Oneofthesencommunity
Member
I'm new here, seen this thread being shared on Ig stories by other tubie sen parents. She said her friend is training and becoming ofsted registered. The government will help with child care costs only if the person is ofsted registered. He has a ehc plan, care can also be provided through that additionally, she brielfy mentioned continuing care said the support may be able to continue through that but she did not elaborate. There's 2 things on a ehc plan you can do on top of claiming childcare costs normally, apply for direct payments and a personal budget which can be used for different things, including care/support/personal assistants/additional private therapy.
My daughter is tube fed with complex needs, Ehc plans (education and healthcare plans) are for health too, you should have a social care assessment as part of it who assess what support you need and this gets added to a section in the ehc plan. Before she started school I got 30 hours free childcare paid for from age 3 to 4, I used a ofsted reg/approved Sen carer. She now gets additional funding paid to me through her ehc plan and I use that to hire a PA/carer for around the school hours.
Kaytee has the money raised to pay for care but there would be no need for her friend to be ofsted reg if she was going to use friends or family to do care privately. She might not have enough of that money left to pay for private care. Shes wearing Valentino trainers flannels sell for £710, the down payment on the merc, the hot tub (that immuno at GOSH told us never to put our daughter in, she's 6, tube fed & high risk of infection from the different bacteria found in hot tubs & cant regulate her body temp being underweight), holidays, engagement party, 5* hotel stays plus whatever else she has blown cash on as we only see what influencers want us to see. Her son will still receive the benefits he is entitled to even if she is working and I think J**** is still paying his way. She said she is earning less money now she works so that doesn't make sense if she is paying 700 smackers for trainers when most of us carers shop in primark.
She was getting 60 hours a week of carers and 15 hours of nursery. She will share the camera monitor stats to make people think he is awake constantly. We have the same monitor, her stats are fantastic compared to ours. Dont look at the bit where it flags up each movement detected, its sensitive and will flag up slight movements when my daughter is asleep, for instance her arms/legs moving, duvet/blanket movements. At the top it will say how many hours of actual sleep there has been. Kaytee cuts this bit off but occasionally you see a glimpse of it, the last time she shared a few days of stats, there was a couple of days where she didnt cut the top off in time and it showed he was having between 10 and 11 hours of physical sleep a night. On ours, if we get 5 hours of physically being asleep we see that as a miracle.
Alot of his needs are just delayed. He has been able to move around shuffling, hes starting to take steps, he can hold his weight for short periods, starting to talk, hes very aware and can communicate in his own way. She has showed him using her phone to make calls & he knows certain things like car and home. It upsets alot of us SEN parents when she says he cant communicate and has no mobility, some of us would move mountains for our children to be at his level. His progress is really showing over the past year, I would be celebrating if it was my daughter. Continuing Care are right to cut carers hours, it should have been cut months ago. Carers hours are not there so the parent can go out on the piss, there is a certain amount of funding and carers, if they give to one just because their mum is a influencer and can cause a media storm, it stops another child/family who actually needs it from having it.
The feeding school programme she used I have looked into, it is £108 for the assessment and
£4,223 for the programme. It's a standard fee per child, not a individual quote. I followed advice from GOSH who strictly advised against.
My daughter is tube fed with complex needs, Ehc plans (education and healthcare plans) are for health too, you should have a social care assessment as part of it who assess what support you need and this gets added to a section in the ehc plan. Before she started school I got 30 hours free childcare paid for from age 3 to 4, I used a ofsted reg/approved Sen carer. She now gets additional funding paid to me through her ehc plan and I use that to hire a PA/carer for around the school hours.
Kaytee has the money raised to pay for care but there would be no need for her friend to be ofsted reg if she was going to use friends or family to do care privately. She might not have enough of that money left to pay for private care. Shes wearing Valentino trainers flannels sell for £710, the down payment on the merc, the hot tub (that immuno at GOSH told us never to put our daughter in, she's 6, tube fed & high risk of infection from the different bacteria found in hot tubs & cant regulate her body temp being underweight), holidays, engagement party, 5* hotel stays plus whatever else she has blown cash on as we only see what influencers want us to see. Her son will still receive the benefits he is entitled to even if she is working and I think J**** is still paying his way. She said she is earning less money now she works so that doesn't make sense if she is paying 700 smackers for trainers when most of us carers shop in primark.
She was getting 60 hours a week of carers and 15 hours of nursery. She will share the camera monitor stats to make people think he is awake constantly. We have the same monitor, her stats are fantastic compared to ours. Dont look at the bit where it flags up each movement detected, its sensitive and will flag up slight movements when my daughter is asleep, for instance her arms/legs moving, duvet/blanket movements. At the top it will say how many hours of actual sleep there has been. Kaytee cuts this bit off but occasionally you see a glimpse of it, the last time she shared a few days of stats, there was a couple of days where she didnt cut the top off in time and it showed he was having between 10 and 11 hours of physical sleep a night. On ours, if we get 5 hours of physically being asleep we see that as a miracle.
Alot of his needs are just delayed. He has been able to move around shuffling, hes starting to take steps, he can hold his weight for short periods, starting to talk, hes very aware and can communicate in his own way. She has showed him using her phone to make calls & he knows certain things like car and home. It upsets alot of us SEN parents when she says he cant communicate and has no mobility, some of us would move mountains for our children to be at his level. His progress is really showing over the past year, I would be celebrating if it was my daughter. Continuing Care are right to cut carers hours, it should have been cut months ago. Carers hours are not there so the parent can go out on the piss, there is a certain amount of funding and carers, if they give to one just because their mum is a influencer and can cause a media storm, it stops another child/family who actually needs it from having it.
The feeding school programme she used I have looked into, it is £108 for the assessment and
£4,223 for the programme. It's a standard fee per child, not a individual quote. I followed advice from GOSH who strictly advised against.
)
but it can’t be because of the amount of followers
I’ve said before I have 2 children both with needs, one going blind and has major sensory issues another one who has massive delays and peg fed. With the little one we were told they’d never walk talk etc but with hard input from us as they’re parent they are now walking and trying so very hard to talk. I want to shout that from the rooftops I’m so incredibly proud how far they’ve come considering the initial diagnosis. We have no help whatsoever, my husband and I are frontline nhs, either he’s in work or I am. Our little one is peg fed every few hours as they can’t tolerate huge volumes but whatever goes in inevitably they vomit, doesn’t know how to swallow so is a massive risk of aspiration. I get up all through the night to feed, sit up for a good hour after as I’m afraid to put them back to bed in case they’re sick. We are fighting for a cot at the moment so I don’t have to physically get them up, I can just incline the cot to lessen the risk of aspiration but we’re deemed to not need that. She is not the face of a SEN parent, she doesn’t represent what I’m trying to fight for, for my children 
how the heck did she manage to raise over 100k, are there more fundraisers, do you know if people are still donating