Towards Inclusivity in User Led Organisations

Last night, I was involved in a ‘Twitter Chat’ about DPULOs (Disabled People’s User-Led Organisations). This is a new, regular ‘chat’ (with the hashtag #dpulo) that runs on Tuesdays at 8pm – 9pm GMT and initially I had been reluctant to ‘join in’ because I think, for obvious reasons, the discussions should very much be ‘user-led’ and in my role as a social worker I didn’t want to overextend my role in these situations.

The discussion yesterday though was about an issue which is particularly close to my heart – namely – how DPULOs can be extended to all service user groups.

Working as I do with a group of people who often have the quieter voices in the disability movement, I feel an obligation as a social worker to ensure that these groups are not forgotten. I take my role as an advocate seriously.

The push towards direct payments and individual budgets has been very much powered by the user-led disability movements and my fear is that sometimes the needs of some user groups has been missed by the agenda which has been sought. I hasten to add that I do not believe for one moment that this is an intentional discrimination and I am wholly in favour of the programme of rolling out personalisation and person centred planning but that sometimes the needs of those, for example, who lack capacity to be fully involved in consultations can be missed.

We have discussed this in our own team at length, not least because we have our own user groups in the organisation that I work in and often it is the same people who volunteer and are approached to join them. As traditionally carers have been excluded, the voices of those with more advanced dementias have also been side-lined.

We have pushed out some of these groups to include carers of people with dementias who are not able to attend themselves but again, the other issue that perhaps arises particularly with the ‘older adult’ user group (which is the group I primarily work with) is the accessibility of these groups.

We have had all extraneous transport budgets cut so cannot provide assistance with taxis or transport to group meetings for those who may have difficulty managing with public transport. We cannot provide respite or ‘sitting services’ for carers.

For those who look to ‘social media’ as the solution, I wheel out my hackneyed phrase that technology and communication means is A solution but it is not THE solution because for some people there is a very real digital divide – while not something that is particularly age dependent (it’s far too simple and actually quite false to make automatic assumptions that older people just don’t use or get ‘the internet’) it is income dependent.

So what can be done to involve broader ranges of people who have different needs and may or may not have the capacity to participate in user-led groups? Of course, it defeats the purpose to demand involvement especially (as happens frequently with people I work with) when users may deny that they have a particular need or do not identify themselves as ‘mental health service users’ or ‘having a disabling condition’.

Apart from opening up groups to specific carers so that they can advocate on behalf of the person that they care for, I think that more formalised advocacy has a role – directed advocacy, non-directed advocacy and self-advocacy. If we – as providers and commissioners – don’t hear the quieter voices we will not be able to provide services which meet the desired needs. As happens now, I fear that commissioning decisions are made with little involvement and sometimes ‘being involved’ can be attempts to listen to the same voices repeatedly because we know what they will say and it will be want we (providers) want to hear.

It is vitally important that are user-led organisations are growing and taking on different roles that the inclusive natures are extended even to those who might not be able to attend and share their own voices.

How to do this is a challenge as in some ways the whole purpose of user-led is that they ARE user-led but there must be a role for those users who are not able to lead. There must be a place for their voices.

Perhaps it is all linked into the changing role of social work – perhaps the new role of advocacy will become stronger.

I hope so.

We are living in interesting times – many of the paradigms of communication and involvement are changing. It is in our interest to find ways to make these organisations work and work as well as possible.

I’d be interested to know other ideas about ways to increase accessibility to these user-led groups and organisations.

One thought on “Towards Inclusivity in User Led Organisations

  1. Interesting to note that ‘sitting’ services are in line for cuts when carers are supposed to bea prioirty for support. In the beginning of the last decade a lot of research was done on carers and flesible breaks/respite identifed as the key carers service. Now this has apparently been overtaken by fashkonable schemes offereing artistic and cultural activities for carers. Very nice for some but not much use if you cannot leave Mum in case she sets the kitchen on fire, unless skilled high quality affordable replacement care is on offer too.

    Yesterday the nice Mr Lansley set out a new NHS outcomes Framework and one of the indicators will be better health outcomes for Carers. I wonder if this will be approached by the usual free gym sessions for carers approach or will someone realise that being kept awake all night or being unable to leave the home will be the real threat to carers’ long term health.

    I do agree strongly that the obsession with self directed care risks leaving those without the means to express their needs behind. There are limits to consumerist type approaches and this is nowhere more apparent than with the very ill, frail and mentally disabled.

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