Snippets from a study on #personalisation

Yesterday, I cross-posted a blogpost on learning from Personal Budgets for Personal Health Budgets. The learning comes from general experience, as well as from the results of a 3-year study I’ve been involved with looking at the long-term impact of Personal Budgets on users.

I opened my post as follows:

Personalisation – and Personal Budgets in particular – are making a positive difference in the lives of lots of different people of different ages and impairment groups.

I did so deliberately: personalisation seems to have been getting quite a rough deal over the last 18 months, especially since its benefits aren’t being felt equally by all groups and seems to mean less is being spent on people. Personally, I think such views conflate a number of issues, including implementation, budgetary pressures and a lack of appropriate support.

If I had to summarise my feelings, I’d say the following: there is a legitimate debate to be had about how best to ensure personalisation is implemented such that it benefits everyone equally; in my view, that’s a different debate to one that challenges personalisation per se.

Still, it’s not good enough to have these debates in the abstract, or to talk about disrupting or innovating a system to within an inch of its life without really understanding what’s going on, and the 3-year study is one attempt to explore the issues fully over a period of time (rather than a snapshot)

The full report and 5 briefings will be available soon. In the meantime, below are 3 videos which capture the stories of 3 people and the impact Personal Budgets have had for them, now they’ve been receiving them for a long period of time.

You can also see these videos with subtitles and more background / description here:

7 practical suggestions to help Personal Health Budgets succeed for everyone

This week, ahead of the publication of a joint 3-year longitudinal study with OPM and Essex County Council evaluating the impact of Personal Budgets, I sketched out 7 very practical lessons that the current Personal Health Budgets work can take from the social care arena. This is cross-posted from OPM’s blog here.

Personalisation – and Personal Budgets in particular – are making a positive difference in the lives of lots of different people of different ages and impairment groups.

This finding comes from 3 years of work ecdp, OPM and Essex County Council have done in Essex, following 29 people on Personal Budgets, the first “longitudinal” study of its kind.

Older people, people with learning disabilities and people with physical and/or sensory impairments have all reported positive outcomes from using a Personal Budget, such as:

  • Improved quality of care through increased choice and control. This included more choice and control over the providers used to deliver services, and more consistent, flexible or personalised care
  • Improved wellbeing and the ability to live a fuller life
  • Increased independence and dignity for service users
  • Increased confidence, self-esteem and sense of empowerment.

Of course the road to successful outcomes through personalisation and Personal Budgets has not always been smooth. But in recording the lessons learnt – including the occasions when things didn’t quite work and key recommendations for making these processes run more smoothly – the final report tells us how to continue to make personalisation and Personal Budgets as good as they can be.

The challenge of personalisation and Personal Budgets in social care has been considerable. It will be even more of a challenge to introduce Personal Health Budgets in the health service. It’s a challenge I have every confidence will be met though, and that will therefore make a considerable difference in the choice and control people have over their healthcare.

To help things along, here are the 7 very practical suggestions taken from the 3-year study that it would be worth those working on Personal Health Budgets keeping in mind.

  1. It’s very unlikely someone will choose to have a Personal Health Budget if they don’t know about their existence. Make sure you let them know.
  2. It is not possible to exercise choice and control if someone doesn’t know what options they have with their Personal Health Budget. Make sure you let them know their options.
  3. It is entirely possible to forget to tell someone how much money they have available in their Personal Health Budget. Don’t forget to tell them.
  4. It is entirely possible that someone can get good advice and guidance about Personal Health Budgets from health professionals. But it’s just as possible they can get that advice and guidance from someone independent. Make sure they have this option if they want it.
  5. It is possible you’ll think a website will provide someone with all the information they need about Personal Health Budgets. It really, really, really won’t. Face-to-face contact, peer support, sources of information in the local community (such as voluntary sector organisations): these should all also be part of the information mix.
  6. It is possible that holding a budget to meet healthcare needs is second nature to some people. But most likely, for the majority, it won’t be, particularly if they consider employing their own staff. Ensure support options for managing money and employing people are in place.
  7. Finally, it is inevitable that assessing someone’s needs, establishing the level of financial resources this correlates to, describing the options they have available, planning and summarising how to meet these needs, signing it all off and putting the new system into place – is a complex process with many, many complicating factors. If people know it’s going to be a complex process, they’ll probably understand. Manage people’s expectations about how long the process will take, be honest about some of the common pitfalls and reassure them it will be worth it in the end (because, as we’ve seen, it most likely will be).

