Maxine has been using Independent Lives services since 2023. She lives in Worthing with Lottie and her husband.
I had Lottie in 2003, which, looking back on it now, seems a lifetime ago. I didn’t know that I was pregnant with a daughter with Down Syndrome, she was diagnosed 24 hours after she was born. And after that, the world changed, my whole life changed. I knew then that I would dedicate my life to giving her everything I possibly could.
But when you have a child with a disability, your priorities change. For the last twenty years, I’ve solely looked after Lottie. To do that, I had to give up my career and I’ve lost an awful lot of friends. But on the plus side, it changes you as a person in an incredibly positive way, and if I had to do it all again, I would.
Maxine and her family have been living in Worthing since 2023, after moving from Brighton.
The last year has been particularly difficult for us as a family. We were priced out of our home in Brighton, so we’ve moved to Worthing – where my husband’s family is from – to start afresh.
This meant that we had to move local authorities, which is probably the worst thing I’ve ever had to do in my life. Nobody makes it easy for you, in fact it seems like the system is set up in such a way that it makes it as difficult as possible.
Things are also tight for us financially, despite my husband working seven days a week, so I’ve had to go back to work for the first time in twenty years, which is why we’ve explored Direct Payments, as Lottie will need support when we’re both at work.
There have been some silver linings in all that, I’ve met some wonderful social workers, and Nuwani from Independent Lives has been fantastic, but it’s just so hard to navigate.
Maxine has been receiving Direct Payments since September 2023 and the impact has been significant.
Receiving Direct Payments has been such a phenomenally good outcome for us as a family. It’s been very overwhelming. For the first time in my life, the first time in Lottie’s life, I feel like I’ve got a bit of my own life back.
I’m applying for jobs for the first time in 20 years, I’m setting up my own business and we had a night out recently, which was unbelievable.
But the impact on Lottie has been incredible. She has two wonderful PAs, who both bring such dedication to the role. And they’ve taken Lottie to so many places, she goes to badminton, the cinema, swimming, they’ve even had pizza parties and movie nights.
The family manage their Direct Payment with support from Independent Lives
The entire team have been so helpful. I also manage a Direct Payment for my dad, which can make things complicated, but they’re always very patient with me, which I really appreciate.
The one thing I love is that they get back to you immediately. I don’t have to wait a few days for someone to reply, they get back to you the same day, which is very reassuring.
But sometimes the biggest impact comes from the smallest moments.
It was my birthday in January, and Lottie wanted to buy me something for my birthday, so I gave her £20, and she went out for the day with her PA, Ellie.
She came back with a plaque which said: ‘Mum, your heart is big, your love is pure. You want the best for me and care about everything I’m going through. You love me without condition. If I could choose anyone at all for my mum, I would choose you. You are my perfect mum and I love you and appreciate you more than I could ever express’.
That’s the best present I’ve ever had, to see Lottie’s face when she gave that to me. She had done something on her own, independently, just for her mum. And that’s why Direct Payments and personal assistants are so important.
Independent Lives provides a range of services and support for people receiving Direct Payments. Click here to find out more about our Direct Payment support services.
