I receive a fixed budget from the council to pay any personal assistant/carer I employ. I am the employer and the budget is set based on how many hours of care I need and calculated on a fixed hourly rate. Unfortunately, having a personal assistant costs me quite a bit of money. The standard response is that the additional expenses is what DLA is for. I already have a list longer than my arm of expenses that DLA is for; DLA can only pay for so much. The current rules state that my budget can only be used to pay salaries and does not cover any expenses incurred whatsoever. This means that out of my own pocket, I have to pay for:
- Administration: I’m again nearing interview rounds and once application forms are in, will be ringing up applicants, arranging for interviews, liaising with all involved staff regarding employment, payment etc. The expense is small and not one I am particularly concerned about carrying myself, but it would have been nice if I was allowed to set aside a small amount towards my phone bill and all the cups of tea and coffee I serve to all parties involved. I also pay the WDPSS a small monthly fee to assist with paying of wages and taking care of the administration of being an employer.
- Training: This is the big one for me. If someone is going to prepare meals on a regular basis and look after a disabled person with health issues, I feel basic training is essential. A food hygiene course, maybe a manual handling course or something similar and a basic first aid course. If I wanted an employee sent on any training, I have to do it on my own expense. I don’t really see the point in sending someone on a boatload of courses, St John’s for example does manual handling over three one-day courses and even have a course on how to recognize an allergic reaction and how to use an Epi-Pen, but just the basic things would be nice to cover. It would cost me a few hundred pound per person to provide about 3 days of training, it’s money I don’t have and so it’s training they will not receive unless I can find the money from somewhere.
- Equipment: Personal Assistants tend to require stuff. Like gloves. Currently, I’m spending around £20 a month on gloves. Tough plastic gloves for household tasks like mopping floors, dusting, brushing and general cleaning. I don’t understand. I don’t use any abrasive cleaning materials and find it highly frustrating when every third or fourth day I have to order another double pack for next week. Other things are expected, decent cleaning equipment that meet health and safety standards and carer supplies to make helping with certain tasks easier. It’s required, but I try to get away with the minimum, I just can’t afford not to.
- Additional expenses: Coffee and tea can actually add up quickly. I don’t mind buying a pack or two of usually herbal tea a week, but when going out I miss being able to take a break from shopping and sit down to have a hot drink and/or snack. Although places like the National Trust allow free entry for carers/PA’s and I have a film card that allow free entry for a carer/personal assistant, most places do not. I mostly pay for two and I can’t always afford to and so I just don’t go out; we don’t stop for that break and a coffee; I stop going to the swimming pool. I focus on hobbies that either a friend or Chris shares and go out to places that family and friends enjoy so that I don’t need to take my PA along.
I wish I could be provided with a budget and given the freedom of how I choose to spend it on my care. It would be great for one, to be able to recoup the expenses above. It would also be wonderful if I could stretch it to give me more autonomy. Like being able to buy a mug that doesn’t require an assistant to pick up and put down or a water bottle with a decent straw so that when I’m lying down and can’t move, I can drink water without needing help. Currently I’m back to typing because my £100 off ebay computer cannot run Dragon and although my current keyboard was an invaluable gift that enables me to type again, it’s still very restrictive as to how much I can type and so I have to carefully consider every day what I would like to put down on virtual paper that particular day. Don’t get me wrong, I much appreciate the funding and having the additional help, without which, I don’t know how I would be able to take care of the baby once she’s born. But all the little additional expenses of which the above is just one more to add to the list that is not covered by DLA add up and every month, I find myself a hundred pound or two too short to cover it all. I have a healthy budget sitting in my council PA account that I can’t touch and it’s one of the most frustrating feelings in the world; knowing the money is there, it’s been allocated, I need it, but I can only use it to pay salaries.