AS TIME drags on before the long-awaited social care reforms are announced, a group rarely mentioned by ministers — those who are under 60 and disabled — need urgent action to address the problems in their care and support at home.

For professional care at home there are two main routes, home care directly supplied by the council, or the cost of that care given to the service user in the form of direct payments so they can purchase their own care, with or without a personal assistant.

People who have disabilities want to be as independent as possible but often they find the care they receive though direct payments isn’t flexible enough to support their needs. 

This complaint is often heard from those who have moved from the independent living fund (ILF) on to local authority funding who because of a reassessment had to make changes to their care.

Sam was able to tackle this but said: “It did involve a lot of chasing people who could advocate for me, and I was really lucky that a person from a charity was able to visit me at home and explain everything to me and prepare for the panel assessment that would decide what they would offer me. 

“My partner typed up a spreadsheet showing my needs every half-hour each day and helped me write a personal statement which I think made a lot of difference to the care I was offered.”

Sam is aware that not everyone is in the same position as her: “I feel that the care plan I have now is brilliant, but it saddens me not everyone gets the same outcome as me.”

When the ILF was closed in 2015, the plan was “one social care support system for all.” 

But although a minority got a higher award, or remained the same, a substantial amount of people with disabilities found that their care was reduced after the local authority made a reassessment of needs, which then had a knock-on effect of what care they could “purchase” under the direct payments system and how flexible this care could be. 

The flexibility is needed especially for those who have variable physical health conditions and those with a mental health problem who don’t have family members or friends to act as personal assistants. 

They might have carers coming at a fixed point of time each week, but that doesn’t work well with a condition that can vary from week to week.

It is often said that it would be ideal, especially for those with variable conditions, for any service to be able to quickly put in the additional support during days and nights when the service user needs it, but is then also able to pull back when the service user is well enough, to give them the independence they require.  

This flexibility is what Isabel needs: “I want direct payments to pay for someone as and when I need them. 

“I want to use them for appointments, or for when I got out for a walk, and I want to be able to ‘save up’ hours and use them together in a block when needed.”

The other difficulty with direct payments is becoming an “employer.” Anyone reading the requirements on the government website would find it daunting.  

Even though there are organisations that can help with these duties, it is hardly surprising that many people with disabilities have been put off from using direct payments after finding out what their responsibilities would be under the scheme. 

This has been the case with Cathy, who has multiple needs including a serious mental illness. 

She says: “I have been unable to take up direct payments because I can’t manage the responsibilities of being an employer. 

“My local council hasn’t mentioned any support for dealing with this. I struggle managing myself, with poor concentration, planning, focus — executive functions — so I can’t organise other people especially if I’m experiencing a relapse. 

“I haven’t got anyone that could help like a family member or close friend who could help me with the employer responsibilities.”

Cathy was left with care agencies supplied by the council, which again didn’t meet her needs, leaving her for months without any social care support despite having assessed eligible needs.

Some service users who use direct payments have had difficulty finding a personal assistant. 

Terry, who has both physical disabilities and a mild learning disability, says: “I first tried to get a PA but because of the number of hours I had — eight each week — I had trouble finding someone who wanted to do it.

“So, after advertising for a PA and getting nowhere, my social worker suggested a care agency. 

“Before this agency started, they promised me everything — like getting out of the house and going for a coffee or to the shops and all the personal and practical help I need. 

“The reality has been very different. Sometimes I get someone good but most of the time I can tell they’re tired or in a rush, so I don’t say anything and just ask them to do what’s most important and let the other things go. 

“None of them have taken me out in all the time I’ve had this agency. I don’t want to cause too much fuss because I’m always scared of losing the support or having to deal with a new agency.” 

Anne, who also couldn’t get a personal assistant, was told that instead the agency she employed could act as a personal assistant for her. 

They told her she would have a dedicated carer with her most days, someone who would have similar interests to her, someone she could trust. 

This sounded attractive to Anne and the first session went well, but the week after everything changed, and she got different members of staff in throughout the week. 

“I felt they tricked me,” Anne says, “but there’s not much I can do about it — if I complain, I will worry that I would have to get used to different workers or even get some of my hours cut.” 

The precarious nature of social care and fear of cuts is leading to people being too frightened to complain or ask for changes to their care. 

That is because there have been many examples of disputes that can even include family breakdown when family members are “employed” as care workers but later are made redundant.

In other cases, where care has been withdrawn, bitter disputes have been very damaging. 

Tom has been in receipt of direct payments for a long period but after a review by the local authority the decision was made to release the personal assistant. 

All that Tom was advised to do was to give the personal assistant the four weeks’ notice of redundancy, however Tom received a letter demanding holiday and redundancy pay. 

Tom queried what he should be doing, but again was given no advice to help. 

So, on top of losing the personal care and practical care that helped with shopping, washing and cleaning, he must deal with this increasingly fraught dispute.

Peter Beresford OBE, who is co-chair of the disabled people’s and service user-led organisation Shaping Our Lives, said: “The present government continues to show a complete lack of urgency in addressing social care reform. 

“This failure to support disabled people’s rights and needs is having catastrophic, life-and-death consequences for many … The real-life stories reported here highlight how difficult it is for most disabled people to get the support they should be entitled to, to live the life and make the contribution they should be able to. 

“It really is time to make a new start of social care … a service that protects the rights and meets the needs of all older and disabled people.”

For a quality social care service there must be experienced staff available to act as personal assistants and to work in home care, but currently there is an acute shortage of such staff. 

This isn’t helped by strict immigration rules requiring all those applying to work in this sector needing to have a post with a salary of £20,480. That is a lot more than many are paid.

There is a strong argument for increasing the pay for those working in the care sector for the difficult work they do, as well as investing in education and training. 

But this would take time to implement. Time the care sector doesn’t have. 

With the pandemic meaning more will need care at home, there is an urgent need for the social care of those with disabilities to be addressed, but with a department not fit for purpose, with Matt Hancock formerly at the helm, when will that be?

Some names have been changed to protect confidentiality.

Peter Beresford OBE is visiting professor at the University of East Anglia and co-chair of the disabled people’s and service user-led organisation Shaping Our Lives (www.shapingourlives.org.uk).

Ruth F Hunt is a freelance journalist and author (The Single Feather).