is someone at risk of having choices, wishes and decisions ignored, and who needs help in making them known and making sure they are responded to. The citizen advocate also attempts to meet their advocate partner’s expressive needs like emotional support, warmth, commitment, friendship, love. More information about the citizen advocacy partnership is available here.

Over 10 years my advocate partner Gloria (not her real name) and I have built up a close relationship. Like LB, Gloria is fond of public transport and our weekly meets invariably entail a tram or bus trip as well as a bite to eat. I have supported her to be heard and helped realise her wishes to get a car and go on holiday. Gloria has experienced abuse. Often the system is at fault and staff aren’t always aware. Ways I have helped to counteract abuse

  • Money spent irresponsibly by past support workers was refunded to Gloria in response to my formal complaint.
  • With my instigation, Gloria has received support from familiar support workers during hospital admissions to ensure past experiences of fear and neglect were not repeated.
  • The service was obliged to shelve plans to set up a staff office in Gloria’s home due to my protest regarding her tenancy rights. Awareness-raising is an ongoing need, for instance the connecting door with the neighbouring tenancy, keeping it open is convenient for staff but this breaches the tenants’ right to a private life.
  • I alerted the CQC who discussed the negative effects of staff shortages and regular use of agency workers with Gloria’s support service. Recent increased permanent staffing will hopefully provide greater stability.

Benefits are reciprocal: I have gained massively too and will always be indebted to Gloria for many things, including my degree.

UK Citizen Advocacy was developed in the 1970s/80s to support individuals being resettled from the long stay institutions, some of those partnerships continue today. The 2001 Valuing People policy offered local authorities funding to set up self-advocacy and citizen advocacy projects. Development of the latter was patchy and the impact unclear and sadly citizen advocacy has gradually receded. This may have been partly due to the difficulty in measuring the effectiveness of this long-term partnership. Time-limited interventions are easier to substantiate and understandably commissioners want to fund evidence-based advocacy. So paid case advocacy has expanded and so have Independent Mental Capacity Advocates (IMCAs) as a result of the Mental Capacity Act. The different types of advocacy – case, IMCA, self, peer, citizen advocacy – all have their value but not at the expense of each other. The long-term benefits of the citizen advocacy partnership are equally if not more valuable in fighting abuse.

With the introduction of the new Care Act local authorities will be duty-bound to provide ‘independent’ advocacy for certain people to ensure they are better involved in the assessment and care/support planning processes and to support them through safeguarding enquiries. This is great but the Learning Disabilities Observatory believe there is a real danger that organisations will only be able to support learning disabled people assessed as ‘eligible’ for advocacy services and advocacy will come to be seen by commissioners as another professional ‘service’ to be delivered. Who is going to speak up for the rest? If services are at fault in the perpetuation of abuse why is advocacy, with its history of campaigning for rights and mission to question service organisations, increasingly joining the service provision fraternity?

Indeed the introduction of the City and Guilds advocacy qualification means advocacy is becoming increasingly professionalised with some contracts expecting organisations to employ qualified staff. Meanwhile recent policies like Building the Big Society 2010 and Learning Disability Good Practice 2013 encourage local volunteering and involvement in social action, capacity building and development of more community-based support. Plus person-centred circles of support are current good practice. To my mind citizen advocacy fits neatly with all of these. Another reason for it to be promoted not neglected.

A citizen advocate is also independent. Although, there is a lack of research into the extent to which independence supports, or otherwise, produce beneficial outcomes according to the School of Social Care Research, many advocacy organisations are not independent. Most are reliant on state funding, some provide care or support services and others share premises, email servers etc. with the services they are supposed to be holding to account. Advocacy organisations which are reliant, either totally or partly on state funding, are in a difficult position to dispute the parameters of their commissioning contracts. Indeed this Tuesday, Patrick Butler in the Guardian claimed charities (most advocacy organisations are) are having to tone down their campaigning for fear of losing state funding. Compromising independence is likely to reduce advocacy organisations’ effectiveness.

On the other hand, their ‘Loose Cannon’ characteristic enables citizen advocates to be more effective. Unlike in the US, due to public dependence on the UK welfare state and the fact it is taken for granted, the importance of independent advocacy is not properly understood or thought necessary by services or the general public according to Wolfensberger. But what we actually need are more independent citizen advocates who are prepared to speak up for people like LB and Gloria. At this crucial time when abuse isn’t going away, I call on commissioners, policy-makers, advocacy organisations, all those with influence to reflect on the current situation of advocacy in this country and promote more voluntary citizen advocacy. I believe many more people, members of the public, can make a positive difference through citizen advocacy. Come and join us!

Gail has this to say about supporting #107days and #JusticeforLB:

I wanted to do something for the #107 days campaign because apart from the collective outrage that has been so evident it’s restored my faith in humanity. The sense of positivity it has produced is infectious, heart warming and gives me some hope that things can and will change in the future.

