Better Together – our journey to Disability Related Expenses allowances

Working with Think Local Act Personal (TLAP), National Co-production Advisory Group (NCAG) and Our Voice (opens new window) over the last few months to implement the Nottinghamshire County Council  co -production plan (opens new window) has left a message that will forever be imprinted in my mind: communicate, communicate, communicate. 

The cost-of-living crisis has made it essential that local authorities get a person’s disability related expenses right. As someone who gets stuck in the ‘doing’ rather than ‘writing about the doing’ there has never felt a more important time to communicate work on Disability Related Expenses in Nottinghamshire. 

What are Disability Related Expenses? 

Disability Related Expenses (DRE) are the extra costs a person pays because of their disability, for example needing extra heating or specialist food linked to a health condition or disability. Local authorities must allow these as part of a financial assessment before they calculate what a person pays towards the cost of their care. 

In Nottinghamshire people and carers who draw on social care told us how we could improve this. 

“Financial assessments felt inconsistent. Some Disability Related Expenses allowances could only be claimed after exceeding the Office for National Statistics Average weekly expenditure for a whole household, which just wasn’t right, there needed to be clearer guidance.” Adrian Hartley, Carer with lived experience. 

So, a small group of staff and people who draw on social care came together to co-design a solution. 

It is an understatement to say that in the early days it was hard! 

Trust was almost zero, people’s views felt polarised and significant time had to be spent building up relationships and everyone’s understanding of what felt for me at least incredibly complicated. 

But despite the tension, challenges and disagreements what remained was the mutual respect and absolute commitment of those involved to find a way through. 

Catherine Shatwell, Carers Project Manager - Reach Learning Disability, sums it up well when she says: “It was the strong mix of views and experiences that in the end really helped to make things work.” 

Eventually a point was reached where we had decided how rates for Disability Related Expenses allowances (opens new window) should be determined using a mix of: 

• National data sources 

• An average based on peoples lived experience of them - for example the extra cost of a PA having a sandwich or a cup of coffee with someone in a café once a week 

• And the actual cost paid out for others 

Once approved, the group moved onto developing and running staff training sessions and looking at letters for those who draw on care and support who might need a review of their Disability Related Expenses. 

So, what’s the impact? 

We are hearing the difference that the guidance is making to people and carers who draw on Adult Social Care: 

“It has made such a difference to my daughter’s life. Previously Disability Related Expenses did not form part of a conversation at my review and I did not know what counted. But now my daughter’s expenditure has been properly calculated and she can afford to do some of the things that keep her well.” 

“Normally I am quite savvy with forms but claiming Disability Related Expenses felt so complicated. I gave up and just paid the bill. But with support I realised there were so many expenses I had not included. So, I resubmitted the form and am now paying a much smaller amount.” 

What next? 

• More staff training is planned, 

• a first review of the guidance has been undertaken - something everyone has committed to completing together each year. 

And… 

The strength of our work is not about having created glossy outputs or having cracked how best to explain Disability Related Expenses – everyone is still working on that - but in the journey, the conversations that continue to take place that allow the work to keep moving forward. 

“As a long serving finance officer in the council, I have always been used to making decisions based on interpretation of government legislation and guidance. It is refreshing to get to have discussions with people who are impacted by decisions and reach an understanding together on the best way forward for all.” Bridgette Shilton, Finance Officer, Nottinghamshire County Council. 

 Michael King (opens new window), Local Government and Social Care Ombudsman highlighted this year that: “Care Assessments, care planning and charging for care have been key features of our cases this year.”  

I would encourage all authorities who haven’t already done so to start the conversation with people and carers with lived experience about what makes a fair Disability Related Expenses allowance. Co-producing a solution together has to be better option than dealing with increasing complaints.