On the Disability Rights Movement: how to paint the picture that needs to be painted?

Many, many posts over the last 5 years have highlighted the considerable debates going on regarding disability issues (welfare, employment, media portrayal etc.), as well as the place of disability itself within wider agendas (poverty, rights, legislation etc.)

And many various posts in the last few months have discussed both fundamental debates about the underpinnings of disability (‘sickness’ and ‘disability’, questions around the social model, the unity or separateness of different impairment groups etc.) and the current state of the Disability Rights Movement itself[1].

Pulling all of this together, we can see the Disability Rights Movement to have lost direction, become narrow and not at all cohesive compared to where it has previously been.

I’ve been thinking a lot about this and what can be done about it. With so many fundamental questions, my feeling is it’s difficult to draw any kind of overall picture that might have an element of cohesion or consensus behind it. Without such cohesion or consensus, any attempts at future improvement are much less likely to be successful. Trying to draw such a picture is, I think, what the calls[2] for a Disability Rights Taskforce have been driving at: the establishment of a process that can explore a wide range of questions that are of different orders.

A Disability Rights Taskforce would therefore be how we can paint the picture that needs to be painted. To this end, we might think of the job of any Disability Rights Taskforce to be as follows:

Disability Rights Taskforce

By having such a process and being explicit about the different levels of issues to consider, I think we can give ourselves the best opportunity to create a cohesive Disability Rights Movement for the 21st century. If we move too quickly to the questions of strategy or tactics without considering the principles these need to be based on, we would run the risk of not creating a 21st century Disability Rights Movement that can build on and learn from the successes of the 20th century Disability Rights Movement.

Two questions flow from this:

  1. What do you think?
  2. Who do we need to persuade to make this happen?

Notes:

[1] – There have been many posts on these topics. The ones that have informed my own thoughts and feelings are this are Lorraine’s, Jenny’s, Neil’s, Rob’s, and Mark’s.

[2] – Neil first mentioned a Disability Rights Taskforce, building on a previous idea about a commission on the future of disability rights in Britain.

The disability rights agenda: too narrow, possibly lost, or both?

I fear we’re in danger of the disability rights agenda being too narrow, possibly lost, or even both.

I say this because of the following 8 impressions, which are by no means comprehensive:

  1. The emerging Green Paper from the Department of Health seems to be focused primarily on people with learning disabilities or autism [1]
  2. A related blogpost (which happens to be from my employer) calls for a progressive learning disability agenda across the sector and society that values “rights, independence, choice and inclusion for ALL people with learning disabilities” [my emphasis]
  3. Preserving the Independent Living Fund is presumed to be the same as preserving independent living, when I suspect in practice campaigning attempts will (if successful) preserve funding levels around individuals specifically related to care and support
  4. Welfare reforms and resulting campaigns have focused on specific issues like the Work Capability Assessment and who provides the assessment service, or the Bedroom Tax – both largely from a deficit-based, medical model perspective). There has been comparatively little focus on employment support for disabled people or what housing options are available
  5. There has been very little broad campaigning action beyond those interested in higher education on the proposed changes to the Disabled Students’ Allowance
  6. Lobbying and campaigning regarding the Children & Families Act has been largely confined to children’s charities and SEN-related organisations, and doesn’t seem to have reached the broader disabled people’s movement
  7. Disability hate crime appears to have dropped off the agenda
  8. Anything relating to “people with mental health problems” largely remains a separate consideration to issues regarding “disabled people”.

There are some brighter spots, of course: the Care Act (albeit “only” in the sphere of social care) and positive attempts to mobilise the “disability vote” are two.

But, whilst there are arguments which could be made for each of the things listed above being separately needed, to my mind there is no overarching framework within which all of them hang together. There is no agenda around which all people with a commitment to disability rights and equality for all disabled people can coalesce.

In this context, the apparent disappearance of the Office for Disability Issues, the most recent, relatively lacklustre attempt at any sort of disability policy agenda (Fulfilling Potential), and the loss of whatever momentum there was from the Paralympic Games, are all major causes for concern. Irrespective of how effective they were, they represented the last political, policy and institutional bases of the disability rights agenda.

