Wednesday, 17 February 2016


We are still in the process of sorting out a replacement activity for Stacie on a Thursday - had a review meeting with our new social worker/care manager last week which seemed to go very well.  There are three possible choices - now we have to wait and see which one has vacancies and whether or not it is approved by the panel at Adult Services.

This kind of thing is always a worry - in the current climate (and even before) I am always expecting the worst and to have what we have taken away.

Today we have a financial review to see whether or not Stacie can contribute to her Direct Payments (which are used to pay for her weekly activities) using her income from her ESA & DLA payments.  I've had to think of everything I spend her money on and list it.  The anticipation of today has worried me ever since it was arranged - again, will we have what we have taken away?  We manage OK on what we get with our resources pooled together - we can't afford luxuries but we get by just fine. The thought of possibly having what is basically a cut in her benefits and it being dependent on what one woman thinks of us today is frightening.  I hate being dependent on anyone, it's a loss of control, and what is even worse is knowing that there is very little I can do about it - I can't ever get a 9-5 job whilst I am her carer, so we are very much at the mercy of benefits agencies.

So here I am, feeling slightly sick, hoping for the best but very much fearing the worst. 

N.B. I needn't have worried - we were visited by a lovely lady who made sure that everything was OK and our finances stay completely as they were.  It doesn't change the fact that the fear & anxiety before meetings like this are impossible to quell - for me anyway!

Wednesday, 6 January 2016

Cuts In Care

For the past few years my daughter has been having a careworker take her out for the morning once a week in order for her to do whatever she wants.  Usually it consists of visiting some garden centre or other, feeding ducks and doing a bit of shopping.  Simple pleasures but it gave Stacie some independence as well as a chance to go out without her mother for a change.

However, this week, Monday to be exact, I was informed that the company providing this service are dropping my daughter - with immediate effect.  Today's visit will be the last one.  Whilst I understand that the company has been taken over by a larger one and that as such there have been a lot of changes, mainly in paring down the Supported Living side of the business, I am outraged that they hold us in such contempt we are only worth a few days notice.  My daughter doesn't understand or care that they are in the business of making a profit and that helping people live an independent life is obviously not profitable when compared to sending careworkers on house visits - they can squeeze a lot more house visits into three hours, far better than one person getting a good day out. 

What my daughter will care about is not seeing a lady that she has come to love spending time with ever again.  She will care that her Thursday outings will suddenly stop with no explanation - what does she know about profit margins and staff shortages?  Sometimes what is labelled as the caring profession isn't very caring at all.

I'm hoping that with the help of our very nice social worker we will be able to arrange either another company to provide the same service or another activity on that day.  I just wish we had been given a decent length of time in which to do it.

Monday, 25 May 2015

...And Yet...

I still got a penalty fine notice from the NHS regarding my daughter's visit to the hygenist.  Had a very unpleasant phone conversation with one of their operators who told me at one point 'Just because your daughter has Down's Syndrome doesn't meant she is entitled to free health care'.  I beg to differ...
Whizzed off a letter the same day, enclosing copies of her ESA letter and the new HC2 form and complaining strongly about this guy's attitude on the phone,  and got a letter back practically by return post saying they were closing this matter.  Wish I could count on that - we shall see next time.

Why is everything always a battle?

Tuesday, 5 May 2015

And Done!

It took a month, but everything I filled in forms for in April has come through successfully - passport took a fortnight, the health form took three weeks and the change in benefits took a month, but everything is sorted out and we are on an even keel once again.  Let's hope it lasts!
Here's my lovely daughter having a wonderful time bothering some farm animals...

Wednesday, 1 April 2015

On Getting It Done

One of the worst things I find is filling in long forms on my daughter's behalf.  There is always the worry that I haven't done it right, have I left something important out or put something I shouldn't in; will it affect our status quo detrimentally or will there be an improvement?

I've had to complete several forms for her this past ten days - first was the re-assessment for E.S.A., which was a doozy.  About 30 pages long, and I found it very confusing and daunting.  I have to confess I began it last week, got disheartened and left it for about five days before plucking up the courage to get it finished.  It had to be done because she is in the wrong grouping apparently and has lost eligibility for free prescriptions and dental care, as well as receiving less money than she should.  So if all goes as it ought to, we should be better off - but I still have that underlying silly fear that by poking the bear with a stick, I might jeopardise what we have at the moment.  I'm a relatively intelligent woman, these forms should not phase me, but they do.

