#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:

• Prime Minister’s Strategy Unit (2005), Improving the Life Chances of Disabled People
• Department of Health (2008), User-Led Organisations
• Department of Health (2009), User-Led Organisations (ULO) Baseline Project
• NCIL, ADASS and LGA (2009), Joint Protocol between National Centre for Independent Living, Association of Directors of Adult Social Services, and the Local Government Association for the provision of user-led organisations (including Centres for Independent Living) and user-led support services
• Department of Health (2009), Putting People First: working together with User-Led Organisations
• ripfa (2010), Key Issues no.5: User-Led Organisations
• ripfa (2012), Strategic briefing no.3: User-Led Organisations (to follow)
• ripfa (2012), Customer Guide: User-Led Organisations (to follow)
• SCIE (2009b), At a glance 15: Personalisation briefing: Implications for user-led organisations
• Office for Disability Issues (2012), Fulfilling Potential discussion document (pdf)
• Office for Disability Issues (2012), Fulfilling Potential “Next Stepts” document (pdf)
• Office for Disability Issues (2009), Right to Control Trailblazers
• Home Office (2012), Hate Crime Action Plan: Challenge it, Report it, Stop it
• Department of Work and Pensions (2012), Drive to get more disabled people into mainstream jobs [through Access to Work – includes reference to work of DPULOs in providing peer support]
• Department for Education (2011), Support and Aspiration: A new approach to special educational needs and disability Green Paper
• Department for Communities & Local Government (2011), Whole-Place Community Budgets
• Cabinet Office (2011), Open Public Services White Paper

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

• Department of Health (2007), Putting People First
• Department of Health (2008), Transforming Social Care: Local Authority Circular 1
• Department of Health (2009), Transforming Social Care: Local Authority Circular 2
• Department of Health (2010), A Vision for Adult Social Care: Capable communities, active citizens
• Department of Health (2012), Caring For Our Future White Paper
• Department of Health (2012), Local Healthwatch – the policy explained
• Department of Health (2012), Personal Health Budgets (to follow)
• Putting People First consortium (2010a), Think Local, Act Personal: Next steps for adult social care (pdf)
• Putting People First consortium (2010b), Think Local, Act Personal: Supporting documentation
• Think Local, Act Personal: Making It Real (2011)
• Local Government and Public Involvement in Health Act (2007), Section 138(1) requires local authorities (and other best value organisations) to secure the involvement and engagement of local representatives across all authority functions.
• SCIE (2008), Personalisation: A Rough Guide
• OPM (2010a), Briefing paper for a personalisation seminar
• OPM (2010b), Write-up of the personalisation seminar

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.

• Cambridgeshire County Council (2008), Self-Directed Support toolkit
• Groundswell Partnership (2012), Best Practice in Direct Payment Support Services
• Improving Support (2009)
• NAVCA (2010), Personalisation toolkit
• NCVO (2010a), Third Sector Foresight: Personalisation of care and individual budgets driver
• NCVO (2010b), Third Sector Foresight: Personalisation, User-Led Organisations and the VCS driver
• Office for Disability Issues (2011), Choice & Control project resources
• SCIE (2009a), At a glance 13: Personalisation briefing: Implications for voluntary sector service providers
• Skills for Care (2010), Toolkits to help providers move into personalisation

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.

• Office for Disability Issues (2011), Strengthening DPULOs Programme
• In Control (2012), Webinar on Strengthening DPULOs
• NCIL (2009), ULO resources (Note this resource is now defunct)
• Department of Health (2010), Sharing the learning: User-Led Organisations action and learning sites 2008-2010
• Disability LIB (2008a), Details of Disability LIB – a Big Lottery-funded project which aims to build the capacity and capability of ULOs across the country
• Disability LIB (2008b), Thriving or Surviving?: Challenges and opportunities for Disabled People’s Organisations in the 21st Century (pdf)
• Disability LIB (2010), Less Courses, More Conversations (pdf)
• National Skills Academy (2011), User-Led Organisations and Commissioning: 18 good practice learning resources (available online: http://www.nsasocialcare.co.uk/uploadedFiles/Commissioning/ulos_and_commissioning.pdf)
• NCVO’s Advice and Support section
• SCIE (2010a), A commissioner’s guide to developing and sustaining user-led organisations
• SCIE (2010b), Good practice framework

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.

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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.)