What to do? Clearly, we need to wrestle back a disability rights agenda into the political sphere. There are at least two active suggestions as to how this can be done:

  1. Establish a Disability Rights Taskforce after the next general election
  2. We should consider disbanding the Department for Work & Pensions and shift to an approach that works on a themed basis that more specifically has responsibility for a wide-ranging disability rights agenda, e.g. a Department for Inclusion.

Notes:

[1] – I haven’t included any reference to the LB Bill because I believe its intention is for it to apply to all disabled people, not just to people with learning disabilities.

Why we need a new Disability Rights Taskforce

Neil has called for a new Disability Rights Taskforce after the next general election[1].

He is right to do so.

Neil’s and many other people’s reflections on the narrowness[2] of Labour’s thinking when it comes to “policy proposals” affecting disabled people’s lives shows a clear need for such a Taskforce in purely political terms.

But I think there are at least two other bases on which the need for a new Disability Rights Taskforce rest: from the point of view of policy and legislation, and from the perspective of institutions.

Policy and legislation

The last fundamental, overarching and meaningful piece of disability policy is made up of the Life Chances of Disabled People report, published in 2005, and from which there is a direct line to the Independent Living Strategy[3] in 2008.

Other elements of disability policy have of course been published since then – most notably Fulfilling Potential (a discussion paper was published in 2012, “next steps” in 2012 and “the discussions so far” in 2014), the Disability and Employment Strategy at the end of 2013, and the Special Education Needs and Disability parts of the Children & Families Act. There has also been broader policy that has disproportionately affected disabled people, namely welfare reform and reforms to the health and social care system. We have also seen the UK adopt (with some opt-outs) the UN Convention on the Rights of Persons with Disabilities (UNCRPD) [sic] in 2009.

But none of these have really and meaningfully either looked across all aspects of disabled people’s lives (with the exception of UNCRPD) or led to co-ordinated and concerted effort (at least, in a positive direction).

And, thanks to Jenny Morris, we have a good, independent picture[4]  of what progress has actually been made towards the vision set out in Life Chances and the Independent Living Strategy. You probably don’t need me to tell you how it’s gone, though “pretty crap” would cover it nicely.

Institutions

It’s more than “just” policy and legislation that’s the problem here, though: there are institutional factors that are having a significant impact on the drive to equal life chances for disabled people.

If it’s possible, let’s put to one side the financial crash of 2008 and the austerity that’s been justified because of it. Even without the money situation, there has been a significant shift in what people expect from public services and how those public services are delivered. The post-war settlement is very unsettled, and what this means for disabled people is as valid a question as it is for other groups.

And specific institutions that supported the disability equality agenda have disappeared or effectively become defunct: the Disability Rights Commission closed in 2007 and is one constituent part of the struggling Equality & Human Rights Commission. The Office for Disability Issues appears to exist only in name at the moment, and the role of Minister for Disabled People continues to be a junior ministerial role with other responsibilities (including child maintenance or health and safety) that is often a stepping stone to other things[5]. If any current institutions “own” the disability equality agenda, it’s two we probably wouldn’t want anywhere near it: the Department for Work and Pensions and the Department of Health!

What next?

If the political, policy and legislative, and institutional bases of the disability equality agenda are all effectively missing, what do we do? To my mind, the suggestion of a new Disability Rights Taskforce in 2015 is a way to answer this question in the broadest possible sense.

Notes:

[1] – If you haven’t already it is well worth reading the final report of the 1999 Disability Rights Taskforce (pdf)

[2] – Call me old-fashioned, but the 12 pillars of Independent Living covered what disabled people want pretty well, didn’t it? For a more modern take, Neil Crowther’s “Refreshing the Disability Rights Agenda: a future imagined” is tremendous

[3] – It’s telling, to me at least, that it isn’t easily possible to find a copy of the Independent Living Strategy anywhere online

[4] – It’s also telling, to me at least, that this sort of progress review had to be done independently rather than, say, by government. There used to be an Independent Living Scrutiny Group, but that was, of course, disbanded in 2013

[5] – Since 2005 I reckon there have been 7 Ministers for Disabled People, including 4 since 2010.

When is a policy impact assessment not a policy impact assessment?

