Mencap and a million voices of learning disability

I’ve recently changed my mind about something important and I can’t decide if the reason I’ve done that is because I’m being flaky, or if its because a situation has changed and after a careful review of this new reality I’ve come to a different conclusion.

Well the conclusion I’ve come to is that Mencap, in its current form and structure and with its current leadership, is no longer likely to play a significant role in improving the life chances, rights and well-being of people with learning disabilities in the UK. Now don’t get me wrong, Mencap and the people who work for it do a lot of very good things, I believed that before I changed my mind and I believe it now. But strategically Mencap has navigated itself into a position of dependency on the government and in doing so has become powerless to advocate for any kind of meaningful change. There are two issues in particular that underpin this dependency: the first are the massive cuts that have been made to social care budgets; the second is the sleep in crisis and the government’s unwillingness to come up with a solution.

A small but important and very personal example of the impact of the cuts was seen today in testimony to the Tozer inquest, where a local authority social care manager stated that they believed that the impact of staff shortages usually expressed itself in a reduction in the number of activities available to the people using a service. This small piece of anecdotal evidence dovetails with national data on social care funding. The chart below illustrates the gap between help needed and help received for people aged 65 and over according to income bracket.


It is important to acknowledge that this data is not specifically people with learning disabilities and that the activities that this covers only include key daily living activities such as bathing, eating and dressing. However, it gives an indication of the pressures on social care departments and so, it is perhaps unsurprising that the social care manager giving evidence at the Tozer Inquiry was quite as sanguine as they were about cuts to people’s daily activities.  This is in contrast with the Care Act 2014 which states that an authority has a responsibility to promote an individual’s well-being:


Evidence of the scale of the social care cuts is also found in the reduction in the numbers of people in receipt of a service.


The key figure there is the stark statistic, that between 2005/6 and 2013/14, there was a 27% reduction in the number of people receiving social care. Again, this data doesn’t specifically relate to people with a learning disability but it does include them. And we have to ask ourselves – how many people with learning disabilities are included in this figure? What impact have these cuts had on their lives and in the context of the requirements of the Care Act, how many have had their well-being damaged by them? Even for those who have been assessed as qualifying for a service, the impact of the cuts to social care funding and the gap between identified need and available funding is increasing rapidly as the graph below shows.


It is in this context that we need to place Mencap’s exposure both as a provider of social care services that are systemically underfunded – a situation that is projected to get far worse – and as an organisation that has had to go to the government with a begging bowl because of the liability it has incurred over the sleep in crisis. So, it is perhaps not surprising that in its Annual Report for 2017 the CEO and the Chair of the Trustees choose to focus on other stuff:


It is probably worth noting that whilst 7,500 is a lot of people, there are estimated to be over 1 million people with a learning disability in the England – so in “an incredible year, and a huge step forward as we fight for inclusion” Mencap assisted less than 1%. So, I think it is fair to say that the idea that Mencap is the voice of learning disability is hyperbole; there are over a million learning disabled voices in England and no single organisation can reasonably speak for all of them.

The Mencap report for 2017 goes on to outline just how important the sleep-in crisis is for the organisation.


The brutal reality of the sleep-in crisis is that the government is using it to keep many of the big campaigning charities in line as it continues it’s assault on our social care infrastructure.

To some extent the same is true of the cuts to social care budgets. As central government and local authorities continue to cut and expect more for less, providers become complicit in the pretence that a person’s well-being is undamaged by their combined failure to properly implement their responsibilities under the Care Act. To be fair, it is not just Mencap that has allowed itself to get navigated up a very smelly creek without a paddle. By allowing themselves to become as dependent as they have on government, most of the big charities have compromised their independence – one the key requirements for their success as campaigning organisations.

The nett effect is that politicians are able to stifle resistance to their political agendas. They can sustain the pretence that there is such a thing as a social care infrastructure on the cheap and that the well-being of people with learning disabilities has not been profoundly damaged by their actions. Because the organisations best placed to challenge them are in bed with them, trying to keep them sweet.

As for whether or not I’ve changed my position on Mencap because I’m flaky or because I’ve responded to a changing situation – who cares – it’s probably both.


A More Radical Plan

Over the last twenty four hours I’ve read a number of things that have made a deep impression on me. The first has been more of George Julian’s live tweeting. This time from the Tozer Inquest. As ever it has been profoundly insightful and revealing. It has also been a quite awesome feat of concentration and hard work. I found it exhausting just reading the tweets as they came in live. So massive respect to George for that.

One of the themes that has become apparent in George’s coverage of the inquest, and something that struck a chord with me and I suspect most of us, was how often families have to encourage providers toward a better understanding of their loved one and how often we have to advocate for the right support, whilst at the same time running the risk of being labelled difficult and problematic. And what happens once that happens? Chris Hatton summed it up powerfully when he tweeted:

“Reading @TozerInquest live tweets, thinking that if you’re a parent or a family member, if you’re a person with learning disabilities, who can you turn to? Who can you trust? Who can you rely on?”

The sad truth is that when the voice of learning disability has embedded itself within and become an integral component of a system that is barely fit for purpose and which in many cases actively undermines the rights and well-being of people with learning disabilities; then families really do seem to have no organisation that they can turn to. So, it’s not surprising that a number of experienced social workers tweeted their concern this morning.