#EssexUnite – a #dpulo peer-led employment programme

A few weeks ago, I wrote about Essex Unite – a peer-led employment programme run by ecdp (a DPULO based in Essex).

In partnership with Jobcentre Plus and the private sector group MITIE, Essex Uniteis a ground-breaking work experience training programme that offers unemployed disabled people the opportunity to participate in meaningful work placements.

What is unique about the programme is that it’s a peer-led programme: disabled individuals supporting other disabled individuals to achieve their aspirations and life goals.

The first week of Essex Unite has now taken place – a pre-placement week offering a number of training courses before the 16 people involved head off to 6 weeks of work experience with matched employers.

Full details of the first 5 days of the Essex Unite course can be found on ecdp’s website below:

There are a couple of things in particular to look out for. The first is this Audioboo of Leanne, one of the participants, talking about her experiences

The others are the interest that BBC Essex has taken in the programme. Dave Monk from BBC Essex will be following participants as they progress, and the first installment (in two parts) is below.

To keep up-to-date, you can follow the programme via www.ecdp.org.uk/essex-unite

*For info, I’m seconded from ecdp to the Strengthening DPULOs Programme.

Essex Unite – exciting example of a #dpulo working in employment

Though it is undoubtedly a tough environment at the moment, it’s important to highlight when there are examples of successes for DPULOs across the country. Below is news of some work ecdp – a DPULO based in Chelmsford, Essex – are doing in the area of employment, kindly contributed by their Director of Insight, Paschal Kane.

ecdp is an Essex-based organisation run by and for disabled people with a long and well established history of working to enhance the lives of disabled people within the Essex community.

In partnership with Jobcentre Plus and the private sector group MITIE, ecdp is delighted to announce a ground-breaking work experience training programme designed to offer unemployed disabled individuals the opportunity to participate in meaningful work placements to give them the drive, experience and confidence needed to get into paid employment.

The programme is called ‘Essex Unite’ and is a commitment between the partners to offer bespoke training, delivered flexibly at the right pace for 18 disabled individuals. It is an 8 week programme which will include a pre-placement week offering a number of training courses such as, how to deliver good customer service, how to develop leadership skills and how to manage health and stress levels. It also includes 6 weeks of valuable work experience, with participants being matched with appropriate employers in order to gain the right level of experience to support them back into work.

Following the work placement, individuals will participate in a post programme transition week which will include CV and job interview workshops. For three months after the programme, ecdp will continue to support Essex Unite participants to ensure that they build on their experience and capitalize on employment opportunities.

What is unique about Essex Unite is that it is a peer to peer led programme, with disabled individuals supporting other disabled individuals to achieve their aspirations and life goals.

The success of ‘Essex Unite’ depends on developing new partnership opportunities with organisations which share our ambitions to nurture talent and provide an equal chance for all. ecdp has already secured a number of work placement commitments from a variety of private, public and third sector stakeholders but there is more work to do to ensure the programme has a lasting legacy.  With ‘Essex Unite’ the goal is to develop a new model of co-operation between the public and private sector to tackle social problems at a local level. Building on the well-established principles of corporate social responsibility, ecdp believe this innovative and creative training programme will not only enhance the private and public sectors understanding of disability but ultimately lead to higher retention rates, greater productivity and better community relations.

Essex Unite milestones:

  • Breakfast Launch Event on 31st July, Cllr. Anne Brown of Essex County Council to speak
  • Participant open day – end of August (exact date tbd).
  • Work Experience Programme Start – Beginning of September

Embedding peer support in the workforce

Last week, my colleague Andy from ecdp and me gave a talk at an Adult Social Care Workforce conference. The topic was on embedding peer support in the workforce, the slides for which are below.

