To ask what respite you get?

[StreetSpirit3]

DS (6) severely autistic, very high level of needs, pre verbal with GDD (mannerisms/behaviours of a much much younger child.)

DH and I receive no respite/no support and we feel like we’ve been massively let down/abandoned. We have had a carers assessment and DS has a social worker. We just seem to attend endless meetings and yet still receive no help.

We were allocated 4 hours (per week) direct payments over a year ago and it seems virtually impossible to find a suitable PA, we’ve interviewed so many and they all let us down.

DS is now on the waiting list for overnight respite but the waiting list is very long.

His teacher even admitted that out of the whole class DS had the highest level of needs and yet we were the only family that received no outside help. She couldn’t believe it 😞

Just curious as to what respite, if any(!) you get? Thank you 😊

DS1 gets 14 hours per week term time, which is actually 7hrs as he has been deemed to need 2:1. During holidays he gets 20hrs/week (actually 10 hours 2:1). 10 overnights per year - we are currently mid EHCP appeal and as part of that are pursuing an additional 2 nights a year.

DS3 gets 6 hrs per week term time and 8 hours/week in the holidays.

Push back on the social worker to help find a provider. There is a crisis in care but there is more they can do than shrug their shoulders and say they can’t help. If you aren’t satisfied with the outcome of the assessments you can complain and then asked for an independent review.

That sounds really tough OP. We get 3hrs respite per week for each of our two children, but they would be described as much "lower" need than you describe your DS. You and your DH must be physically and mentally exhausted, I'm so sorry.

I should add that currently we have not found a way to use our respite hours, because the council requires us to become an employer ourselves and not pay more than the hourly living wage. But we cannot find anyone (suitable ) who wants 3 hrs pw living wage minus tax etc. We have found someone suitable who will do it cash in hand for a higher hourly rate, so we pay them using DLA. I'm trying to shift the situation so we actually use the respite hours rather than DLA, but this is the smallest of the issues we're currently juggling so it's on the back burner.

Clock go back to your social worker. They can do more to find a suitable candidate. They can also fund a higher rate. To give you an example, DS1’s PAs we’re at the time foster carers (they aren’t now but kept a couple of clients on) as your average PA wasn’t suitable.

Thanks Thomas. The hours are through short breaks rather than a SW and we've been told the criteria for using SB can't be more flexible than those set out. We could use them
Via a care agency that is a council supplier, but we tried that and the agency kept offering different workers despite us explaining we needed one reliable person. It's just not worth their trouble for 3 hours work I guess.

Clock in which case you can request formal assessments - a carer’s assessment for you and an assessment via the disabled children’s team for DC.

Have you tried advertising for 6 hours? Using the hours at separate times is better than nothing.

That's a good point Thomas thank you! Yes 6 hrs would be more attractive

Clock also, have you tried advertising at universities and colleges? DD’s needs are likely to be too complex for college students, but it may work for DS. DS1’s needs are too complex, but for DS3 we have had success with student HCPs and a PGCE student who wanted to work in a SS.