Sarah Thompson talks to three severely affected members who've been awarded money from Social Services to employ their own carers
The Direct Payments scheme - which enables disabled and sick people to employ their own assistants using money provided by Social Services - can seem daunting to begin with. Being responsible for details such as National Insurance is not easy, even for well people. The advantage is that clients no longer need to use Social Services carers, or spend their own money on private help. The amount of money awarded and rate of pay varies from council to council and according to individual needs.
Recently, I decided to apply for Direct Payments for myself. The attractions were obvious, but it hasn't been easy to put my plans into practice. Advertising, interviewing, and organising: the very thought of it exhausts me!
Direct Payments have given ZoŽ a sense of independence
ZoŽ Williams has been using Direct Payments (DP) for three years.
Previously, her mum Pat used a service called 'relief for carers' which only gave her three hours respite a week - barely enough time to do the shopping.
ZoŽ explains: 'I used to have to think all the time of the carers' expectations and job description. It's more up to me now'.
ZoŽ employs four personal assistants (PAs) for 21 hours a week. Her main carer is still her mother, who cannot be employed under the scheme. Pat is vital in organising the PAs and deals with all the paperwork, as ZoŽ is not well enough. But in some areas ZoŽ is the main employer. 'I have learnt how to communicate my needs clearly and respectfully to reduce mistakes and misunderstandings; I've had to become a lot more assertive. It's a more adult role, which means a lot to me - it's given me more sense of independence.
'Everyone we employ has different strengths. One of my PAs can sew; another has computer skills. Lists of regular tasks are on the computer, and they can say which ones they particularly like or dislike. PAs tick the tasks off and sign it as they go along. We use cards with tasks and recipes written on them to save a lot of explaining'.
Both Pat and ZoŽ are very positive about the scheme. Pat is now able to go away for short holidays leaving ZoŽ at home with the PAs. Recently she has even been thinking of going back to work.
ZoŽ says, 'People with severe M.E live within strict limits, and the scheme can't work magic outside those limits, but within them life can be enriched. If there is something I would like to do or see done, I have got more chance of it actually happening. For example the PA with computer skills enables me to contribute to InterAction. But it takes a lot of energy to organise everything. There is a lot more they could do, if only I had the energy to arrange it!'
Sue Firth lives with her husband and two sons. She tried home care but found it totally unsuitable.
'My children were young when I first became bedbound and often didn't like the carers we had. There was no continuity, and the rules were uncompromising. We gave up, and employed private care, spending over £5,000 a year. When I heard about DP I immediately enquired. At first they said there was little local demand for it but I rang them every few months to keep making my needs known. Then I found out they had set up a scheme and I wasn't even on their list. They then 'ran out of money'.
'I had to go before a scrutiny panel to have my needs assessed. Because I wasn't using Social Services at the time, and wasn't considered 'at risk', I was refused. Then I heard about a local woman in the same situation as me who had been awarded DP. As she lived next door to someone on the panel, I made a complaint, accusing them of nepotism. Within hours I received a call saying they had agreed to fund a care package!'
Sue has funding to employ carers for 32 hours a week, plus 20 nights a year respite, and has opted to employ people with specific skills.
'I have a woman who is a professional cook to do the evening meals', she explains. 'Once a week she cooks all the food at her house and brings it here, ready to freeze. It makes such a difference to have some really decent food. I have one personal carer, one that cooks tea a couple of nights a week, and a cleaner who does some shopping.
'You have to be really organised! I have a routine: certain days are bath days, bed changing days etc. I use cards with tasks and recipes on them.'
Sue's advice for those who are refused Direct Payments is to keep badgering Social Services. 'Don't wait for them to ring you back, ring them. Go to the team leader, the line manager, the chairman of the Social Services committee, and if necessary the department head.'
Kathryn Dickinson began using PAs when she went to away to university; until that point her mother had been her carer.
'I couldn't get Direct Payments at Uni because Crewe council didn't provide the scheme then', Kathryn recalls. 'I used different agencies but they didn't fit in with my schedule. The carers always woke me up in the mornings when I am most in need of sleep. When I left Uni I got a flat on my own, so I needed a lot more help - particularly as my health took a nose-dive.'
This was when Kathryn started using DP. With a care package of 60 hours a week, she employs three people: 'It's been excellent', she enthuses 'I advertise in local papers and do the interviewing myself. Now I pay who I want to look after me.'
Kathryn has had a great deal of support from an advocate provided by a local PA support scheme. 'I have met lots of other people through the scheme so if ever I am left in the lurch without a carer I can ask another member if I can borrow theirs. Recently another woman and I both needed new carers so we shared the advertising and interviewing'.
Kathryn finds the scheme 'excellent'
Not all local authorities run direct payment schemes, but if yours doesn't yet, or has criteria which limit its use, AfME's Welfare Rights Adviser Pauline Taylor suggests you consider using the complaints procedure or contact your local MP.
For Direct Payments to work, a lot depends on the stability of your M.E., and without help, it may be unsuitable for those with severe cognitive impairment. Previous experience employing others or organisational skills would help.
Much rests on where you live: this affects the choice of agencies and pool of potential carers. There is a lot to learn, so use your advice worker as much as you can. You can begin with only a few hours a week. There are organisations that can help with paperwork (see below), or you could employ a PA with admin skills.
Direct Payments certainly give you more options - if you are able to use them.
Independent Living Alternatives help with support and advice on employing personal assistants - tel. 020 8906 9265
The 25% M.E. Support Group also have a detailed information pack on Direct Payments available for f5; - contact details on page 46
InterAction Issue 41 - July 2002 p35 - 36
ACTION FOR M.E. 3rd Floor, Canningford House, 38 Victoria Street, BRISTOL, BS1 6BY