Sara is one of my dearest friends and I’ve known Connor since he was around 5 or 6 years old. We are part of a group of six close friends who all met when our dudes attended the same academy for crazy little dudes. We call ourselves the ‘life raft’. Our families have all socialised together for years and so obviously our kids all grew up knowing each other well too. Connor’s death shocked and saddened all of us more that I can say and we remain incensed that it was so preventable. I’ve spoken a lot about Connor and Sara on my blog, not least because his death came just 6 weeks after the sudden and unexpected death of my husband Bob and we’ve been coping with grief shit stuff on a similar trajectory. Similar but not the same, because of course Bob’s death was no one else’s fault. As I’ve been trying to deal with my own grief I’ve watched my friend and her family endure the most inhumane treatment by those ultimately responsible for their son’s preventable death. Compounding their grief and making dealing with their loss so much harder.

Although I’ve adopted today I’ve been raising the Justice for LB campaign in all the work I do, both for Dimensions UK as a Family Consultant and Oxfordshire Family Support Network as Transition support coordinator. I’ve raised it in training, in meetings and parent workshops, basically any chance I get to get this story out there. And, I’ll continue to do this long after the #107 days campaign.

Today Gail is speaking at the the Sunday Times Education Festival. A large event covering all things education and special education. You can read Gail’s full post on her blog, but here’s a taster:

There are a lot of high profile speakers and I’m up against David Starkey (and many others) in my time slot, so I’m not sure how many people will come along and listen to me, but it’s a chance to talk about the SEND reforms and the Children and Families Act and what it should mean to families and I was thrilled to be asked. I’m dedicating my talk to Connor and his family.

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My main focus is on Person Centred approaches and why without them the SEND reforms are set to fail. The need for this way of working in health, education and social care to become embedded in the systems that surround our children and the need for families to be treated as respected partners, involved throughout.

Gail’s post, and indeed her talk, will discuss person centred approaches and the role that they can, and should, play in ensuring good support for all dudes.

Day 85: Advocacy actions #107days

Day 85 is another shared day, this one themed around advocacy. It was adopted by Martin of True Voice and Teresa of SWAN Advocacy. SWAN held a conference on Tuesday and True Voice are holding an event this afternoon, both seeking to show the important role of advocacy in keeping people at the heart of decision making and support.

When asked why they were supporting #107days and #JusticeforLB Teresa said this:

Swan Advocacy was pleased to be able to dedicate its conference to LB and adopt Day 85 as part of the #107days campaign as we truly believe that Connor’s tragic story, and stories like his, must be told and kept alive though the power of social media if change is ever going to happen. As an independent advocacy organisation we see all to often how cultures of indifference can develop within health and care settings and we are committed to the ongoing challenge of ensuring that the voice of the individual and their family is not ignored.

SWAN Advocacy are using their day to share details of the conference, dedicated to LB, held on Tuesday of this week:

Swan Advocacy’s conference ‘Statutory Safeguards: Protection or Control. The role of independent advocacy in finding the balance’ was hailed a resounding success by delegates.

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The conference, masterfully chaired by Mervyn Eastman of Change AGEnts Network UK was attended by over 120 people from a range of professions and backgrounds who were engaged in a day of debate and discussion and able to listen and learn from some fantastic speakers. Jess Flannagan and Jo Burton fro Clarke Willmott gave an expert solicitors’ perspective on the conference theme followed by Graham Enderby (Bournewood carer) who told his incredible story of how his and his wife’s persistence in challenging the treatment of Harry lead to fundamental changes in the law. Terry Gorczynska talked about the role of Independent Mental Capacity Advocates in relation to safeguarding followed by Barrister and trainer Aasya Mughal who gave a fascinating presentation on ‘the absent protection’ for mental health patients.

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Finally Dr Noelle Blackman from Respond ended the conference with an incredibly moving presentation on the dramatic consequences that ‘indifference’ can have on the lives of people with a learning disability – particularly in assessment and treatment units. Noelle began the presentation with a beautiful montage of pictures showing Connor Sparrowhawk at his happiest – surrounded by his loving family having fun. Noelle went on to highlight the tragic cases such as Connor and Nico which demonstrate the tragic impact of indifference.

So, moving forward to today’s gathering, here is why Martin is supporting #107days and #JusticeforLB:

I feel honoured that True Voice has been allowed to do something in support of the #107days campaign. Like most people I came to know about LB through Sara’s blog. When I heard of his avoidable death, and the way that his family were treated I wanted to do something, no matter how small. The problem at first was trying to find something that might actually be productive. I wrote a couple of personal blogs here and here, but I felt that wasn’t moving things on.

