Prescription Charges 2

Well, I had a long conversation with an advisor at the Down's Syndrome Association today and found out all the details regarding free health care for my daughter.  Apparently, it is the case that anyone with Income Support gets free prescriptions but anyone on Incapacity Benefit does not.  This includes glasses and dental care.

However, the present government are changing the system yet again, and anyone currently on Incapacity Benefit will be moved onto something called Employment and Support Allowance, which is basically the same thing except each person will have to undergo an interview to check whether or not they are fit to go to work.  This is part of the government's plans to weed out the benefit scroungers and make sure anyone getting support is eligible.  It is a gradual process apparently as they slowly work through all claimants - hopefully with our name beginning with 'B' it won't be too long.

Once my daughter is on this 'new' benefit, she will once again be eligible for free health care - all a convoluted process, but I can see the reasoning behind it.

Interestingly, the DSA advisor said that many parents were angry that their child would have to go through an interview, but she pointed out that surely this was the best way for anyone to see for themselves that the person is genuinely unable to work.  I agree with her - if you are a genuine case, then there is nothing to worry about.

Whilst I understand all the above, I do wish that this information was passed on to the benefit claimant rather than having to find out only when something goes awry.  As carers, we have more than enough to deal with without having to follow up on each and every change to the system to find out how it affects the person we are caring for.  I have found this throughout my daughter's life - the really pertinent information is never made known in a straightforward way, you either have to fall foul of some new ruling or stumble across it.  This was one of the reasons I started this blog - I do know of parents who are ahead of the game and super-knowledgeable about everything their offspring is entitled to, but there must be a great deal like me who have enough trouble juggling work, caring, home and their own problems and just don't have the time or energy to trawl through every single website and booklet or spend hours on the phone speaking to advisors!

Prescription Fees

My daughter is an adult now and as such, her benefits are now the Disibility Living Allowance and Incapacity Benefit - which used to be classified as Income Support.  Prescription fees are free to those claiming Income Support but apparently since changing the name of the benefit given to disabled people, prescriptions are no longer free for those claiming Incapacity Benefit.

We are lucky in that my daughter is strong as a horse and rarely ill.  She has however a susceptability to athlete's foot and a fungal nail problem and has been on a repeat prescription for tablets to treat this.  Boots the Chemist have been handling this with their automatic renewal system, but last week they messed up as whoever dealt with us the previous time had failed to send on the relevant form to the doctor's surgery. This meant I had to contact the doctor and get a new prescription which was sent to their closest pharmacy.  So off I tootled, picked up the prescription and filled in the form the same way I have done for the past several years, ticking the Income Support box.

Imagine my shock to receive a letter yesterday fining my daughter £36 for falsely claiming a free prescription! (Imagine my shock that it took them less than one working day to fire off this letter claiming money when to actually get a benefit takes months....) So I rang them up and spoke to a very helpful young man who informed me that claimants of DLA and Incapacity Benefit no longer get free presecriptions....so if you are a feckless workshy scrounger you can get your meds for nothing, but if you are genuinely needy you can't?

He did inform me that if we apply for a certificate to prove we are a low income household (an HC2?) she can claim free health care for a year..he is sending me the form, but application etc will take 6 weeks!  See what I mean? In the meantime, thankfully, he has put a note to stop any further pursual of the fine and once I give them the number of the form, this will be wiped clean.

In the meantime, I shall be phoning various helplines to find out if this is indeed true - it seems very unfair that those who are genuinely sick or needy are expected to pay for their health care.  I shall keep you informed of the results - if anyone out there knows anything further, please let me know.

Makaton IPad App

If you are lucky enough to own an IPad, there is a brilliant new app available called MyChoicePad which is a Makaton communication system.  It uses Makaton symbols, signs (with videos) and synthesized speech.  It will contain all the published resource vocabulary within the next few months.

This app has been created by a lady called Zoe Peden who has collaborated with the Makaton Charity to make this happen. 

Whilst a lot of us with special needs children struggle financially due to the circumstances and living predominantly with the aid of benefits, if you can afford the IPad and this app, it would seem to be an invaluable tool.  It would not only help the carer/educator to become fluent in Makaton but also prove immensely beneficial to the person with communication difficulties, giving them the opportunity to 'find the words' in order to get their meaning across. This would also contribute to self-esteem and confidence.

I have mentioned this product to the school where I work in the hope it may one day find it's way into our resources - but of course, it all comes down to budget!  In a perfect world, this kind of technology would be readily available to anyone who needed it.

Baby Sign Language

Out of the blue I have been e-mailed a link to a great new website full of information and resources for
Baby Sign Language.  Not all the signs are similar to Makaton, but a good deal are, and it is a good basis for communication with your baby/young child before verbal communication kicks in.  There are free downloads of wall charts and the like too, which are very  useful. Worth checking out.

Too Much Holiday!

I'm sure you and I could never have too much holiday, but I'm afraid the past month or so has been quite tough for my daughter.  What with the three weeks she had off from college and the double-double bank holiday weekends, her routine has been well and truly thrown.

This hasn't caused any major outward difficulties, but I did begin to notice she was becoming more and more introverted and spending far too much time alone in her room.  It was getting increasingly difficult to get her to come out anywhere, even to walk the dog, and she's a grown woman, I can hardly manhandle her!  This isn't helped by the fact that when you are at home and getting on with the day-to-day stuff, time whizzes past and you suddenly realise she has been up there for more than a couple of hours listening to the same CD over and over again.

