Just baby and me (plus seven assistants)

In DPPi issues 24 and 26, Penny Roberts from West Yorkshire, UK, described the incredible battle that she had to go through in order to retain custody of her unborn child and to obtain funding for care for both of them at home. Now, Penny looks back over the last three years and writes about how, eventually, the direct payments scheme has enabled her to achieve a flexible, reliable parenting support package, over which she has control.

Three years ago I was expecting a baby. My relationship with my partner had broken down and I found myself alone, 150 miles away from my nearest relative and dependent on Bradford Social Services for support. There followed a very unsettled period of discussion about my future. It was suggested that I needed long-term residential care! But I was 35 years old, a registered nurse with a high level complete spinal injury. I was not about to live in a nursing home and have my baby brought up by someone else.

Eventually, I was put on a direct payments pilot scheme and was able to purchase care with direct payments from social services and the Independent Living Fund (ILF).

Support in a parenting role

My local social services department did not acknowledge that I needed support in my parenting role and treated my unborn child as a separate issue — a child protection issue. I was appointed a second social worker from the children and families division who investigated what assistance I would need with my baby. She produced a report in which she said that to bring up my son in a household consisting of myself, him and several assistants was not in the child’s best interests. She said the baby could not tell the difference between the person providing physical care and me, and that it would be like recreating institutional care in my home, with all its failings. The report was littered with phrases like ‘the baby’s carer’, ‘carer for the baby’ and ‘Penny’s carers’. She had not grasped the fact that I do not have carers, I have assistants who make no decisions about my life, and I would be the baby’s carer.

In spite of my attempts to explain this, the report ended that they intended to ask a child psychiatrist for an opinion and if I would not agree to another way of bringing up my son (adoption, fostering, shared care, another member of my family taking the baby) my social workers would go to court to take my baby into care at birth. My social worker assumed that because I am paralysed from the chest down I am incapable of bonding with my baby, incapable of caring for him, and that because I cannot physically do everything for him, he would not know who his mum is.

This conflict of viewpoints lasted for most of my pregnancy and came to a head four days before my son Peter, was born, when there was a case conference to decide how to go forward. The eventual conclusion of this was that I was to be supported at home with my new baby.

Three years on

When I brought Peter home nothing was ready and life was very uncomfortable for a while. Things should really have been arranged well in advance. At first my care package used a minimum number of assistants and was inflexible. I was tense, tired and still trying to arrange my care package.

As Peter got older it was unsafe to leave him unattended at times when I needed my personal assistant’s (PA’s) attention (I need a lot of assistance), so it was agreed that I could have a second person around for those times. The post of ‘mother’s help’ was created, very different to ‘the carer for the baby’.

Everyone who works for me gets on with whatever needs to be done. There is none of ‘this person is employed with money from the adult services and so she can’t iron Peter’s clothes’ or similar. I am responsible for Peter and myself. Nobody makes decisions except me and everything is done my way. Everyone understands that they have to support Peter and I as a family; they never take control away from me. My assistants are very clear about the situation, although assistants have no responsibility they must act responsibly and they are valued.

Three years on I still have my PAs, mother’s help and my waking night care. My PAs work full-time, the others work part-time, which is why there seems to be so many of them, I employ some of my part-time people and others are self-employed. Altogether seven people work for me. Please don’t be put off by the complexity of my situation. Most people on direct payments will have a simple set up, what I’m trying to say is if I can do it anyone can!

I found the thought of keeping records daunting at first, especially with a new baby and lack of sleep. But I soon realised that if I set aside an hour or so every week to do them I could keep on top of things. As for tax and insurance, I pay an accountant to prepare wages for me. He charges £6.50 per week.

How is Peter coping?

Peter is now two and a half years old. He and I are very close and he is in. no doubt as to who his mummy is. In my biased opinion he is beautiful, smart, happy and completely secure with our situation. He takes the comings and goings of different people in his stride and pays little attention to it. He is a normal little boy in every way.

Employing people

Personnel management was never something I wanted to do, so I felt very uncomfortable about interviewing and employing people. I noticed that I put things off until the last minute. This was a mistake and I have learnt from experience that it takes around eight weeks from advertising to having someone start work. Every time I go through the process of employing somebody new it gets easier because I have more experience and I know what I am looking for. When I employ a new person now, I have a trial period when either of us can withdraw from the contract of employment. Sometimes the people who I employ are not right for my personality or the way I run my house. When this happens it is best to call it a day because I must be comfortable in my own home.

I found from my own experience that by the time a person considers direct payments they may have had one or more bad experiences with other forms of help, maybe care agencies or ‘in-house’ social services carers. This can make them nervous of dealing with problems as they occur. But to bottle up awkward feelings results in tension and a bad atmosphere. I always tell people not to be afraid of having things your way in your home, assistants are there to assist not impose their views on you. It is OK to be a tyrant (that’s what it feels like sometimes).

When my assistant starts work I explain exactly how I like things done. I tell them that they may feel that I am always looking over their shoulder at first but that is just because I am paralysed; I can’t do body language and I can’t physically show them how to do things. I can’t glance into a room if I hear Peter crying so I have to do everything with my voice. I sometimes get tired of hearing my own voice but there is nothing I can do. Some of my part-time ladies have worked for me since I started using direct payments. They know how I work and help new people when they start. They also live close by and there is always someone who can come in at short notice, which gives me extra security. But all this builds up over time, it is not there at the start.

I have tried advertising everywhere for staff and have found that paying more to advertise in a regional (but not national) paper works best for me when I employ PAs. Local papers are good for part-time people and it is free to advertise in a job centre. I send out application forms and always check references before employing someone. Response to adverts can vary according to the time of year (advertising around Christmas or New Year is a waste of money) and personally I would rather re-advertise than settle for a person who is not right for my home. Don’t get down heartened if people ask for application forms but then don’t return them, it’s not you that’s put them off, that’s just what happens.

So to summarise, direct payments and ILF have put me back in control of my life. I now have a good relationship with my social worker and am well supported. It is, in my opinion, the only scheme that could have allowed the flexibility of support when I need it not when it’s booked and it has freed me from the rules and regulations that were adding to my disability.

First published in Disability, Pregnancy & Parenthood international, Issue 35, July 2001.


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