Visiting My Life, My Choice in Oxfordshire

Last week, one of the Ambassadors for the Strengthening DPULOs Programme – Rachael Wallach – visited My Life, My Choice. This is an organisation run by and for people with learning disabilities in Oxfordshire that recently received a grant from the Facilitation Fund for their radio station and website Stingradio.

The offer of My Life, My Choice includes:

  • A Cafe – offering WiFi and also operating as a UK Online Training Centre providing IT skills and training
  • Power up – providing training on working with people with learning disabilities
  • Stingray Club – organising and providing club nights
  • Champions – influencing policy makers to try to prevent people with learning disabilities from the worst of the cuts (e.g. they have met with MPs and have even met with David Cameron). They also influence at a local level (e.g. they have been members of tender evaluation panels)
  • Local groups
  • Travel Buddy Scheme – they are contracted by the LA to provide a travel buddy scheme for people with learning disabilities
  • Up2Us Community – making computers easy to use. They have set up an online community, like facebook, for people with LD in Oxfordshire

Rachael’s visit also coincided with one of My Life, My Choice’s radio broadcasts. They unexpectedly asked to interview her, which you can listen to here: StingRadio news

After her visit, Rachael said:

What really struck me during my visit was [how] My Life, My Choice… really do demonstrate the value that DPULOs can bring both in relation to service user voice and service provision.

We’re really looking forward to seeing how My Life, My Choice continues to develop over the comings months and years.

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Minister’s speech on Disabled People’s User-Led Organisations

I’ve written a lot about the Strengthening Disabled People’s User-Led Organisations (DPULO) programme I’m involved with. This includes, for example, writing about what a DPULO is.

The programme is based at the Office for Disability Issues & Independent Living. Last week, the Minister for Disabled People, Maria Miller MP, spoke at the Annual General Meeting of Surrey Coalition of Disabled People, an excellent DPULO in the south east.

Thus, below is an extract from the speech the Minister gave, where she talks about the programme.

It is the Government’s priority to make sure we support disabled people throughout the country to make their own choices and have control over their own lives so that they can reach their full potential.

The sort of control that, I think in Surrey, you clearly have, through the support you get from the Surrey Coalition

We aim to do this by working with disabled people to co-produce policy and make sure that we work together to design the programmes that we hope will support disabled people to reach that potential.

I know the Surrey Coalition has been involved in this work, as well as providing important on-the-ground support to disabled people. Your work makes a huge difference to disabled people’s lives every single day.

And that should be celebrated and I hope part of your AGM is about celebrating that. Because user led organisations, like the Surrey Coalition are a key part of the co-production of policy.

The UN Convention on the Rights of Disabled People stipulates specifically that Government must consider how new policies affect disabled people. The best way to do that, I think, is to ensure disabled people are involved at the start of the process. Now Government is getting a bit better at doing this but I’m sure we could do a lot better.

We need to really take our lead from organisations like you by making sure disabled people are involved in developing policies and services right from the start. User led organisations like you are really important in that process. I want to make sure that up and down the country disabled people have the same opportunities as the disabled people in Surrey do. And have access to strong and robust user led organisations like you clearly have here, in this part of the world.

That’s why we have decided that, although we’ve got lots of pressures on our money at the moment, we will take £3 million and invest in developing user led organisations.

Richard Watts from [Essex Coalition of Disabled People] has been selected to join us as joint National Lead to get this project off the ground. And he will work in partnership with the Office for Disability Issues, which many of you might know is part of the Government’s support for disabled people. In addition we have appointed 12 ambassadors broadly representing every bit of England to support him in this work – including three in the South East.

We have already agreed some really clear actions as a result of this.

We have a pot of money which we are using to help user led organisations to get up to speed and to be really active. We have already agreed payments from a facilitation fund that is part of the project.

This includes money for an interactive smart board for a group called Voice for All [s]o this group, which is made up of people with learning disabilities, can take greater control over their communications and be less reliant on other people. The facilitation fund has also agreed to provide funding for mentor support for young people with learning disabilities who run a radio show for people with learning disabilities in Oxfordshire.

It’s really important for organisations to get this support but also for established organisations, like you, to be able to share your knowledge and expertise so we can have a really strong national network of user led organisations, for everyone to benefit from.

I know here in Surrey you already work very closely with the local authority. That’s something I’d like to see more of in other parts of the country. It is good practice and I think that’s the sort of thing that this project will help to spread. I would also like to commend the Surrey Coalition for your involvement in the South East Network of Disabled People’s Organisations… It is strong networks like yours that will enable user led organisations to both support disabled people and help everybody better influence policy.

What is a #dpulo?

Those who follow me on Twitter (@rich_w) will have seen me use the #dpulo hashtag quite a lot.

In your quieter moments, you may have asked yourself: what on earth does he mean by this?