Here’s a good question: when is a policy impact assessment not a policy impact assessment?

Answer: when you’re the Prime Minister around 10 months out from a General Election and want something to say about helping families.

This morning, as part of a suite of announcements related to families, the Independent is reporting David Cameron wants:

all government departments will have to assess the impact of policy on “supporting family life”. The assessment will sit alongside similar current tests for cost-effectiveness, equality and the environment, and Mr Cameron stressed that if they failed, they would “not be allowed to proceed”.

All very laudable, of course. But here’s what David Cameron had to say about equality impact assessments in a speech to the Confederation for British Industry in November 2012 (as noted by Neil Crowther):

We have smart people in Whitehall who consider equalities issues while they’re making the policy. We don’t need all this extra tick-box stuff… So I can tell you today we are calling time on equality impact assessments.

Today’s family impact assessment therefore begs at least 2 further questions to the title of this post:

  1. What’s the difference between families and equality?
  2. Are the people in Whitehall dealing with families stuff less smart than the people dealing with equalities stuff?

.@neilmcrowther on assisted dying / voluntary euthanasia

At this point in time – and by this I mean in terms of how society currently thinks of and treats disabled people – I have a very firm, personal objection to assisted dying / voluntary euthanasia.

Such an objection extends to thinking it is entirely the right approach to build alliances with other organisations, including faith-based ones, with whom I would ordinarily have no natural affiliation but who also oppose assisted dying / voluntary euthanasia.

The entry of some religious voices into the assisted dying / voluntary euthanasia debate, prompted by current attempts to move assisted dying onto the statute book, has led to much debate.

Generally speaking, I find coverage of policy and politics in the UK dispiriting, mainly because of how ill-informed and binary it is. This is true for pretty much all topics, but especially so when it comes to assisted dying / voluntary euthanasia.

Very rarely are points of view expressed at length from people who actually know their apples with regard to assisted dying / voluntary euthanasia and its policy, legal and moral context/implications given any space.

To this end, I have found Neil’s 3 posts (so far) on this topic truly terrific. They are a welcome, balanced, informed and thoughtful antidote to much else we’re currently subjected to on assisted dying / voluntary euthanasia.

His posts also express almost exactly my own views on the issue, and it is with this disclaimer I commend Neil’s posts to you:

  1. Why there should be no right to assisted dying without the right to assisted living
  2. Killing people with kindness: Why the passing of the Assisted Dying Bill will make disabled people unsafe in our society
  3. Signal failure: Law as social signals, deliberate or otherwise

 

 

On Southern Health and Connor Sparrowhawk’s preventable death #JusticeforLB

Connor Sparrowhawk – or Laughing Boy, LB, as his mum called [1] him on her blog – died in the ‘care’ of Southern Health NHS Foundation Trust at their Short-Term Assessment and Treatment Team (STATT) unit on 4 July 2013. That is, an 18-year-old died [2] whilst in an institution specifically designed, commissioned and paid to support him and keep him safe.

An independent inquiry by Verita into Connor’s death was published on 24 February 2014.

The conclusion of the independent inquiry is unambiguous:

“We conclude that the death of [Connor] was preventable… We found two broad areas where [Connor’s] care and treatment had failed significantly: his epilepsy care and the overall care provided by the unit.

“The failure of staff at the unit to respond to and appropriately profile and risk assess [Connor’s] epilepsy led to a series of poor decisions around his care – in particular the agreement to undertake 15-minute observations of his baths. The level of observations in place at bath time was unsafe and failed to safeguard [Connor].

“… The unit lacked effective clinical leadership and they operated a team-based approach in which no individual/s held the responsibility for ensuring that the care and management of [Connor] was appropriate and coordinated effectively. The impact of this was that standalone key safety decisions such as those pertaining to bath time observations were not validated by other professional colleagues.”

Within this inquiry’s findings there are so, so many issues and questions about the ‘care’ that Southern Health ‘provided’. These have been highlighted and explored already by others, including @GeorgeJulian, @thesmallplaces, and @indigo_jo.

In the rest of this post are shared some reflections on themes of this tragedy [3] that stand out for me. Throughout, it is vital to remember that this was a unit for a maximum of seven in-patients and there were five at STATT at the time Connor was there.

