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Bridging the self-directed support rhetoric-reality gap

There seems to be universal agreement that we are facing an urgent crisis in long-term health and social care. In Control and our allies have positively influenced national policy and legislation, but there is much work to be done to close the "rhetoric-reality gap" in the context of the severe financial pressures being faced by statutory bodies. Failure to deliver the authentic self-direction promised by policy in social care, health and education is severely impacting on too many people and families.

In Control run a support-line to advise people. Thankfully we are often able to help people to get better outcomes and help local professionals improve how they deliver. However we are increasingly finding that even when individuals, families and professionals know the law and have the correct information, people are saying they are being ignored and their rights denied. Simply having good information is not enough; people are needing strong, independent, authoritative support behind them as well.

Many are now seeking legal advocacy. Solicitors are currently overwhelmed with cases regarding breaches of the new Care Act and Children & Families Act. We are working with them to support individuals and families with a range of issues. This might mean supporting drawing up correspondence, liaising with the local commissioner, mediation, support planning, emotional support, resolving complex issues or conducting independent analysis and reviews. We also make links to local advocacy and local user-led organisations and are finding there are challenges for them too. Some user-led organisations and advocacy organisations are losing funding, or are very dependent on local authority funding. Some report to us they are finding it more difficult to act independently as either they fear their funding will cease if they are seen as adversarial, or they have limits to the range of work they can do within their contracts. In our experience, the developing effect is seriously hindering the support available locally to help people achieve self-direction.

For this reason, local groups often refer through to us to give the extra support we can offer. We can mentor local people and can use the authority linked to our national position and independence to add persuasive strength to their local efforts. Our national links and networks also allow us to connect people with strong images of what is possible to achieve and link them with those in other areas that have found effective solutions to similar challenges.

As well as helping individuals to realise the potential of self-directed support, we support local leaders on how to work through complex conflicts constructively so they feel more confident in supporting people on the ground to keep them included and in their own community, accessing the support they need. This work has often emerged via demand from statutory members wanting conflict resolution support or from families and local groups directly accessing our support. Whilst this can be tough going, we are already seeing benefits where local statutory bodies have changed their local policy or pathway based from the live experience. The relationships built during this kind of intervention can help build a positive loop to help make positive progress on other issues.

Where next?

We are faced with the problem that we are only able to directly help and advise a small proportion of the people who could benefit and the local systems that can improve. For this reason we need to find a way to massively amplify advice and assistance. We don't believe the best way to do this is to expand our direct advice provision, but rather to support and enable local support to people.

We therefore propose to develop a national support network, operated by local individuals and groups, with In Control inputting and facilitating support while helping the growth of local expertise and capacity. We believe this to be the right approach because local groups and organisations already exist to support local people. These groups do not need to be replaced but instead enhanced by the added value that In Control expertise, local collaboration around choice and control and links to advice and help from other local networks can provide.

We are currently working on this idea and hope to launch the first phase in the next few months. If you are interested or want to offer idea or support, please do get in touch.

Julie Stansfield


7 comments for “Bridging the self-directed support rhetoric-reality gap”

  1. Gravatar of Les ScaifeLes Scaife
    posted 03 October 2016 at 12:31:37

    We are a small Peer Support organisation in the West Lancashire area. Any help we can give you can give our number 01695-556554 or e-mail les@peersupport.info. This is a great idea as it will give people more confidence knowing they are not alone in their challenge to improve services for the people they care for.

  2. Gravatar of Andy Gilbert Andy Gilbert
    posted 04 October 2016 at 09:00:00

    Hi
    Simply and succinctly expressed and reflects the current landscape

    "Simply having good information is not enough; people are needing strong, independent, authoritative support behind them as well."

    We are interested and wish to offer ideas and support.

    www.kdc.org.uk
    Find us on facebook and Twitter

    Andy Gilbert
    Team Manager - Direct Payments Support Service
    KDC

  3. Gravatar of Philippa BarkerPhilippa Barker
    posted 04 October 2016 at 12:42:48

    Thank you both for such positive responses. Julie will contact you to explore the ideas further.

    Thanks,
    In Control

  4. Gravatar of Christine StringerChristine Stringer
    posted 11 October 2016 at 17:13:13

    This is so true, I am finding this out right now as I try to fight off cuts to my Son's package. As a previous ILF it is a desperate battle each time his reassessment comes up. At 71 I am now getting "battle weary" but if I don't fight for him, who will ?

  5. Gravatar of Piroska MarkusPiroska Markus
    posted 12 October 2016 at 15:05:58

    Hi, I have just discovered 'In-control' and I am very happy to hear about your work. I have years of experience trying to ensure care-package for older disabled people and increasingly the criteria of eligibility was changed in an in-human way. For older people, the rhetoric and the reality is extremely fare from each other, choice is almost non-existent, Instead, the idea of 'personal choice' and a strange definition of 'mental capacity' is used to refuse to offer services for people who are unable to manage. If I knew that your organisation existed, I would have turned to you, or to a local branch/support group earlier. I am not sure where are you based? I am in London. I strongly agree that the important task is to support self-organised local groups. Piroska

  6. Gravatar of wendy wilsonwendy wilson
    posted 12 October 2016 at 17:39:20

    I am interested as a Expert by experience I would embrace the opportunity to learn more regarding Individualised Support we have a group in Northampton who support parents and i am sure we would benefit from this training and

  7. Gravatar of Philippa BarkerPhilippa Barker
    posted 14 October 2016 at 09:54:42

    Thank you all for taking the time to comment here. Julie will be in touch to discuss this going forward.

    Many thanks,
    In Control

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Last Updated : 04 October 2016. Page Author: philippa.barker.