Because in real life there is no DIY SOS

I’ve never managed to get through an episode of DIY SOS without crying. Between the personal stories of the families for whom daily life at home has become such a struggle and the transformative work of Nick Knowles and his team, I’m damp eyed and lumpy of throat from the start.

Beneath the wonder though, at their clever design and heartfelt efforts, is a backstory.

Behind the handpicked selection of families for whom DIY SOS is a savour are thousands of families who need their help just as much.

The families you see on DIY SOS are not such a rare commodity that the problem of accessible housing can be solved by the benevolence of a TV production company alone.

In the real world, the material side of the TV screen, there is no ready-made supply of suitably adapted housing for those who find themselves disabled or who have a disabled child.

Moving house, even to a bungalow situated on the most pancake flat of plots, doesn’t solve the common problems of doorways too narrow for wheels, space to be able to get in and out of the bath or in to bed using a wheelchair, ceilings strong enough to take a hoist, a flat driveway for an adapted vehicle, and a home big enough for the whole family and all the adapted equipment, plus perhaps carers too.

Homes like this just don’t exist in the British housing stock. When we were facing the prospect that our home may not be affordably or practically adapted for our little boy, we looked, and Rightmove served us nothing.

Our first attempt at adapting our home, working with the Disabled Facilities Grants team from our local authority, didn’t go so well. Two years of lift breakdowns, exposed live electrics in the lift shaft and a garden with a newfound post-apocalyptic wasteland design, cracked oil tank as the centre piece, left us stuck.

Both lifts stuck at half mast, luckily with nobody in them

Often stuck in lifts.

Permanently stuck in a home we could now neither live in safely nor sell.

So we stayed put and hoped, with our creative thinking hats firmly planted.

The difficulties we faced with the Disabled Facilities Grants process are not unique.

Of the families we know who have used DFGs to help them adapt their homes, at least half of them have had to have the work redone because of poor design or workmanship.

The grants, while seemingly generous to an untrained eye, don’t touch the sides of the real cost of adapting a home.

The design process, led by local authority teams who often have little experience of complex adaptations and limited knowledge of the equipment and supplies available, can be fraught with difficulty.

At one point, plans were drawn up to site a through-floor lift in the middle of our kitchen, in front of the fire place, while outside a zig zag concrete jungle had already been created.

Often, families are told they must sacrifice their entire and only reception room to house a lift or a downstairs bedroom, leaving nowhere for the family to sit.

Often, hospital style plastic flooring in the home is pitched as the only acceptable option by local authority teams. Not because it is the cheapest. But because the process is rushed and ill-thought through, having not progressed from the ‘medical model’ era of disability (google it, but only if you’re not feeling vulnerable).

Often, ugly metal ramping is used in and around people’s homes when non-slip tiles or deck boards would be just as safe and sometimes cheaper.

Often, families are left to manage contractors they have had no involvement in choosing, that have been appointed by the local authority, with ill-conceived plans and vague budgets, leaving them exposed financially as well as causing damage to their homes.

Others are told their homes cannot be adapted at all and they must move which, all too often, isn’t true.

To be able to stay in your own home when you’re juggling the perpetual curveballs that disability brings means that some small thread of the narrative of your life can remain constant.

To be able to stay in your own home and have it adapted sensitively, without whiff of industrial wasteland nor hospital, is life enabling.

Over the last three years, we have worked with our local DFG team to help improve the process. Not just for us but for other families in Cornwall too.

I can say that lessons were learned from our first round of disastrous adaptations and the Cornwall DFG team has gone on to improve the service they offer to one that is becoming more family-centric, transparent and supportive.

As a result, four years after we first started adapting our home, we have just finished.

Our garden has an outdoor lift, to get our little boy safely from the house to the car, with two flat level play areas for him to access.

Accessible non-slip composite decking

The whole garden is still a useable family space, with enough room for us to grow things, barbecue, lounge and do gymnastics to our hearts’ content.

Wheelchair accessible artificial grass play area

Incline wheelchair lift from Cama in Denmark

 

 

 

 

 

 

 

 

 

 

 

 

 

The lift we chose was bespoke built, allowing us to have a safe way of transporting a wheelchair passenger in and around the garden without compromising on space.

