I have bitten the bullet and contacted the local press...

[SleepyJess]

..about out housing situation. Last time I 'reported' on here we had had a reply from out MP who was appalled by my description how we have to cope in our blatantly unsuitable house (re DS2's disability). He was going to contact the housing assoc.'s director. That was in early Dec. We have heard nothing since. I have contacted his office but appears they have not had a response to his letter.

In the menatime we have had another comprehensive assessment by a different soc. services OT and altered out requirements a bit (ie that we would be willing to accept a house with a downstairs room that we could make into a bedroom for DS.. and also widened the area in which wew would accept a house.. which is now a 35-30 mile radius) and this has all been sent on over a month ago to the HA. They don't respond to my calls though.. or actually, I don't get further than the receptionist.

I have done what everyone has been telling me to do for ages (people on here.. health professionals, friends, family etc) and emailed the local paper. Can't bring myself to contact the local TV newsdesk... too too cringeable. Am balking at the thought of the local paper etc round here.. but I can't watch Alex suffering anymore. We are ALL suffering.. but Alex can WALK with a walker! But there is no room for a walker in the house! He gets so frustrated and upset and being penned in between gates all the time.

She (lady at the paper) has just emailed me back asking for phone number (altho I HAD included it) but I have to do school run so will probably miss hercall.. bugger.

Will keep you posted.

SJ x

SJ have had this prob for years
doormat here btw

Ds2 extension grant has come through, emb will pay extra £10,000 but I am being blackmailed by HA to sign on the disability register
this means that if they find a property that is cheaper to adapt, we will have to move

I have not signed nor never will as this is my ds' home.
will be going to local ombudsman
cat me or am [email protected] on msn

Hiya, have you heard back yet?

good for you SJ

Good luck, SJ. It sounds like someone (or a few 'someones') need a good kick up the @rse.

Good luck SJ. You have done the right thing. Loads of love to you all.
Ellbell

good luck

Yes she rang me yesterday and the photgrapher is coming at 4.30 to take a picture of 'all the family.' I am cringing muchly now.. esp. as DS1 (13) said to me 'what do you want to tell the whole of Kent all our problems for?' and that made me ask myself (again!)..yes, why do I?!! :(

When she rang, she wasn't all that 'warm' and it was easy to imagine she was assuming we were 'just another benefit-claiming family out for all that they can get'. I know this is probably just my paranoia.. but this morning I sent her another email which I will c&p below.. containing all the info I put in the original email (which she stated she didn't get/hasn't read (?) all of) (I meant I know I go on.. but i am a bit worried that she will rattle off an article that does not say what I want it to at all!).. and also what I hoped to get across/achieve form the article.

Please tell me what you think.. as I am bricking it and feeling like scum of the earth and wanted to phone up and cancel the photographer. It took me along time to get to this stage.. (even though I have had some people say.. don't bothered with local papers.. go straight to the Meridian newsdesk!)

Anyway.. here it is.. including all the info from y/day..
Hi Liza

Just wanted to say thank you so much for considering our situation for an article (re our housing problem with regard to our disabled five year old son Alex) I really am very grateful but was wondering if I could request a couple of things before the article goes to press.

I am very anxious for us not to appear as 'just another family on benefits out for all they can get' because this is very far from the truth. I am not suggesting for one second that that is what you would do.. at least not intentionally but have often seen articles that come across this way in the [another local paper] (to give one example). I want people to realise that we don't expect the 'ideal house/bungalow' to fall into our laps but that I can't stand silently by any more watching Alex be negatively affected by our housing situation when there MUST be a more sutiable property out there somewhere, which would at least give him the ability to use his walker. Under any other circumstances I would not be speaking out about it and indeed have thought long and hard about doing so now.. but I don't know of any further way forward now other than doing what others have done in our position - which is to publically highlight the problems that our housing situation is causing Alex.

I know space will be limited but I would be very grateful if you could include as much info as possible into the article re the problems affecting Alex, caused by where we live. I know you didn't receive the other emails in their entirety so I am copying and pasting the relevent info below with a few additional pieces of information.

I hope you don't mind this request, but it has taken a lot for us to do this (have no wish, really, to tell the whole of [home town] (plus) our difficulties but we are doing this for Alex) and just wanted to try and ensure that the article comes across in the way that I hoped.

Thanking you very much in advance.

