The fight to give our daughter the home she needs

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Monday 12 December 2011

To move or not to move? That is the question.

This blog is not about Shakespeare, it's about the decision to move out of our bought house and into a council house, just to be able to give Katie, my daughter who has bulbar palsy, some quality of life.

A few years ago the Occupational Therapist (OT) from the council did an assessment on Katie’s needs and highlighted all the things we would need to give Katie a quality of life. The list included a wet room, a chair lift, a ramp and her own downstairs bedroom. Although this was all for Katie, that did not seem to matter. Because her mum and dad owned their own house we were basically told ‘tough’ - the council couldn't help us to get things set up as we needed them. That is the thing that spurred me on to become a campaigner. We could not believe what we were being told: What are we going to do? How are we going to adapt all these things for her? we asked ourselves. As Katie’s full time carer, I had to give up work, so there is only one wage coming into the house. (Let's face it, £55 a week Carer’s Allowance barely covers the diesel I can use in a week to get her to and from nursery and all her other appointments) Panic set in, and the feeling of failing Katie set in. I am her mum and I was supposed to be making her quality of life as good as any other child. And in the middle of all this was Holly, who only wanted to be able to go to her bed at night and be able to sleep and not be disturbed by Katie’s screaming or the noise of the suction machine. Were these things really too much to ask the council for help with? We found out that the answer was yes. I asked the OT at the time who I could take this up with, and she replied "The Government". So that’s exactly what I did. First I contacted my local councillor, who then involved my MSP. Both were fantastic and really wanted to help. Letters were passed between them and the council, but still the council would not help us in our own home. My MSP took it to Parliament at First Minister's questions, which lead on to me meeting the Health Minister. The media started to show an interest too. I felt I was getting somewhere, if not with adapting the house, at least with getting people to listen, to understand what it is like for families and carers like us. I knew there were other families going through this and I wanted to reach out and let them know they are not alone. My councillor arranged a meeting with the head of the social work department, for us all to sit down and discuss the situation. They came to our home, we talked and she listened. But did she get it? Still the answer was no. She did ask if we could meet her in the middle and at least put our name on the housing list, and if a property came up that was suitable then at least we could look at it. I hated this thought, I felt we were going against our principles. I was adamant that I was going to fight this. I was sure if we kept going the council would have to help. But we agreed. We filled out the relevant forms. Points that we gained because of Katie's medical condition took us to the top of the housing list for a three bedroom semi-detached house. These types of houses are few and far between in our wee village, so we thought ah well, it won’t happen anytime soon. I can continue to campaign. A couple of years have passed now since the first assesment. Katie and Holly are getting bigger, Katie’s needs are greater and it is only going to get harder. Sadly, last Christmas one of the villagers passed away. We knew then that once his family took care of all the business and handed the keys in that we would be contacted about his council house. It became our main topic of conversation. We started to drive past the house and look at it, we started imagining what it would be like. I started putting myself off the house before we even got contacted about it. I loved our own wee home that we had made for our family. I kept asking myself why I had to give that up and move to get the facilities we need, when they could be added to our existing house? How can local authorities be allowed to do this to families? But then I imagined the girls having their own bedrooms, and just the thought of having a chairlift to take Katie up and down the stairs was like a weight being lifted (quite literally). There are mixed emotions for all of us. What should we do?

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The fight to give our daughter the home she needs

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