It is marine grade, to help it survive the salty sea air where we live.

Inside, we created our own design and plan for the adaptations, which was then tweaked and tested by the DFG team to make sure it was viable.

Accessible bedroom plan

Pollock through floor lift

Since none of us would have benefitted from having a through-floor lift sited in the middle of the kitchen, we tinkered with the floor plan both upstairs and downstairs which meant we have been able to site the lift in its very own hallway space, tucked neatly away next to the utility room.

Tweaking the floor plan and moving the family bathroom meant we have been able to create an adapted en-suite for our little boy, with his own bathroom including a bath with a built in hoist seat and a riser to help carers to wash him comfortably.

Adapted bathroom with hi-low bath and electric hoist

 

Adapted en suite bedroom with wheelchair lift

Of course, no adaptations ever come cheap. Even bad ones.

For us, the DFG has covered the cost of the lifts and the bath and not much more. We have had to take on a significant amount of debt to fund the work and may be working until we die to pay this off. The DFG team has had to pump in additional resources to fund the rectification of the mistakes made the first time around.

The end result though, is a home that our little boy can stay in. A home that we can all live in as a family, that he can remain a part of and that we can enjoy in as normal a way as possible.

The brutal alternative would be for him to go into year-round residential schooling, at a vast cost to the state, while we waited for the gold dust that is adapted social housing. Which of course, none of us wanted.

Instead, we are able to stay in our own home independently, at a significantly smaller cost to the state, as well as keeping our family together and maintaining a sense of control over our own lives. And dignity.

That’s the power of a well-planned disability adaptation.

Who it’s all for

 

Disabled Facilities Grants: this way madness lies

Disabled Facilities Grants: this way madness lies

The irony of having written a post just this week about getting out of the house more as a family has not escaped me as I sit here in my house on a rainy Friday, with a broken lift outside in the garden.

As many of you will know, we had lifts fitted in our garden in February 2014, funded by a Disabled Facilities Grant and facilitated by Cornwall Council, to enable us to get in and out of the house with Orange in his wheelchair.

The construction works were fraught with difficulty, in the hands of wide boy contractors and a council adaptations team that didn’t know what they were doing, or were off sick or on leave throughout the project.

As a result we were left with lifts that never worked reliably from week one, and a garden completely obliterated by builders who decided to work to their very own unique concrete obstacle course design.

For the past three years, we have complained and negotiated with the council to rectify these problems. To provide us with lifts that work, and to rectify the dumpster fire that is our garden.

I wrote about it in this post from August 2015, when our lift dangled open dangerously leaving a two metre drop for one of us to fall in. This made front page news locally and finally kicked the council into action to think about rectifying the issues.

Being diplomatic, it has been a learning exercise for the council. For 18 months.

At times, we have even felt listened to by the council, and that we had made progress together, and helped them to improve their processes for managing Disabled Facilities Grants.

Today, three years since the first ill-fated works were done, we were due to have our kick off meeting with the council adaptations project manager and their engineer and the new contractors to discuss the new works.

I had hoped this evening to write a really positive and happy post, celebrating that we had a start date for new works to begin, and that we had got through this difficult process with the right outcomes, that the council had listened and learned from their mistakes and this would help not only us but other families needing adaptations works in the future.

Unfortunately I cannot. Because the council have let us down again by deciding not to show up to our kick off meeting. They cancelled it fifteen minutes after they were due to arrive. Apparently because they could not drive to us in the rain, down roads that both we and the double decker bus and countless other vehicles had no problems with this morning.

Instead, I have spent the last two hours writing a complaint to the Local Government Ombudsman and calling a lawyer, as well as negotiating with the council yet again to send an engineer to fix the broken lift outside.

If I were to count up the hours, days and weeks my husband and I have spent trying to resolve the issues related to our home adaptations, the countless lengthy meetings, emails, phone calls, coaching the council through their own management of the contracting firms they hire, or how to dial in to a conference call (I kid you not), and negotiating with them to fix the mess they have caused, I have no doubt at all of the significance.

And yet this issue is not unique. Up and down the country there are families dealing with the same issues. Funding applications that are declined, council adaptations teams giving bad advice on where equipment and adaptations should be fitted, work being undertaken poorly so it has to be redone, families with broken lifts who can’t get in or out of their own homes.

