AIBU about ds Carer??? Need a moan even if i am!

[Shellywelly1973]

Ds7 has a dx of ASD &ADHD. He attends a special school. (Trying to explain his level of need). He has1to 1 support to manage in school. There are 5 children in his class.

I recieve 6 hours a week restpite from social services. The problem is the Carer. She's great with ds but very unreliable in respect of time keeping. She regulary changes the days, keeps ds out longer then we arranged or has even brought him home early without calling me first.

If i complain about her, there isn't a replacement. Ds has to go back on the waiting list for a new Carer. The quality of the other carers leave a lot to be desired! I've met many at the clubs/local events organised by NAS & other charities.

She's my only form of practical support. I have 2 other dc. She's changed the plans for today...again. Ds was still awake at 1 am&has been up since 6am. His behaviour always deteriorates in the holidays so is very challenging,eating&sleeping become very difficult.

Im feeling a bit desperate now. Its the fact i got through yesterday by thinking of the break i would get today now Im expecting her at11am but don't know how long she will have ds for,she's not replying to my texts or answering phone.

AIBU for feeling demented&feeling totally frustrated by ds Carer? or should i just be thankful i get any help at all &shut up& put up!?

[HollyBerryBush]

If she is employed to do a job, why is she able to vay hours at whim?

If the object is to give you respite, then varying hours may well screw up your plans for that time.

Would it make dreadful waves to complain to the care provider?

[Shellywelly1973]

After reading my own post, Im going to have to! its the prospect of losing the patchy support i have,that scares me!

The other two dc are disappointed now as we were going out for the day, I can't manage Ds7 on public transport with the other 2 dc.

[choccychomp]

Shelly, that sounds a bit odd. Is she paid or is she a volunteer? Not the same thing, but I work as a carer with elderly housebound people and I work set hours because if I didn't they or their relatives would complain and I would get sacked! I have one client who I vary my hours with slightly but I agreed it with her family first and would never let it disadvantage her in any way. Generally it means if we're e.g. having a good conversation I'll stay till it's over & go early another day when she's tired, rather than 'clock watching'. Do you have to get your carer through Social Services? I work for an agency and have met some brilliant and yes, some rubbish, carers but it means clients can have a choice, or some people put ads for a personal carer in the local paperl

[Shellywelly1973]

She's allowed to change her hours as we make arrangements between us, though i don't employ her. She dosn't ask me,just tells me or dosn't turn up...

[Shellywelly1973]

Choccy, she's employed by social services.

[amistillsexy]

She needs managing, just like any other employee.
The difficulty is, that her manager is not the person who de dies when she will work, you are. You therefore need to find a way of asserting yourself without causing her to get the hump!
It is not alright for her to change plans at the lastinute, and you need to make it clear how disruptive this is for you and your ds. He needs to be able to trust the adults around him, and when plans are changed arbitrarily, he will lose that trust and go into am anxious state. This makes your time with him harder.
You need to wrote the above in an email to your PA's manager, and politely request that plans are made in advance and stuck to as my h as possible (ie. Barring illness, etc).
At the start of each month, sit down with the PA and your diaries and plan when she will come, what she will do, and when she will finish. Then email this to her manager. Each day she works, record her start and finish times and any excuses she makes for not turning up.
At the end of the month, email this record to her manager and comment on how you've found it...acceptable or not!
This way, everyone is clear on their responsibilities, and everyone is kept in the loop. If problems persist, the manager will be able to re train the PA and hopefully improve the matter without you losing out!
Good luck.

[phantomnamechanger]

"allowed to change her hours as we make arrangements between us" = fine

"dosn't ask me,just tells me or dosn't turn up" = pisstaking, i would NOT be happy!

[HollyBerryBush]

Well I can see the validity of arrnging things between you eg - you know she works from (say) 8-6, and you need2 hours to go to the hair dressers at 2-4, so you would vary your time.

might it be worth making set times each week and having no varience. She is there to support you, not you facilitate her needs.

