Justifying respite hours

[Beetham]

Hi All,
I had 12 hours per week respite (direct payments for 1-1 worker) agreed last year which honestly was a life saver, it was approved for a set period and then SW was going back to panel in September to request it continues, but following a discussion with her manager wants to review it, I feel in desperate need of it being continued.

SW is useless, I know for a fact she hasn't read up on the most basic information on DD due to the things she says/asks and it shows no sign of improving. In preparation for her assessment of us I wanted to gather some thoughts together, one of the issues is that in some ways our days are managable but that is only because we do the same, very limited things everyday and she has all my attention. Does anyone have a list what 'normal' life includes so that I can see what we can and can't do? E.g. pop in the shop for some food, go on a day trip etc.

For context Dd is 4 and has a neurological condition causing severe-profound learning and physical disabilities, and (most challenging for me) aggressive behaviours.

** having re-read my above message I'm concerned I sound like I'm just after the respite when we can actually cope. When I say our days are manageable what I mean is if I use the respite to a- rest myself and b- get everything ready then I can manage. But Dd can't cope with things like anyone coming in the house, me going to the toilet, getting in/out of the car, me doing quick basic cooking etc.

Say what you have posted here. That things are only manageable because of the support, and if that is reduced you will quickly reach crisis/care burnout. Leisure active is and socialising like going to the park/soft play/out for a walk/ a club/swimming would all be considered normal. Think about the additional personal care and supervision DD requires at home. The Assessment Framework shown in Contact’s booklet here is a useful starting point. As is the section on your needs as a carer - for example, your physical and mental health.

If the hours are reduced challenge it. Ask them on what basis they think the situation has improved and where the evidence is.

Depending on DD’s needs you could look at whether she would be eligible for continuing care funding.