It’s an issue that the Local Government Ombudsman has investigated repeatedly in the past and need to do again. It needs a national spotlight on what is a systemic and endemic problem affecting families all over the country.

Disabled Facilities Grants should be a good thing. To enable families to do basic things like get in and out of their homes, move around and bathe, eat and sleep safely. And yet it isn’t. Often it’s a disaster.

I will be writing to Penny Mordaunt MP, the Minister for Disabled People who I met last week at Westminster. I will also be writing to the Womens & Equalities Committee who have disabled adaptions on their radar and were discussed just this week.

If you have had an issue with Disabled Facilities Grant adaptations, please do the same or feel free to share your story here if you would rather stay anonymous. Equally if you have positive adaptations stories to share please do so we can shine a light on good practice!

Project ‘Get out of the house 2017’ #wheelygood

Project ‘Get out of the house 2017’ #wheelygood

You know those grey February days when you think it should be spring but it just isn’t quite yet? When the deliciousness of summer beach picnics and lounging about in the park has faded just a bit too far round the memory corner and your feet have forgotten what it means to be flip-flop ready?

So, for me, that’s today in a nutshell. Sat under a blanket for the third day running in the inhospitable company of a vile and flu-like thing, I’m going more than a little four-wall-crazy. And when daytime TV becomes intolerable the internet is my friend between naps, nose blows and making irritating requests for water and ‘something spicy and scratchy’ to eat.

So I’m planning some family days out.

This year we promised ourselves we would do better at getting out and about to explore the beautiful part of the country we live in. Nestled in south east Cornwall, we have all of not just Cornwall but also Devon right here on our doorsteps but we have fallen into routines and habits that mean we often visit the same places. Partly because we like them but also because for us they are ‘safe’ options.

We know that the Eden Project has a Changing Places loo with a bench and a hoist so we can change Orange and that the whole place is a wheelchair accessible, sensory paradise where we can always get something delicious, allergy free and mashable for Orange to eat. It’s an easy, enjoyable and inspiring day out for all of us.

And the wine is good. So it’s always a win.

Out late and totally winning at life at the Eden Project

We know that we can get an all-terrain wheelchair onto any of the beaches in St Ives, and that the food options there are top notch but that the disabled parking only lasts three hours and the alternative, the train in and out from Lelant, isn’t wheelchair accessible.

We know we can easily get a wheelchair round the National Maritime Museum in Falmouth then go across the (flat) square and eat lobster at Rick Stein, or visit the National Marine Aquarium in Plymouth and dine like kings at Rockfish afterwards but, while all of these venues have plenty of room to install one, there is no Changing Places loo at, or even near, any of them.

It’s a car boot job or filthy floor of the ‘disabled loo’ (is that mud or poo, water or wee I’m kneeling in today?) to change the boy, risking basic hygiene, spines and dignity as we go.

We know that any beach with a slipway is our friend for a sunny day out with a picnic, and some beautiful wheelchair friendly walks can be found on the moors to either side of us but the same changing challenges abound.

Wet through, attempting a change on the back seat of the car in a public car park

Sometimes, the sheer planning of a day out with Orange means we don’t do it at all. Because family life can be pretty exhausting as it is, and honestly it’s often too much of a bore to try to figure out if a new place we have never been before, a new walk, attraction or picnic spot might be accessible enough for us.

Strangely, access statements don’t seem to contain the information you need if you are going out and about with a disabled child who is 100% reliant on a wheelchair.

We’ve had some pretty dire experiences on days out where the accessibility has not just been an afterthought but where there has been no thought at all.

It was on a ‘challenging’ family day out to Cotehele, a local National Trust property, just before Christmas when I figured that since over half a million tourists visit the south west every summer and 2% of those are likely to be wheelchair users, that’s over 10,000 people a year who  are being poorly catered for.

10,000 people a year. Most of whom are probably here on holiday with their families, because wheelchair users don’t travel alone any more frequently than ambulant folk do.

So that’s actually 30,000-40,000 people a year visiting Devon or Cornwall who need better disability provision, and clear information about that provision, so they can enjoy a family day out.

Even with the distinct advantage of living in the region and knowing where to look, planning a family day out and being confident we will have everything Orange needs is a military exercise.

