Success!

Well, it took 4 months, but we have now got Stacie into a new weekly activity - she chose the Launchpad ladies coffee morning on Wednesdays.  It had to go by the social services panel for approval, which went well and we were allocated some money for transport as well.

Yesterday was her first time there and I decided that I would accompany her in the taxi to make sure she got there safely, as she had no idea where she was going.  Just as well, as upon arriving at Farnborough Library, we discovered it was shut until 9.30 and no-one there knew anything about any Launchpad meeting!  After a couple of frantic phone calls to the lady who organises it while the taxi driver patiently waited, I finally got hold of her and discovered that they actually meet up in the neighbouring community centre and walk across to the library when it opens.  I'm pretty sure I wasn't told this, but last week I was dealing with the death of our much loved dog and quite frankly was not thinking about anything else, so it might have been my fault for not registering what I was told. (Don't think it was though...)

Anyway, we eventually found the right place, by which time Stacie had a face like thunder as she had no clue what was going on, what she was supposed to be doing or who she was supposed to be doing it with and was not happy at seeing me walk off and leave her there.  I spent the whole morning waiting for the phone call to say she was either crying her eyes out or had shut down completely and was refusing to move when asked.  However, no phone call!  Then after 12 p.m. I was waiting for her to come home, hoping that being brought back by taxi on her own would be less fraught than the early morning trip.  Sending Stacie off on her own to places with people I don't know always worries me - if anything was to go wrong, she would not have the first idea of what to do and she is very vulnerable.  You have to put your trust in complete strangers, trust that they will look after her as well as you do and that they will return her safely - it's very difficult.  I did use a taxi company that already takes her to her Friday activity as in my experience they have always looked after her well, the drivers being friendly, helpful and kind. (The chap that took us there in the morning was brilliant, waiting for over 15 minutes without complaining while I tried to sort out where Stacie was going, and then bringing me home.)

However, I needn't have worried - the taxi pulled up and she got out with a big smile on her face.  She brought home some bunting she had made and told me that two of her long-term friends had also been there.  When asked if she would like to go there again next week, the answer was a resounding yes!  Which means we are sorted for the forseeable future.  The next worry is the government cuts to funding for services for the disabled - Stacie's Friday activity might be in jeopardy, but we'll cross that bridge when we come to it.

Anxiety...

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!

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.

...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?

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...

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...

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!