This is what Martin and colleagues are doing this afternoon:

I decided that True Voice should hold an event to get people asking how we keep people at the heart of their care, and how we remind people what their role is in that. That means making use of many approaches to supported voices, including independent advocates, natural advocates (such as family members) and health/care professionals.

The idea has now developed to look particularly at issues of health parity, the unremarkable demand that living in a care setting or having a diagnosis of mental health problems or learning disability should not prevent people from getting equal access to healthcare.

Jon Wheeler of the advocacy provider Pohwer is going to look at the barriers to equal access to health that have been identified in advocacy casework, and try to show ways past these. Andrew Carpenter of National Brokerage Network will be looking at how the BMA publication “Recognising the importance of physical health in mental health and intellectual disability” can be used as a tool to remind professionals of their role. And I will be asking what role advocacy organisations have when they encounter problems that reach the systemic level.

I’ll write up some of the learning from the day on the True Voice blog, but it’s not intended to just be a talking shop.  Given that it’s part of 107 days of action, everyone attending will be asked to make a pledge to take some positive action and to set a date when they will do this.  We all know things need to change, so we need to take a role in making change happen.

Full details of the event are available here.

Day 56: Citizen power #107days

Day 56 was adopted by InclusionNorth. This is why they wanted to support #JusticeforLB and #107days:

Inclusion North’s Board of Directors and Advisory Council talked about what happened to LB and what has happened since he died.

They were all really upset for the people who loved & knew LB and wanted Inclusion North to do something that helped other people have their say & get involved as well as show we support the kinds of positive changes that would be Justice for LB.

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Inclusion North decided that they wanted to adopt a day, that coincided with a special self-advocacy meeting, to share real-life examples. These examples will harness practical examples of the changes that need to happen, and share success when people are already getting it right. This is what they have to say about their day today:

We decided Inclusion North should support the campaign by sharing information that shows how it can be different when people with learning disabilities and their families are treated with respect and in control of good support. On 14 May we were already hosting a special meeting for self advocacy leaders to meet with People First England so it felt perfect to do the two things together.

Luckily we could, and we adopted the day from the #107days campaign. We are sharing pictures, stories, videos or even reports that show how we all need to work together to make the changes that are needed. Most of the examples we will share have come from people with Learning Disabilities and family members who got in touch, but if we are honest, the staff team also added in some stuff or twisted the arms of some people for examples we really love! Thank you thank you thank you to everyone who has shared something already & those who do on the day.

At the same time 80 self advocacy leaders and their allies are meeting in York so we will also be sharing updates from that meeting as well. You can see more on Inclusion North’s facebook page.

You can join in with Inclusion North on twitter today and they’ll be using the hashtag #107days. Even better they’ve promised that after the day they’ll collect everything that they get into ‘one big example of what can work if you treat people right’. Looking forward to seeing it.

POSTSCRIPT

19 MAY – Inclusion North have shared with us the write up of the event and learning so far, you can download it by clicking on the first page below:

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Day 48: Speaking up and speaking out #107days

Day 48 was adopted by Angela Broadbridge, a special day for her family as it’s her daughter’s 2nd birthday. This is what she had to say about why she is getting involved and supporting 107days:

I started to follow Sara’s blog way back when she was talking about what a good life would look like for Connor; a fellow social researcher unpacking the big issues around disability; how heartbreaking to read of his death in July 2013, I felt as though I knew LB and his family, knew the direction in which they were headed.

I asked to adopt day 48 of #107days because it’s my daughter’s birthday, I have a strong interest that she develops a desire to tackle issues of social (in)justice and so it seemed an appropriate way to focus my attention. I have spent much of my working life campaigning for the availability of independent advocacy, but in doing so realised early on that my job was not just to promote services and seek funding, but to challenge the practice that advocates see in their day to day work.

Angela has written a brilliant blog post reflecting on her work around advocacy, she introduces her learning from her first ever self-advocacy workshop and explores the themes around people engaging but not being heard. She reference’s Sara’s colossal attempts to advocate for LB:

Sara’s blog posts and responses to the independent investigation into Connor’s death make one thing so obvious – I can practically hear her shouting loud and clear about his epilepsy, seizures, about her rights, LB’s rights – here was a voice that was not being heard.

Angela’s post goes on to discuss this common theme, of not being heard, in relation to current policy and practice environments, and offers her own suggestions for what would make a positive difference. I’ll give the final thoughts of this post to Angela:

The NHS Constitution is supposed to extend in law a right for patients and their families to be heard. This is not a document to be referred to only in case of complaint but to be woven into practice, especially at the harder end of care. We need to see it given teeth, with a robust evidence base to monitor its application, and it needs to hold the same importance for practitioners as clinical guidelines do.

Please take the time to visit Angela’s blog and read her post.

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