research in practice for adults kindly asked me to write a contribution to their “Strategic Briefings” series, on the topic of Disabled People’s User-Led Organisations. Below I’ve extracted and amended the section about DPULOs and the voice of disabled people. The publication will be available from ripfa’s website soon.
DPULOs are run by and for disabled people and uniquely add value to the services they deliver. They have formal and informal mechanisms for representing the voice of disabled people locally.
Establishing an effective relationship with a DPULO can enable more choice and control for users of care and support. Conflicts of all kinds arising from voice-based activity (of interest, of independence) are generally anticipated in theory but happen rarely in practice.
What this work looks like
Representing user voice can be broken down into different elements: capturing views, aggregating views, analysing and synthesizing views and representing views.
- Coordinate user networks, which are an effective way of channeling user views on their local social care system
- Coordinate coproduction and user engagement mechanisms to contribute to every part of the commissioning cycle: analyse, plan, do, review
- Call upon their local community networks and partnerships to ensure all seldom-heard groups are reached
- Play a role in quality assurance: they can capture intelligence on how the local social care market is operating in practice.
If DPULOs also provide services, concerns about conflicts of interest rarely occur in practice. Indeed, DPULOs can work constructively with local authorities to develop the changing social care market and landscape. Furthermore, DPULOs can also harness the lived experience of disabled people to build and develop community capacity, for example in the form of peer support
Evidence of effectiveness
- Harnessing the voice of disabled people locally has both quantitative and qualitative benefits
- Data from Department of Health on LINks (HealthWatch from 2013), which empower people in the community to have their say or influence local health and social care services, suggests savings of £4.10 for every £1 invested in LINks
- Studies on community development which harness local community’s social capital suggest this approach can save between £3 to £3.80 for every £1 invested
- Community Navigator schemes save at least £900 per person engaged in the first year alone
- The user-led mental health Personalisation Forum Group is estimated to save some £250,000 per year through using users’ social capital rather than only statutory services
- Demos reported that coproduction between DPULOs and local authorities helped to mitigate or minimize effects of difficult decisions regarding budget changes and/or de-commissioning
- Beyond social care, there is a higher incidence of reporting of disability hate crime where independent support services through DPULOs exist
- An evaluation by the Scottish Government suggested coproduction of 2 local housing strategies in Scotland led to better outcomes for tenants and more efficient use of housing resources
Options for early, effective action
To make the most out of any local DPULO that exists, below are some effective options that are relatively easy to undertake:
- Consider enabling DPULOs to administer existing or new voice-based mechanisms in the local area, such as Partnership Boards or HealthWatch
- Consider establishing or maintaining a PB / DP User Network for regular qualitative input on progress towards personalisation
- Share contact details of local DPULOs to every user of the social care system in the area
- Consider establishing a strategic partnership with a DPULO(s) in the area. One practical effect of such partnerships can include seconding staff to the DPULO or having DPULO staff shadow Council staff
- Broaden consideration of the role of DPULOs so they focus on issues beyond social care, e.g. disability hate crime, employment, access to goods and services
- Take advantage of developments and their associated funding in other policy areas, e.g. HealthWatch.