Second was an application for an HC1 which is a form stating that she is entitled to help with medical costs, to tide us over until the ESA is sorted out.  Not quite such a long form but still confusing to me.

Third was a passport renewal form - easy enough, even I can handle that one!  However, the post office clerk rejected our application on the basis that in my daughter's photo one strand of hair was touching her eyebrow. Hmmm.  Was she correct or did I cheese her off by asking for a 'quick check & send'?  I meant nothing by it, but her response was that it would be as quick as she was able...oh dear.  So, it had to wait a week until my daughter had another free morning and off we trotted to the photographer to get it re-done.  There then ensued a public showdown between me and my daughter as she point blank refused to have her hair brushed back from her eyes and was recoiling and fending me off as if she is beaten on a regular basis, while the very young photographer is looking on in horror.  I  finally managed to get the fringe away from her eyes and luckily the lad responded to my "do it now, quick!" with speed.  After a few attempts (blinking, mouth open) we got a decent picture.  Note, all staff at the photographers could not understand why the original photo had been rejected.
We then walked the ten yards to the post office and submitted our form to a different clerk.  All went through ok this time, and to satisfy my curiosity, I showed him the previous photo and asked if he would have passed it.  This (very experienced) chap said he would not have had a problem with it, although did admit the second photo was probably better.  So it would appear I had wasted a week due to some lady's bad attitude...nice.

I cannot explain why I find this all so difficult, but it causes me endless worry. Perhaps because it's a heavy burden to bear all round, and this just adds to it or perhaps because you are always at the mercy of some clerk or other who really doesn't care about your personal circumstances and might just be having a bad day themselves.  Now I have to try not get myself in a state while I wait for the outcome...

Sunday, 15 March 2015

ESA/Income Support/Free Dental Care - Confusion

A while back we were told that my daughter had to stop getting her dental care at Farnham Special Dental Care Unit and move to Aldershot Health Centre.  This appeared to be an administrative decision more about catchment areas than whether or not people were getting the appropriate care.  Needless to say, the change caused endless problems, the first being my daughter's aversion to anything new and different.  The new dentist is perfectly capable and a lovely woman, but in my daughter's eyes, she is a stranger and no way deserves any cooperation whatsoever.  We have had two years of clenched teeth, tears, struggles and as a result, below par care which has nothing to do with the poor dentist's efforts.  Despite appealing to the NHS office who ordered this change, we are stuck with their decision - I am wondering how long it will take before my daughter accepts the new setting & staff.  It took years for her to relax and be comfortable at the previous hospital, so I guess we are in for a long haul.

Coinciding with this, I then had letters after each treatment session threatening me with a hefty fine for claiming free dental treatment that apparently my daughter was not entitled to.  Each time I wrote back explaining that she was entitled and asking why we had been sent these worrying letters.  I never got a completely satisfactory explanation, just told that they had no records of her being entitled.  So it was time to do a bit of investigation.

It was fruitless trying to get through to any kind of Benefits helpline - I found that as such, it does not exist any more.  Trying to get through to the Job Centre Plus or any other relevant office was pretty hopeless too.  So I phoned the Down's Syndrome Association and got through to a very helpful lady who pointed me in the right direction.

It would seem that with the various changes to Income Support that have been put in place by various governments over the past few years, at some point my daughter was put into the wrong grouping.  Me being totally trusting of bureaucracy (silly me!) never queried the name changes or amounts involved, assuming that they knew what they were doing.  It would seem that around about the same time we had to change hospitals for dental care, ESA was introduced and we lost our entitlement to free medical care. 

So now I have to fill in a very thick form to get my daughter re-assessed as it would seem that not only is she in the wrong grouping for medical care, she is also receiving less money than she should be.

Yet again I wonder why it always has to be a battle in order to get anything done correctly - I find the form filling in daunting and soul-destroying and the temptation to leave things as they are is strong.  I'm not going to though, I'll just have to bite the bullet and get on with it, clenching my teeth very much in the manner of Stacie in the dentist's chair!

