|[THUMBNAIL: Left - Abbie then 3, holding newspaper over her head whilst standing on suitcase ramp at our front door. Right - View of our Thru-Floor-Lift blocking main window]|
As soon as I found out I was pregnant one of my first thoughts was, “Where are we going to live?” The extension that was built onto my childhood home had barely enough room to swing a cat, despite having a great wet room. Sleeping arrangements with a cot etc weren't going to work. Neither would my partners parents home, as there were no suitable amenities.
Upon visiting the Citizens Advice Bureau, we were advised against looking at private renting as most landlords will not allow permanent adaptations (ie. ceiling track hoists) and felt social housing would be the more favourable choice. Reason being with social housing, the property is allowed to be adapted to almost any mean to suit a disabled person's access and care needs.
So with that knowledge I went to Bolton Council and filled in an application form for a council property under medical grounds. With it I included proof that I was 6 weeks pregnant so that we wouldn't fall victim of the bedroom tax as we would be using the 2nd bedroom for baby.
I thought I'd done everything right. I had wrote extensively about my medical needs with a muscle-wasting condition. That a bungalow or flat would be most suitable as I'm in a powerchair (non-ambulatory) and needed a wet room. Within 2 weeks I got our unique housing ID and was instructed by letter to start ‘bidding’ (expressing interest) on properties on the ‘Homes for Bolton’ website. Every week for 2 months I bid our maximum of 3 per week. Mostly bungalows that stated they were at least somewhat accessible and had walk-in-showers (which if they could confirm had no rim on the floor, then a shower chair could work with a squeeze) or wet room already. Nothing. I didn't understand it.
So off I went back to the council and that's when I found out, despite all the information I had originally given, we were only allocated Band C. Those allocated this band are not classed as priority and can wait sometimes years to be housed! Surely this wasn't right? After further discussion we learnt we should of registered ourselves on the ‘Disability Housing Register’ as well. This is something I didn't even realise existed, nor did anyone at the council mention upon receiving our housing application. Afterall on the original form I filled in the extra medical needs section. Anyway, as instructed I registered there too. A week later a Disability Housing Officer called us in for a meeting.
This is where wires started to get crossed, when really you'd expect doors to be opened at this point. In this meeting she asked all about my condition, how it affected me, my mobility, the fact I have carers in and out and we spoke in great detail of all the adaptations I'd need made to a property. She wanted to know the adaptations that needed to be already installed and others I needed long term. That seemed to make sense. At that time I felt I was really listened to and she had a good grasp of the situation. She immediately got us bumped up to the highest priority band; Band A. I continued to bid….
Bungalow after bungalow went by that could've worked for us on paper. I carefully read each detailed description. Wheelchair accessible. Check. Wetroom. Check. 65 and over and disabled ONLY. Check. WRONG! I was now 4 months pregnant, been hospitalised twice with complications and was extremely stressed out not knowing where we were going to end up. I ended up back to talk with our dedicated housing officer, who was supposedly trained in this area and I should of had every faith she knew what she was doing. When we asked why we were getting no offers on our ‘bids,’ we discovered TWO major issues..
We apparently were not eligible to be housed in a non-sheltered bungalow that was already wheelchair accessible. Why, isn't that absurd?! Because we were NOT over 55 and disabled. I was baffled. How did I not qualify? It was a misunderstanding of the wording on their policy. The statement actually meant you needed to be over 55 AND disabled. NOT that it was allocated for over 55s as well as disabled people of any age.
This housing officer was crossing off any other bids on flats as they didn't have ALL the adaptations I'd need long term. Crazy! Like we were going to find that “perfect” property that magically already had all the accessibility I could ever need.
There was an awkward silence after these revelations. I knew the first thing I needed to do was to make her understand if she was going to reject every bid I made on the system because it wasn't “perfect” for us, we were NEVER going to find a property. Again, I focused on the two essentials (ground-floor access and suitable shower area). I knew with the help of an OT the rest of the property could be adapted as needed if we were living there permanently. Secondly, I questioned the absurd bungalow policy. Arguing it's most cost effective to put our small family into a bungalow than any other property type. Could she help get the policy waived for us? No, she had no clue who dealt with that sort of fight and explained that if we wanted housed ASAP to start preparing for baby. That getting into a policy argument would just take too long. So that was the end of that. She was right in that sense, we'd wasted too much time as it was and we needed a short term solution at least. The housing officer agreed I knew what kind of house would work for us, so she’d no longer block the bids she felt weren't a good match and let us receive offers on what I felt would work until further adaptations were made. Maybe now we'd get somewhere!
At 7 months pregnant, c section scheduled just a month away, we got an offer on a ground floor flat with walk-in-shower.
I was elated! Our first offer after 7 months. We went to view it. A modest 2 bed, toilet and sink completely inaccessible but carers would be able to get my shower chair in the shower area, just! I had to take my footrests off to go into baby's room too unfortunately.
Time was up. We had to accept it.
