When SDS Doesn't Work

Author: Anonymous

I recently helped my granddad get support from social services. In this article I want to explore that experience and use it to question the development of self-directed support (SDS). I aim to show that under the current model, professionals are the gatekeepers to most of the important information and as such are extremely powerful. 

I will argue that even if you were supported by somebody who was good at their job, SDS has a problem if the level of control people have is determined by professional competency. The solution therefore can’t simply be to train and support staff to be good at what they do (though this is obviously part of it). We need to look at how we move control into people’s hands. 

The question which underpins this article is if power is in the hands of professionals how can we claim SDS is self-directed?

Our experience of getting support was unpleasant, confusing and made a hard situation harder. My granddad Frank is in his 70s and had led an active and full life. He lived at home with his wife Margaret; they had two children and four grandchildren all of whom lived in the same city as them. Five years ago Frank was diagnosed with dementia. For the first 3 years we as a family were able to support him to carry on living his life the way he wanted.

It reached a point where my grandparents needed some extra support so they contacted social services. A student social worker came out to visit and did an assessment which gave my granddad an indicative budget. This was the first time my grandparents had ever been in contact with social services. Once the assessment had been completed and agreed the social worker rang them. They were told that they could either get a personal budget which would be complicated to understand and they would have to sort out what to do with it themselves or the social worker could put in a service to help them out. When presented with this choice they decided to get a service from the Council put in. This meant that my grandparents got a visit once a week from a council support worker. They also got the offer of 4 weeks respite a year in a residential home. They were given no choice over the provider, over the hours let alone what support they actually wanted.

As my granddad deteriorated it reached a point where this visit once a week wasn’t enough. I talked to my grandparents about whether my granddad had a support plan, whether he had a personal budget and neither of them knew. We contacted social services and explained the situation. We had a different worker this time. This social worker didn’t know the names of the forms they were asking us to complete, sent my grandparents out wrong information multiple times, didn’t explain what our options were and didn’t turn up to meetings. We decided to write a support plan ourselves. It was reiterated to us that if we went over the budget it would be extremely difficult to get support agreed. It felt like the needs of my granddad were secondary to a process which was so complicated it wasn’t properly understood by the people managing it. We made a support plan and sent it in for agreement. The plan was lost 6 times. On most occasions they acknowledged that they had received it but a few weeks later, when we asked for an update, would ask for another copy. It took months for the plan to be agreed and by the time it was, it was no longer relevant as my granddad’s support needs had changed.

While this was happening my grandma broke her arm. Social service arranged for someone to help her up in the morning and cook them food. This meant my grandma was expected to get up at 7.30am to be supported in the shower by a 6ft man she had never met before. It also meant they could only eat at the time when the carer turned up. My grandparents decided that it was easier and less demeaning not to have this support so instead other family members cooked them meals which they froze and heated when needed. My grandma only had a shower when a family member could help and instead washed herself with a flannel.

We went through this all again with another social worker weeks after getting the first plan agreed as the situation had reached crisis point. By this stage my granddads dementia had meant that he had started to become violent. When these incidents happened a crisis team became involved who rang the police. These incidents were classed as domestic violence and my grandma was told that there would be a safeguarding meeting and as the perpetrator my granddad would need to be interviewed. This terrified her, by this point he didn’t know who people were, how would he be able to cope with being interviewed by a social worker? When this was questioned we discovered that the social worker had been telling us the wrong information and didn’t seem to know the safeguarding policy of the council she worked for. Eventually he was moved into a hospital and then a nursing home.

Throughout this people didn’t listen to us as a family. They put services in that weren’t needed, they didn’t give my grandparents the information to make an informed choice and the result of this was an emergency move into a nursing home. It was an exhausting and unpleasant process.

This experience raised a number of problems with SDS as it currently exists. Firstly the training and support of staff was lacking. If people aren’t given the information and training on how to use it, how can we expect them to effectively support people? Secondly we weren’t listened to and instead felt like we were on a social care conveyer belt, we had an assessment, got a budget and services were put in place and it wasn’t a quick conveyer belt at that. Thirdly it seems SDS has been developed in a way that focuses on the professional as the key source of knowledge and support. What this means is that other routes to SDS such as peer or community support are massively under developed and under supported. The first two problems could be the result of the specific experience we went through. There are some very good social workers and support planners. The third however indicates a deeper issue with SDS and its development. We had to rely on the professionals around us. It was practically impossible for my grandparents to make a good decision about their support as they didn’t know what was out there and the system is extremely difficult to understand unless you are dealing with it day in and day out.

There are some clear and simple solutions which could make things better:

Firstly make the system simpler. Trying to give people control in a system as unwieldy and confusing as SDS in its current form becomes meaningless and in fact has the opposite effect. It leaves you feeling disempowered and in need of a professional to help you.

Secondly invest in peer and community support networks. There are groups out there already that show how things might work differently. One clear example is the Doncaster Personalisation Forum Group. They make one of the strongest arguments for peer support by showing the massive impact such groups can have, not only on its members but on the broader society around them.

Thirdly give people the information they need in a way that works for them. The internet is one way to do this but neither of my grandparents are computer literate. There needs to be a variety of routes to get information that are clearly explained to people at the start of the process.

Finally local authorities and others need to take a step back and re visit the principles that lead us to SDS. As I understand these they weren’t the desire to separate people off with the own little budgets, they weren’t the desire to simply put a price on social care and they weren’t an attempt to recreate the old system but with a different commissioning model. As I see it underpinning SDS is the belief that service users are experts on their own lives. That idea can only have an impact if people can get the information they need and are listened too. SDS needs to be exactly that, self-directed support and this will always suffer if the ability to make decisions is the gift of professionals.

The publisher is the Centre for Welfare Reform.

When SDS Doesn't Work © Anonymous 2012.

All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.