To point out some misconceptions about respite

[cansu]

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.

Good respite can save lives. However, YANBU, it's not that simple.

You are so right cans. And that's before you even consider how hugely expensive it is and the endless form filling that exhausted, overworked parents of a very disabled child have to go through…..

Sorry - I mean cansu.

Good post I have actually been offered respite but refused. The reason for this is dd is very scared of strangers and the experience would be traumatic for her.

As a respite carer I am free to the council, and very under used. I am paid expenses, which nowhere near cover the expenses of feeding and occupying another child, not to mention the number of times we have had to redecorate, or fund clothes, etc that the parents refuse to provide.

We take endless abuse from some parents. ( although some have become life long friends), the council mess us around no end, our homes are subject to scrutiny and inspection without notice, and our presence at meetings or training of all sorts demanded with no consideration for child care or working hours.

My own DC have been threatened by the parents of looked after children, and have had their own possessions stolen, broken and smeared in excrement. That is the down side, the upside is they have enjoyed the company of some incredible young people and benefited from some very enriching relationships.

I have had the mother of one of my looked after children try to demand that my own DC re sent away so I can concentrate on her DS.

Some of the social workers I have had to deal with have been teenagers, or non English speakers, or one who could not read.

i agree with the OP, respite care is badly used. As I said, we don't even cost the council anything, I even pay my own insurance! Yet we are treated so badly that few people stick it for long. I've done 10 years. I don't know anyone else in my area who stuck it more than two: what a waste of good will and resources!

And don't even start me on the paperwork the government demands........

grimbletart, it is not expensive, it is offered voluntarily. We are supposed to be paid "expenses" but if it even arrives, it is less than £25 for 24 hours.

As a former SS bod I would say that where I lived there was one particularly outstanding respite provider I loved. Overused would be the word. If they are good, they are full. Also, you want to use them for the people with the most challenging behaviour because they are expert. Which means what for people who are shy, worried and not a concern?

Luggage: sorry, I must be talking about something different . The parents of the disabled child in my family pay £10 an hour out of the allowance they get for their disabled child. So one night, for example, when the carer picks him up from school and takes him overnight, costs them around £100.

"If they are good, they are full"

Not the case, at all, I am very good. I am not only not full, but have sometimes approached the council myself about families I know, and asked why they are waiting, when I have a suitable vacancy. or have even been asked for by name.

the answer is usually something like "the paperwork hasn't been completed" or "can't be found"

I once had a child in my care who was lost from the system totally. They forgot he existed. he was coming to me for respite one weekend a month for three years, but nobody knew! His carer and I were filling in all the paperwork every time, and someone somewhere was filing it under "haven't got the foggiest what this is about"

grimbletart, would love to know if it was the carer that actually got that money, or someone else. Here, the cost of having a child sleep in your house is set at £0, because they don't cost anything asleep! You get something for the waking hours, which are taken to be 12 hours a day .....

it is supposed to cover food/ transport/ activities,/ wear and tear on the house/

but it doesn't.

Are you sure this isn't child minding you are talking about? Child minding is a career, respite caring is voluntary. Our council uses child minders for respite too, but they are not actaully the same as respite carers.

Increasingly councils have contracts with providers so they can get a good deal. This means less choice for families.

The respite my ds was offered was woefully inadequate for his needs, to the point of being dangerous. So we never took it up - this was when he was 10 and I was exhausted. By 13 his school sorted out one over night a week during term time which was okay but still not appropriate really.

It was very hard to get anything at all though. Lots of paperwork to go through and a million and one meetings.

What do you mean by "provider"? Surly using local respite carers is the best deal you are going to get?

In what way inadequate Youthecat? I'm interested to know if the care i offer would be considered adequate for your DS, or if you were looking for something completely different.

Luggage, I have never heard of respite for children with additional needs done that way because of all the health and safety assessments that need doing for a start.

Ds's respite was in group centres. The first one was bloody awful.

Respite care is not usually voluntary. Some councils may use carers in the community like link carers who usually get expenses but not payment. Some people use respite centres (more severely disabled or the children's behaviour is more challenging) where the costs are usually very high as staff are on duty all night as well.