Wednesday, 19 November 2014

End Of An Era

When it's time to eat my words, I have no shame in doing so and admitting when I'm wrong.  My post a few weeks ago about strategies being used with the child I was assigned to felt true at the time, but I fear it was just a honeymoon period.  We had a few weeks of keeping the peace, a few blow-ups on his part but they were managed at the time with minimum fall-out.  I wasn't enjoying my job particularly, it felt like walking on eggshells and I had to be one step ahead of him the whole time in order to make sure nothing set him off.  Have you ever heard the story about the little boy who had to be kept happy because if he wasn't, he had the power to make the villagers experience terrible misfortune or even die?  That's what it felt like to me, and I really resented having to let him get away with behaviour that would have caused my own children to be under house arrest in their rooms until they apologised and changed their ways!   I also was not happy with the constant worry that he might get handy with his fists or feet at the drop of a hat - it made life stressful to say the least.

Strategies were followed, but a lot of the time it is not possible to get an angry flailing six year old into their 'quiet area', let alone keep them there until they calm down - half the time you are exascerbating the behaviour and causing it to escalate.  Which it did, quite spectacularly a couple of weeks ago.  It began with a tantrum over spellings - he hadn't paid attention to the teacher, got them all wrong and when I was quietly correcting him and showing him the right way to write them, he lost it, threw his whiteboard and while looking me straight in the eye, lobbed a chair for good measure.  I was pretty fast and got him into his quiet area, whereupon there ensued a fifteen minute struggle, trying to prevent the tables following the chair, him escaping, all the while fending off kicks, bites and punches.  Nobody was going to get calm any time soon. It ended with him coming at me with fists flying as I was sat on the floor - I restrained him as we have been taught, in a firm but gentle bear hug, pinning arms to the sides.  It was not easy - he's a big lad, and may I point out that up until this time I had been left on my own to deal with this. Finally the teacher came over to assist, and I lost concentration for a second and he got an arm free and punched me in the face, knocking my glasses off.  At which point I realised I was going to lose my temper any second and that I really did not want to be doing this any more, so I left.  First time in my life since being a stroppy teenager I have walked out of anywhere that angry, slamming a door behind me - it was not a good feeling, very frightening and shook me up for the rest of the day.

It took the headmistress and another LSA half an hour to control the child, during which he managed to throw a heavy book at the head, cutting her face and bruising her nose.

So, I refused to work with this child ever again - it felt horrible to admit defeat but I am in my fifties and my patience and body are no longer what they used to be.  I  have to go home and care for my daughter and to be in a state of stress does not help matters there either. There is also the fear of injury - if anything happens to me, I would be unable to look after my daughter and there is no-one else to take over should I be incapacitated. It is also very hard to do my other work as an artist when my brain is whirling with the events of the morning - and the potential for an injury to my eyes or hands affects that too.

I have been assigned to another troubled child - who I could probably work with now that I have got to know him and discovered that despite his outbursts there is no risk of bodily harm! But the heart has gone out of me as far as this job is concerned.  I'm no longer working with special needs children, it feels more like child-minding/being a bouncer.  I have loved working with children with Down's, using what I know to help them progress and grow; I thoroughly enjoyed working with children with speech and language problems, MLD and those needing occupational therapy - to know that you have contributed in some way to their improvement and growth, to see them confident and happy as they go on to junior school, it makes the job worthwhile.  But there does not appear to be a place for me to do this any more at this particular school, so I have decided to leave.  It is sad in a way - it has been 11 years of ups and downs but thoroughly rewarding up until now.  I know I have moaned and whined over the years about clearing up bodily fluids, the frustrations of seeming to get nowhere for weeks on end and dealing with parents intent on scuppering their child's learning with good intentions, but it has been something I have actually been happy to do because at the centre of it has been a child who needed something I was able to give.  It no longer feels that way - I feel weary, slightly demoralised and the motivation has gone.

Having made that decision though and handed in my notice, I am excited to be moving on - it's time to try and make a go of being a full-time artist, which ultimately has always been my vocation in life.  I'm hoping that while doing this, I will be able to return to happier times, devote more time to my daughter's needs and no longer run the risk of being punched in the face unless I absolutely deserve it!