Housing and Care a User’s Perspective.

Introduction

I am writing this to give those working in Housing and Care one users perspective of what is wrong with the current system and why it does not work for us and from what is seen, heard, around us does not work well for others as well.

Background

Back in 2009 my then 64 year old husband qualified for NHS Continuing Care, having been infected in his neck with Staphylococcus Aureus which caused crushing of his spinal cord, leaving him a partial tetraplegic with the added complication of having only one kidney as the right one was removed due to cancer. He has lots of medical complications caused by his spinal cord injury, is very severely physically disabled, cannot walk or stand and has limited arm/ hand function, needs help with all bodily functions, but is very much fully compos mentis.

We had recently returned from working abroad so to get local social services help had rented a totally unsuitable bungalow where Hubby had to be bathed in a paddling pool sat in his commode, stretching the shower hose over him. So when we were moved to the fairly new first floor flat in a development at an extra care facility, we were relieved to have at least a very small wet room.

Very soon after moving in we realised what a huge mistake we had made.

·         The master bedroom is not big enough to take a hospital plus a single bed for me at weekends when I am in charge of Hubby’s night care. Not big enough to allow care workers enough room to safely use a mobile hoist and be able to access the bed all around for using sliding sheets etc.  This has meant that I feel I have been forced to use a very dangerous to me manual lifting regime to get Hubby in and out of his wheelchair / bed. The room is carpeted which is causing difficulties in keeping it hygienically clean, water transfer from wet-room, accidents,  wheelchair tire tracks. The building construction means there is nothing solid to attach either a ceiling or wall track hoist.

·         There is a lack of storage space which means when I sleep in the spare room I have a usable bed which is surrounded and crowded out by stuff that we have nowhere to put. No secure storage for bicycles (my hobby), lack of built in wardrobes and not enough space to be safe in the flat and build some ourselves.

·         The wet room is so small that we have had some accidents when manoeuvring him in his shower chair, painfully catching my fingers, Hubby’s knuckles and toes.  

·         All of the doorways are so narrow that Hubby has to be extremely careful when lining up his chair to get in and out of the two rooms that he uses.

·         Our living room is too small to take a sofa, chairs and Hubby’s wheelchair plus the two side tables he needs so that things are within his reach.

·         All of access in, out and around our flat is very difficult to manage so Hubby is in effect imprisoned in two North facing dark rooms except for the occasional trip out for hospital visits.

·         Only access is via a lift that is so small that in an emergency it will not take an ambulance trolley. Also when we venture out I have to send the lift down and run down the stairs to meet it.

·         Our care workers when here sit at our small dining room table, with no proper storage place for their files and paperwork.

·         One luxury we have is a second bathroom which gives our care workers a separate hygiene area, and somewhere to store the hoist that they have to use. Not really a luxury as our home is their place of work, we don’t want to share a toilet with them. Accidents happen as well and they need some where to shower and change. It also means that I get to soak my over worked family carer aching bones in a hot bath now and then.

·         Our kitchen is totally inaccessible to Hubby.

·         A couple of years ago our housing association thought it a good idea to take away the wooden threshold strips leaving a 1 ½ inch gap under the door which then sucks into our flat the second hand cigarette smoke of our neighbour. Not an ideal living arrangement for a tetraplegic who is on the very limits of being able to breathe unaided. Also she is an added fire risk that with limited evacuations options is not acceptable to us.
Since writing this in January, our next door neighbour set her flat on fire, sadly losing her life. Despite what was reported in the local paper we did not have a safe exit option, we were trapped in our flat while they put the fire out. There was dense smoke blocking our only exit from the flat. It is even more urgent that we are moved to some where that is safe.

Needless to say we are both totally fed up with living somewhere that is totally unsuitable, is not enhancing what little life Hubby has left, and putting me as his carer at physical risk.

The Challenges

So what have we done to try and remedy the situation?  Three years ago we met with a council OT, who agreed that in principle we were housed in the wrong environment, were awarded the maximum points for a medically based move. Looking back on the interview, with the hindsight of doing more research, I now realise, from the way we were spoken to, that we were being condescended, that our concerns were not being listened to, but being replaced with pre-conceived notions of where disabled older people should live.

