Transitioning from children’s to adult’s services: A parent’s perspective (part 3)

This week we are sharing a series of blog posts written by author and mother, Viki Ainsworth, who shares her experience of her daughter Tilly’s transition from children’s services to adult’s services. This is part 3, you can read part 2 here.

Stay tuned on our community Facebook page and Twitter account for each daily blog over the next week. You can also listen to a podcast on this topic recorded with Viki here>

Part 3

Her first EHCP annual review at college came and went without incident and with no mention of post-college.

Somewhere in the middle of our journey the team at County underwent a re-organisation, from teams covering 0-18 and then 18-25 we were informed that one team would now cover 0-25. I was hoping this might bring some continuity to the services but sadly that wasn’t to be, although some of our transition happened before this reorganization. I can only hope it’s a little more seamless now.

One of the great frustrations in trying to establish provision for our special needs kids is dealing with the team from County and trying to find the right person who can actually make things happen. The whole process lacks clarity and transparency. I’m not sure we ever saw the same person twice when having reviews and assessments at home and calling the department meant talking to the person on duty who didn’t know anything about Tilly. I did find a very helpful lady in the finance department who helped me sort out Direct Payments for respite care for Tilly, but of course she moved on.

Whilst trying to sort Tilly’s life out we also had to sort the finance side of things. Direct payments funds we had been receiving for respite and life outside college suddenly stopped one month when Tilly turned 18. When I rang to enquire I was told that Children’s Services were no longer liable for the costs of her respite as she was now an adult so they had been stopped. No warning, no automatic handover to the next appropriate finance department (who happened to be in the same office). Perhaps I should have anticipated this, but I understood that Tilly was under the same team with the new 0–25 provision, but apparently not with regard to finance.

It’s very disjointed. Endless phone calls later the adult services department agreed to pick up the agreed Direct Payment package but Tilly had to have a financial assessment as, now she was an adult, she was liable to contribute to the cost of her care. I’d love to know what they think changed overnight when Tilly turned 18. She still couldn’t talk, still needed 24/7 care but apparently now she was an adult was able to make some kind of financial contribution. A very officious and unfriendly woman from the county finance department came to our house, asked about Tilly’s benefits, sat at her computer, entered some figures and then proclaimed that Tilly should be paying £111 per week to the cost of her care. It seems naïve of me now but I couldn’t quite work out what she meant as nothing had changed in Tilly’s circumstances and this assessor didn’t explain the context of the assessment or what it would mean. We found out soon enough when half of Tilly’s respite payments disappeared from her account.

Tune into the blog tomorrow to hear how Vikki and Tilly worked with Tilly’s college, the Social Care team, and Youth Connexions to try and plan Tilly’s provision post-college.

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