Kindest regards

Sleepy Jess

We live in [address and town], in a [xx Housing Association] property which is extremely unsutiable - and becoming more so all the time - for the needs of our five year old son Alex who has cerebral palsy and other difficulties (including developmental delays and epilepsy). We have had two comprehensive assessements carried out by social services occupational therapists who have stated that we urgently need rehousing in a property with a downstairs bedroom (or room that could be used as one) and preferably/eventually (with adaptions if necessary) specialist downstairs bathroom facilities for Alex. As Alex gets bigger and heavier, the problems we are facing are becoming unbearable as the stairs (even with stair rails) are so difficult to negotiate whilst carrying him. Both my husband and I have fallen on the stairs whilst carrying him. In one occasion I suffered a coccyx injury which caused me problems for some months and which required a course of physio. My husband already has a serious back problem exaccerbated by the need to carry Alex and I cannot always be around to do it.

Worst of all, Alex is now ABLE to use a Kaye walker and get about independently (he uses one at school) but at home there is absolutely no space and so his development is now being hindered considerably due to our housing situation. There are many other issues but this is the one I am finding hardest to accept (that he now CAN now walk.. with aid.. but cannot do so in his own home)

The reason we cannot under any circumstances (unfortunately) look to buy a suitable property ourselves is because my husband is also disabled with a form of arthritis and has been unable to work for some years now. I do relief work (as a TA in an infant school) and am studying part time for a degree (to help our change our situation in the future), but am unable , in the foreseeable future, get a proper job that would enable us to obtain a mortgage, due to the needs of my family. (We also have two other children, aged 7 & 13.)

Other issues which are making our housing situation increasingly more difficult are:-

• Alex is unable to walk/stand unaided but is a very mobile from a crawling/cruising point of view. However, due to the layout of our house, we have to have large gates (they are actually dog-restraint gates) at all door ways in order to keep him safe. This basically pens him into the (very small) living room like a caged animal and he is started to show signs of real frustration at his enforced lack of mobility. He has always been a very happy , contented child in the past.

• Last year I begged [x housing] to allow us a small paved area outside the back door where he could use his walker outside in good weather. They agreed (to a very small section) and on the day they were supposed to be ringing to let us know a date for it to be done, they failed to ring, so I rang them to be told this offer had now been retracted due to a funding issue.

• Our house is situated down a walkway where there is a no-parking rule. We have rrequested and obtained permisson to make our small front garden into a place to park our car (for ease of transporting Alex to and fro) but [x housing] said it HAD to be done professionally. We can't afford this and so we have to park some distance up the street which is very inconvenient for either carrying Alex or either putting him in and out of his wheelchair.

• We have absolutely no wheelchair adaptions whatsoever and are not allowed any because we are on the transfer list.

• Our two sons share a room which would be fine under normal circumstances. However, Alex is a very poor sleeper and so keeps his brother DS1 awake half the night. DS1 has cystic fibrosis (a serious and life threatening lung disease) and lack of decent rest poses a very real risk to his ability to fight off chest infections.

• We have to bath Alex with our 7 year old daughter in order for her to help support him in the water. Social services have offered equipment to make bathing Alex easier but it was very big and impractical and took up too much room in the (small) bathroom because my husband already has special equipment that is used and store in the bathroom to help him during an arthritis flare up.

• We have no suitable storage space at all for all the many and varied peices of special equipment Alex needs. Our tiny downstairs hallway is dangerous and cluttered because we have to store the wheelchair and/or walker there.

In November, after meeting someone who lived in a house that was custom built for a wheelchair user and seeing without any doubt how much easier our lives would be if we lived in a house like that (and it was a rented housing association house!), I wrote to [local MP], who wrote back immediately saying he was appalled by my description of our situation and would be writing immediately to the director of [x housing], although I have contacted Mr MP's office. It would appear the [x housing] have failed to respond to his letter.

The situation, apart from the MAIN issue, which is how we can see Alex suffering, is now putting us under unbearable stress as a family. Alex, although a lovely child, is very hard work and high maintenance and we also have my 13 year old's serious medical condition (cystic fibrosis) to contend with as well as my husband's disability which causes him to be in chronic to severe pain every single day.

[X housing] Assoc.'s housing list operates on a priority points system and we have 300 points which puts us at the top of the list for families with our type of problem but despite this we have not had a single offer of a property to look at.

Good luck.

You have certainly given her plenty of information for her article.

Yes.. but what worries me is will she actually use it.. or just make us look like scum of the earth sitting on our a*ses waiting for the world to provide for us!

