To wonder who david cameron thinks is deserving when people with hospitalised disabled children are not ?

[bumpsoon]

Now i know many of us were fed up about the whole CB being withdrawn from those over the threshold etc , i was ,but if that meant the Rivens of this world got a bit extra then i wouldnt mind , on the news this morning it said that those getting disability living allowance (might of got that being wrong) will not be getting it if their child is in hospital , because the nhs will be providing for the childs needs .WRONG ,WRONG,WRONG . the nhs will not provide toiletries, laundry facilities ,decent incontinence gear or (unless the child is in ITU) one to one care

Just an aside Riven but can you not get dds statement ammended so that there is more physio in it? My dd has weekly physio and ot with exercises to be carried out daily by support staff.

I have to say budgets have been cut in the last couple of months, it is already more difficult to get equipment we will be utterly screwed in a few years.

Is there anyway of getting physio through health as well as LEA? One hour is rubbish. You met dd (there is a photo on my profile), I think they're fairly similar physically. Can the TA work physio into classroom stuff without it getting in the way too much?

The OTs here have 800 children each on their case load it's ridiculous, they used to have 400 but two left and they're not filling the positions.

We had post op physio through health, it's a shame that's not available everywhere.

hit nail on head there.posts frozen,outrageous case loads,not enough emphasis on preventative treatment.dreadful

It seems to happen in all areas, a family locally were refused respite for their dd, she was profoundly disabled, cpap over night, lots of seizures and they were refused any respite for years, health said, ss should pay and vice versa. Her family reached breaking point and she's now in full time residential care, at massive cost to local authority and they've left a broken family. It should never have got that far :(

You know, riven, people are allowed to disagree with you. Not having a child with cerebral palsy doesn't disqualify me from having an opinion, just as having met DC and having a child with CP doesn't mean that your opinion is automatically better than anyone else's.

As for the 'not answered that have you' comment that I assume was a question: yes, I think I did cover that if you bother to read my answer.

are we stooping to personal attacks now

feel for you Riv

Its its such a lottery. In my school physios are in 4 days a week (2 physios each have dif children) and OT's are in 2 days a week and for clinics, Every child with a physio programme has it daily after morning circle time/ hello. I work in early yera so nusery to yr 2 whuch is 2 classes and are mixed for lessons depending on ability and one group who have visual impairment (severe) and have a sensory education programme. We have SALT now 4 days a week. The HT in the school has secured this by us working hard and proving we are commited to providing a holistic education for our pupils. He had had to fight tooth and nail to keep the funding and even invited the local MP to spend a week in our school. He could hardly refuse with any good grounds so did and fought our case too.

The Peads hold their clinics at the school and we have sight and hearing clinics as well.

I hate to say it because I am one but I feel sometimes that they need to be more selective over employing staff. To work with children/adults who have disabilities you have to be 110% committed.

Riven I'm so sorry your feeling this way and that you and your family are having such a hard fight for equipment to meet DD's basic needs. I'm sorry if I'm misinterpreting the situation but it seems that in your fight for inclusion for your DD the LA have stopped providing the other care she needs. I really find it hard to grasp why people in power struggle to understand that a child with CP, epilepsy can be cognitivly competent and be mainstream ability but at the same time have medical, personal and phyical care needs which need to be met simultanously.

sorry should have said the LSA's provide the daily physio under instuction from the physios.

We've been lucky with input for ds3; but if he ever fails to progress for 6 weeks he loses all SLT for ever.

OTOH ds1 has already lost his eating disorder input this week becuase of his blanket lying that he's OK and complete failure to bother with anything suggested.

It's rarely delivered in school either; the snus we mainly have are frankly wonderful if your child has academic potential (and ds3 does, in maths and it) as they manage that well but the PAM input is only into the school for the rest, iyswim.

I'm lucky that I have never ahd to deal with long term hospitalised children but I have two close family members that have, one SCBU and one heart issues (the ehart child died). SCBU child came out of it OK but Mum had severe PND for what stretched into eyars- only recenlty came out of what i think was PTSD and child is now 7. With the other family, during the hospitalisation period when they thought child would live, the marriage broke up horrendously, and Mum had such a nervous breakdown that she put the kids in care and vanished. Poor, poor woman.

"We've been lucky with input for ds3; but if he ever fails to progress for 6 weeks he loses all SLT for ever."

See thats what I find difficult to digest. I work with children who have real complex needs and sometimes they'll have a severe seizure and their skills will regress significantly, or be ill and the same will occur. The child IMO and IME needs extra input to ensure the skills are relearnt and hopefully retained - not written off. I do however agree that when progress is limited or absent due to parents not supporting the services or their child by continuing a programme then revoking funding might be inevitable, and better used elsewhere. This IMO should only be after extensive consultation as a parent may be struggling and therefore that is why they are unable to continue programmes.

I accept I see things from the perspective of an educational practitioner but I am often ed at some of the comments and practices I hear about which were in place would make such a positive difference to the lives of these children and their families.

i must be lucky as dd gets all her therapy supplied at school, she has weekly phiso/SALT/swimming and lots of groups and activities that allow more input.

My daughter spent 5 months in hospital following a Bone Marrow Transplant and we had to use every penny of our savings. We had to pay for childcare for my other daughter, tv dinners, travel, etc, etc. Lucky we had some savings, I don't know what other families do. She has had 12 operations in the last seven years and costs adds up.

Up to now we have managed but I am really worried about the future.

I know Mumbar; we do our best though with the amterial sent home but it's often undoable- for example last weekw e weres ent (another) board game; printed on A4 paper- with absolutely zero instruction to accompany it.

??????

Ds3 is prone to regressions with his ASD so we just have to hope.

toc

2shoes - we provide the therapy at our school, physio is the prioity to help pupils be in a good posture to allow them to then be educated. We have a hydro pool and MSR.

I may have had the ignorant attitude that this was the norm but it seems there are areas where this is not the case. I do think as well with inclusion that has been such a positive move that children in mainstream are missing out on their other aspects of care such as hydro and physio.

toc sorry to hear about your DD's illness - best wishes to the family and sorry that it was made even harder by the financial pressure.

but surely if your child needs weekly phiso and hydro, you have to look fro a school that supplies this.
mainstream can't imo as it is just not practical.
dd's school has purpose built rooms, they have over head hoist tracks, so she can walk using the track, they have lots of space for walking and trike riding, I have never come across a main steam school that has this space as obviously the priority is learning.

I agree with you there 2shoes about finding a school that provides it. I think tho (and I maybe wrong) that it is generally special needs schools that have all these facilities as its expected a child with these needs will attend there and often the statement will name the school as the best place for the child to attend. However there are parents that wish for their children to attend mainstream and its usually those children who miss out as the facilities aren't readily available. It seems inclusion has been a positive move but with some negative fallbacks - as you rightly point out they can't facilitate and learning is the prioiry (imo quite rightly so) in mainstream.

We have a residential school near me that caters for children who aren't educationally behind their peers but have phsical/ medical needs. It is private but places can be secured through LEA funding.

It's a minefield - one I don't claim to understand.