This is

“The freedom to manage their own care package according to their individual needs”Becky Clegg

I would certainly advise anyone who’s looking for more choice and control over their day-to-day life to think seriously about getting a Direct Payment.

This gives the Disabled Person the freedom to manage their own care package according to their individual needs and lifestyle preferences.

Direct Payments do come with responsibilities that may seem daunting at first. The thought of recruiting my own personal assistant (PA) and keeping on top of paperwork seemed too much like hard work for a student. However, when the care agency which had given me stability and routine for three years became increasingly unreliable, I began to think again.

“Flexible care built around my needs and choices”
I eventually decided I had nothing to lose by seeing a Direct Payments Support Worker and didn’t look back. He took me step-by-step through drawing up a care plan. This really opened my eyes; it was built around my priorities and aspirations and encouraged me to think broadly about how a Direct Payment could help me achieve them.

Not only did it stress the need for reliable support from PAs chosen by myself; it promoted social inclusion by setting aside savings each month to cover PA costs should they accompany me to a festival or on holiday. If I felt guilty relying on friends, the ‘social reward’ pot provided funds to reciprocate by paying for their cinema ticket or dinner, for example.

This discussion led to my support plan being drawn up, broken down into average weekly PA costs, holiday pay, insurance and contingency. This gave me the confidence that everything was in hand, just leaving me with opening a separate bank account. A specialist insurance company was recommended, I had my first candidate lined up ready to interview thanks to a carer from the agency spreading the word, and the support of my father who owns his own payroll business has been invaluable.

If you think of any support that might be on offer from your network of family or friends, plus support workers on hand to assist where needed with interviewing and managing your PAs, you probably won’t be as alone as you first thought.

“I decided I had nothing to lose by seeing a Direct Payments Support Worker and didn’t look back.”
A new year meant a fresh start with my own PAs and freedom. I enjoyed getting to know my new carers and looked forward to seeing a familiar face each day. This was a welcome break from fretting about who might walk through the door and whether I’d have to waste energy spelling out my routine to yet another stranger. Being asked repeatedly where the saucepans are kept or how you take your tea got very wearing, especially if you struggle with speech.

My kitchen might have been plastered in post-it notes if it wasn’t for my new PAs picking up my routine and getting to know my home and my preferences quickly. When they saw I was busy, they just quietly got on with what needed doing. Most of the time though, that hour would be non-stop chatter as they went about the already-familiar routine as I welcomed the company.

What I also enjoyed now was being able to actually go places with them. It’s up to me if I do the weekly shop with them, definitely advisable with anyone new so particular preferences can be pointed out..If I send them on their own, they often beat me to it with writing the shopping list and can whiz round. We often then have time for leisurely trips to the park, town or the theatre.

Further afield, we teamed up with a friend and their carer to share an unforgettable day at the Paralympics, and there was scope in the budget to quickly find a PA on the local register when I realised I needed assistance getting to a wedding. A recent trip into town to test a new wheelchair gave me peace of mind and was very exciting for my current PA as her first bus journey in years. Having the tape out the minute she noticed the rubber handles had worn away, along with practical advice on how to prevent further damage, is just one example of how resourceful she is.

“Looking forward to seeing a familiar face each day.”
Inevitably, there are still hiccups. I understand now why I was advised from the outset to have 2 PAs. Even with relatively few hours, it makes rotas and cover for holidays, sickness and so on much easier to work out. Also, when I panicked that I was losing both PAs at once, one ended up staying, just swapping her hours for those left vacant by the other PA.

This worked out again recently; the remaining PA ensuring I had weekday cover. A close friend has wonderfully stepped in, at weekends, even preparing other friends for when she’s unavailable. This highlights how important it is to have backup plans. Ideally this might mean signing up to an agency just for use in emergencies. Failing this, hopefully there’ll be someone you know willing to help out as a friend. Also, even when recruitment is proving particularly tricky, it’s nice when you know others on direct payments to share experiences and swap tips with.

Don’t forget the need for give and take with everyone involved. Week by week, we endeavour to fit round each other. It helps us both to be flexible around times but also visit-length when I’m unsure how long things will take. (No matter how much I’ve tried to time my routine to the hour it doesn’t always work!) At the same time, I’m aware she has kids to see to and just to expect the unexpected from time to time such as car breakdown or heavy traffic. I get used to different timekeeping habits and try not to be in such a rush that the odd ten minutes puts me out. When you’re warned someone’s late as they’ve just fallen backwards off their chair, you need that time just to recover from falling off your own chair with laughter!

“Don’t forget the need for give and take with everyone involved”
Yes, I end up becoming good friends with my PAs (you just have to be careful here if boundaries become blurred and you don’t suffer for being too lenient or involved in their personal life). If you both remind yourselves that the PA is there to provide reliable support and you yourself strive to be the fair employer, both parties should get something from it. Being asked in an interview, with a knowing wink, whether I had a sense of humour pretty much set the tone for what can be a fun, rewarding and supportive relationship.