If only life was Grand DIY SOS Designs?
I watched that programme on TV the other night where a team of building professionals rally round, giving their time for free, to help make a families home suitable for their profoundly disabled child’s needs. You know the one, there is always a tear jerking back story full of incredible heartbreak that they have overcome and it’s a real emotional rollercoaster as they battle against the clock to get all the work done.
I wiped away the tears as I heard how after watching their twins battle life and death and spending over 18 months in and out of hospital, the family finally settled back into normal life only for the company the dad was working for to go bust owing him a small fortune and how grandma moved closer to help them bring up their kids, only for her to die suddenly and unexpectedly in her sleep. Through all this heartache, they stripped down their house that was totally unsuitable for their disabled son’s needs ready for the builders to move in but start dates came and went in the wind. They were trapped by circumstances to struggle along until Nick Knowles and his team came along to save the day.
When I say I watched it, what I meant was I have lived it. All apart from the bit where the house was adapted to suit their needs, because as any carer can tell you, for most families bringing up disabled children, life is simply not like DIY SOS.
We live with our three children in the middle of the idyllic village of Bromley Cross. When there isn’t a pandemic, it is ideally suited for the shops, the station, great local schools and The Nook and Cranny and has just been voted in the top 10 places to bring up a family in the UK.
However, our home being over 4 floors, from a cellar to the attic, it is far from an ideal place to bring up a young boy with Cerebral Palsy*.
Moving house is a fantasy as we would ideally need a 4 bedroom bungalow but any house like that that comes to market around here, is quickly snapped up by cash buyers to be bulldozed and replaced with several smaller boutique residences.
The government offers some help to adapt homes like ours in the form of a Disable Facilities Grant. We applied for a DFG and were accepted however as our front door is 1.1M off the ground, we discovered that by the time we install a lift to get Thomas and his wheelchair into our house, the grant would be all but spent and yet our lives inside these 4 walls would not be improved one bit.
Thomas cannot walk and he cannot self toilet. He has complex changing needs and is beginning to get very heavy. As he will only continue to grow, we had a radical idea to spend the DFG more wisely by reconfiguring the cellar to be the heart of the home alongside Thomas’s hygiene suite and bedroom. Luckily our front garden is just long enough to build the required ramped access for his wheelchair, negating the need for a lift.
Ultimately it could even become a self contained flat for Thomas once our other children have flown the nest and we move back upstairs. We have to consider that we may be looking after him for the rest of our lives but are hopeful he will reach a degree of independence.
After much playing around on Google Sketchup and cutting up of graph paper, we decided to employ an architect.The first architect was initially enthused by our ideas to gain ramped access into the cellar but then he got confused and irrational when he convinced himself that far from liberating Thomas, we were entombing him. He walked away from the project
The second architect began by doing it all for free. He had a son with special educational needs and empathised with our predicament however just as we prepared to submit for planning. He disappeared off the face of the Earth.
The third architect we employed was my former scout master. We had shared a taxi back from a local pub and persuaded him to get involved. Plans were drawn up and passed by planning then a setback, you get used to these, the DFG expired.
So we reapplied for the DFG only to discover they didn’t like our plans one bit. What you often discover with bureaucrats is that they are exceptionally good at misunderstanding how you live your life tallied alongside a reluctance to deal with people who don’t tick a convenient box.
To cut a long story short though, and it is a long story, after much horse trading, we finally got our DFG re-accepted with some stringent conditions. The next stage was tendering, as even though in theory the money was ours to spend adapting our home for Thomas’s needs, Bolton at Home who managed the grant needed to ensure we don’t blow it all on fast living.
Not that the grant even touches the sides. Even with the VAT exemption for disabled equipment, our estimate for the adaptations comes in at around £120,000. Money we have had to fundraise.
We asked three builders to tender but only one completed the process. Facing Hobsons choice, we committed to using him with July 2019 scheduled to be the start date. It came and went. Our neighbours were not mad keen on our plans to move a drain and install some new manholes, so we subtly redesigned the scheme to accommodate their requests and improve vehicular wheelchair access at the front. Our architect thought that this constituted a non material amendment but advised that it was wise to pass it by planning to keep on their sweet side. Not surprisingly, at the eleventh hour they rejected this move insisting on another full submission which they guaranteed they would pass. To cut another very long story short, they disappointed us by reneging and rejecting it. Our architect submitted a compromise proposal but whilst we waited to discover whether it would pass, our builder walked off the project.
So nearly 5 years since we started this process, our house is still unadapted for Thomas’s needs. We did eventually get full planning and we had a new builder who should have started work in January 2021 but he unexpectedly inflated his quote and we parted company. Our fingers are crossed that one day it might finally happen but every architectural draft, survey, structural engineers report, planning application, building control submission costs us a fee and so far we are nearly £4000 down with nothing to show but a set of plans.
And therein lies the crux of the problem, our house isn’t a standard box and our needs cannot be met with a bit of breeze block bolted onto the back. It isn’t a conventional DFG but then neither are Thomas’s needs. Every child is unique and we believe our scheme is the best we can come up with given our circumstances.
By liaising with professionals we have designed an innovative solution to an intangible problem, meeting Thomas’s needs whilst keeping us in the heart of our community and support network. Through clever use of technology to maximise the available space, we hope to future proof our lives and give Thomas independence.
For us this is a once in a lifetime project and neither of us are experienced project managers so we are reliant on experts to get the adaptations done. Trying to tackle it ourselves would lead to the kind of situation that would get Kevin McCloud to issue a sentence structured around the words “I think they are making a big mistake” as he delivered his PTC to a camera on a jib. In another twist regular viewers of Grand Designs will recognise, we were turned down by Santander’s underwriting team for our much needed additional borrowing. Though thankfully on appeal, they have agreed to lend us a maximum of £30K.
We have been lucky that the charity Sullivans Heroes have taken us on. They support families like us whose adaptations go beyond the scope of a DFG. Without their help we would have given up a long time ago. They have helped us write to 101 trusts, foundations and charities to tell our story and so far we have had 5 successful bids, 8 pendings and 65 rejections.
Thomas is now eight. Given the drama of his birth, it is a milestone we never thought we would see. With nearly £10K still left to find for his wheelchair lift, and our backs beginning to give, does anyone have Nick Knowles phone number please?
If only life was as simple as DIY SOS 🙁
*Cerebral Palsy, Cortical Visual Impairment, Epilepsy, Undiagnosed Sensory Processing Disorders etc