My Life With Adrenal Insufficiency

Wheelchair and Adapted Housing

Wheelchair and Adapted Housing

Last year we moved to a lovely village in Lancashire. We have settled in well, my daughter has made new friends and loves her local school. It’s a small school but the teacher’s care and they have been so supportive to us. We have made some friends whom 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. She is a teacher and has become a support online. She has also helped out from time to time giving our daughter play dates with her own child. I think she is wonderful and I’m so appreciative.

Wheelchair Adaptations

I have made friends with other families who attend our local church and also live in the village. One family in particular have 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 other’s 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 Sylvia here. However we will and do need to move house.

The home we are currently living in is not wheelchair or chronic Illness friendly and so we are patiently waiting to get a house which 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 hospital for over 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 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 is sad that this family have had to go through such an ordeal.

I am sorry this lady is going through such difficulties and that she is having to use a wheelchair. I understand how hard it can be and I often try to raise awareness for those with disabilities.

For myself, someone who also uses a wheelchair (more 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. Yes 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 both a toilet upstairs and downstairs so 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 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 come available.

All disabled people deserve a decent home which 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. 3 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 was done to everyone who applies and if only those who persist actually get the help.

In September I made my 4th 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 3 months of persistence, I received a letter saying thank you for your application. I was asked for further information which I supplied straight away and was the told that someone would need to come to my home to check if my wheelchair could fit through the door. (It cannot).

I all ready 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 stated, he had all ready met me the previous year and all ready knew of the issue I had with my chair not fitting through the doors.

The good news was 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. We are on a waiting list for a disable friendly home and now have to wait our turn. I hope it comes sooner than later. I’ve been assessed by the NHS for a powered wheelchair but cannot be given one until my environment is suitable. It will happen in 2016 but not any time soon.

I wont be staying in hospital until a home becomes available like the Mother in the Mirror. 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. It’s not good that people with physical disabilities should 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.

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11 Comments

  1. I have worked in social care for many years ( before having my youngest) and found it so frustrating that their is not enough adapted homes available and with budget cuts etc people have to suffer. Some of the cases I worked on were heartbreaking with people sent to live in respite centres for months on end whilst awaiting adaptions or new homes. I hope that you manage to get a home somewhere nice soon and the list is not to long x

    1. This would be great but…. we have stairs that twist and turn and is impossible for any stair life, the doors are too small and impossible to make wider. the only thing that could be done is a ramp but then the wheelchair could not fit through a door. I had the house assessed by the council and housing team and was told it is unsuitable and not able to do the needed adaptions. We dont have a choice but to leave.

  2. I am also looking at whether our house will continue to be suitable as my MS progresses. At the moment it’s OK but I can’t get up stairs on my own because my legs can give way at any point and my balance is awful. So I come down in the morning before everyone leaves the house and don’t go up again until it’s time for Bed.

    1. Oh Emma, it’s hard isn’t it and a long wait sometimes. I hope to raise funds one thing at a time but it is something that is a need and will give a better quality life!

  3. You address so many trials and truths in this article-it’s honestly inspiring. Living in a home that accommodates ALL of your needs is so very important, especially when you regularly use a wheelchair. This is a really insightful post that works through struggles that so many people face. Thanks so much for sharing!

  4. It is something that most people don’t see or experience, that people need a home with certain facilities and access to be able to live there.

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