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#1 Miss Mac

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Posted 31 December 2014 - 01:05 PM

We're looking at dropping one of our respite weekends and getting direct payments instead. We'll lose some time (the respite is currently 4pm Fri to 10am Mon) but it'll give us the flexibility to have one night's sleep every week, or even save up some sleeps for a holiday!

 

In theory this sounds quite good. What's it actually like? Are there any cons I should be aware of?



#2 Mozzy

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Posted 31 December 2014 - 08:27 PM

Yep lots! (but there are pros too)

 

1) most areas have set places they use for respite or families signed up to "shared lives" who do respite these tend to be used by most people who get "commissioned care" and, as I am sure you are aware, book up quick. So some people have every other weekend. Some have 1 weekend a month etc etc and that is always "booked in". With direct payments it is up to you to organise it and sometimes the "commissioned care" lot get first pick or it is simply assumed they want every other weekend (for example) from one year to the next. So you can be bottom of the pile to pick your dates, although this depends on area and if they use respite centres or families or a combination of both.

 

2) the cost. Places (or families) who are people who do this all the time for social services are often on a "payment system" and more often than not this is a set amount every month (especially for respite places not families) and social services pay them this amount every month even if they do not fill all the beds in that home. It is called a tender which different places bid on. This is one way to keep the cost down - a respite home would much prefer to know it is getting £5000 a month every month even if it is not full than different amounts each month based on how many they have in there, therefore social services get a discounted rate (I'm not explaining this well, let me try again)...

A care provider with have different rates, my old one for example use to charge me £14.75 per hour for support as I was a direct payments client. They had a different rate they charged social services which was £12.50 per hour. They set their social services rate as low as possible to win contracts, big packages of care where as direct payments they can charge higher, they call it the "private rate".

 

3) As much as it is overseen by social services still Direct Payments is your responsibility, so, for example, if you book a holiday book your son into respite and due to staff sickness the respite place cannot take him when you need to go on holiday social services have a lot less responsibility to find another place.

 

I am sure there are more cons but I can't think of them right now. But the pros are good too

 

1) because you are a private customer who can take their business anywhere they choose you can (sometimes) get a higher level of 'customer service' they do not want to loose you.

 

2) you have freedom. For example if I need respite because I am unwell and having lots of seizures I can pick between 2 different respite centres or I can pay PA's to come and stay in my spare room and look after me in my own home (which I prefer).

 

3) if I don't like something after trying it (care provider, PA's, respite place) then I do not have to go back, I have freedom.

 

4) I can "save up" direct payments (within reason they have a limit you can save, if you go above that you loose it - in my area it is the total of 3 months of direct payments but this rule is flexible if you talk to them) so I can save up to take a carer away or I can keep some to one side for emergencies if I need extra support.

 

5) you can request a one off "additional payment" for something if needed like emergencies, assistive technology, changes in circumstances of primary carer etc etc.

 

It is very much a personal choice to be honest. Both ways have their ups and downs. It might be worth asking if you can just book a week in the summer and reduce your monthly allowance without going down the direct payments route just so you know if that is an option.

 

Me, personally, my day centre is commissioned care, my social worker sorts that, social services pay the bill and it is always the same 2 days a week. I have direct payments for everything else so thats PA's, care companies I may choose to use, respite etc etc. It works well for me.

 

Oh one biggy I just remembered - you cannot under any circumstances pay for council run services with direct payments - this is a big no no because the council are not allowed to "give" you money and then you "give" it back to them. This is why I ended up with a split budget as my day centre is council run I am not allowed to pay them out of direct payments, this isn't a local thing it is a national thing, something to do with fraud that I do not understand!


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#3 Miss Mac

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Posted 31 December 2014 - 09:53 PM

The respite package we currently get is one weekend a fortnight with a sharing carer. LN has been there since he was 4, and she's marvellous. We'd maintain this respite. The other session we get is 3 overnights per month (in one lump) at the LA respite centre. LN has never been THAT keen on going there, but it's part of his routine so we could keep going with it.