I can just picture the photo.. us sitting sullenly in a line along the sofa... with a caption like 'Family Complain That Big House Still Not Provided'! Ok so I know the headline (if there is one) would not say that.. but oh God I have seen those kind of pictures.. and artcles that give that kind of slant.. and that really is not what this is about. I just want my little boy's life to be easier.. he has it hard enough!

She has not replied to email. I feel like cancelling but what other avenues do I have to pursue??!

SJ-still-cringing...

Can you seek assurances before the photos are taken ?

That was why I emailed her... she was so unforthcoming on the phone that I am loathe to try and get hold of her.. do you think I should?

Part of me thinks it can't do any harm, otoh she may feel that if you call her that you are effectively telling her how to write her article.

Difficult one, what does your DH think ??

Oh SJ what a lot you have to deal with, i hope that this gets you the publicity that you deserve

He thinks it will be fine but then he doesn't have paranoia issues like me. He doesn't care what people think and says 'bugger them if they judge us.. I'd like to see them do better than we do with what we are dealing with' which is the right attitude to have of course.

I suppose stories about people being benefit-claiming scum for the sake of it are not really such good news as a disabled child being done of a healthy living environment is it? Maybe it will be ok..

Thank you Jenk x

Sleepyjess.

Can I just say, I think your very brave
And I hope getting the press involved helps you improve your situation for the benefit of all your family...

GOOD LUCK

emma

Good luck, I hope they do take note of all your points and publish them, then I'm sure something will be done for your family.

Thinking of you.

PS Don't forget the lippy!!

Thanks Emma and Pindy :)

The photographer has just left.. and crikey, I wish he was writing the article! He was absolutely great.. really sympathetic and said he has seen SO many of these situations in the last 24 years (that he has been doing the job) and can spot a less-than-genuine case a mile off. He said that sometimes he does get to offer input to the reporter writing the article so I hope he does in this case as he had a cup of coffee and sat chatting to us for nearly an hour and got loads of info that I didn't put into the emails (and they were drively enough!)

Will keep you posted. It might be in this week's paper. Eeek. I hope this artcle is as I would like it to be.

SJ x

I think your story would come across well. You're not asking for a massive house - just a suitable place to live. It's not at all unreasonable to ask for somewhere where:

• A 5yr-old boy is given the opportunity to walk in his own home;

• A teenager with CF can sleep through the night;

• A husband and father with a disability can have a bath in comfort;

• A 7yr-old girl can have a bath alone as she gets older;

• Parents don't have to worry regularly about falling down the stairs etc.

I hope it all goes really well and that the powers-that-be get the kick up the @rse that they so obviously need. :)

Oops! Should probably have re-phrased that. It makes it sound as though you have 2 men in your house wanting a bath together.

PML Coppertop!! (Thanks :))

Odd update. The photographer (who now seems to be on first names terms with DH!) phoned this evening while I was at swimming club with the kids and asked if he could pop round again later in the week.. and that he would phone first to say when. DH said yes of course and was there a problem.. and the photohgrapher said no, no problem.. but that he had been thinking about our situation and about Alex and about how it his for him and his 'little world' consisting of mainly our small living room when he is at home.. and said he had been talking to some people.. contacts of his.. and also some of the people at the paper and so needed to come out and have a chat with us and was that ok?

So DH said yes but that he was a bit puzzled.. and he said it was nothing to worry about and that he would explain everything when he popped round which would be before Friday. (???!!)

So no idea what that can be about. DS1 reckons he has tickets to give us for a local footy game (as he was talking a lot to DS1 and DH about football and saying he covers some of the local games) but DS1 would think that! Wishful thinking more like! :)

The reporter replied to my email of earlier to say that the article would not now be in this weeks paper as there isn't enough room left so would be in next weeks. She also said that the photographer had got straight onto her when he had left and that he has been very moved by Alex and out situation and asked to be kept informed of the story.

At least it looks as though it might the sort of article I hoped for rather the one I was imagining earlier!

My guess is that someone (individual or a business) wants to donate something to ds or the family. Ds1 might even be right about the football tickets. :o

I'll be looking out for the update! :)

He is coming at six tomorrow evening (Fri) so will let you know.

The reporter emailed me again this afternoon and wanted lots more personal info for the article. It will definitely be in next Thursday's paper. She also said she has put in calls to the housing association, the council, and the MP.. and that she and the photographer were already feeling very "infuriated" on our behalf.