There were 4 key points we wanted to convey:

  1. Where services are developed and delivered by peers (i.e. disabled people / service users), the evidence suggests that these produce better outcomes for service users, and are more efficient than if provided by a local authority
  2. Peer-led services are not only good in their own right, but they provide employment pathways for service users: the Personal Budget holders of today can be the peer advisers of tomorrow
  3. Peer-led services can’t replace local authority-led or any other provider-led services: scale makes this impossible. However, they should be a part of the overall provider mix
  4. Peer-led approaches aren’t just good at the level of supporting an individual to control their care and support: they also work at the level of the community, ensuring information and experience is shared quickly and appropriately, and at the collective level, enabling disabled people’s user-led organisations to understand how well the provider market is meeting service user demand and conveying this intelligence to commissioners.

My good Twitter friend @kmachin highlighted some other research and work going on around peer support – there is certainly a growing evidence base. I’ll post updates / comments on this post to share this info when I have it.

Speech to Leicester CIL about disability hate crime

Leicester Centre for Integrated Living – a disabled people’s user-led organisation deservedly with one of the longest and best reputations – kindly invited me yesterday to give a speech to their Annual General Meeting on the topic of disability hate crime.

On the back of the EHRC’s “Hidden in Plain Sight” report on the same topic, which was published on Monday, the timing couldn’t have been any better. I’ve thus reproduced the main body of my speech below, which conveys the main points I’d want to about the topic.

All feedback and debate welcome. It made for an interesting discussion, especially given there were police in the room listening to it…

Disability hate crime: the current picture

It is customary to tell the story of a particularly harrowing case of disability hate crime in order to demonstrate the extent of what can be done to one human being by another because of their impairment.

I’m not going to do that.

For me, any incident in which someone is subjected to any kind of poor treatment because of their impairment, no matter how great or small, is one incident too many.

Anyone who is shouted at across the street.

Anyone who is taken advantage of by their so-called friends.

Anyone who is subjected to a series of incidents that are never dealt with because they’re considered by the authorities to be “anti-social behavior”.

These are all incidents of hate crime.

And they should all be treated and reported just as seriously as some of the better-known cases that have made it into the newspapers and onto the television news reports.

Levels of reporting

If we know that hate crime is much more widespread than the authorities, newspapers and others would suggest, what is the true level of disability hate crime at the moment?

At a national level, the most recent figures said there were 1,569 reported incidents of disability hate crime. This was 3% of all hate crimes reported that year.

By way of comparison, hate crimes motivated by someone’s sexuality made up 10% of all hate crimes, and crimes motivated by someone’s race made up 82% of all hate crimes.

To put it another way: approximately 15% of the population – people from BME backgrounds or who are LGBT – suffered over 90% of hate crime incidents, whilst nearly 20% of the population – disabled people – suffered just 3% of hate crimes.

Of course, we shouldn’t compare these numbers in order to determine who is the worst off when it comes to hate crime, and I don’t mean to do this by my comparison.

But what these figures tell you, and what every bit of research about disability hate crime that has ever been written says, is that disability hate crime is a woefully under-reported issue.

To take a patch I know well: Essex.

Essex has a population of approximately 350,000 disabled people. In the figures that were released last week there was a grand total of 18 reported hate crimes.

As part of the series of disability hate crime work we did at ecdp, we convened a focus group of 20 people to share their lived experiences.

Each person in that room – every single one – had experienced at least one hate crime incident.

It sounds odd to say it, but I am secretly pleased every time there is an increase in the numbers of disability hate crime. I will stay pleased until the levels of disability hate crime represent a truer picture of what the situation really is and what the day to day experiences of disabled people really are.

Disability hate crime: the current problems

Unfortunately, under-reporting is just the tip of the iceberg. There is a long list of issues that contributes to the current problems regarding disability hate crime and how seriously it is taken (or not, as the case actually is).

I’m grateful in particular to the work of my colleague Faye Savage at ecdp and to colleagues at the Office for Public Management for their analysis, which I lift from heavily in what follows. My friend and ex-colleague Neil Crowther has also been a leading thinker on this topic.