I really would put a complaint in writing to her line manager, in this case SS.

[Madmum24]

Whilst I can understand your frustrations OP, you are extreeeeeeeemely lucky to get a whopping 6 hours funded respite per week! I used to get 3 hours pw, (I have 3 children with SEN) but the carer left and they don't have anyone else with sufficient training to deal with mine as a replacement. So many families in my area with children with profound disabilities have had their respite (and i mean one night a month) cut due to lack of funding. It's quite frankly disgusting.

I would have a frank word with the carer herself; she is paid to do a job for the required hours and it is not fair that she keeps chopping and changing.

[fuckadoodlepoopoo]

So what happens if she comes back early and you're not in?

Or if she is late or doesn't turn up and you have an appointment?

[Fairyegg]

Yanbu. My dh does respite for ss, to be honest hes not the best time keeper either. I think you have to really spell it out how much you (and ds and the rest of your family) rely on her to keep to the agreed hours, perhaps agree a 48 hour notice period if she / you want to change. The thing that could be causing a problem for her though is other families she works for swapping and changing their times / days. Dh works or about 8 different families so if one family keep changing it results in everybody else having to be moved around as well, which is annoying for dh as well as the other families.

[Fairyegg]

And please don't go over her and report her to ss. Discuss it all with her first and at least give her a chance. She's likely to have lots of other families wanting her services and can pick and chose who she wants to work for to a degree.

[amistillsexy]

But if she is asked by another family to change, she needs to say 'no, I can't. I have another family booked in then.'
If a hairdresser is asked to change an appointment, she will not expect other customers to swap round to accommodate. This is exactly the same.
Given that the role may involve staying an extra few minutes,a PA who works for more than one client should make sure they have sufficient time to transfer between families.

[RabbitsMakeGOLDBaubles]

I don't know if it would be available to you, but I get direct payments for my own disability and was able to advertise, interview and employ my own people to do my care. You may be able to make use of something like that to employ someone more reliable?

[Iamsparklyknickers]

She's not doing care out of the goodness of her heart is she, (crap pay aside - been there and done that) it's a job and it's meant to be a benefit not an added stress. I'm of the opinion that some carers out there start to believe their own hype and forget that they're providing a service and should have standards. It's a lovely job to do, it does not entitle you to expect people to be grateful for whatever you throw their way...

I would try pinning her down to set hours/days on the basis it makes the most of your and her time. If that doesn't work out can you look into having control of the funding for those hours and hiring someone yourself? Depending on where you live you might have a few agencies who can help provide you with someone.

[Shellywelly1973]

Thankyou for the replies.

Im looking into direct payments as i think as ds gets older it would work better.

I appreciate the restpite i recieve so much that i do feel bad moaning.

The Carer has 1 other child as she works as a teaching assistant mon-fri.

I think the suggestions of setting out the times clearly at the start of the month is a good idea. As she generally has ds on a Saturday,i try to make sure during the holidays, that she gets Saturday off by agreeing to moving the days.

The poster that pointed out about trust and reliability...exactly what is happening& for that reason, as well as my mental health, Im going to have to grow a pair&start managing this situation in a positive way!

Its so hard when you get really exhausted. I lost all perspective this morning & couldn't decide if i should shout or cry!!

[spotsdots]

Can you request for direct payment so that you employ your own PA.

[RabbitsMakeGOLDBaubles]

Your child would be able to be assessed, but remember as a carer for him you too could request a carer's assessment from them to look after your needs too.

[amistillsexy]

Direct payments allow you to employ your own PA but you still need to find the right person (if the agency is struggling, you may do as well). You are also their employer, and need insurance. You'll be accountablw for all spending, and will need to send in records regularly, for auditing. You need to pay themonthly and pay their national insurance when inland revenue ask for it. Our council have a payrole company that we use AMD they work it out for us,bit we need to make sure we do everything, on time. It's not an easy option.
Imo, you should stick to the agency for now, bit make sure you get, and stay, in control.