Just last week, I was planning a walk on Dartmoor and had to visit six or seven different websites just to find an accessible walk, nearby accessible parking, whether there was a Changing Places loo (there wasn’t), and whether there was an accessible child-friendly pub/restaurant/cafe anywhere within wheelchair striking distance that would serve something Orange could eat and that we would all enjoy. That wasn’t booked three weeks in advance.

I’m ashamed to say, I gave up. We stayed at home.

We can’t keep doing that, though. Because venues and owners of public facilities simply won’t be persuaded to install accessible facilities if they don’t see the need. And they won’t see the need if we all stay at home.

I know the National Trust staff had never even thought about the negative impact of keeping their accessible entrance and exit at Cotehele under padlock and key (that you had to go into an inaccessible building and join a queue to request to be unlocked) before we pointed out to them how exclusionary that was.

Guess where reception is? Up some steps, ta da!

I filmed it and everything, because I had total National Trust hives by then and really needed to leave… 

Trying to leave Cotehele in a wheelchair

But fresh in anger we made a promise to ourselves. That we would go out and about with Orange in his wheelchair in a much more intrepid way than we have. Because we need to get out and about for our health and wellbeing. It’s a fundamental need, as well as a nice thing to do.

I also made a promise that I would use this blog to start to build a useful resource for people who might be planning a holiday or a visit to Devon or Cornwall and who are finding it hard, like we do, to find places to go on wheels. With information that’s more user friendly than a tick box access statement. A little mini guide to getting out and about as a family with a wheelchair user in the south west.

It will start small but, since we’re never, ever moving house again (not just because we love it here but also because disabled adaptations will see to it that we can’t, but that’s another tale), I figured that over the years it might build into something really handy for people.

Having sunk to a new flu-based low of watching Parliament Live for two days now, this morning I stumbled across the #disabilityinquiry in which Changing Places loos were a hot topic.

It reminded me of our promise to get out and about with Orange, to go to new places and to start to build a place online where families can find genuinely useful accessibility info about our beautiful part of the country.

So I suppose this is the distinctly low key launch of what I am going to call #wheelygood. Or not. Watch this space for our first trip out, once this flu-vile thing-bug interloper buggers off.

Orange This Way will be taking part in Disabled Access Day, 10th-12th March 2017

 

The Money Pit: Making a Home Fit for an Orange

The Money Pit: Making a Home Fit for an Orange

What makes a home?

Four walls and a roof over your head? A place that you love, where you feel safe and happy? Somewhere that you can make your own?

Filled with trinkets, dust and clutter or Kon Mari’d to the hilt, a garden with pinstripe lawns and bursting with flowers, or over flowing with children’s toys, are our homes not are an expression and extension of ourselves, who we are, and the people, experiences and things that are important to us?

If you’re a Five Year Planner, a Zombie Apocalypse Prepper, or a fan of lists and spreadsheets (like I am) you will understand how moving into a very old house desperately in need of a top to toe refurb (as we did) and not being able to do it, or even plan properly for how you might do it, (as we haven’t) is enough to make you want to run away, drink gin and live in a tent.

Four years since we moved in, really, I just want to put the whole house in Room 101 and hide under canvas on a cliff top. Right now our home unabashedly tells the story of us floating about in limbo, of hopes as yet unrealised and of best intentions to help from the council that failed.

Because as much as I’d like to start re-landscaping gardens, ripping out kitchens and replacing windows, we have had to hold fire on everything but refitting the makeshift loft extension because we have to adapt our house for Orange. So he can do simple everyday things like get in and out of the house, move around the house in his wheelchair, sleep, eat, bathe and dress.

Our first attempt at adaptations didn’t go so well. You might say.

Expensive. Tearful. And full of F words and C words I don’t wish to repeat.

For the last two and a half years, our garden has been impersonating an industrial wasteland (we are sorry, beautiful Downderry), with lifts that don’t work how they should, concrete paths that shouldn’t have been laid and a striking 1,000 litre plastic oil tank as a stand out feature piece, sitting taped and cracked, proud and high like a mocking memorial to the whole sorry, and expensive, process.

“Beautiful sea view you got but, you know, I just adore that tank!”

