Avoiding a hierarchy of equalities

There was a major general election announcement over the weekend that focused on mental health policy. Whilst this is great news in itself, I’ll bet someone, somewhere, has written that there should be an equivalent for people with learning disabilities, or for people with sensory impairments, or for carers, or for older people with x condition etc. etc.

This is not where we want to be.

As I’ve written before:

Whilst there are arguments which could be made for each [impairment group requiring something separate], 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 the absence of an overarching disability rights and equality framework, what we end up with is a hierarchy. In such a hierarchy, mental health is currently doing (relatively) ok, but learning disability less so. And if learning disability ends up with a new cross-government strategy then what about… and so on. Goodness knows what happens if you’re a person who happens to tick more than one box.

The point can also be extended to other equality groups: there is common cause, for example, in closing the gender pay gap and the disability employment and pay gaps (as exemplified by the nonsense suggestion that people with learning disabilities should be paid below the national minimum wage).

Insteaf of separate policies we should be calling for a reignited overarching disability equality strategy, which builds on the heritage of the Life Chances report, the Independent Living Strategy and Fulfilling Potential. Underneath this could easily lie dedicated action plans and analysis that relate to particular impairment groups, and so still taking account of the specific barriers some groups face. Such a strategy would clearly link to a general equalities strategy, showing common cause across all protected characteristics. This should all be backed by a strong central government presence, including through a significantly rejuvenated Office for Disability Issues, through the Government Equalities Office or, perhaps, through proper resourcing and respect for the Equality & Human Rights Commission.

By avoiding a hierarchy of equalities, the common cause of everyone will be improved.

Public services: only a means to living full and active lives

GYA

I’m involved with the Get Yourself Active campaign and recently wrote a blogpost for it, which is reproduced below. There’s also a fantastic post by Anne Beales of Together UK (on small steps and grand plans) and from Leanne Wightman (who is doing a great job of running the whole project) on the opportunity of Get Yourself Active. You can follow Get Yourself Active via @GetYrselfActive

There were some headlines recently about how people were using their Personal Health Budgets. Concerns were raised about whether items like games consoles, a summer house and satnavs were the best use of public money, with the inevitable calls for resources instead to be focused on traditional ways of doing things – beds, staff, medical equipment.

A positive aspect of the debate was it provided an opportunity for people who have Personal Health Budgets and the professionals who support them to explain why they’re so important in meeting their care and support needs. Kevin Shergold, for example, highlighted:

The PHB has given us freedom to live our lives as we choose – in a way that’s sensible and cost effective. Developing a severe disability might seem hopeless, but I want people to know that it’s possible to live a good, full, interesting life when you have the right support and choice.

This gets to what I think is a vital but often unasked question: what is the point of public services and so the money that funds them?

The vast majority of people with lived experience and who have used care and support services say that they want a life, not a service. Their focus isn’t on getting a few more hours of home care here or seeing an occupational therapist there; it’s about living as full and enriching a life as possible.

Norman Kirk – a New Zealand Prime Minister in the 1970s – described it this way:

People don’t want much. They just want someone to love, somewhere to live, somewhere to work and something to hope for.

He could well have added “something to do”, because wanting to be physically active or play sport is often reported by all people, including disabled people, as a key source of general wellbeing.

The point of public services and the money that funds them, therefore, covers being a means to support wellbeing and achieve what people want to do in their lives – including being active and playing sport. We have already heard from a number of people through the Get Yourself Active project that using their personal budget in this way has changed things for the better.

This means there are three main reasons why I feel Get Yourself Active is such an important contribution:

  1.  It helps to support people who use care and support services and the professionals who work in them to recognise the value of physical activity and sport
  2.  It provides a much-needed wider focus on how Personal Budgets can be used to directly support such activity, and not just focus on traditional ways of meeting people’s needs
  3. And, by the way, it helps councils and their partners meet the general wellbeing requirements of the Care Act.

If this leads to more stories about how Personal Budgets are being used to fund exercise classes, gym memberships or being involved sporting activity, I for one won’t be disappointed. It will mean that public services are doing their job well.

 

Even in 2015, disabled people still disproportionately excluded from the internet

Source: Office for National Statistics
Source: Office for National Statistics (pdf)

Here at arbitrary constant we have previously been interested in internet usage statistics, particularly when it comes to disabled people. In June 2012 we reflected that half of all people who have never used the internet are disabled people. Where are we now?

The latest ONS internet usage statistics are out, and things look like they’ve only moderately moved in a positive direction for disabled people.

Overall, the number of people using the internet continues to increase: 85% of all adults had used the internet in the last three months (to March 2015), an increase of 1% since last quarter.

Some 11% of adults (5.9m people) have never used the internet (to March 2015). This is a reduction of 6% since March 2011, which remains encouraging.

Of these 5.9 million adults who had never used the internet, 3.0 million were aged 75 years and over. This represents 33% of people aged over 75. Similarly, 3.3 million disabled adults had never used the internet, which represents 27% of disabled adults.

In June 2012, 34% of people over 75 and 34% of disabled adults hadn’t used the internet. Thus, there has been a 4% and 7% increase in the number of people over 75 and disabled people using the internet respectively. Nevertheless, it remains the case that over half of all the people who have never used the internet are disabled people.

This is made clear in graph at the top of this post, which shows the proportion of non-internet users depending on whether they’re a disabled person or not over the last two years. Thus, whilst things are moving in the right direction, and consistently with, say, people aged over 75, disabled people are still disproportionately failing to reap the benefits of the internet, even in 2015.

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.

A brief thought on disability in A Theory of Everything (updated)

Theory of EveythingTo the cinema to watch A Theory of Everything.

