Direct Payments, a user perspective by Anita Gracey
I first heard about Direct Payments in 1997 whilst doing a degree in Social Policy at the University of Ulster. To a wheelchair user, as a result of a genetic neurological impairment, they sounded like a positive idea.
In July 1999, with my son Emmett in tow, I moved into a bungalow in Belfast and met my first social worker. I told her it was to found it tiring and time consuming to do jobs such as changing bed clothes or washing floors and so I needed a home cleaning help. She said they couldn't pay for a cleaner but could get me a cook. Rather than provide what I needed, their system disabled me more as it took away my own skills -- not the person centred support I had naively expected. When I asked about Direct Payments, the reply was that they wouldn’t suit me. (Perhaps Direct Payments only worked in academic theory is and not in the real world.)
Anita discusses direct payments with Paul Anderson
I was assessed and granted a home-help for 6 hours – 10 minutes to take my son to nursery school, 1 hour to grocery shop and the rest to cook.
In practice however the system didn’t work as often they arrived hours late, never stayed be allotted time and it was someone different everyday. I don’t really blame the individuals but the agency, which undervalued, underpaid and overworked their staff. When it came to the cooking,
I would ask them to prepare a pasta lunch and they would lift the bag of pasta shells and ask “how do you cook this?” So I started buying more traditional food which it might be easier for them to cook. Even then I couldn't win as one of my treats is eating raw organic carrots and when I put this on the shopping list, we home-help would come back from the supermarket with bland non-organic carrots saying “those organic carrots were awfully expensive, so I got you these instead.” This may seem petty but it’s a small example of the right to decide was taken away from me.
People who become disabled frequently speak about a loss of control and I felt I was being institutionalised within my own home; I was eating food which wasn’t my choice, home-helps were coming at times of the day which suited their workload and staying for inadequate time. Sadly I don’t think this is a uniquely negative experience of social services support and, even worse, started to affect my son. Emmett normally
would talk incessantly from the 6 a.m. start to his day until bedtime again and even then would talk in his sleep! However I noticed he was Unusually quiet when some of the home-helps where in and it made me uneasy when he started asking “Who’s coming today?” Of course I couldn’t answer him and I realised how unsettling it was to him
During the 2 years I used the home-help system I kept hearing about Direct Payments in magazines such as ‘Disability Now’, the internet and through voluntary work at Action on Disability. Knowledge is power, and, with the help of CILNI, I realised that Direct Payments would suit me. CILNI put me in contact with someone already using the scheme and encouraged me to keep a diary on my lifestyle. Armed with this, I contacted the same social worker who by now had obviously been on a training course about Direct Payments and was now both enthusiastic and supportive!
One of my more regular home-helps offered to be my Personal Assistant (PA) as her second job and CILNI arranged for me to be in contact with the Business Support Team at HM Revenue and Customs. They came out to my home and enabled me to fill in the relevant forms correctly. Insurance too was simplified and arranged in a telephone call to an insurance broker. I set up a separate bank account, into which the local trust pays in a regular amount and I use it to employ my own PA This initial arrangement worked out for over a year, until she married and moved house.
I went back to CILNI to get help with designing a job advertisement, job description, potential pay PA’s essential/desirable criteria, application forms and a contract to safeguard everyone’s rights. I was worried that having been so lucky to start with it might be hard to get someone as good but I advertised in a local post office shortly before Christmas. I had no replies! But I reasoned it might have been the time of year and re-advertised in the job section of a local newspaper in January. This time I got 15 replies! Some I discounted on the telephone as living too far away or male! I interviewed a few women, all of whom turned out to be potential employees and, when trying to make a decision, I remembered one woman, Marion, who had asked my son’s name, age and interests. Her genuine warmth and interest for my son got her the job.
It took very little time to get used to each other as Marion is a great cook, with a very welcome inclination to experiment. Her cleaning skills are excellent and family and friends comment that the house is ‘sparkling’. Whilst the home-help system is task orientated, a p.a is far more flexible and economical. Marion can multi-task as, while food is in the oven, she can clean the windows. Time allowing, Marion has accompanied me to school parent meetings, picnics, clothes shopping and even to the pub. Our relationship is very loyal to each other, I had a bad cold one Boxing Day and she sent over a cooked dinner. It wouldn't have been possible to develop a relationship of such mutual respect using the home-help system. Marion gets on very well with my son, Emmett, and is very much a part of the family.
Having a stable home life has had spin off affects in that I was able to seek employment and now work as Personalisation and Involvement Officer (Northern Ireland) with the Customer Support Team within Leonard Cheshire Disability, which provides housing and other support services for disabled people across the UK. I also work freelance as a Disability Equality Trainer.
And so as they say the rest is history, I feel direct payments have helped to improve my quality of life dramatically. I would encourage others to do the same.