Wednesday, 26 June 2013

Disability & Caring : Lots going on lately personally & politically

Lots in the news affecting those who care for the disabled, recently. Very easy to get very depressed with the constant stream of ill thought out comments and policies coming from the government. One light in the gloom was the debate in parliament about the daily struggles of family carers. The ministers that spoke seemed to "get it" , but I seriously doubt whether the kind words and recognition will turn into concrete policies and finances to help those in such a position. They talked of making sure respite was made available for carers, this is very important but with competing demands on council budgets likely to get squeezed out, yet again. I for one have been told that if I am able to get back to work , even though I will look after my Husband at weekends solo my allocated respite will have to be used to cover any out of course work shifts, I do not think the politicians had that in mind when they coined the term "RESPITE" .

Benefits & Support :
I am glad to see that government is having another consultation regarding the new 20m rule for proving whether you are able to walk unaided or not, being the ruling factor as to whether you will be able to get access to the mobility scheme or not. Now whether they will listen or not is another story. Does not directly affect us as Hubby is totally immobile. The bedroom tax saga rolls on with , ill considered comments by Lord Freud in a letter he has written to local councils regarding redesignation of rooms as not bedrooms and the charges for rent there after, made me extremely angry as it will indirectly make the building and redesigning of homes for the disabled financial suicide for Housing Associations. More thoughts later re housing.

We now have one good care worker allocated to us, still very slow process finding the others we need, but I guess we will get there. No doubt there will be some last minute crisis management, NHS good at that, when I get a new job.

Our Fresh Wheelchair Accessible Vehicle:
What a disappointment, our second hand Kia WAV Evolution has been. Has cost us a lot of money in replacing the fuel pump, now the reversing sensors have gone. We bought a "Dog" as my Hubby would say. For those thinking of buying such a vehicle by the way, yes loading / unloading is space efficient, but not easy as you end up crawling all over the wheelchair users to connect all the restraining straps. Once the user is in place you can not open the passenger door to get to the left hand side of the user, which is a pain in the neck. The front straps never get tight enough to be totally safe as they have to be fed around the wheelchair sides from the anchor point because going in a straight line would mean them flipping up users footplates, hitting their legs or  feet. Oh and being a diesel, yuk! noisy, non responsive piece of crap.We have nick named it chugger. I would personally recommend a side loading up front passenger, like that of the Chrysler Voyager as being a better but of course more expensive option. As soon as I am back at work we will be looking to get rid.

We are still stuck in our unadapted first floor flat unable to convince anyone who can do something for us that it is totally unacceptable. To recap, we have a wet room that is so small Hubby gets his feet regularly banged on the toilet when sat in his commode. None of the doors have been widened. We have carpets which are a total pain for wheeled conveyances. A lift the only access, that is too small carer plus user can not easily travel together in. Also too small for ambulance trolley. The building construction is such that no ceiling / wall hoist can be fitted. The rooms are too small for use of an electric wheelchair plus have any furniture, the bedroom likewise and care-workers can not access all around the bed, to use sliding sheets etc. We have no where to put the vital for his long term health tilt table that he needs. When back at work I will find a corner in the room we use for storage, as none is provided by the HA. Our flat is positioned right over the badly supervised bin room, where during the hot weather, we get the smells & flies it produces. Our next door neighbour is a heavy smoker and we have the pleasure of breathing in her second hand smoke all day, even though OH already has breathing problems and I have a history of bronchitis. The kitchen is totally inaccessible. The flat is dark contributing to OHs vitamin D deficiency and his danger of breaking bones.This leads to poor old OH being strategically placed in a spot in the front room in front of the telly, as moving anywhere else in the flat is a logistical nightmare. What a way to treat our disabled. So I follow with great interest the debates at the Housing 2013 this week on twitter. Some how we have to get the local authorities to wake up and build more wheelchair accessible bungalows. If it means building in US style timber framed buildings so they can be bigger without costing more then so be it. I would love to live in an american style home, they are warm, cosy, open plan, accessible and fit for purpose.


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