Ds Carer...Am I being ungrateful?

[Shellywelly1973]

Ds 8 has ASD & ADHD.

He attends a special school. Was excluded from mainstream at the age of 5 & has been described as 'uneducatable' by 2 Educational Psychologists... Hes very obsessive & is very difficult to manage in any environment other then home.

Ds has a Carer who Social Services employ & pay for. I appreciate how lucky we are as ds gets 6 hours per week respite. I couldn't believe he got 6 hours but he can't cope in any social situation ie clubs/ cubs/ swimming classes/ childcare or playscheme.

The problem is the carer is so unreliable. My mil died in September. She was ill & dying all through the summer holidays. His carer rarely had him for the 6 hours any week of the summer. She insists on having ds one evening a week but then ds wont sleep even though he's exhausted as she very often won't bring him back until 730/8pm. Ds hates going out in the week.

This week ds has been ill. So carer said ds had 3 hours left for today as she couldn't have him mid week. She then said she could do an extra hour so I arranged for a friend to come here to meet ds & the carer so I could take my other dc out this morning.

But when she picked ds up she started her usual routine of saying- I work around you - I will have ds for longer...but its too late. I've made plans with my friend. I've organised the other dc but of course if I'd known she could have ds for longer I could have allowed for that.

Ds is off school for nearly 4 weeks at Christmas. The carer told me last week she got 2 weeks annual leave. The 2 weeks my other dc are off school. We can't get cover as she is off course entitled to annual leave.

This morning she turnd up 20 mins late. Starts waffling on saying I will do whatever hours you want. But I've already had to make plans- she doesn't seem to comprehend that changing plans is very stressful.

That's not on, she is being paid a wage to do this work so please don't feel she is doing you a favour. You get those respite hours because you are entitled to them. Do you have access to her line manager?

Sorry posted too soon!

I feel like im being really ungrateful but the carer makes me stressed. She says she has to pick him up at 9am so I feel like I rush everyday of the week.

Yet if I complain im worried I will lose his care. I've looked into personal budgets but it appears v.complicated...

Should I just shut up & put up?

Wwyd?

Her manager said she's entitled to annual leave & ss dont have to cover her.

He said we need to make plans between us. He said if im not happy to apply for a personal budget & stop using ss care. But for the reasons above im reluctant to applt for a personal budget.

Make a complaint, as Big says she's being paid to do a job. She's taking the piss big time.

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Can you contact the CAB who may be able to help you with the personal budget. If they can it sounds as if you may be better off that way.

Get a personal budget. It really isn't complicated.

Is she more helpful than helpful? i.e how much would you miss her?

Of course she's entitled to annual leave but she's not entitled to be unreliable when she's supposed to be working.

If you've been awarded 6 hrs pw I'm surprised ss don't provide cover tbh - if they don't then you're not getting what you were awarded?

Does her manager also say she is allowed to piss you about like this? I think the holiday thing is unfortunate but of course she should get leave. But it's the general unreliability (?) that I think is VVU.

More helpful than unhelpful .....

I am at boss' response - basically like it or lump it! He's there to provide a much needed service. Who's his boss? Maybe you could mention that you might take this to your mp.......?

Can you look into charities that provide respite? We had a great organisation years ago that helped with our ds who was very very difficult to manage and needed 2:1.

Do you have a social worker? If so they should be helping you with this and with getting what you're entitled to.

Where are abouts in the country are you? Apply for personal budgets and then get a care service to provide the hours so you have more control. You then don't have to the line management but can sack them if you are not happy. It sounds like your son has to fit round her. It sounds like you need the respite to occur at home where you can take yourself off a personal budget will allow this. I work fir a lovely organisation who will provide this for you but we are based in Yorkshire?

Talk to your SW or the one who set this up
If you no longer have one. This set up is not working & they are responsible for providing respite.

YANBU and neither are you being grateful. Personal budgets really aren't that hard to work out and it sounds like your son would really benefit from having one. What's happening isn't working right now.

"Yet if I complain im worried I will lose his care"

Totally agree with the previous comments that you need to complain.

You have been deemed as needing six hours respite, this is now set.

So then someone was found to provide this and the company are paid to do this, thanks to you (and others using this system), the Manager is also on the wage he is, not just the Carer.

The Care provided should suit you, it isn't, so demand the Manager address the problems that you are having with the Carer.

She will put it down to a lack of communication, so demand that she communicates with you properly.

IME, some Carers (not all) are trying to fit as many hours in as they can, as increasingly many organisations only pay for the time sent with the Service User, not the Gaps inbetween. Many are trying to fit around their own life, which on recruitment the agencies tell them they can, which is wrong.

If you applied for a personal Budget, you would be given the equivalent in payment to employ someone for those hours.

You won't lose this time.

This is why the Care for the Elderly is so poor, they and their families are to scared to complain.

Just to add that this is why companies lose contracts, they just don't deliver what they are paid for.

Unfortunately that is never asked when Managers jump ship just befor they sink and you have the same crap, couldn't care less, mangers once again managing contracts.

Personal Budgets can work better, there is a specific team that will guide you through it, as well as charities.

Shelly If you want me to talk you through personal budgets (as well as point you in the direction of some info) then I would be more than happy to do so. :) I worked for a year in a job where I supported disabled people to create support plans and most people went for personal budgets. Initially, most of them understood very little but part of my role was helping them think through the best options so they could receive the best care. Your LA will probably a direct payments team too or at least, some specialist advisors.

Please do complain though. Like Birds said, so many complaints are never submitted because people are worried about being perceived as ungrateful. The LA has a legal duty to ensure your son receives the correct care, so keep that in mind and please don't ever feel like you're not allowed to have your say and complain.

Is this similar to a direct payments thing? I have an autistic son and I get 10 hours per week. I get more than anyone I know but the squeaky wheel gets the oil as they say.

Anyway, the council give me the money and supply a payroll service to work out the hours/ni etc and they tell me what to pay out. It's not as complicated as you might think. I don't know if that's what would happen in your area but that's whats done here in Hull.

The benefit of this is that I can hire and fire who I choose. The carers who work for me all work for the special school he goes to. You'll find this your best source for workers. The TA's etc all do this on the side. I have one regular carer and a couple of others for odd days.

YOu won't lose your hours, but you need someone reliable, especially for an autistic child.

Do you have a disability social worker? That's who sorted everything out for me.