Epilepsy

Southern Health demonstrated a complete lack of understanding of epilepsy.

Ask a layperson about epilepsy and they’ll mention “fits” or “seizures” and talk about driving and baths. Look at the most basic guidance from organisations like NICE or Epilepsy Action and they will tell you “around one in every four people with epilepsy has learning disabilities [and] half of all people with learning disabilities has epilepsy”.

And yet Southern Health observed Connor less frequently in the bath (every 15 minutes) than when he was just around the unit (every 10 minutes). There was no record about why 15-minute observations were considered to be appropriate. The practice that Southern Health had written down was unsafe – e.g. waiting 10 minutes to contact emergency services if Connor experience a seizure, when NHS advises this should be no more than 5 minutes. They ran out of epilepsy medicine on 30 March. Only 3 of 17 members of unit had had epilepsy training between October 2010 and August 2013. Worse, S11, who undertook one of the first risk assessments of Connor when he was admitted to the STATT, had attended epilepsy training on 13 February 2013 (paragraph 6.76), i.e. just five weeks before Connor was admitted to the STATT.

There was a complete lack of engagement with Connor’s epilepsy and its relevance to his presence at the unit. There was no epilepsy profile, no medical review, no comprehensive care plan, no epilepsy pathway in operation in Oxford, and epilepsy was not part of Connor’s risk assessment. It was known that Connor enjoyed taking long baths, but yet no specific risk assessment was undertaken on this topic.

There was contradictory information about whether Connor had recently had a seizure. In parts of their ‘care’ of him, Southern Health thought he was seizure free, and yet had done at least two things that indicated they thought he had had a seizure whilst at the unit (epilepsy sensors and moving Connor to a downstairs bedroom).

Staff and ‘leadership’

One (S14), possible two (S14 and S5) could be seen to have been doing their job and possibly something beyond that during Connor’s time at the unit. Everyone else was not just not doing their jobs, but actively seeming to not be doing it. In concluding that Connor’s death was preventable, Verita note that staff at the unit had both the knowledge (paragraphs 6.81-6.83) and the opportunity (paragraph 6.84) to stop his death happening.

Consider the sheer number of people involved in Connor’s ‘care’, and yet no comprehensive assessment or plan was put in place. At a short-term treatment and assessment unit, there was nothing short-term about it, there was little treatment beyond medication and there was insufficient assessment done [4]

There was no clinical leadership at the unit – not just relating to Connor (though this is obviously most important in this case) but to everyone. There is no identifiable responsibility, accountability or professional conduct.

S1 and S3 are particularly shameful in their behavior [5].

Paragraphs 6.45-6.46 demonstrate, in S1, someone who takes absolutely no personal responsibility for what happened.

“What I’m telling you is yes, I was involved at that time, yes, I had knowledge of all those development, yes, I was party to those conversations, but it’s not the case that at any point in that particular instance I was required to say well I think this…”

Paragraph 9.24 sees S1 sharing more thoughts on what they thought their responsibilities weren’t:

“What you’re asking me is if there is any central document where everything is put together; I don’t do that. I don’t sit down and write an entire document about what every other professional is doing because that wouldn’t be appropriate for me to do.”

Finally, paragraph 9.36 shows the pressures S1 was working under:

“It certainly threw me. It threw me out of my stride, I didn’t know what was happening and it took me a while to recover from it.”

This, remarkably, is S1’s description of a CPA meeting that didn’t follow the “set format”. (S4 shared S1’s disquiet: “[I]t seemed that this was becoming a person-centred meeting” (paragraph 9.41). Heaven forfend!)

Actually, what these quotes show is senior clinical leaders who have no grasp of anything happening within their own unit.

S3 – whose engagement with the whole situation is an embarrassment to any professional and, frankly, negligent (see “engagement with the family” below) – didn’t follow up on basic actions agreed at the Clinical Team Meeting of 24 June (paragraphs 8.8 and 8.9).

