This is the only room in the house I could access before the adaptations. I was not able to leave this room unless it was a true emergency and I was carried out, due to no turning space and very narrow hallways for my wheelchair when entering and leaving the room. 

Although myself and my family were blessed with a DIY SOS transformation, we first faced a huge battle to go down the DFG (disability facilities grant) avenue, as most people do needing adaptions for reasons related to disability and illness. This was unfortunately a very negative experience and something I am determined to be involved  in changing in the future.  

The limit for a disability facilities grant in Warwickshire is £30,000. Due to the complexity of my condition my needs are far beyond what a DFG will fund. In order for any money to be released by the council, my family first had to show that they could meet any outstanding finances, until this happened we were notified that it was not possible for any building work to begin. The adaptations planned out by the council were at least £50,000 of work. So, as a family we were instructed this would not start until we could show the additional funds. It was at this point we were also notified the grant money had to pay multiple architects for their drawings, despite those drawings being deemed unsafe and unsuitable by medics involved in my care. 

So it is at this point it is important to give huge thanks to Dominic Skinner at Spatial Future Architecture and Design for drawing all the plans for the beautiful 'annex' free of charge out of the kindness of his heart. The plans Dominic created were all perfectly thought out so that I have the space to move around in my chair, and all the turning circles and door ways are of correct width. The plans also included changes that were made to the family home so that I can enjoy spending time with my family and not become isolated in any way. It was important that the plans were balanced to benefit all the family and their individual needs, as well as the more unique needs I have. 

Before the adaptations the floor was the only safe place whilst I was having seizures, which could last many hours. 

I completely understand the limitations that are in place for maximum expenditure on a DFG, the money available for grants is not limitless and must help as many people as possible so the allowance has to be limited for each case. Unfortunately for us this meant that suitable adaptations just could not logistically happen even with the maximum grant of £30,000. We needed huge changes to make our house a home again and this was both structural and to provide the furniture and equipment I desperately needed. We found the process very sluggish, and the lack of understanding as to what my needs were caused friction. I did feel that I was not always supported and found the suggestions as to what was an 'adequate living space' very degrading at times. Whilst I understand that there is only so many options, it is extremely difficult to be told that I would be stuck in one room with no natural light and unable to access the rest of our home and that this was adequate. I found the process unfair on many occasions, unsuitable drawings for designs that put me at risk still had to come out of the budget available to us (to pay architecture fees) and the constant waiting game because frustrating to myself and my family. The worry due to my fast deterioration and lack of progress with the DFG caused huge amounts of stress on my family, and I was very lucky that we were blessed with the chance to have the house adapted by DIY SOS: The Big Build, as I fear we may still be facing the same process and stumbling blocks now, trying to create an adequate space on funds that simply couldn't cover my needs.

To improve the DFG process I feel there should be different professionals involved in each case. Age UK do some fantastic work with the DFG through the housing adaptations team at the council, but this is not the correct team to determine what people like myself need, a space extremely different to that of an elderly person with reduced mobility perhaps. If the Housing adaptations team had access to these specialists for support and advice, it would ensure the money available is utilised in the best way possible, this is better for everyone involved! This is something I will be addressing with the council, to give constructive feedback on my experience so hopefully I can help improve the experience of others in the future.

The distress of living this way is incomprehensible without some sort of insight as to what I faced. As a 20 year old girl I felt degraded and embarrassed that not only did I have to stare at the same 4 walls each and every day without choice, I also had no access to a toilet or running water. I was an empty shell of myself, losing confidence and self esteem as quickly as my ability to be independent.
— Chloe

Filming on Reveal Day, December 2015 

The process of council funding was hugely time consuming and frustrating. Over time it severely impacted my self esteem and self worth. When explaining that a toilet room built onto the lounge with no way of accessing any of the rest of the family home and removing all natural light sources from the one room I was stuck in, to be told that the adaptions are 'necessity' and that 'the council were not there to provide me with luxuries' I felt hugely degraded and I misunderstood. The lack of empathy or campassion was something I feared every time there was a meeting looming, a prime example being when asked "where do you see yourself in five years time?" knowing that I don't have the luxury of knowing this answer due to the rapid declining health I face. 

My aim is to support others who are trying to access a DFG. By sharing the knowledge we gathered as a family through the process I feel that other families could be much more at ease knowing that they are not an isolated case and that DFG's are not easy to acces, but the money IS there and it IS possible. It is my aim to help councils understand how to treat this topic with sympathy and respect so that the recipient families are at ease and feel their views are heard. I would also like to help people who are looking for guidelines to successfully fund raise and to provide information about the many charities and non profit organisations available within the UK for both children, and adults in times of need.

As you see on the home page of my website, I was extremely lucky to have the support of the BBC for my home renovation and as a result I have learnt lots about the equipment available, layouts that work and things to think about when making a home accessible. This is all information I am determined to share with the people that need it most- just like me!  


Community funraising to adapt our home whilst going through the DFG funding process

Seeing plans on paper was the most exciting part so far for me! It makes all the hard work writing letters, my efforts contacting different people for support, hours spent making posters, leaflets and decorating buckets and all the other fundraising totally worthwhile. I will admit, finding the funds is a worry and causes anxiety- mostly because I know how life changing the build would be. But I am just so grateful for all the hard work others have put in for my family and the generosity from people that were once strangers. Our local community is so wonderful and I am blessed to have such a wonderful crowd of people supporting myself and my family.
— Chloe