Value of direct payments

Julia Winter is a disabled mother and has used direct payments for eight years. She works as a Direct Payment Support Services Manager for Essex Coalition of Disabled People in Chelmsford, Essex, UK. Julia talks to DPPI Information Officer, Shanta Everington, about her experiences of using direct payments.

I was disabled before I became a parent but I wasn’t receiving much help. I managed with assistance from my husband, David, who was working full time. After the birth of my son James, my health deteriorated and I was hospitalised for a month when he was six months old. I came home struggling and was referred to social services for a community care assessment.

I was offered a small care package as a directly provided service. I never knew who would turn up, when or for how long. I needed someone at 7.30am to help me get up but they might turn up two hours late, so David had to help me get up at 6am before he went to work. Some weeks, I had six different carers over six days. It just wasn’t workable.

Life changed

I spoke to my social worker again when James was two years old and she suggested direct payments. Life changed. Before direct payments, I existed … I didn’t have a life. With direct payments, I employed a personal assistant (PA) and she came when it suited me and did what I asked. Before that, I couldn’t go out, but with my PA, I went to parent and toddler groups and, for the first time, James had a social life.

Over time, my health deteriorated and my care package increased. This allowed David to remain in full-time work and enabled James and me to do all the things my non-disabled friends did with their children. When I was in and out of hospital, my PA was a constant in James’ life during what was a difficult time for the whole family. Having a PA also meant that I was discharged from hospital more quickly.

Employing my own PA is so much more flexible than having carers provided by social services. Direct payments enable me in my parenting role in so many ways. My original PA doesn’t work for me any more but she remains a family friend. I now employ a team of four PAs and it works well.

Direct payments has also changed James’ life – he has never been a young carer to me and he never will.

Shopping list

I returned to work this year as a Direct Payment Support Services Manager for Essex Coalition of Disabled People. I certainly wouldn’t have been able to combine work and parenthood without my PAs. In my job, I support other people considering direct payments.

Any parent considering direct payments needs to have a community care assessment undertaken by their local authority. The adult team should carry this out, as the adult has the parenting support needs, not the child. The assessment is the gateway to direct payments, as it is mandatory to be offered direct payments to meet eligible assessed need.

I would advise parents to prepare for their assessment by creating a diary, imagining what it would be like if they had someone to help them – what would you get them to do? It’s also important to think about equipment that may help. For example, a parent may use an accessible downstairs shower but want to be able to wash their baby in a bath. They could ask for direct payments to make the bathroom accessible to bath the baby. They could argue that this is important to enable them to bond with their baby and not have someone else bathing the baby.

If you go into an assessment with a ‘shopping list’ of what you want, you’re more likely to get your desired outcome.

Fair access to care

I feel that the biggest hurdle in parents being supported is interpretation of ‘Fair Access to Care’ eligibility criteria by local authorities. I believe that accessible information on ‘Fair Access to Care’ should be made available to all disabled people before a community care assessment. How can you know what you are entitled to if you don’t know what’s available?

Direct payments aren’t necessarily for everyone. For example, some parents may not want the hassle of organising their own care.

I am also a member of the Department of Health Direct Payments Steering Group. From January 2006, the Department will be piloting ‘individual budgets’ in 12 authorities, in response to the Green Paper, ‘Independence, well-being and choice: our vision for the future of social care for adults in England’.

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