A couple of weekends ago was a big first for me! I spent a whole day and an entire night in a new city without my family! And everyone was ok – not just ok, we all enjoyed it – woo hoo!

Papers from SWAN Bloggers workshopIt was a fab weekend.  The first (hopefully of more to come!) workshop of SWAN UK parent bloggers.  We were there primarily to discuss the upcoming Undiagnosed Children’s Day (UCD), on 29th April, but also to talk about all things blog and social media and how to spread the word about living without a diagnosis, how that affects children, their families, access to health services, education and social care.  With the very lovely bonus that I got to meet a bunch of amazing, determined, funny, normal and unique blogging women! – in real 3D life! – and those of us staying overnight took the opportunity to go out for a lovely meal, a chat (and of course a few glasses of vino blanco!)!

It was so funny to be out and about without my little ones, while talking a lot about them! I had to stop my auto-pilot manoeuvre, when sitting down at the table, to move all the cutlery and glasses out of Twinkle’s reach!

The workshop was really great, the fab SWAN coordinators were totally on it, and as well coming up with lots of exciting ideas for UCD that we can work on collectively, it has left me energised and ready to get writing more for my own blog and given me ideas that I can transfer to some of my own ‘campaigns’!

An aside to the day for me was that, after noticing a flurry of people asking about house adaptations on the SWAN parent forum, I put it out there to the bloggers attending the workshop that I’d be happy to have a chat over lunch or dinner about accessible design and the grant process. It’s pretty telling about the state of the DFG (Disabilities Facilities Grant) process, that out of the 11 people due to attend the workshop (excluding me, another designer & the SWAN reps!), FIVE (yes 5!, almost 50%!) of them I’ve either talked to in the past, or they wanted to talk to me on the day about adaptations!

I would love to be able to give more helpful advice about the actual grant process, but much as I’ve tried to actually understand the system, the more I read, or am told, the more confusing it seems to get!  The first thing seems to be that although there is a core national critera, each county appears to have different ‘rules’ about the detail, and finding those rules…..hmm, Franz Kafka springs to mind!

Laptop showing house planOur own experience has, so far, been good.  Our OT has been great and the slow progress is mostly our own fault as we have opted to take control of the reigns, do our own drawings, planning application and to administer the construction work.  However this is my ‘day job’ (or was until I had the kids!), so I’m confident about doing this.  Most people don’t have past experience of building projects and have to rely on the advice & services given by the local authority, which as I say, seems to differ greatly from county to county and doesn’t appear (ever?) to include any architectural design advice!

Many of my friends are telling me that the advice they have been given may improve accessibility in specific ways, but also compromises their homes in other, more fundamental ways.  With the grant (understandably) being a limited sum, it so often doesn’t cover the work required, so people are having to look into borrowing more, to do work that will help in some ways but will ‘devalue’ their houses, leaving them stretched financially and potentially in a worse position if they have to sell and move home.  A few have just opted out completely and are struggling on with no accessibility improvements.

I’m re-energised to try and get a message to those who can make a difference in this process.  A more cohesive grant process is needed, a more holistic attitude to the house and family and a long term sustainable view.

I’m compiling a to do list to start ‘shouting’ more loudly about this issue.  Of course, if there were more homes built to inclusive design and accessibility standards, people would have the option to move house, but there’s not – there’s really little or no choice in most areas!

First on my list I think is to start gathering case studies and survey experiences to try and demonstrate where and why improvements are needed!

So….who want’s to tell me their story!?


We are a family of four (Mum, Dad, 6 year old EJ and the 3 year old EW….plus two pointy rescue dogs).  Like most families, we have a selection of differing needs in our home (human and hound!), the most notable, in relation to accessibility, being that our 6 year old has an undiagnosed genetic condition which affects her overall development, including her mobility.

cover photo family image

When EJ was born we lived in a small one bedroom flat in London which we had lovingly refurbished. Unfortunately (after looking at many contortions of the plan to try and squeeze another bedroom into the small footprint) we had to accept that it was just too small for our growing family.  We couldn’t afford to buy a family home anywhere nearby, so when I was pregnant we made the decision to move out of the city altogether.

We were very lucky to find a ‘fixer upper’ in a village with a station on one of the mainline commuter routes to London.  Our (accidental!) tactic of housing hunting in the run up to Christmas definitely seemed to have given us an advantage! – not as much competition at that time of year and we found that the vendors were keen to get things agreed before the holidays! The house also needed a lot of TLC, which I guess may put a lot of people off!

We think the house was built as a fruit picker’s cottage at the turn of the 20th century.  Although it’s made of a local east anglian ‘block’ called clunch and rendered on the outside, the layout inside is of a fairly typical 3 bedroom semi-detached Victorian cottage.  It does have a funny little later side extension which means there is a bathroom upstairs without losing any bedroom space.  At the time we bought it, EJ was just a few months old and we had no idea about her condition or how it would affect our future.  If we had known, perhaps we would have made a few different choices about the house at the time, although getting a working heating system, re-wiring, new kitchen and bathroom and basic decorating took us to the limit of our budget, so it’s hard to see what else we would have done at that stage.

Three years on and we now find ourselves in a house that doesn’t really meet the needs of our family. EJ has very limited mobility. She bum shuffles and can walk a little distance with adult help or in her walking frame. Outside we use a specialist buggy/wheelchair but rarely bring it inside (partly as it’s nicer for EJ to shuffle around independently, but mainly) because we have an awkward threshold to step over at the front door and a very narrow corridor, plus more steps throughout the ground level, narrow doorways, and no storage for the wheelchair or her walking frame.  The wheelchair therefore lives in the car and the walking frame in the kitchen or at school. However the biggest issue is that we have to carry EJ up and down (our very steep!) stairs to bed.  Slim as she is now, she is only going to get heavier!

So we have two options: Move or Adapt!

Unfortunately there is an acute shortage of suitable accessible properties available on the market, and those that are available are either way over our budget or would need so much spent on them that it would take them over our budget – therefore moving is really not a viable option.

So we find ourselves looking again at the design of our home to see what alterations and adaptations can be done to best include EJ in as many aspects of family life as possible.

Thankfully there is some financial support in the Disabled Facilities Grant (DFG) available which will help us to fund many of the essential adaptations.  (The DFG is means tested for adaptation for adults, but not for children, and the advice and process can be very hit and miss, stressful and is very inconsistent from county to county – improving the process is one of my missions!)

For us it is key to ensure that anything we do now to improve accessibility will be as flexible as possible to allow for EJ (and the rest of the family)’s changing needs……….not to mention trying to keep the house feeling like a family home and not a healthcare setting!

Read more here….