The problem for social work is that too often social workers are put in positions where they have to defend policies and gate-keep budgets that are unfit for purpose and quite simply too small to allow them to be able to do their work without compromising the principles of their training or if they were brutally honest, their professional standards. Directors of adult social care may complain about budgets, but more often than not they will tow the government line and pretend that they are still somehow managing to meet the needs of their communities and they are not putting people’s lives, rights and well-being at risk.

Other agencies are equally complicit. The live tweeting of the Tozer Inquest yesterday made plenty of references to the quality of care and of care planning, and how the family had or hadn’t complained about one thing or another – but I don’t remember a meaningful reference to the CQC. Somehow it seemed that it was the family’s responsibility to monitor the quality of the service that was being provided to their son.

As Chris said – who can you turn to? Who can you trust? Who can you rely on? Especially if the principles of a rights based social work are being compromised by austerity, if the CQC has neither the resources nor the powers to properly monitor the quality of social care and if the charities who are supposed to be fighting for rights of their communities have enmeshed themselves within the system that is compromising people’s right.

The answer or at least the seeds of it, can be found in another tweet that I read yesterday and that unsurprisingly comes from Sara Ryan –

Well the tears keep tumbling. Maybe we may all get somewhere…

And therein, I think, lie the seeds of a different kind of future for people with learning disabilities in our country

 Maybe we may all get somewhere…

And Sara is right maybe all of us together can get somewhere. Because the key to change lies in all of our stories and in the moments of truth and reality that there are in them. So that politicians can no longer hide behind the rhetoric of their press releases and the illusions that they pedal. Whether you are a person with a learning disability or autism; a family member; or a practitioner who is committed to rights-based practice; your story holds the key to changing the current system from what it is now to something that will genuinely uphold and defend the rights of our community.

All we have to do is to create the ways for you to tell it in a format where it becomes evidence not opinion. 


The conversations at the end of a day

For me, one of the most insightful things about a day, is how it ends. Or to be a little more specific it’s the conversations we have, with the people we love, before we go to sleep. And to be fair sometimes these conversations are just a few sentences or even a text, but have you ever noticed how often they reflect our take on the day: the things we’ve done; the things we’ve enjoyed and of course the things that we are most concerned about. And if I’m honest I haven’t always given these moments the attention they deserve; “Talk to me about it in the morning”, which absolutely never happens, or “I don’t want to talk about that now, I won’t be able to sleep.” I became a parent over twenty five years ago now, and if I could give my younger self a single piece of parenting advice it would be, to never not have time for the conversations that your children want to have with you, before they go to sleep.

Mikey is no different, in the moments before he goes to sleep we’ll often talk about the day that we have had and any memorable events that had taken place. For example, if he’d been able to play a practical joke on somebody, like pushing them into the mud when they went for a walk, he will start the conversation with:

Mikey: “What happened to Laura (or Greg) (or Mummy) (or Dad)?”

Me: “What happened to Laura?”

Mikey: “She got stuck in the mud”

Me: “Oh dear, who did that was it Mikey”

Mikey:  Chuckles

Me: “Poor Laura – was that naughty?”

Mikey: “Not naughty just cheeky”

Sometimes the conversations will be about other things: like Mikey having helped me with a chore, or something that one of his grandparent’s might have done, or where he wants to go for his holiday. But in the weeks during which we knew Adam was dying the conversations went in another direction.

Me: Daddy had to go and see Adam in the hospital. He’s very poorly.

Mikey: Need to take Adam to the Church

Me: Why do we need to take Adam to the church?

Mikey: God can make him better

Me: That’s a good idea Mikey

In the weeks that followed as Adam’s heath fluctuated, with periods of improvement interspersed with sudden declines, taking Adam to the church so that God could make him better became the dominant theme of our conversations, until Adam passed away and I had to tell Mikey that he was dead. And I have to be honest, I really can’t remember how I told Mikey that, or even if it was me. But I remember that our conversations would include phrases like “Don’t like it dead” and “Don’t like it sad”. Then came the conversation about the funeral that was complicated by the fact that it meant a significant change in his routine:

Me: Daddy and Cathy and Greg and Laura and Summer baby are going to take Adam to the church so that he can live with God and God will make him happy;

Mikey: God will make it dead go away;

Me: Yes Mikey, God will make it dead go away and Adam will live with God and be happy

Mikey: OK

Me: Do you want to come to the Church with Daddy and Cathy and Greg and Laura and Summer Baby – or do you want to stay with Nanny and Grandad – and Daddy will come and get you at 5 o’clock?

Mikey: Stay with Nanny and Grandad…

I’m not sure where Mikey’s faith in the power of God has come from, it certainly wasn’t form us any of us, his immediate family. I suspect he will have pieced key ideas together from lessons he’ll have had at school and possibly a conversation we once had about church being where you go when you want to talk to God or people who are dead.

The conversations about Adam continue, although they are much less frequent now, and since the funeral and Mikey seems content that God, has indeed taken away being “dead”, and that Adam is now happy living with God. And if you’d asked me just a short while ago if Mikey had any grasp or understanding of some of the core concepts of Christian faith, I’d have probably laughed at you. Perhaps, there is something to be said about making decisions about people’s capacity at the time that they need to be made and for the conversations that we have at the end of the day.