Inadequate because ds requires 2:1 care for a start and it wasn't going to happen in the first place. It was for more socially able/less volatile children and he would not have settled as he has sensory issues around noise (especially children type noise).

What sort of health and safety assessment? you tell me what it is, I'll tell you if i done it!

No, there wouldn't have been 2:1 care in my house, because I'm a single mum. 1:1, yes, but other respite carers offered 2:1.

I'd say my ds would have been too severe a case for respite in someone's home. The health and safety assessments were to do with keeping him safe (as no awareness of danger - would run a bath of hot water and sit in it given the chance, so needed someone awake at night etc) and also keeping others safe as he is very violent although this has improved with age and the rather excellent care he gets now as he is in an adult residential place (he's 19).

I can see it would be an excellent option for other children though.

Maybe it wouldn't have been suitable for your DS. As far as Heath and safety goes though, here are some of the checks we have had.

My health, and immunity to various infections are checked every few years. (Some of my charges bite!) I have a full medical, and assessment.

The ventilation

The temperature of heating and hot water.

The temperament and health of our animals (vet's report)

All the usual gas service certificates.

The security of the external doors. Also the security of the garden gate and fences.

The nature of plants in the garden

The cleanliness of the house and garden.

Electrical tests.

Safety features such as cupboard locks and stair gates. The storage of medication belonging to charges, or to family. Whre anything such as knives or alcohol is kept.

the night time clothing of the whole family is inspected, we all need dressing gowns and slippers to come out of the bedroom.

The fire alarms, smoke alarms, CO alarms, fire extinguishers, fire blankets, first aid kits, and fire escapes are inspected.

The nutritional content of the fridge and storage cupboards.

The record keeping

I've even had inspectors check under my bed. I asked what h was looking for, and was told that he had heard of one carer somewhere in the country who had a pet snake which wasn't on their vet's certificate, and they hid it under the bed.

The non choking size of any objects within reach.

I really cannot remember what else, to be honest, but if you think of one I have not said, tell me, and I will say if we do that check or not.

Sounds very thorough.

Tbh I can't remember what all of the checks were as it was quite a while ago now.

I don't think our council offers this kind of respite though maybe they should.

I am sure you provide good care and have been thoroughly inspected Luggage. However being seen to comply with health and safety etc is not really what I am talking about when I say one size doesn't fit all. I have a child who has severe autism. He needs a very quiet environment as noise makes him anxious and causes him distress. He finds new situations and too many new faces stressful. Putting him in a noisy, new environment with staff that change regularly and other young people who talk, laugh, shout and screech is not good for him. Add to that that some of the carers have very little experience in autism and see it as the same as many other disabilities make the whole thing less than ideal. Then add in the lack of personal space. My ds needs his own space away from others - he doesn't get that at respite. Then he has no language so can't easily communicate his feelings. It takes time to build up the relationship so you can spot the signs he is getting upset, anxious, hungry, thirsty, tired etc.

Cansu, it sounds like the respite care I've always done is the tyoe you were looking for.

We have one spare bedroom painted neutral,, and the decor changes for each charge. One girl likes a certain colour curtains, and deep rug, one boy likes everything plain, with a specific on the wall, etc.

we only ever have one child at a time, and some come for many years, so we know them very well, and they know us.

There is no changing staff or noisy children! they have their favourite things for tea, and their favourite TV programmes, etc. They have personal space, as the spare room is theirs for the duration of their stay.

I have had decades of experience in autism, and am "over trained" to the point where I could write a thesis on the difference on all the separate schools of thought and contradictory advice....

Unfortunately, I can't help you, as have decided i will not be taking any new children, and will stop when my current two grow out of coming here...

however, there may be similar provision in your area, if you ask?

sounds great! seems ridiculous that you don't actually get paid for looking after the child. I am sure there are people like you who do and could offer brilliant help. Unfortunately this isn't really my experience. In my area link carers tend to be used if the child is not very challenging in their behaviour or could fit in relatively easily into family life. I would like to see SS talking to families and carers group to find out what they want rather than imposing the model they find best value on families.