Back in October, with the new finalised version of the EHCP we were awarded 50 hours of respite…. a year!! Shocking I know, such a small amount for the level of needs Charlie has. Anyway, I had asked continuously since 2018 for respite and a social care assessment, it was extremely difficult to get one. Despite everyone that knew our family, knew I was a single mother, and dad was not active at the time, didn’t support any of the journey - he had been supportive, he had turned up for meetings, he had listened to advice and tried to work around schedules and he had engaged in some way with professionals. However, by 2018 he had stopped.

I have no parents, so the children don’t get that grandparent engagement, and my only sibling lives 70 miles away and we only see her in the school holidays. So the LA were fully aware of the difficulties I had with managing Charlie, not to mention I was responsible for 2 other children also. I would say that it qualified us for respite but it was always a no, I tried to self refer, no one got back to me. Being a parent carer to an under 18 year old is actually harder to get respite than if you were a parent carer of an adult child.

So I made sure when I took the EHCP to appeal in April that I went to National Trial, which was a pilot project that looked into the health and social care needs of the child. An EHCP stands for Education, Health Care Plan but funnily enough only the education part of the plan is enforceable by law. By going to appeal on the national trial meant that I could have the assessment as a carer under the EHCP. We were awarded 50 hours, however, that has not transpired, we are now 2 months in and I have not yet received a single hour.

Short breaks had contacted me to advise that there was an extremely long waiting list for referral and it might of been better for us to receive the funded hours from a different provider. I contacted a local ASD charity that has previously worked with us as a family and unfortunately they too are not taking on any referrals because of higher than normal waiting lists and I imagine a reduced capacity to see clients because of covid.

So the LA have given this wonderful funding albeit it’s a pitiful amount and has then not given the services the resources and funds to effectively carry it out - hence, thou shalt not have. Their suggestion is to get a personal assistant and then receive money through direct payments to fund this, “maybe I can use a family member” I honestly don’t know if they ever read notes! That would be impossible given the fact we don’t have a family member we could use, hence the fact I need respite! There is a few issues with this, obviously the main one would be introducing Charlie to someone new, he is autistic and has separation anxiety, he doesn’t do new people well. Who wants to work for 50 hours a year? And then there is the admin side of things, I would be responsible for that person’s tax, NI contributions and providing the LA with receipts and proof of this respite, that sounds like more than 50 hours of life admin to me.

However, when having a catch up with my family liaison officer today she has suggested that if I don’t have anyone in mind, then there is a TA that already supports children from the school in the holidays. This sounds perfect! This way Charlie will know, and have been introduced through the school to the TA, and the TA will be available and be thoroughly trained! To the standard that I need for them to be in order to take care of Charlie effectively. Great news, however, I’m still a bit miffed that it will be me doing all the work so this will need to be rectified.

Another bonus, is that after a few meetings Charlie is top of their priority list to get back into education so there is an new plan. This plan is to move him classrooms, less children and more 1:1 opportunities. So we will definitely give that a go. Charlie isn’t keen on changing classrooms but as I’ve said, he’s not attending! So it is unfair to keep his place in a classroom where he is not going and then another child can make use of that school place, and more children need inclusive education.

I will keep you posted.

Georgina x