We didn’t want lifts in the garden just for kicks. For the Waitrose man to bring the shopping up in or for snails to find comfy homes. After falling down the steps carrying Orange, we needed adaptations and we needed help from the disability adaptations experts at the council to get them right and help us fund them via the national Disabled Facilities Grants scheme.

A system supposedly set up to help people just like us.

And yet the system failed us when we were at our most confused and afraid, with a little boy who couldn’t walk but no-one could tell us why or whether any of the gruelling physio and therapies we were instructed to do every day would actually ever help.

An ill-conceived job, put into the hands of people who were quite happy to take the council’s Disabled Facilities Grant money and disappear off on holiday to Goa, leaving ancient and decrepit workmen who should have long retired to complete a job they were unfit and unskilled to do.

I am relieved and happy to say that the adaptations team at Cornwall Council have made a lot of changes to how they do things since our experience. There are some dedicated, kind and thoughtful people in their team who have listened and who really do want to make things better.

But that doesn’t change the fact that the cost to fix this mess and to build a safe and functional way in and out of the house for Orange is eye watering.

And like a string bean, the boy just keeps growing. It’s not just the outside that needs adaptations, but the inside of our house now too.

I have walked miles around my own home over the last couple of years, trying to visualise where a through-floor lift might go, how we might fit in an adapted bathroom for Orange, where ceiling track hoists might go…

Do we need to widen doors? Move the stairs?

Change bathrooms into bedrooms and bedrooms into bathrooms?

What is that pipe? Where does it go?

Do we need to lift the flagstone floors?

How much will it cost? Can we afford it?

Help.

And so four years in, we are campers in a home we haven’t yet really made our own. With the exception of the living room which has been adorned with the permanent marker of a small girl who thought the ambiance would be much improved by a giant black lighthouse on the wall, we can’t do anything much at all until all the adaptations are designed, built and paid for.

All tent jokes aside, we have considered moving. We really, really have.

But it doesn’t solve the problem that whatever house we live in, we will have to adapt for Orange. And there really are no step-free bungalows on a flat piece of land, with wide doorways, hoists, adapted baths and enough space for a growing family anywhere within a sensible commuting distance of the children’s schools and work.

There just aren’t.

In truth, at £30,000, the DFG is a dinky pebble in the ocean when the cost of a lift alone can be £20,000. Even with a DFG for the outside, and a DFG for the inside, we will need to find money in the tens of thousands to get the jobs done and have a house that is functional, habitable and doesn’t look like a hospital. Or an industrial wasteland.

It’s just the way it is.

And so with blind faith we are leaping into the chasm of asking the bank for large amounts of money and hoping that eventually we can one day pay it back.

Because what is the choice? Really there is none.

When people are surprised that I have fought to maintain my career, that I work a full time job while being a parent carer, this is why.

It is one of the reasons why I don’t take kindly to criticism of me being a full time working mother, from those who think I should be a ‘rock’ at home for my children, or that I have ‘made a lifestyle choice to work’ (yes, there are still people who think this way).

It is why I will continue to campaign for the rights of working parent carers to hold on to their jobs when people and systems around us tell us that we shouldn’t or that we can’t.

Because disability is expensive. And the more disabled you are, the more expensive it is.

And so until I can galvanise to campaign for Disabled Facilities Grants to cover the actual cost of adaptations (because right now, they don’t touch the sides), we, and many other families alongside us up and down the country, step, headlong, into the Money Pit.

Wish us luck.

 

A very public (in)convenience

A very public (in)convenience

This post first appeared as a guest post on the Cardew Physio & Performance blog as part of a series of blog posts promoting awareness of continence issues during National Continence Week.

I don’t know about you, but one of the reasons I’m not at Glastonbury this weekend with all the other mud-coated revellers is because I can’t quite get my head around the festival loo situation. Queuing up in the rain to use a long drop with no toilet paper is enough to put me right off going to Glastonbury, even with the most star-studded of line ups or luxury boutique camping on offer.

But can you imagine if there were no toilets at Glastonbury at all? Or if there were toilets that were only accessible to people over the height of 6ft 5? Or that would collapse if anyone over 10 stone entered the cubicle? There would be uproar among the hundreds of thousands of Glasto fans.