We weren't allowed back on the register for 6 months. By that time my nerves were shot. We'd had 2 attempted break-ins in the early hours and thugs tried to take my metal ramp from the front door to trade it in for cash on several occasions. The fire service had been sent to evaluate the properties safety too, that's when they realised the flat wasn’t just unsuitable, but unsafe for me. If there was a fire and I was the only one home, I couldn't open the front door. They tried to adapt it but due to it being straight on from a narrow hallway, I couldn't get the angle right to do the handle from my powerchair.
|[IMAGE: Me in my powerchair in the back of the moving truck]|
Our next Disability Housing Officer was amazing. Within weeks of applying she personally turned up at our flat, with the most incredible news! There was a 3 bedroom house, with a Through-Floor-Lift, wet room, ceiling tracks on both floors and an environmental control system so I could open doors etc myself. It was perfect. She put us at the forefront of everyone else due to it ticking so many boxes, saving thousands on funding to adapt another property to the same degree. The sad thing was, the disabled lady who lived there was being forced to move somewhere else as the bedroom tax meant she was in arrears. Her children had grown and left home. Despite it being fully kitted out for her needs, she had no other option to start again in a 1 bed flat somewhere. Due to her severity the council agreed not to evict her until another suitable property was found. 3 months later we got a call, the council had agreed to waive the bedroom tax for her and she was now able to stay in her home of 15 years. The reason, very simply was they realised they weren't going to find another suitable property for her. Although my first thought was I was so pleased for her, but then what happens with us now?
We were eventually offered a 2 bed house with a stair lift and walk-in-shower. We had the OT come view it with us. She said she'd make all sorts of adaptations once we were in. A Thru-Floor-Lift being the major one, ceiling track hoists and a permanent front door ramp amongst other things. The area was so much better. Near good schools and a local park. We accepted the offer on the grounds my partner would only be lifting me on and off the stairlift until grants were applied for and permanent adaptations made.
|[IMAGE: Thru-Floor-Lift descending blocking large living room window, Abbie on looking from the sofa]|
Things were going well until the Thru-Floor-Lift was installed. With nowhere else for it to go, the lift takes up ¼ of the modest living room and master bedroom. The whole street sees when it's in use as it's right up against the main windows, They ran out of funding to put the track hoist right from the bedroom, across the landing into the bathroom. So instead they put one track hoist in each. Meaning I have to go up and down into each chair more and takes far longer for my PAs to sort me out.
In 2014 due to chronic pain, I became unable to use my shower chair. My specialist said I needed to switch to a bath with support so I could remain in a reclined position (which decreased the pain). At first the council rejected the application to rip out the shower and replace with a bath with the overhead hoist, despite my now changing needs as my muscle disease deteriorated. After writing a lengthy letter in desperation to my local MP, she got the ruling overturned. Success at last! 6 months later the work was done to replace it. Only now the bathroom was so small the toilet and sink then became inaccessible.
Fast-forward to 2017, now 4 years later in this mid terest and now with two young children.
Cuts to funding meant the permanent front door ramp that was promised upon viewing this property was never done. I still need to be heaved over the doorframe at a harsh angle with next to no turning space for my powerchair and onto the suitcase ramp that's now survived 6 years of constant use. This means I still cannot enter or leave my home without assistance.
I still cannot use the sink in the bathroom without getting trapped. My girls think it's normal to brush their teeth at the kitchen sink with Mummy.
I have to be hoisted into the bath with the bathroom door wide open, as there's just no room and PAs struggle to navigate in so little space with equipment.
Due to the top landing being so dangerous I fear I'll slip off the top step trying to make the turn into my daughter's room, therefore I do their entire bedtime routine downstairs.
I watch them play in the back garden from the kitchen window due to the back door never being adapted either.
|[IMAGE: Me propped on the sofa, both girls on either knee reading a bedtime story]|
What breaks my heart most is the fact my little girls won't remember me tucking them in at night, playing with them in the garden and think it's perfectly normal to brush their teeth in the kitchen. Although in every other area I try to make up for my lack of access and overcompensate as I feel guilty. I never wanted my disability to affect their childhood, and feel with each passing day living in a house that wasn't built for wheelchair access is making me more disabled than I actually am. Not having access to certain rooms and spaces causes a lot of frustration and sadness, especially over my ability to parent due to access of all things. Having to ask others to help my children with things I could and should be doing, if I had access to the area they needed help in, makes me feel inadequate as a mother. Even though I know deep down this isn't by choice, it's the circumstances our family is in. Doesn't help make it easier in that moment.
Our home cannot be adapted further without a large 2 floor extension according to an upto date OT evaluation. An extension to such degree to allow me more space will cost too much to be funded. So I've wrote a letter to my local MP explaining our situation and pleading Bolton's bungalow policy be changed to include people with disabilities of ANY age. If I am successful, it would mean my current equipment could be moved to a suitable bungalow which will already have wheelchair access and turning space I need.
A win, win for the council's budget and us!
The crazy thing is, Bolton is not the only council that has an age restriction on bungalows. Working with various disability groups, I've come across several other cases where individuals under other councils having to simply make do and struggle in unsuitable properties due to this ridiculous policy too. So it's not like ours is an isolated case. Therefore needing thousands worth of adaptations just to make a standard property work. Even then, some council properties are too damaged to undertake the added strain of ceiling track hoists or through floor lifts. The council is then forced to repair the property in the most minimal way cost and timewise to even start to adapt it! Or like in our case, the extent of work that needs done to make it truly accessible is just too extortionate with depleting disability cuts up and down the country. And you just reach a dead end…. The mind truly boggles why the ageist policy was implemented in the first place and has stayed in effect this long?
There is a MAJOR disability housing crisis and somebody needs to shine a huge spotlight on it to make changes happen.
Together with Muscular Dystrophy UK's Trailblazers, we are hoping to blow this absurd policy out the water. If your local council also goes by a 55 and over age restriction on non-sheltered bungalows, please get in touch so your local authority is included in our plight. It's so important to speak up, many voices are so much louder than one!
This blog post is linked-up with the following blogger linkies: #BlogCrush #Blogstravaganza + #AccessLinky