One set of issues relate to how the police respond to hate crime incidents. The evidence is that they don’t particularly well, for which there are 3 reasons.

The first is that the police may not think a reported incident is serious enough to make them take action. They think of issues as anti-social behavior or “low level”.

The second is that the police have some negative stereotypes about disabled people, including thinking of them as “nuisance callers”, since they often make a lot of phone calls to report the very incidents the police also considers anti-social behaviour.

And the third is that there is evidence police can doubt the credibility of disabled people as victims of hate crime. For example, the Crown Prosecution Service dropped a case involving a victim with mental health conditions because they believed that the victim would not be a credible witness.

The involvement of the Crown Prosecution Service hints at wider problems within the system. Key agencies – such as the police, local authorities, schools, the courts and others – simply don’t work together in order to tackle hate crime. Each assumes it’s the other’s responsibility, and occasionally seem to hope the issue will go away.

As the Equality and Human Rights Commission put it in their Disability Hate Crime Inquiry launched yesterday, there is a “culture of disbelief” around hate crime.

But we have to believe – because we know and have experienced it directly – that hate crime exists. And we have to believe it’s not just an issue that affects disabled people: OPM in particular has stressed how hate crime goes much wider in its effects. As they note:

The waves of harm created by hate crime have far-reaching implications beyond the victims, and strike fundamentally at social cohesion, citizenship, and even national productivity.

Hate crimes have powerful symbolic and concrete impacts that extend far beyond the physical and emotional harm experienced by victims.

Family members of disabled hate crime victims, who may not be disabled themselves, can similarly be victimised.

Other disabled people who have never experienced hate crime also restructure their lives to avoid putting themselves at risk.

Hate crimes degrade the communities in which they occur.

Disability hate crime: what the solution could look like

Given the hugely dispiriting picture that has been painted about disability hate crime, we should look to finding solutions.

Based on the work we’ve done in Essex, the recommendations of the EHRC’s Inquiry and initiatives that have worked elsewhere, I think there are 4 main components to the solution, which we call the USER framework.

U stands for Understanding – There is clearly a general lack of understanding of the complex issues surrounding disability hate crime. This is the case both for disabled people themselves as well as for organisations that are meant to support them and address hate crime. In order to successfully address the landscape of disability hate crime there needs to be greater understanding of all the issues that surround it.

S stands for Signposting and Support – There are very few services for disabled victims of hate crime and increasingly fewer services to direct people to those that are in place. Organisations which signpost and support disabled people when they are victims of hate crime should be widely available and well-coordinated

E stands for Education – To ensure wider change for disabled people, we believe education work should be focused on three particular groups of stakeholders: disabled people themselves, professionals and wider society.

And finally, R stands for Reporting – The core issue of under-reporting can be addressed by supporting disabled people to report disability hate crime both formally and informally. Disability hate crime falls through the gaps all too often, and third party reporting through disabled people’s organisations is one solution that (a) provides a separate space for people to discuss their issues, (b) enables people to access wider support, (c) provides a way in which people can report issues to the authorities if they wish to. Stronger processes for reporting will increase the number of investigated and prosecuted cases, and so to lead to the rise in reported incidents that will present a truer picture of the reality of hate crime.

At a local level, , the USER Framework should:

  • Ensure disabled people are at the heart of all work undertaken to address disability hate crime and consulted at every stage of development
  • Ensure greater representation of disabled people on hate crime panels, or any strategic system which replaces them
  • Encourage partnership working at a strategic level to ensure that organisations share their (sometimes limited) resources to best meet the needs of disabled people. Going forward, this will involve working with other organisations to clarify a coordinated approach to hate crime within Essex.
  • Embed a system of peer support for victims and a space for them to share their experiences; for example through both online and face-to-face forums.

More generally, it will place disabled people’s user-led organisations  at the heart of addressing the problem of disability hate crime and mean we don’t have to rely on the police and the authorities to do something about it

Conclusion

The issue of disability hate crime sometimes feels like it starts and ends with the numbers of crimes that are reported each year.

