When You're Waiting for a Wheelchair-Accessible Home

Last year we moved to a lovely village in Lancashire, England. We have settled in well, and my daughter has made new friends and loves her local school. It’s a small school, but the teachers care and they have been so supportive to us. We have made some friends I am so grateful for. I met one parent at my daughter’s birthday party last year and she is someone I’ve come to appreciate as a friend. I have made friends with other families who attend our local church and also live in the village. One family in particular has been ever so kind. They brought a huge hamper to our home at Christmas and invited us for dinner not so long ago.

There are others in the area who I’m pleased to have met, and although I’m unwell, I feel part of the community, and we love our new village. We are local to a fabulous school, our church, friends, the hospital and doctors, and we do not want to move again.

Our dream is to stay in this village and raise our daughter Sylvia here. However, we will and do need to move to a new house. The home we are currently living in is not wheelchair- or chronic-illness-friendly, so we are patiently waiting to get a house that will enable me to be more independent and get about easier on really bad days.

Last week I read an article about a mother in a wheelchair who has stayed in the hospital for more than 18 months due to her home being unsuitable for wheelchair use. The mother has been separated from her children due to the long wait to raise funds for suitable changes to be made to her home, which will enable her to live independently in the home. It’s awful for any parent to be separated from their children (trust me, I know) and it’s sad that this family has had to go through such an ordeal. I am sorry this lady is going through such difficulties. I understand how hard it can be, and I often try to raise awareness for those with disabilities.

As someone who also uses a wheelchair (more often than not), I am also waiting for a better home. Our stairs are not suitable for a stairlift as they twist around every four steps. If I cannot get upstairs on a really bad day, I have to stay in my room or on the sofa. No, it’s not ideal, but staying in a bedroom and being with my family is much better than staying in the hospital. One of the adaptations the mother in hospital is waiting for is a downstairs toilet. So many people with illness or disabilities have to use a commode when they are unable to get to the toilet or simply have to stay upstairs to be able to get to the bathroom. We are hoping to get a home with a toilet both upstairs and downstairs so my husband John does not have to drag me up the stairs when I need the bathroom.

I am pro-disabilities and all about raising awareness, and I feel people in wheelchairs should have adapted homes; however, I’m not sure if waiting in the hospital is the right way to go about it. This has clearly worked out for the woman who has almost raised the £30,000 she needs to adapt her home, and I’m pleased she will be able to go home soon, but I’m left feeling a little frustrated, as there are many disabled people around the country waiting for adaptations and more suitable housing to become available.

All disabled people deserve a decent home that meets their health needs, but you don’t always get things straight away, and often waiting is involved. I have been trying to get on a waiting list for suitable housing for almost a year. Three times I applied and heard nothing. Each time I rang to find out what was happening, I was told a letter had been sent, and because I had not returned the required information, my application had been cancelled. The thing is, we never received a single letter, and I wonder if this is done to everyone who applies, and if only those who persist actually get the help.

In September, I made my fourth attempt to find a suitable home. I waited and heard nothing. I rang every week and each time was told I’d receive a call back but nothing happened. Finally my husband took me to the office where applications are processed. I was in my wheelchair and was told that the manager in charge would get back to me. A week went by, then another week and another.

Eventually after another three months of persistence, I received a letter thanking me for my application. I was asked for further information which I supplied straight away and was told someone would need to come to my home to check if my wheelchair could fit through the door. (It cannot.) I already supplied a letter from the occupational therapy team, and it felt like a slap in the face for them to check if I were telling the truth. I waited a further two weeks for a man to come out and check whether my wheelchair could or could not fit through the doorways in my home. It really was a wasted journey as the officer who came to see me had already met me the previous year and already knew of the issue I had with my chair not fitting through the doors.

The good news is after a year of attempting to get on a waiting list, I am finally there. We can now start the process of waiting patiently for a suitable home to become available. My dream home will have doors wide enough for a powered wheelchair, ramps into the home and have a toilet up- and downstairs. I hope it comes sooner than later. I’ve been assessed by the National Health Service for a powered wheelchair but cannot be given one until my environment is suitable. It will happen in 2016, but not anytime soon.

I won’t be staying in hospital until a home becomes available like the mother in the article. I will be making the most of life and making do with what we have for now. Life will be a lot easier when we get an adapted home. People with physical disabilities shouldn’t struggle so much to get suitable housing. It is terrible that a mother and her family have been separated for 18 months waiting to get a wheelchair-friendly home, and I think there should be more support available to help people like me who are struggling to live independently and comfortably in their home due to disability.

Follow this journey at Daysinbed.