 

The advantage with dropping it is that it brings him under the LAC limit with LA-provided respite, and reduces quite a bit of stress (they often phone us to ask for things or consent during his respite stays). This used to be worth it as they'd provide 5 days during the summer so we could have a proper break, but they no longer do this.

 

The disadvantage, as far as I can see, is that we haven't got anyone to do respite care through direct payments, and there's no guarantee that it would work.



#4 Mozzy

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Posted 01 January 2015 - 12:29 AM

Could you look at care in your home for him? If you found the right person, locked all rooms he didn't need access to etc etc. or maybe the shared care people would be allowed to become your employees and do it as extra in the summer?

 

It is worth asking around, I mean the care company I work for, one of the big things we do (well not me but our support workers) is go into homes and look after kids / adults while the rest of the family go away. It is easier for the person in some respect as they can continue any clubs etc they go to and be in their own home with their own things. it might be that there is a company near you who would be willing do introduce 2-3 people to LN to cover a week (8-2 shift, 2-10 shift followed by a 10-8 waking night) It is something lots of companies will do.

 

Up your way Google United Response, Regard Partnership, Dimensions as a starting point, these are all national(ish) services so potentially will cover your area. All have Autism specific teams as well as general LD teams and will (at no cost) come out, talk to you (and they will come evenings / weekends if needed to do this) and do their own assessment as well as take on board the social service care plan, go away, see if they can meet needs and come back to you with a proposal and costs. Oh and some of those places have "residential homes" which they often keep one room free in for respite people. And if these companies will come out, chat etc and tell you yes or no at no cost, you kind of have nothing to loose.

 

Good luck with your search.



#5 Huwbert

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Posted 01 January 2015 - 02:54 PM

With our boy we went to full direct payments a couple of years ago  - we use his TAs and another carer who knew him from a disabled play centre, and the Saturday play centre.


His TAs take him out on every other Saturday and the other carer takes him to his home for the weekend , or he stays at our home while the rest of us go away .

We love the flexibility of DP and our lives are so much more balanced now.  His first respite was privately paid foster care (over £300 per weekend), then eventually social services picked up the tab, but the foster career didn't work out as she was in it for money rather than the needs and care of our boy.  Since DP we are all so much happier. 

Maybe we are lucky because we found carers easily, maybe your boy has TAs who would be willing to be carers?

We haven't had any down side. - he gets his hours per month and we use them to be able to fund 2 carers for outings plus overnights - so completely what we need.
~HUW x



#6 Miss Mac

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Posted 01 January 2015 - 05:28 PM

That sounds really promising. I think the issue may well be that we can't afford to go away each month for the weekend - plus our other two have school Sat AM, so it's tricky getting away other than in the holidays. There's no point in someone coming in if we're here, as we'll be watching him anyway!

 

The day times are manageable, but we really come unstuck with lack of sleep. It could be that we use them to reduce day time care and get more nights - if we can find someone willing to do it. His TAs are lovely people, but they're still underestimating how many difficulties he actually faces when out and about. 



#7 Huwbert

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Posted 01 January 2015 - 06:07 PM

We definitely save up hours for school holidays  - we've been away 3 times -  for 5 days or a week, each time without him

Our carer takes him overnight at his house - but for our needs we use that in school holidays

I used to have his TAs come in to the house and play with him - and I went up to bed to sleep for a few hours(earplugs in!)

I understand the 'out and about ' trauma  - that's why we pay 2 carers, despite only having hours DP for 1  - so in effect we lose half his hours , but it's worth it.

We sometimes book a Travelodge on the £19 savers - and the other 4 of us go 2 miles down the road for a night's sleep!  Well £19 plus the statutory £5 WiFi fee ;)

If you can find a carer that your boy is happy to have a sleepover with  (and vice versa), you will be laughing ( or sleeping).   Maybe some staff at his respite centre would be suitable to work for parents like this?

HUW x
 






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