What I hope I have done is share how this is simply not the case, and that it is an issue that goes right the very heart of how we as a society perceive and treat disabled people.

I’d like to finish with a quote from one of OPM’s report on the topic, which makes the point better than I can:

By doing nothing, we are making a damning indictment of our own sense of humanity and the kind of society we want to live in.

By thinking that disablist hate crime is merely a ‘disability issue’; that the characteristics of disabled people make them inherently ‘vulnerable’; that only the police, local authorities and services providers are responsible for dealing with it, we are allowing ourselves to be comforted by our lack of culpability in doing nothing.

This must change.

Hate crime against disabled people hurts all of us.

JCHR Independent Living Inquiry visits ecdp

On 8 September, the Joint Committee for Human Rights visited ecdp as part of its Inquiry into Independent Living.

The Joint Committee on Human Rights is undertaking an Inquiry into Independent Living.
Inquiry Into The Implementation Of The Right Of Disabled People To Independent Living

The Joint Committee of Human Rights is conducting an inquiry into the implementation of the right to independent living for disabled people. The Committee seeks evidence from anyone with an interest.

As part of its visit, the JCHR visited ecdp.

ecdp – enhancing everyday lives – Home – ecdp hosts visit of a group of MPs and Lords

Today, ecdp is hosting a visit of the Joint Committee on Human Rights (JCHR). This is as part of the Committee’s Inquiry into Independent Living.
We talked about what ecdp does, using the slides below.
As you know we are currently hosting a visit from the Joint Committee on Human Rights. @M_J_Adams had just introduced the @ecdp staff.
ecdp
September 8, 2011
My colleague @fayesavage now talking with JCHR about her lived experience work. A really interesting and engaging discussion so far.
ecdp
September 8, 2011
.@fayesavage talking with the Joint Cmmttee on Human rights about ways we engage w our members in order to pursue the issues they highlight.
ecdp
September 8, 2011
Following this, there was really interesting discussion between the Committee’s members and two of ecdp’s members: Barry and Hazel.
Barry tells JCHR Independent Living Inquiry that accessible transport is the starting point for him to live independently.
ecdp
September 8, 2011
Our member Barry telling Independent Living Inquiry that current changes around #disability are like a cliff being eroded from the bottom up
ecdp
September 8, 2011
Barry, an @ecdp member talks about how important the motability scheme has been to him in accessing the community independently. #JCHR
fayesavage
September 8, 2011
.@ecdp member, Barry, and @M_J_Adams talking about risk and decisions being made for disabled people. #JCHR
fayesavage
September 8, 2011
Hazel now talking to Independent Living Inquiry about her experiences of social care. When she moved from the north to Essex her care didn’t
ecdp
September 8, 2011
Hazel is now giving a personal account of her life before she had her personal budget and how services prevented her living independently.
fayesavage
September 8, 2011
Hazel: “I couldn’t work if it wasn’t for the Personal Assistants I am able to employ through a Personal Budget. I wouldn’t change a thing.”
ecdp
September 8, 2011
Hazel highlights that not having a motability car – because of changes to DLA – may mean she could no longer pay taxes since she cldn’t work
ecdp
September 8, 2011
Barry and Hazel both feel there should be greater transparency around #DLAreform. #JCHR
fayesavage
September 8, 2011
Joint Committee on Human Rights really interested in the Access to Work issue that we wrote about last wk. We’ll share our report with them.
ecdp
September 8, 2011
JCHR debating with us issues around why rights-based approaches don’t have better traction. The parallel w consumer rights being highlighted
ecdp
September 8, 2011
The Independent Living Inquiry visit is finishing on a good note, by talking about the positive impact of the Olympics and Paralympics…
ecdp
September 8, 2011
… for disabled and non-disabped people in Essex alike.
ecdp
September 8, 2011
After the visit, Barry reflected on what independent living means to him. He also said what it meant to him to be able to share his views directly with the Committee.