Finally [6], Connor probably should never have been at the unit in the first place; what’s worse, at least two professionals – our friends S1 and S3 again – thought he should have been discharged but took no personal responsibility, despite being in positions of authority, to do so (paragraphs 10.8 , 10.9 and 10.16). Page 81 of the report is the first place where any mention of Connor’s possible discharge from the unit is mentioned.

As Verita’s report finds (F19):

“The unit lacked clinical leadership, in particular from S1 and S3.” [7]

(See also @ChrisHattonCEDR’s post on Bystander Apathy).

Engagement with the family

The first mention of Winterbourne View [8] in the report relates to the Department of Health’s report into that scandal, noting that “families were often not involved” in the care of their family members, and that this “is sadly a common experience and totally unacceptable” (paragraph 7.2).

Southern Health’s staff didn’t just not engage with Connor’s family; the report indicates they actively chose not to engage with them. For example, “Trust staff had little or no prior knowledge of [Connor], so they should have found out more about his family’s understanding of his needs” (comment after paragraph 7.11). Furthermore, there was “no evidence that the experience and knowledge of [Connor’s] parents were captured at the beginning of his admission or included as part of his risk assessment and care plan” (F13).

Actually, Southern Health staff’s approach to the family was adversarial. Read in paragraphs 7.17-7.18 how S3 talked to the family about whether they could visit or not; read in paragraph 7.19 what S3 had to say when Connor’s younger brother wanted to visit the person he’d shared a room with for his whole life; read in paragraph 7.20 how a member of staff lied directly to Connor’s parents about whether Connor wanted them to visit; read also in paragraph 7.20 how S3 thought (a) it was reasonable to put am 18-year-old to bed at 7pm and (b) contradict their own unit’s visiting hours in order to deliberately prevent Connor’s parents from seeing their son; read in paragraph 7.31 how S3 reduced an experience Special Educational Needs teacher to a distressed state through their interrogations.

But this isn’t just a question of tone. The most crushing element of the impact of unit’s staff deliberately sidelining Connor’s parents is paragraph 6.60 – that Connor’s family would “supervise him, keeping the door open and talking to him” when he was in the bath; that there was “no evidence that staff knew about the way [Connor’s] parents supervised his bathing”. That staff had no idea how his parents had kept him safe to date [9].

Southern Health

Where to start with Southern Health as an organisation? Let us begin with what the Verita report has to say directly.

Paragraph 2.4 notes that Southern Health has a range of policies and guidelines that provide the framework within which their ‘care’ is provided. Throughout – see paragraphs 5.29, 5.32, 5.56, 5.60, 5.70, 6.3-6.5, 6.13, 6.17, 6.29, 7.5, 8.11, 9.20 – we see that this paperwork was only that, paperwork.

Staff interviewed by Verita, as part of an inquiry into the death of someone in their ‘care’, hadn’t been given relevant paperwork, such as the guide for interviewees and the terms of reference, before their interview. This is surprising, because events during the Inquiry (on which more later) would suggest that Southern Health’s main concern in the inquiry phase was its own reputation and protecting its staff.

Most damagingly, Verita received “substantial additional documents” relating to the review (paragraph 4.9) on Weds 19 Feb – less than three working days before the report was published, after the draft report had been sent to Southern Health, all relevant people and Connor’s family. What were these documents? Why were they sent only then? (See FOI request later)

(We must also ask: where are commissioners? The only mention I can see in the report of local authority commissioners is in paragraph 11.15; no mention I can see is made of the relevant Clinical Commissioning Group (CCG).)

CQC inspections

Now let us consider what the statutory regulator of health and social care services had to say of Southern Health.

The Care Quality Commission visited the STATT Unit on 16, 17 and 23 September 2013, two months after Connor died. Their first inspection found that the Unit was not compliant in any of the 10 standards. Of the 10, six had enforcement action taken, including on (a) Care and welfare of people; (b) Assessing and monitoring the quality of service provision; and (c) Records.

The inspection report notes the following:

People did not always experience assessment, care, treatment and support

Remember, this is in an assessment and treatment unit.

“Whilst we were there, up to four staff mainly worked on administrative tasks within their office… There appeared to be an impoverished environment with little therapeutic intervention of meaningful activities to do.

Assessment and Treatment Units cost, on average, £3,500 per person per week.