A DPULO is a Disabled People’s User-Led Organisation, and I use the hashtag whenever my tweets relate to work I’m doing on the Strengthening DPULOs Programme for the Office for Disability Issues.

As with most issues of language and definition relating to disability and/or the voluntary sector, the definition of “DPULO” isn’t, necessarily, straightforward. Thus, the following describes the definition the Strengthening DPULOs Programme is using (this is the “we” below) and some of the debates that often go on around this topic.

It should be noted, though, that one of the key pieces of work we’ll do over the course of the 4-year programme is work towards a (possibly new) definition of a DPULO. This is therefore something of a work in progress.

The core definition

At a fundamental level, a DPULO is an organisation run by and for disabled people. That’s the easy bit, but let’s unpack what this means.

By “disabled people” we mean anyone who has rights under disability law. This includes people with learning disabilities, long-term health conditions, mental health conditions, physical impairments and/or sensory impairments. Some DPULOs also include people who self-identify as having an impairment.

By being run “by and for” disabled people, we mean:

  • At least 75% of the people on the “governing body” of the organisation (such as the Management Board) are disabled people
  • At least 50% of staff are disabled people
  • At least 50% of volunteers are disabled people.

We also want the organisation to be run on the basis of the social model of disability, rather than any of the other models (such as the medical model or charity model).

Since not all organisations can start immediately with these proportions of trustees / directors / staff / volunteers, we also appreciate those organisations that can concretely demonstrate they are working towards becoming DPULOs.

What about carers / older people etc.?

Previous work on user-led organisations included in the definition of ULOs (rather than DPULOs) the explicit involvement of carers and/or older people.

It’s important to note that the definition of DPULOs doesn’t exclude this – a carer or older person could be part of the 25% on the governing body. It’s also important to note that carers themselves can be disabled people.

Recognising the similar-but-different issues relating to carers and disabled people – as well as the associated power dynamics that can underpin relationships between the two – the definition of DPULOs doesn’t include explicit reference to carers. Where carers aren’t involved in the management of a DPULO, though, then one of the things I personally look for is how a DPULO works with carers organisations.

Similarly, explicit recognition of age isn’t included in the definition of DPULOs. As well as DPULOs working with age-specific organisations (both young and older people), it’s also worth noting the positive correlation between impairment and older age.

What about BME / sexual orientation etc.?

DPULOs should, of course, aim to be representative of their local populations as far as possible. In this, they are no different to any other good public, private or voluntary sector organisation.

What about the Department of Health’s 21 Design Criteria?

Those folks who have been around user-led policy and practice for a while will know that the Department of Health previously did some great work on User-Led Organisations. In doing so, they coproduced a definition of a ULO that resulted in the 21 Design Criteria. Though these criteria were good and very useful, I think it’s fair to say they were a bit onerous. There was also the interesting dichotomy – arising from self-assessment against the design criteria – whereby some organisations you would expect to be a ULO didn’t think of themselves to be a ULO and vice versa.

What other organisation descriptions are there?

As with any question of language and definition, there are other descriptions of disabled people’s organisations. Below are a couple of the main ones I’m aware of, and how (in the context of the definition of DPULO used above) they differ from a DPULO.

  • Disabled People’s Organisation (DPO) – This is an organisation for disabled people. The key distinction here is that, though the DPO may work on behalf of disabled people, it may not necessarily be controlled or run by them.
  • User-Led Organisation (ULO) – This is an organisation that is controlled or run by users of the organisation, but these aren’t necessarily only disabled people. Typically, ULOs include carers or older people. Similarly, a ULO can also be an organisation run solely by the “beneficiaries” of the organisation’s work, e.g. people from a BME background, LGBT people.
  • Disabled and D/deaf People’s Organisation (DDPO) – This is an organisation possible of and/or for disabled people that explicitly includes D/deaf people.

Dissertations and theses running to 100s of pages have been written on this topic. A relatively long blogpost such as this is therefore only likely to scratch the surface of what is or isn’t a DPULO. I hope, though, that this has given a flavor of what is meant by the term DPULO.

At a fundamental level, I hope I’ve conveyed the idea that – drawing on some basic building blocks – a DPULO is whatever local disabled people want it to be and is an organisation over which they have control.

Discrimination against people with learning disabilities still rife

Fucking hell, this is depressing:

Discrimination against people with learning disabilities and misconceptions about their lives is still widespread in the UK, despite a string of high profile hate crime cases, a poll reveals today.

A third of Britons think those with such disabilities cannot live independently or do jobs, while almost a quarter imagined they would be living in care homes. Nearly one in ten (8%) expected them to be cared for in a secure hospital out of town.

A similar picture, based on stigma and misconception, holds for people with mental health conditions.

I’m afraid that those who say there isn’t a hierarchy of impairments when it comes to disability are wrong: there is, and it persists.