#opendata in the Voluntary Sector: ecdp’s example

(I’m afraid this is a bit rambling and incoherent, but (a) it’s not quite the end of a long day, and (b) I wanted to get this down. Please allow for both (a) and (b) when reading…)

I’ve been interested in Open Data for the past few months, and have hosted (what I think is) an interesting discussion on the topic and how it applies to the Voluntary & Community Sector (VCS) here and here. There’s also a really interesting discussion on charities, public services and releasing data on the excellent Open Local Data Blog.

Because I happen to be pretty senior in my role in a disability organisation in the VCS, I’m in the fortunate position that I actually got to do something about it. Thus, today my organisation (ecdp) shared its Open Data work. There you can find an overview of what it is, our Performance Dashboard since July 2009, copies of our Management Board papers stretching back to August 2007 and our Annual Reports going back to 2004/05.

I’ve also written an overview paper on Transparency and Open data, which is embedded at the bottom of this post.

Talking over the last few weeks and today with friends and people who actually know what they’re on about (e.g. @karlwilding, @kanedr, @citizensheep, @loulouk, @Paul_Clarke), there are numerous interesting questions and debates around Open Data and the VCS that remained undefined and unanswered. Below, based on my/ecdp’s experience of this work to day, I’ve tried to capture some of them.

  • Is it really Open Data, or is it just open / transparent working? If it’s the latter, are there already good examples of VCS organisations doing this sort of thing (like publishing their Management Board papers and exposing their decision-making process) or not?
  • If it’s not Open Data but it’s still data, what is it? Does it hold value to other people? (This is a version of a question I’ve posed before. I think the answer is yes, but it still seems to be something to be explored.)
  • I’m working on the assumption that VCS organisations, as deliverers of public services under contract to public bodies, will need to publish the relevant data. Is this actually true? If so, will the same hold for non-VCS organisations such as private businesses, social enterprises and employee-owned organisations? If not, on what basis do the exemptions work?
  • In line with the above, can a VCS organisation publish its contract monitoring arrangements and reports with a public body? I’d argue yes, but what if there’s a clash between the culture of a public body and a VCS organisation?
  • Is a VCS organisation that publishes its data openly now essentially committing competitive suicide (assuming the data is that sort of data)?

On a very practical level, who else out there in the VCS has shared any of their data – no matter how little, or how not-quite-open-data it may be – that they’d be happy to tell us about?

Moving from the sublime to the ridiculous, here are a few lessons or thoughts I had along the way of getting to the point where we’ve published what we have at ecdp today.

  • Strategic and operational context is vital in understanding and explaining why a VCS organisation needs to engage with the Open Data and transparency agenda
  • Open Data and transparency has been as much a useful driver internally as it has externally
  • It’s important to ensure all staff have the opportunity to see what’s being published externally before it is done so. This is just a motivation/belonging point rather than anything sinister about not revealing too much. Expecting staff to get the data at the same time as anyone externally risks undervaluing their role in the organisation
  • I think some public bodies can be thought of as intransigent or unwilling when it comes to things like Open Data and Transparency. The same can equally hold for VCS organisations
  • Expect colleagues to raise issues of risk, credibility and accuracy as a reason for not doing this, and have your arguments lined up. This said, as with anything else, engage your key decision makers (including relevant Trustees) to make sure they know the benefits, risks and reasons for doing this
  • Embed the process for creating the data in your day-to-day processes. Having this as an additional piece of work, especially in a VCS organisation, does not and will not go down well
  • There are several unintended benefits of driving Open Data and transparency in a (VCS) organisation, including strengthening governance arrangements, increasing cross-team collaboration, focusing on what matters rather than just measuring, and lifting everyone’s heads up to think about the outside world as well as just the immediacy of day-to-day work.

There are probably loads more, but hope that gives a flavour of the types of thoughts and issues going round my head over the last few days (on Open Data, at least).

Would be really interested in people’s views on this generally, the specifics of what ecdp has done and whether it’s any good (and how it can be improved).

Thanks to everyone – including those mentioned above – who have inspired or shaped this work. Let’s just hope a few other people from the VCS follow in this direction…