I was at a meeting last night. It wasn't a political meeting. It wasn't a meeting full of 'bleeding hearts' or woolly left do-gooders.
It was a meeting of a small group of parents, all of whom have children with complex special needs. And I left it feeling very tired.
The first bombshell was a rumour that the Government is considering means testing Domiciliary Care Allowance, the payment that carers get for children with special needs. It's a universal payment, a concept that seems to be out of fashion right now. But they provide the ultimate safety net and help in a small way to pay for all the extra costs of rearing a child with special needs. So important right now, when all other income is under threat for so many families.
We heard about the effects of staff shortages. Limited nurse cover for children with complex medical needs and even more limited replacements due to the ban on recruitment in the public sector. Is one nurse for every 16 children really an acceptable ratio?
Transport for the children is apparently being outsourced to save money. So during the snow the school buses did not run, but the private ones did - otherwise the drivers did not get paid. Not an issue for me, but a worrying change of priorities perhaps.
A haphazard approach to respite with some families getting lots - especially those that shout the loudest - some getting a little, and some getting none at all.
An extra child in some classes means that there is little one-to-one time for each child. And all the group activities have to run to a tight schedule. So if one child has an accident or a meltdown, the timetable has to be abandoned, and the children may have to sit and wait until the crisis has passed.
Each child used to be taken out of the classroom for individual speech and language sessions, occupational therapy and physiotherapy. Now these therapists are mostly available for consultation only: the actual work is done by the teachers and SNAs .... on top of everything else.
Swimming used to be every week, and the school has its own pool. But the older children only get it once a fortnight now - not enough time and not enough staff.
Despite this the school is still doing a fantastic job. I do not know of anywhere else that would give Smiley so many opportunities to fulfil her potential and enjoy her life. I do worry about the younger children who may miss out on all the intensive help that my daughter enjoyed.
The cutbacks are not desperately serious. Not yet. They just make me feel sad. I know that Smiley still smiles a lot in school, as I get to see the photographs. And she still gets excited when I tell her:
"You're going to school now, on the bus!"
Long may that continue.
And just one more thing .... as I was writing this, something heavy fell through the letter box. It was galling to find that the envelope contained two glossy reports produced by the organisation that now runs Smiley's school. That did make me angry...perhaps they were produced cheaply, but are they really needed at a time of severe cutbacks?
Wow, looks like lots of changes are starting and more could be coming your way in Smiley's school. I hope it doesn't pinch too much away from the children. It's very sad to see things like this happening when these services are so badly needed.
ReplyDeleteWe're in the states, and we lived in a very tiny town in the midwest and when my son was of school age, they had nothing for him (he's got Asperger's). I tried to get help through the school and the state, but I ended up homeschooling him instead. It took 3 years of fighting to get him the minimal amount of help through the state. Some places are much better about this, but not where we were living.
I know with all the cut backs everywhere so many who need these services are suffering from the loss of them.
I hope things work out all right for you all,
Bird
http://takealeftatthemoon.blogspot.com/
I'm not sure if it's the same in Ireland, but here in Wales they have changed the way the employ support staff. When I first started working in special schools 15 years ago, the support staff were qualified, experienced and maintained high standards of care.
ReplyDeleteNow, a 'level' system in in place, going from 1-4, with a few 'Instructors' dotted around. New staff will always be taken on at level 1, poorly paid and no experience required.
I definitely saw a decline in the quality of care the pupils received over the years. It stopped being about getting the most out of every little thing the pupil could learn and achieve, and became a conveyor belt of rushed feeds, nappy changes and being moved from one piece of equipment to another.
Trips out, hydrotherapy sessions, one on one support - all this dried up with less time, less staff and more stupid risk assessments spoiling spontaneity.
Every year another member of staff would be off long term sick with a bad back, more pressure on existing staff as a revolving door of inexperienced agency staff fill the place of a valued and experienced member of staff.
Support staff are THE most important people in a special school, they spend all day taking care of every single need of the children. They should be recognised for this, as should the parents
It saddens me to hear of these cutbacks to such important services. As a very part time support worker for adult students (with mild learning disabilities) I can see how important one to one work is. Its such a priviledge to being able to support students so closely and to see how far they progress with individual attention. If anything we need more support workers, I think. But with all these cutbacks, these roles are being cut back which is such a shame to both children and adults.
ReplyDeleteI hope the cuts don't continue and that Smilie can keep on smiling.
