As part of our appeal tribunal for Charlie’s EHCP and placement I opted to go down the National Trial route so that the court could make recommendations over health and social care provisions. I did this, because I did not feel like I was listened to when it came to social care and respite, help for community activities for Charlie. I have included a link for National Trial for info. Links work yay! I have included information from IPSEA which are an independent organisation.

https://www.ipsea.org.uk/FAQs/if-your-appeal-is-part-of-the-national-trial-what-difference-will-it-make-to-the-appeal-process

Because of the lack of recognition I had for services that included respite for me and access into the community for Charlie. I did this for a number of reasons, but mainly, because of his SEN needs he was excluded from all types of community activities such as football, beavers, dance, karate. My older children took part in those sorts of activities and I paid anything from £4 per session to £15 per term which really wasn’t that much. However, when I looked at these sorts of activities for Charlie I was met by extortionate rates! So, I was looking at £10/20 per hour, £100 per hour for the karate. Which is ridiculous. And pretty much excludes him out of everything as I simply can’t afford to pay those prices.

My aim when going to tribunal was to get allotted hours of funding for Charlie written into his EHCP which would guarantee me some time for him to do an activity out in the community with a qualified carer. Firstly, I needed a section 17 referral to social care. Understandably they assessed and closed the case as there were no safeguarding issues, but they did write in the report that Charlie was unable to access community activities and with the flight risk he needed 1:1 support. This is all we needed to take it further and have the recommendation built in, From the report, it went to the integrated disability service for the LA and from there went to panel and was accepted. It was a lot longer and more drawn out than needed if I’m honest.

https://childlawadvice.org.uk/information-pages/child-protection-referral-assessments-and-outcomes/

Anyway, it was accepted and I received a letter from the integrated disability team. There are no hours available and we are on a waiting list. Never mind, we’ve been waiting several years for any respite and community support. They did however, send me a list of local agencies that also accept the funded hours. Which I’ve popped the links below. Hurrah for clickable links!!

https://umbrella.uk.net/

https://www.crowwoodcic.org/

https://www.derbyquad.co.uk/whats-on/get-creative-families-and-young-people/q-club

http://www.stjamescentrederby.co.uk/fun-abili8y

https://www.jubilee.org.uk/smile/

Of course, with the current circumstances over covid 19 there are restrictions and undoubtedly we are on a waiting list again.

We have an EHCP review in January and if there is no progress then I will be moving forward to get either a personal budget or direct payments to pay for this service and employ someone.

There is a link below to personal budgets.

https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/personal-budgets/

Now that these links are clickable I hope to do a lot more in the blogs. Eventually the dream is that I will have enough of a following on Instagram to give me clickable links on there, as I can freely share links on Facebook and there is a Linktree on Facebook too. Unfortunately I’m unable to do the same on Instagram, but checkout our Facebook as sometimes the content is different on there from Instagram.

https://www.facebook.com/Advocatingforcharlie/

Georgina x