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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To point out some misconceptions about respite

45 replies

cansu · 15/06/2014 14:56

I have read numerous threads lately where posters believe that good respite care is readily available and all you need to do is ring up SS or another professional body and it will all be hunky dory. This is very rarely true.

Whilst respite does exist, not all of it is good. I have sometimes hated sending my ds to respite because I know it is not suited to him but it is the only thing available. On some occasions I have not accepted it as it was not appropriate. I have also found that sometimes what most parents would regard as unaccaptable for their neuro typical child is somehow seen as OK or good enough for a child with SN.

Respite is v hard to get. Just asking is only the beginning. In order to access it a lengthy assessment has to take place, before you can be put forward. Choice is not good (see above). Often I have found that in order to be seen as a priority you need to be seen as failing or the child at risk. 'Just' being exhausted or struggling is often not enough due to squeezed budgets etc.

I am not knocking respite, good respite is what is needed for many families who struggle with children with SN. However, it needs to be flexible and needs to meet the needs of teh young people. One size does not fit all and we need to remember that entrusting your vulnerable child to strangers is not easy! How would parents of typically developing children feel about sending them overnight aged eight or nine to a place with a variety of staff you have never met before with no way of explaining to them that it is just for one night! How would you feel sending them to school with an overnight bag then having them picked up from school and taken to respite with no way of explaining it to them?

This is the reality of respite, yes it helps, but it is hard to get and bloody hard to do especially when it is inflexible and sometimes poor quality.

OP posts:
candycoatedwaterdrops · 15/06/2014 16:30

YANBU. I know of one fantastic respite place for under 19s in a London Borough. As it is so specialist and so wonderful, it costs a fortune, so parents are offered less respite. So, parents have the option of more respite in a woefully inadequate environment for their child or less respite but in a good environment. It is unacceptable.

Don't even get my start on supposed 'respite' for adults - social worker here, very disillusioned at the beginning of her career about this.

YouTheCat · 15/06/2014 16:34

Candy, this is why I was overjoyed at ds's placement. It's run by the NAS. There was no way I could handle the violent behaviour any more. I would have ended up in hospital. But I know I have been very lucky with support and with a very canny SW who knew exactly which people to talk to.

grimbletart · 15/06/2014 16:57

luggage: re your question…bear in mind that I don't know what I am talking about Blush but the parents receive an annual allowance from the state for their (very) disabled child's needs and that can be used for whatever he needs, including e.g. equipment or a night of respite caring. As to it being 'minding' because the child is asleep, I can't emphasis enough that he is extremely disabled and the carer has to be prepared to be woken several, sometimes many times in the night to attend to him. The parents act as employers to the carers e.g. they have to deal with tax and national insurance. The money is paid directly to the carers and although he qualifies for the highest level of caring it obviously doesn't cover all his needs.

Hope that clarifies.

candycoatedwaterdrops · 15/06/2014 18:52

YouTheCat At my previous job, I knew all the tips and tricks to get respite but I am starting somewhere new so will have to put my feelers out. I am quite disgusted though that it involves a professional finding loopholes to obtain something that I feel individuals have a right to.

candycoatedwaterdrops · 15/06/2014 18:52

^^ Imagine that post with good grammar and it might make sense. Wink

YouTheCat · 15/06/2014 18:55

Makes perfect sense. We shouldn't have to fight for this.

Luggagecarousel · 15/06/2014 19:51

I know what you are talking about Grimbletart. I've never had a charge who was up less then half a dozen times a night! it just doesn't count as far as the "expenses" go.

I think what this thread shows is that respite is generally badly managed and unsatisfactory from every point of view!

Lancashiregal10 · 15/06/2014 20:20

I work with adults with disabilities and have seen the benefits of respite and also the hardship and stress caused by not enough respite places being available
It is certainly not as simple as ringing social services and all the cuts have made a bad situation worse.

JsOtherHalf · 15/06/2014 20:37

In this area we have some families who offer respite for disabled children, for which they get £35 for 24 hours. Only 2 in the entire authority have adapted homes suitable for children with physical disabilities.

There are 2 other residential options, which cost between £300 and £350 per night. The families are not charged for these, but only children/families with severe needs will be offered them. These units obviously can only handle a limited amount of children, so to maximise the amount of families who can benefit they tend to restrict the amount of nights to 2 or 3 a month.

Sad
AndHarry · 15/06/2014 20:58

I have absolutely no experience of this but just wanted to say I am in awe of the dedication of Luggage and everyone like her. What amazingly wonderful people you are.

LeftyLoony · 15/06/2014 21:08

There is NOTHING like Luggage describes where I am.
We get 2 hours a week free from the local authority provided by a volunteer who stays in our home with the kids whilst we go out. The other 4 hours we pay a private agency for, part funded by charitable donations.

We've been told we don't meet criteria for further help, with 3 kids with needs, but a friend who has only one (and a very good lawyer) gets fortnightly overnight respite, but that's in a centre with multiple staff and takes multiple kids.

JsOtherHalf · 15/06/2014 21:13

Some parents use direct payments to pay a relative/family friend to either have the child overnight, or to mind them in their home whilst they sleep elsewhere.

LeftyLoony · 15/06/2014 21:14

I asked about direct payments and got threatened with child protection.

Luggagecarousel · 15/06/2014 21:33

Not entirely altruistic Andharry, although thanks for your post!

We benefit hugely from these children enriching our family life. ( and from giving them back at the end of their stayWink )

candycoatedwaterdrops · 15/06/2014 22:26

Loony what the fuck?! Shock did they say why you weren't entitled to DPs?

LeftyLoony · 15/06/2014 22:34

Our family do not 'meet the criteria' or 'tick the boxes'. Without telling us what the criteria or boxes are.

As we're full time carers we 'should cope'. They consider school to be our respite (despite holidays, plus numerous hospital/school/doc appointments being in school hours).

So all things considered if we STILL believe there to be an issue then maybe child protection should take a look tilt head at this point

We've been referred to and bounced from the child disability team four times.

NeedsAsockamnesty · 15/06/2014 22:59

Yanbu

I've spent most of the day on the phone to a friend of mine whose 12yo has such bad behavioural problems he's considered a risk to her two toddlers. (He has no medical conditions).

On Friday he assaulted the 3yo then threatened to stab them all in their sleep. She called the police who refused to deal telling her to phone EDT she did (ss are very aware of the situation she's been trying to get help for 18 months) she finally got offered 90 minutes respite, yes you did read that correctly.

That happened today. When he was collected the respite carer heard him threaten mum and the 2yo (spooky calm type threat) mum phoned EDT after he left begging them not to bring him back because she has to sleep sometime and can't risk the little ones being harmed they pretty much said it was not their problem until one of the toddlers is hospitalised.

deakymom · 15/06/2014 22:59

when we needed respite for my nan we paid for it why cant you do that with children? (if you can afford it)

LeftyLoony · 16/06/2014 00:02

We can't afford it on carers allowance and income support.
We have to find some money though otherwise we'd fall apart.
When SS know you'll do that, and put the kids first, then it doesn't matter that the parents are going without. Their precious budget is safe!

bitsnbobs14 · 16/06/2014 00:07

In an ideal world, every child and adult with SN would get a bespoke service, clearly not going to happen.
Make your voice heard, op, don't give in.
I can't imagine how difficult it must be.

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