Since being on the housing list we have met with the obvious attitude that “you should be grateful for a roof over your head”. People in general do not recognise that disabled people should have the same choices as everyone else as to where and what kind of place they want to live in. This is obvious with the few places that we have been given the option of looking at. OAP bungalows with even less space, houses with tiny internal wheelchair lifts that Hubby cannot operate safely etc. It is becoming very obvious to me that no one has thought to build or adapt existing bungalows to meet the growing need for disabled wheelchair users that maintain their independence in the community by making use of care teams. Local Authority teams do not recognise the different space requirements of totally independent wheelchair users and those that need a care team.

The other day I looked at the floor plans for a new over 55 development in Bourne Lincolnshire. Not one of the floor plans had a bedroom big enough to accommodate 2 single beds plus wheelchair manoeuvre room or a separate hygiene area for care workers. Everyone seems to think the elderly and disabled want to live on a postage stamp.

So having increasingly despaired with the social housing market I turn my sights to private rentals. We would have to contribute more to our rent as the housing benefit allowances for private are not as generous, but as I fully intend to return to work as soon as possible this is not a big issue if we can get a landlord to work with us to make a bungalow accessible. We came across somewhere that we could have made perfect for our circumstances, it needs some alterations for has lots of potential. We got past the first hurdle of the rental agencies that usually suddenly make the property unavailable to disabled enquirers, got to speak to the landlord to explain our situation. He seemed very understanding of our plight, I explained that we would need to change the on suite bathroom into a wet-room out of our meagre savings, then once moved in apply for a disability grant for the other changes that we needed.  Also that longer term if my work situation panned out we would look to buy it off him. I also explained that we would need some sort of secured tenancy as to apply for the grant the council want to know you can live in the property for five years. Anyway we left the conversation at that point, as we had to involve the estate agent he was using to manage the rental. So I talked it through with the agent explaining the different type of rental agreement we would need, as she had no experience of other types other than the short-hold, 6 month, 12 month assured tenancies more usual in the private rental market. The estate agent and landlord subsequently had a conversation and unfortunately the landlord was not in a position to grant us a 5 years short hold or an assured tenancy so our perfect property fell through.

This means that in most cases the private rental sector is totally unavailable to mobility restricted renters, but the local authorities / social housing associations are not providing it either, does not sound very equitable or fair to me, or looking after our most vulnerable in society, does it you?

Still we have not given up, we found a company that sounded promising at first. They said they would find an investor to buy somewhere for us, for us to rent from them. This company so far has failed to find such an investor to help us.

Then I heard about a scheme for part ownership / part rent shared ownership scheme especially for disabled people on benefits. Guess what no help there because Hubby is over 65 and because I hope to return to work.

A Way Forward.

With the pooling together of Health and Social Care I am hoping that local authorities will feel more obligated to get housing right for those that have care teams. There needs to be recognition amongst all involved that health does suffer if housing is not right. Not just the disabled person as well, but family carers and the risks in the work place for paid care workers.

More people are having care provided at home, not just the short visit kind, but up to 24 hour coverage, which enables them to stay out of care / nursing homes. Suitable housing must be made available for this group.

Space for a wheelchair user is not a luxury it is a basic health and safety requirement.

Social Housing Providers need to do the following :-

1.       Make those needing specially adapted properties a priority as this group has very little choice to go elsewhere.

2.       Study in close detail, and case manage the disabled / older persons on their housing lists.

3.       You may not have the right housing stock. Think outside of the box where necessary to provide solutions either through new build or the adaptation of existing open market available properties.

4.       Listen carefully to the disabled as to what they need to get by, they are the experts on what it takes to get them through on a daily basis.

5.       Make sure properties are not in socially isolated areas, disabled want the same location choices as everyone else in society.

6.       Remember it will be a home but also in many cases a place of work for care workers.

7.       Stop putting wheelchair bound users on anything but the ground floor, it is not safe, even with lifts available , if cannot walk down/upstairs.  Increases evacuation time, can get stranded outside home if lift out of order. Puts unfair onus on care workers and fire department to evacuate person.

We will keep fighting on to get suitable housing for ourselves, not what someone else thinks is suitable but what we know will work well for us.

Angela