[T]he emergency oxygen was significantly out of date… We inspected the emergency equipment [the defibrillator and oxygen cylinder], and found some of it wasn’t working.

The equipment wasn’t working because there was no battery in the defibrillator, and the oxygen cylinder was out-of-date. Remember, this is two months after someone had died at the unit in circumstances that are likely to have required both a defibrillator and oxygen.

Whilst much audit work was undertaken, there was little that impacted positively and directly on the care of the people that were being looked after on the STATT unit.

Paperwork.

The provider did not have an effective system in place to identify, assess and manage risks to the health, safety and welfare of people using the service[.]

Again, remember this is two months after a lack of appropriate risk management led to a preventable death at the unit.

By 16 December, a follow-up inspection by the CQC found three of the areas that required enforcement action had met the standard. These were (a) Cleanliness and infection control; (b) Safety and suitability of premises; and (c) Safety, availability and suitability of equipment. I.e. those actions that required practical changes only, rather than cultural or attitudinal ones

All CQC reports on STATT can be found here.

Verita’s report

Verita should be congratulated on an excellent and rigorous independent report into the circumstances of Connor’s death. People familiar with the language of Serious Case Reviews and similar inquiries will note the obvious difficulties that Verita had with Southern Health in bringing together this report. For example, paragraph 1.12 notes they were “directed by the trust” to put in place anonymisation in the report that “makes it difficult to read”. Similarly, paragraph 4.2 notes that some interviewees for the report didn’t receive relevant paperwork before they were interviewed.

Questions, questions and Freedom of Information

Verita’s report covers the period until 4 July 2013. Notwithstanding any criminal investigation by the police, any professional standards investigation by any representative body, or any Southern Health staff disciplinary proceedings [10], in my view, there is need for a second inquiry into Southern Health’s actions after 4 July, inquiring into a range of issues. Those issues include, but aren’t limited to:

  • Their initial response to Connor’s death
  • The steps they have taken with regard to staff involved in the unit
  • Their relationship with organisations that commission their services
  • Their engagement with Connor’s family following his death
  • Their actions in relation to the commissioning, interviewing, drafting and publication (including permission to publish) of Verita’s independent inquiry
  • Information relating to any public relations or communications advice they have received since 4 July.

Freedom of Information requests will be submitted to Southern Health to explore these issues.

#justiceforLB [11]

(For more information about #justiceforLB, the summary is here and all information and reaction on Twitter is channeled through @JusticeforLB.)

Notes

These additional notes have been separated  from the main body of the post above because they are personal reflections only.

[1] – Past tense. In the minutiae of the death of a loved one, these small things are, to me, the most terrible. I will be able to kiss my children tonight, to speak with them. These opportunities have been taken away from Connor’s family.

[2] – When does “died” become “manslaughter” becomes “killed”?

[3] – “Tragedy” implies something inevitable. We know what happened to Connor, as we know what has happened to hundreds of people who have died by indifference in ‘care’ settings before. What, therefore, of calamity, devastation, evasion, abandonment, dereliction, neglect, crime?

[4] – STATT didn’t do what it said on the tin. It did nothing.

[5] – Collective noun for staff at Southern Health: “An abandon of S’s”.

[6] – What if? what if…

[7] – What disciplinary action will S1 and S3 face? Will they be referred to their professional bodies?

[8] – “Post-Winterbourne”. We’re not post- anything.

[9] – What of those people who don’t have family, or advocates, or people who can look out for them, and speak for them if they wish? What of them?

[10] – Yeah, I know.

[11] – What could “justice” possibly mean?

Obama on the process of social change

This just about perfectly sums it up: Barack Obama on the process of social change.

[I]f you’re doing big, hard things, then there is going to be some hair on it—there’s going to be some aspects of it that aren’t clean and neat and immediately elicit applause from everybody. And so the nature of not only politics but, I think, social change of any sort is that it doesn’t move in a straight line, and that those who are most successful typically are tacking like a sailor toward a particular direction but have to take into account winds and currents and occasionally the lack of any wind, so that you’re just sitting there for a while, and sometimes you’re being blown all over the place.

(From this superb piece by David Remnick on Obama in the New Yorker.)