All the best. x
It's tragedy happening in slow motion. Those sinful, shameful bankers and the politicians who support them should be mortified with shame...but horribly, we know they couldn't care less. Thankfully, our kids (so far) remain happy and blissfully unaware XXX
ReplyDeleteThat's awful Blue Sky and so worrying.
ReplyDeleteI HATE when I hear 'means testing' really I do 'cos what they always do is set the income SO low so few can avail of it. Bye bye DCA I'd say:-(
SNA's doing delivering therapies?? Tut tut... what an idea, eh?! ;-)
xx Jazzy
I'll respond to all the comments shortly, but I just want to reply to @Jazzygal - I hope this post does not imply that SNAs should not be delivering therapies, that was not my intention at all! But what has happened is that there is more and more pressure being put on the teacher and SNAs in the classroom to manage the feeding, toileting, therapy and other needs of the kids (and I'm not exactly sure of the lines of demarcation) whereas before a team of nurses looked after the physical needs of the children and therapist looked after most of the therapy needs, so that the teacher and SNAs would concentrate more on education-type activities. Hope this makes sense!
ReplyDeleteIsn't providing therapies WAY outside of an SNAs job description and way beyond the standard training they get? Couldn't they get in trouble for something like that?
ReplyDeleteOh dear, sorry Blue Sky for any confusion I may have caused you and your followers! When I read that bit I just presumed that you meant that the SNAs help with the delivery of therapies because they now have to and not that you thought they shouldn't! I was being sarky in my response against the Dept as they don't want SNAs doing any more than is stated in that 2002 circular.
ReplyDeleteI bring up the issue of SNAs doing more (incl therapies) in my 'Dear Minister for Education' post and point out that when done under the supervision of teacher/therapist it's a very cost effective way of delivering services that otherwise would never be delivered, in these recessionary times. Both depts need to be more flexible in their approach. The fact that some SNAs have being doing just that has been saving the Government a fortune! They just don't see it. SNAs can deliver so much more then that damn 2002 circular:-(
xx Jazzy
@anonymous - I don't think so. The SNAs are doing stuff like leg-stretching exercises shown to them by the physiotherapist for my dd who has cerebral palsy.
ReplyDelete@Jazzygal - Thanks so much for clarifying, I really appreciate it as this is your area of expertise xx
What a scary time. I am glad though that Smiley continues to be smiley as always. X
ReplyDeleteSigh. For us we aren't hearing of cutbacks but we are hearing that no additional services will be provided. They are capping it, if you will. There is not enough funding and they are already getting creative with how they are providing services now. I hope it's only a rumor and Smiley still gets what she needs.
ReplyDeleteThe reason for the cut backs is that the IMF/ECB/EU have insisted that there be huge saving made by Social Welfare Services!
ReplyDeleteBah Hum Bug!
Thanks so much for highlighting these cuts. While it's great that more kids are getting diagnosed earlier, as you point out, services are growing ever scarcer. It's always been a fight but the future looks scary for families with disabled children. Just getting your special needs child statemented, it seems, is a massive battle now. Makes me so mad! Glad someone else vents too :-)
ReplyDelete@Bird - I have huge respect for parents who homeschool, I just cannot imagine how I would manage. Thanks for popping by and commenting and I will definitely visit your interesting blog again :)
ReplyDelete@LUCEWOMAN - that is really sad to hear and I did not expect it from the Welsh Assembly, as I thought they had improved things. Here something similar has happened in the experimental ABA schools. I'm not really familiar with them, but the reports I hear are not good :(
@Deb - I agree. One-to-one is vital, as many children, especially those with serve learning disabilities like my daughter, need a lot of encouragement to stay on task x
@Jean - our kids are an example to everyone really xxx
@Little Mamma - she's great x
@Lizbeth - I hope you avoid them!
@Irishminx - Bah Hum Bug is right!
@Jane Gregory - Thanks so much for commenting again. It's not just about venting, it's about raising awareness as cuts like these are stealth cuts, the shaving of services. Not significant enough for many people to complain or protest, but enough that many children are not getting what they need. I like to use my blog to highlight stuff like this ...
Here in the UK they are looking at changing the benefit given to disabled people (including children) which will have a knock on effect on their carers. I find it very sad & don't know how those who fraudulently claim it live with themselves. I think those on the autistic spectrum are going to be hit hard :(
ReplyDelete@PinkOddy - I've been following some of the details of the changes in the UK, thanks to @Bendygirl on Twitter who is just amazing and is highlighting the injustice of what is happening. But you're right, it's those who defrauded the system who are now causing hardship to those who can least take it :( Thanks for commenting x
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