#DPULO resources and policy documents

This post is one for the policy geeks: you have been warned!

There is a pretty good existing amount of resources available for Disabled People’s User-Led Organisations (DPULOs) to support them in their development. Part of the issue, though, is that people don’t know where they are, how to access them or what to do with them.

One of the aims of the Strengthening DPULOs Programme is to both establish a repository of all such information that is as comprehensive as possible and to develop new resources that significantly complement and add value to existing information.

As such, the programme aims to capture, aggregate and share any relevant information that can support the development of DPULOs.

In the meantime, below is a full overview of the resources and information available on the topic of DPULOs that I’m aware of. It covers:

  • DPULOs and policy – the documents that form the framework for the role of Disabled People’s User-Led Organisations within policy
  • Broader Civil Society resources with a disability/personalisation perspective – a selection of resources that focus on building the capacity of organisations within the fields of disability and personalisation
  • Learning resources for DPULOs – full details of the resources focused specifically on building the capacity of user-led organisations

Inevitably this won’t be fully comprehensive, and will be updated over time. Thus, if you know of any other relevant resources, please do let me know about them.

DPULOs  and policy

A number of documents form the framework for the role of Disabled People’s User-Led Organisations within policy. The following are documents specific to DPULOs, their role in this policy environment and ways in which they can develop their work in order to positively respond:

The following are documents that establish the policy environment specifically in social care and health to which DPULOs contribute:

Broader Civil Society resources with a disability / personalisation perspective

There is a significant amount of information available to support Civil Society organisations to build their capacity and/or respond to the personalisation agenda in social care. However, capacity building support dedicated to disability and Disabled People’s User-Led Organisations is not as well developed. The resources below are a selection of better quality resources with more of a focus on disability and DPULOs.

Learning resources for DPULOs

There are a number of resources focused specifically on building the capacity of disabled people’s user-led organisations. The first two capture learning drawn specifically from the Department of Health’s DPULO Development Fund work between 2008-10. The rest are resources dedicated specifically to DPULOs from other strands of work and include a number of DPULO case studies or the work commissioners are doing to support DPULOs.

Both the Department of Health and ecdp (a DPULO based in Essex) have produced short videos demonstrating the work being done to build the capacity of DPULOs, as well as the work some DPULOs are doing in their local community. These are embedded below:

Social Care TV also has a dedicated video on personalisation and User-Led Organisations, available here. There are also a considerable number of videos about DPULOs that use the “DPULO hashtag” on YouTube.


3 steps to Making It Real for DPULOs (#dpulo)

Personalisation is the driving force for making adult social care as good as it can be for as many people as possible – irrespective of their age, impairment group, or amount of money they have.

In a system as vast and complicated as adult social care, there will always be difficulties in translating this vision into reality.

To address this problem, the Think Local, Act Personal partnership has established “Making It Real”.

Making It Real sets out what people expect to see and experience in their experience of adult social care if it is truly personalised. There are a number of are set of “progress markers” – written by real people and families – that can help any organisation to check how they are going towards making adult social care personalised.

Making It Real isn’t a top-down, tick box exercise: it is ultimately a voluntary tool that empowers users and their organisations to ensure personalisation happens in their local communities.

The markers of Making It Real can be used by any organisation – a local council, a provider of care services, or a local voluntary sector organisation.

I strongly feel that Disabled People’s User-Led Organisations (DPULOs) have a key role in Making It Real. This role is in two ways:

  1. Leading from the front and signing up themselves to Making It Real and demonstrating their commitment to making personalisation a reality
  2. Using Making It Real to ensure local councils and providers are doing as much as they can to make personalisation a reality.

I’d argue this is what DPULOs do anyway – on both the “business” side (i.e. number 1) and on the “voice” side (i.e. number 2). But Making It Real would be an additional way of formalising these roles so that others (particularly councils) might recognise and value.

The Making It Real website has a couple of examples of organisations that have put Making It Real into practice. There are also some great examples of DPULOs that have already done this, too – including Norfolk Coalition of Disabled People and an exciting project in the north west region that is going to start soon.

The Strengthening DPULOs Programme will do more to understand how DPULOs can get involved in Making It Real as well as regularly promote what MIR is and how DPULOs can get involved.

In the meantime, here are 3 steps I’d encourage you to take if you’re a DPULO that wants to get involved in Making It Real:

  1. Find out more about Making It Real by spending 10 minutes on the website. There are a number of regional networks for Making It Real – you can find out if there’s one in your region and get involved by approaching the member of the ADASS personalisation policy network in your area (click on the relevant bit of the map here)
  2. Have an internal discussion – either in your management team or with your Management Board – about signing your organisation up (the steps to do so are detailed here) to Making It Real. You can get help with this by downloading other people’s action plans to see what they’re doing for Making It Real
  3. Contact your local council and find out if they’ve signed up to Making It Real. For example, they might want to use Making It Real to help with their Local Accounts in reporting to local populations on progress in adult social care. Similarly, if you know any social care providers in your local area you could ask them to. (A list of organisations that have signed up and a map of them is available here.)