Diana Simpson has a daughter with learning disabilities

ECIL ran a day of workshops on Direct Payments aimed at people with learning difficulties. Diana Simpson, who has a daughter with learning difficulties, attended the day and this is a transcript of the talk she gave. It gives a good idea of how people with learning difficulties can use Direct Payments. Diana and her daughter live in the borough of Wandsworth.

How can you support your son/daughter to make use of Direct Payments? Yes, there is quite a lot of paper work and yes, you have to be happy to have other people in your home and in your son/daughter’s life – but the rewards for you and them are worth it.

I started employing someone to support my daughter when she was about ten years old and I was working – it was a sort of child-minding arrangement. But I had disabled adults in my life encouraging me to help my daughter to develop the skill of directing her own Personal Assistants and so it was more than that. At first I used her DLA (Disability Living Allowance) to pay for the helper and then I used her benefits when she reached the age of sixteen years old – but nowadays you can receive Direct Payments for children under the age of eighteen.

The basic principle is that you are employing someone, so your son/daughter can do things of their choice instead of having to fit around services. So for instance – when my daughter was at school and wanted to go swimming with her friends the helper went too – she didn’t have to join the swimming club for young people with learning difficulties, which was on a Friday night which her non disabled school friends could not go to (i.e. she had a choice).

As my daughter has got older and left school she now has a team of helpers all who have Job Descriptions which spell out the fact that she is the boss and they are there to facilitate her life. This means she gets the help with dressing and personal grooming that she needs, she has someone who can work out what is on at the cinema, help her make arrangements with friends, go on the bus with her shopping and get her to college on time. My daughter doesn’t read, doesn’t tell the time, has difficulty speaking, but she has a great life. She understands the concept of the Direct Payment system enough to really make the most of it and with me as agent and her running her own bank account we are ready to go.

At the moment, I act as manager of the team and under current rules can’t be paid for that – but the team members are students from our local university, who I recruit with the help of their student employment services. I have a method of interviewing people first and then if they are interested, they meet my daughter and she has the last word on whether they join the team. One member of the team (seven people at the moment) acts as team leader working out rotas, timesheets and holiday, sick cover and running team support meetings.

My daughter has two bank accounts – her personal one with her benefit money and a cash card she uses and the one for her Direct Payments. I act as agent and monitor the money coming in from Social Services and I authorise payment to the helpers via the internet. That way my involvement is in the background and my daughter flourishes with access to enough help to lead a life as most twenty year olds – not having your mum in your face all the time! I hate doing most of the raucous things young people like – I’m middle aged and with all my children adults now, I like to lead my own life, not tied to my daughter’s needs as a disabled person – just a daughter.

Yes, I have to do my bit. We need to be allocated more hours for it to all work better in the future. But for the moment 30 hours a week is paid for by Social Services through Direct Payments and I, and the rest of the family, are free to support my daughter as part of the family and not someone who ties us to a ‘carers’ role. She chooses who is on the team, when they come and what they do. Unlike agency staff they can become friends and she can go to their house, meet their friends and extend her range of experience with them.

Unlike respite care, we can go away when we like, no waiting lists, no traumas. They can come on holiday with us, or not – just as we please. It is this level of control and flexibility that make Direct Payments such a boon to our lives. This is so much better for my daughter and so much better for all of us.