I also noticed a definite deterioration in her speech - she couldn't even be bothered to answer a question with a 'yes', just gave me a thumbs up.  Again, it's easy for her to let her conversation slide when she is at home as we know her so well and can second guess her meaning.  However, I can't begin to count the times over the years when I have had major meltdowns myself in order to get her to make a proper sentence instead of grunting a monosyllable at me.  So frustrating when you know that if she was with a stranger she would make the effort to talk properly.

This kind of situation hasn't been a problem for quite some time as for the last couple of years her Monday and Friday activities have continued throughout the school holidays so she has had the extra outside stimulation.  So the month of April 2011 was not a good one for her.  I knew she was happy to get back into routine on the first day back at her theatre group when she was up at about 6 a.m. and dressed and ready to go about an hour before she needed to be - as well as doing half the housework on her way!

I don't think this is a situation that will arise very frequently - Royal weddings & Easter don't usually coincide - but it is obviously something I have to watch out for and try to ensure she doesn't slip beneath my radar again!

Moving On

As a special needs learning assistant, a lot of people ask me if I get upset when a child I have worked with for three years solidly on a one-to-one basis leaves and goes on to primary school.

The simple answer is 'no'.  You do become very attached to the child when you are working with them - after all, your duties are not just teaching reading and writing but may include helping them to eat, change clothes, make friendships, all the day to day minutiae that a parent does at home.  However, when the time comes for them to move on, the actual reaction is one of happiness  that the child is ready for the next stage in their life and that you had a large part in making this happen.  Of course there is a tinge of sadness on the actual last day of term when you bid them goodbye, but that soon dissipates and you look forward to hearing about their progress in the future.

It is slightly sad that sometimes you will not hear how they are getting on for months, perhaps years, but when you do learn of their achievements it is with a sense of pride. 

I've also had to experience the flipside of the coin when it has to be admitted that the child is in the wrong place at mainstream school and needs to go to special school as they are just not getting the kind of help they need.  This is perhaps a bit more upsetting in some ways as you have to deal with a slight sense of failure.  It would be nice to have the power to help every child that comes your way in the job, but it isn't always the case which can be tough to deal with on a personal level.  The trick is to take a step back and accept this fact for what it is, be glad that someone with more expertise is taking over and hope that they will be the ones to make the difference. Unfortunately, these are the cases where you may not ever hear about the child's progress in their new school, but it is also your turn to move on.

Harsh

I've read a couple of things on blogs over the past few weeks that have bothered me intensely as being grossly unfair. I won't go into specifics, but basically it's been people who have no idea what they are talking about criticising parents of special needs children.

Years ago when I was studying to become a SENCO (Special Educational Needs Coordinator) one small paragraph in the blurb we were given to read stood out for me as crucially important.  It was this:

'Never judge the parents of a child with special needs'

This was advice to those working with SEN children and I felt it should be put on a plaque somewhere prominent in every school.  As a parent of a child with Down's syndrome, I have experienced many thoughtless comments by members of staff in various schools and have had to mostly put them down to the other person having no idea what I go through on a daily basis and try to ignore them.  Sometimes I have protested - how about when I was told not to send apples in her lunchbox as her method of eating them was embarrassing? (Now seriously, would a teacher say that to the parents of a 'normal' child? Ever?)

The point is, unless you have intimate knowledge of what those parents lives are like when dealing with their child, you have no right to make assumptions and put in your twopenny-worth.  It's hard to remember this - we are all guilty of it with everyone we meet, it's a human trait. But when thinking about someone who cares 24/7, seven days a week, 365 days a year for their child with special needs, it pays to have a grain of empathy.  If you see that mum looking frazzled and angry, dragging a surly child into school ten minutes late with breakfast all down it's front and shirt untucked, do you immediately think what a bad parent she is? Or does it cross your mind that she might have had very little sleep that night, had to deal with one of 'those' mornings where her child is on a 'go slow' (if you have a child with Down's, you'll know what I'm talking about!) and it has been impossible to get them dressed, fed, washed and out of the door in time for school without major meltdowns, as well as perhaps having siblings to get ready too. 

There are other times when perhaps they are being a 'bad parent' but are at the same time going through very hard times emotionally or financially and just aren't coping. Then they don't need your judgement, they need your help.

A phrase I read quoted on a blog, written by a reporter in a newspaper, was that these parents 'wear their child's disability like a thorny crown' meaning that we use it to gain sympathy and to achieve what we want. Nothing could be further from the truth.  The hard fact is, your child's disability becomes a major part of your life and something that cannot and should not be ignored or not talked about just in case it embarrasses someone else.  Other parents complain about their kids keeping bad company or being rude and untidy at home and we are sympathetic; however, if the parents of a special needs child have a much needed moan about how many times they had to clean up excrement that day or about the huge tantrum thrown in the shopping centre because the child is scared of crowds, there is an uncomfortable silence. We are not looking for martyrdom, just someone to say 'Wow, that must have been hard for you, how are you doing?'  Most of the time we cope and can live our lives with a smile on our faces, but it must be remembered that sometimes it is not easy and we are allowed to have bad days.  We don't do it on purpose to make the rest of the population feel uncomfortable, it's just the way it is and we are doing the best we can under the circumstances.  Giving birth to a child with special needs is not a life choice, it is something that just happens - we all deal with it in our own way, the best way we can, and if it doesn't measure up to what you think is the best way, don't make harsh judgements, try offering a little help and understanding instead.