Five things I’d like to see to make personalisation meaningful

Jade recently went to a meeting on personalisation in care at Essex County Council (ECC) and writes passionately about the changes she’d like to see in order to put good care and support into practice for people with direct payments.  

I have been a direct payment user for a number of years now and for me having a budget and being able to employ my own personal assistants has been life-changing.  I believe direct payments themselves can be empowering and flexible. 

That doesn’t mean the system always works well though. At the recent workshop in Essex, members of the National Co-production Advisory Group from TLAP were there to truly emphasise what good personalised care and support should look like, and what it can achieve. A wide range of people were there - social workers, managers from the council, as well as direct budget users themselves.  A social worker made an interesting comment –it was only the second meeting in twenty years she’d been to that included both people having care and front-line professionals. If organisations do want to get things right and improve the experience for people with disabilities then an obvious takeaway is to start to interact with that very group.  It’s easy for management to believe they are achieving something, but when they ask those who have been through the system they may get very different or surprising answers.

What works and what doesn’t work in care

We began by thinking of a time we received good customer service, and how it made us feel.  We then did the opposite – and it was amazing how easy it was to list times we’ve been treated badly, and to list the consequences of that poor service.  How swiftly we felt misunderstood, ignored and mistreated.

We then looked at what ECC themselves did well within care, and what wasn’t working well.  This is where it got interesting for me personally, as issues that were brought up began to be grouped together in categories such as policy, finance, support as an employer and more.

Some of the answers included the fact that many people with disabilities are not given hours in their budget towards home management – cleaning the house, changing the bed, etc.  Another was around policies not always being made available and getting different answers depending on who is asked.  Another was that reviews aren’t always timely, or they felt that information given had to be repeated far too often, or that continuity of care was lacking.

One of my issues was around the changes in means-testing care and disability related expenditure (DRE), as the council has been very unclear about what does count.  Something I feel passionately about is that ECC could provide the most amazing, fully personalised care plans but if people living on a very low income are being told they will need to contribute significant amounts to receive it then it all becomes pointless.  The changes have resulted in many people not being able to use their care package, as they cannot afford the contributions they have been told to make.  The council must be fully transparent and work with each person to fully understand if their income is being spent on DRE, and why certain things count and others don’t – when common sense would say they couldn’t be anything other than disability related expenditure!

A good care plan isn’t all about money

There were also lots of interesting points made by the front-line staff – that some felt like their hands were being tied due to budget constraints, that it’s still more common to put a managed service in place due to the ease of that process – whether it was best for the disabled person or not. What also came across to me was that no one in the room had got in to their job to make life harder for people with disabilities. Instead it was a range of issues clouding the way, from regular department restructures, the pressure to keep budgets low, the lack of imaginative thinking, the impact of the cuts from austerity and sometimes a misunderstanding of just how stressful the process can be for people with disabilities. 

Direct budgets were designed to put the person at the front of their care - and a lot of that has been lost over time as councils became under strict pressure to make savings.  However, a good care plan doesn’t have to be all about money.  Social workers can work with the person receiving care to put together a fantastic and creative budget that meets their needs. Something I personally don’t want to hear anymore is ‘that’s not what a budget is for.’  If something can be justified as meeting someone’s needs and isn’t illegal – then that’s exactly what a budget is for.

There were some great discussions about every individual person being able to make a difference and to take that fresh new approach back to their team and cut through some red tape.

Why I’m scared of social care reviews

It’s in talking to each other that you begin to see each other’s point of view.  I mentioned in the meeting how much I fear reviews. I worry about which social worker I will get, whether they will be nice or not. I’m terrified about them cutting my care. I wonder if they will listen to me or have their own preconceived notions.  I had two different social workers come up to me after the meeting to say they hadn’t even realised reviews were seen as a negative– rather than a part of the process we are actually entitled to. Maybe this will make a difference in how they next approach a review by using reassuring language straight away that they aren’t there to remove care that’s needed.

This fear doesn’t come from nowhere. This fear comes from the reality of living life as a disabled person in this country. I can tell you right now the hardest thing for me about being disabled isn’t the condition itself, it’s that everything becomes a constant battle.  It’s all very well holding these meetings, and inviting organisations such as TLAP along who can articulate what good looks like through Making it Real.  But change needs to actually occur as a result for the process of personalisation to be meaningful. 

Five things I’d like to see in Essex to support personalisation

I’d like to see:

1. More clarity around budgets and empowering those applying with what can and can’t be put into their plan with a clear process of who to go to if you and your social worker are not agreeing.
2. More training for front-line staff on personalisation and its impact. Management can talk about personalisation all they like, but it’s social workers actually going into people’s homes and approving the care plans.  They need to not just know about personalisation but live, breathe and champion it!
3. Technology put to use to inform people of changes, the support available and policies proactively made available to users.
4. The list of what ECC counts as Disability Related Expenditure to be sent out to every direct budget user with full transparency
5. More meetings where front-line professionals and budget users can interact and learn from each other. Co-production should be the norm rather than the exception.

All in all it was a very enjoyable workshop, and I hope positive changes come about as a result.