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Being An Employer of Your Own Care

Penny Pepper has spent more than 20 years balancing the books, hiring and firing, and eyeing up spreadsheets – like many disabled people, all in the name of ‘Direct Payment’

Photo: LightField Studios Inc./Alamy

Being An Employer of Your Own Care

Penny Pepper has spent more than 20 years balancing the books, hiring and firing, and eyeing up spreadsheets – like many disabled people, all in the name of ‘Direct Payment’

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Rishi Sunak, let me whisper in your ear. I know about ‘balancing the books’, complex spreadsheets, employment and dismissal. I’m very good at people management, especially dealing with those up to naughties on the job. Many disabled people are likely to be – after years running their own Direct Payment schemes, which I’ve done for over 20 years.

‘Direct Payment’ provides disabled people with funds from social services to manage their care themselves.

Once, in the beginning, it was like this. I looked at my social worker, Mr S, as fire burned in my gut, at his old-school social work weariness and wariness – especially with the arrival of this new-fangled, self-directed care support. In the 90s, Mr S thought this was dangerous and likely to lead us into temptation. He did not like me having that money in my bank account – I guess because he thought I might use it to holiday in the Bahamas or buy a new car. I should be so lucky. That time, I snapped. Anger then tears. 

The funds related to whether I got out of bed, got washed, dressed, didn’t sleep in my own mess, went to work, went to play, and basically led a reasonable life.

But I’d never expected to be an employer.

In the halcyon days, disabled people’s organisations ran a number of schemes to help us with this, including managing a payroll and all the responsibilities that brings. There was a great flourishing of these groups, run by and for disabled people. 

There have always been different levels of involvement, choice and control. Some people go for a ‘managed account’, which involves outsourcing some tasks. I’ve always gone with maximum control and, in the earlier days of DP, this meant hours in front of spreadsheets calculating every single pound spent.

And the spectre of the DP finance worker. Ms T had a professional demeanour, devoid of empathy and genuine understanding as she picked over the dreaded spreadsheets, nit-picking 20 pence here and a pound 90 there. What the hell have you spent it on? Screwing over the local authority!

Bogged Down with the EternalFight for the Perfect Convenience

Penny Pepper

Now I delegate more, and the once scary challenges of payroll mechanisms and connecting with HMRC can be handled differently. 

While balancing the books has been one thing, the hard-learned skill of employer management has been another.

A personal assistant once looked at me with sad eyes – she’d forgotten to put my power chair on charge (a repeat offence). If I gave her a reprimand, would she walk out? Would I be stuck with no support? Terror at being left unsupported would often overrule any other rationale. 

These days, with the education of hard experience, I focus on keeping PAs that have promise, but I will always make the chop when I see there is no realistic way forward concerning my own needs – which must always come first. Admittedly, I’ve sacked more than I can remember, although not that many. It gets easier, but is never a pleasant task.

I’ve employed over 150 personal assistants in the past 25 years. For me, and many of us, the alternatives are unthinkable. 

I had close shaves with institutionalised care as a younger woman, and also as a family ‘burden’. Governments still show suspicion at DPs and, of course, austerity meant a vicious culling of many staff focused on self-managed care programmes. The closure of the Independent Living Fund in 2015 did not help and pushed the pervasive idea that some disabled people were ‘privileged’ to be on this funding stream in the first place.

For me, it comes down to the basics of choice and control. Who wipes your bum? Who cooks your meals? Who drives you to work? Did Stephen Hawking have such staff difficulties? I did sack someone instantly when they reversed my wheelchair-accessible van into a wall and then tried to avoid going through the insurance. Then there was the PA who got drunk…  See, Rishi Sunak, I could run the government!

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