The perspective on disability the film brought was, I thought, excellent. It explicitly included reference to the impact Professor Hawking’s impairment had on his life and the people around him. From a practical view it showed the adjustments the Hawkings had to make in their lives, and the importance of good support that came from a range of different people.

Most satisfyingly, the film clearly captures the fact that Professor Hawking realised his ambitions and what he was capable of irrespective of the barriers – physical, attitudinal, practical – that could have prevented this.

This is perhaps best demonstrated in the sequence following his pneumonia in Bordeaux. A doctor proposes a tracheotomy, meaning Professor Hawking will not be able to speak; feeling that Professor Hawking may not survive a journey back home the doctor asks Jane Hawking to consider ending her husband’s life. Jane refuses and instead finds a way that means Professor Hawking can communicate in a different way. Eventually, of course, he speaks using a synthesized voice – something probably as closely associated with him as black holes.

Without necessarily recognising it, A Theory of Everything provides one of the best representations of the Social Model of Disability I can remember seeing.

(From a film point of view, I think Eddie Redmayne as Stephen Hawking and Felicity Jones as Jane Hawking are fantastic. If the Best Actor awards are a straight fight between Redmayne and Benedict Cumberbatch (for his role as Alan Turing in The Imitation Game) then Redmayne should win hands down. Put simply: Redmayne is Hawking, whereas Cumberbatch is Cumberbatch being Turing.)

Update: The Washington Post shares similar thoughts regarding the film’s portrayal of disability (via @angelamatthews4)

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.

.@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

 

 

Should the #ILF close? Yes. But… (updated)

It’s not efficiencies. It’s not bloated public spending. It’s disabled people not being supported to meet the most basic elements of day-to-day life – getting out of bed, making a cup of tea, or going to the supermarket.

I’ve immodestly quoted from a post I wrote over 3 year ago on the Independent Living Fund, when it was announced it was closed to new applicants. 6 months later, I wrote another post after it was officially announced ILF was to close from 2015, noting responsibility was likely to fall to those well known cash-rich organisations, local councils.

Today, a court of appeal bid to overturn the abolition of the ILF has been approved. I haven’t seen the full judgment, but it seems to cite both the Equality Act (and great work from the EHRC for intervening to this effect) and that the decision to close the Fund didn’t take account of the flavour of consultation responses.

This is good news.

It doesn’t solve the problem, though, of what to do with the Independent Living Fund in the long term.

For me, the definitive report on what to do with the Independent Living Fund was written in 2006 by Melanie Henwood and Bob Hudson. It notes the peculiar history of the ILF: set up in 1988 as a transitional arrangement, a related new fund created in 1993, the original fund closed to new applications but replaced by an extension fund, all meaning there have actually been two funds operating in parallel since 1993. The report also highlights the huge number of considerations that have to be taken into account when doing anything with the ILF, not least of which is recognising the vital support it provides to 19,000 people.

And it also notes the ILF is anomalous in the long term, and that it continues to account for a large amount of social care expenditure whilst operating to different rules and remits that are incongruent to mainstream social care. It also notes ILF can result in inequity, unaccountability, duplication, arbitrary decisions and major confusion.

As such, the report concludes the ILF should close.

I agree.

But…

In closing the ILF, there are a number of points and principles which must be observed, and that at a minimum are:

  • Any transition from ILF to other funded support should be slow and steady. (In the 3 years since DWP announced the closure of the ILF in 2015, I think very little activity could be detected)
  • The money people received through ILF should be protected, and most definitely shouldn’t be swallowed up by local authority budgets
  • The better parts of the ILF (such as a national, portable system) should influence the new location of the money, rather than these being lost.

The world since Henwood and Hudson wrote their report has changed, not least in the considerable cuts we are seeing in social care and the wider health and welfare reforms. But shifting the principles and support of the ILF into the main provision of social care is still the best thing to do, as long as the minimum points above are met.

The DWP’s original attempt at closing the ILF clearly didn’t do this; the motivation was instead to cut money, and the court of appeal has rightly picked them up on it.

Now, though, there is a chance to look again at this properly. Hopefully the DWP will do this, and do it:

  1. With people from the Department of Health working on the Care Bill and the Integration Transformation Fund
  2. With people driving the personalisation of health and social care
  3. Most importantly, with the people who will be affected by the change.

Update: the full court of appeal judgment is here. It indeed uses the Public Sector Equality Duty as the basis of quashing the original decision.

Integration Transformation Fund: Robbing Peter to pay Paul?

Despite what my wife says and what my schoolteachers used to say, my natural state is not one of being a pain in the arse.

I’m at risk of seeming like this, though, when it comes to the integration in health and social care.

I say this for two reasons:

  1. Last week, I blogged to note that integration in mental health hasn’t had the most positive effect on personalisation, and to ask how we can work to ensure the same doesn’t happen more generally
  2. After reading the most recent announcement on the Integration Transformation Fund (see here – pdf) I’ve noticed that part of the Fund in 2015/16 will be made up of c£220m of Disabled Facilities Grant funding and £130m Carers’ Breaks funding.

We knew that the Integration Transformation Fund wasn’t going to be new money, and we knew Paul (aka integration of health and social care) needs the money. But Peter (aka disabled people in their inaccessible homes and carers) isn’t exactly rolling in it at the moment.

Just to prove my wife and schoolteachers wrong (always a strong motivation, that), let’s end on two positives:

  1. Integration across health and social care is absolutely something to aim for, for all the reasons people highlight (including the money and the currently artificial divide between health and social care that affects people more than it affects budget lines)
  2. Without a doubt the most successful integration will be done at the level of the individual, for example (but not only) bringing together Personal Budgets and Personal Health Budgets. As much as possible should therefore be done to enable this (but without, I’d suggest, nicking money from where there already isn’t very much!)