Or, quite simply, people wouldn’t go.

We have become used to toilet facilities being available to us pretty much wherever we go in the UK. Public toilets began being introduced in London in 1851 and since then have become a familiar feature of cities, towns, villages, attractions, public buildings and restaurants across the country.

It would be unthinkable to go for a day out in a public place or to a major event and there not be a toilet available, right? Wouldn’t it?

Unfortunately for some of the most vulnerable people in our society this is not the case. Until the advent of the Changing Places campaign in 2006 there were no toilets available in the whole of the UK for the ¼ million people who cannot use standard or typical accessible/disabled toilets.

According to Changing Places, this includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, severe physical disabilities as well as some older people. A quarter of a million people.

This quarter of a million includes my son, Lawrence, who is five years old and wears a pad because his disabilities mean he does not have adequate control over his own toileting, or the ability to transfer to a toilet, even a ‘disabled’ one. He needs to be changed by a carer, regularly, throughout the day.

When he was tiny, we used the baby changing facilities like every other parent. Luckily, these have been installed in most public places and restaurants across the country because managers have recognised that families with young children are an important and valuable part of their customer base who have money to spend.

Unfortunately the same is not yet true for severely disabled people. A quarter of a million people. And their families.

In the vast majority of public places in the UK, the place where severely disabled people get changed by their carer is the toilet floor of the disabled loo. The filthy, often urine-soaked and dirty, toilet floor. A place that most people would only want the soles of their shoes to touch.

This is the now the reality we face with our little boy. The same reality faced by vulnerable, severely disabled people and their carers across the country. It is not safe. It is not dignified. It is not kind. It is often the reason why severely disabled people and their families are limited to local short trips out only, or why they very rarely leave the house at all. For many carers, lifting a disabled teenager or adult from a wheelchair onto the floor of a toilet and back again would quite simply be impossible, never mind the filth.

What people like our little boy need is a toilet that can be used in safety and comfort for both him and for us as his carers, which has more space than a conventional disabled loo and the right equipment – including an adult sized height adjustable changing bench and a hoist.

Changing Places have made great progress on campaigning for suitable toilet facilities for severely disabled people over the last 10 years, but there are still less than 1,000 across the whole of the UK. In Cornwall, where we live, there are only 10 Changing Places toilets in the whole of the county.

I am delighted to say that this will soon become 11, as a result of a local parent the new (and fabulous) Cornwall Services on the A30 has understood the need for these facilities and is fitting one as I type.

I am, though, sorely disappointed to see that in all the £17.6 million revamp of the Hall for Cornwall, there are currently no plans to install a Changing Places toilet, despite vocal campaigning from parent carer and disability groups.

John Lewis (a favourite retailer of mine until last week) responded to Changing Places a few days ago to say that they ‘didn’t have space’ to fit a Changing Places toilet in one of their flagship stores that has over 70,000 square footage of retail space. Imagine if they said they ‘didn’t have space’ to fit regular toilets, or if they said they didn’t have space for a café, or a shoe department? Unthinkable.

Already, even with Lawrence being quite small, we are finding ourselves planning family days out and long journeys around where there is a Changing Places toilet. We love the Eden Project, because they have a fabulous Changing Places loo, as do the Life Centre and Drakes Circus shopping centre in Plymouth. But beyond that, it’s pretty sparse. What will we do when we can no longer lift him ourselves and when we get sick of carrying around a mat soaked in urine from the toilet floor?

We will be isolated.

You see, it’s not just the person with disabilities who suffers when there is no toilet they can use. The lack of Changing Places facilities isolates entire families too. Families who have money to spend at your restaurant, shop, theme park, hotel or festival, just like everybody else.

So please, if you are a restaurant owner, a hotel, shopping centre or theme park manager, or a local authority public convenience planning officer (do they even exist?) then please, please fit a Changing Places toilet. Not only will you see the investment repay itself with new loyal customers but you will be changing lives.

Oh, and by the way? If you’re heading to Glastonbury this weekend and one of your party is severely disabled, you’ll be thrilled to hear that the festival has a Changing Places toilet in the Spring Ground Accessible Campsite. For everyone else, if you’re not keen on the long drops, you might want to check out the compost loos… Good luck 😉