A query on benefits for a family with a disabled child.

Sparklebabey

So what would your wife and you do all day when both your children are in full time school? I could have understood if your 6 year old wasn't at school but he is out of the house for 6 hours (poss more due to travel) a day...

This is a question that the DWP could possibly ask if you decide to give up your employment.

Whilst I acknowledge that there are different levels of disabilites, there are plenty lone parents out there who deal with their disabled children and get no outside help.

And of course you did make the decision to have another child when you presumably knew that your eldest had complex needs and was disabled.

Realistically, you are out of the house for the same amount of hours that your eldest is at school...and I am being generous there as I am assuming that you work 4 hours a day whereas he is at school for 6.

I don't think you have any chance of being able to convince the DWP that you both need to be unemployed to care for your child...particularly when someone else (school) is doing the care during the day.

kingfisherblue

I've just remembered something else that I meant to put in my previous post. Special schools often have holiday clubs for children with disabilities, although the hours available are limited. In my area, children at special schools can access up to 35 hours over the Easter and summer holidays this year, at a cost of £3 an hour. The sessions are morning 9-12, afternoon 1-4, or all day 9-4 - so a choice of three hour or seven hour sessions. You can choose when (if) you want your child to attend. payment is made three times a year, each payment being £35.

Also, Sparklebabey raises a good point about school transport. Most children at my son's school arrive on special school transport, provided by the local authority. Although school starts at 9am, buses can collect children as early as 8am (another friend of mine has a daughter at the school and her daughter is collected from home at 7.50am :eek:). My son leaves our house on the bus at 8.15 and arrives home at 4pm, so is out of the house for almost eight hours. This is quite usual for many of the children in the school.

mikey_bach

Its not rare for anyone to claim Income Support on the grounds of a carer and claim for their partner, it is very common

princessdon

Well in that case the system is flawed IMO especially when the cared for person is in school for 35-40 hours a week.

mikey_bach

The same can be said when someone on I.S/I.B claims for their partner, the partner is not ill only the claimant

At least the partner of a carer can help with the caring duties.....

Mark31

There is certainly much to think about here and there is a lot of information to take in. I very, very much appreciate the efforts and responses from everyone, much love to you all.

To clear a few things up, my son does indeed have incontinence issues so the toilet which cleans him seems very ideal as if I am honest it is most difficult to clean him at times. He also has high strength and a very bad temper. My wife does struggle with his behavioral issues and it is really only myself he will listen to and calm down for. This is why I want to be around more, there are issues at nights too as he does not like to sleep easy, his brain struggles to shut down so he can sleep.

It does have a strain on our marriage as our time is taken up with the care, sleeping and my working hours, we really do not get any quality time together which is a big concern.

If I have missed any queries I apologise, it is a tad late and there was much to read.

Thank you all so far!

mikey_bach

You are entitled to I.S and can claim it for as long as you need too.
Hopefully things can only improve for you but at least this would you give you the much needed breathing space you desperately seem to need..

kingfisherblue

Mark, here's a link to the toilet that we have for my son. It can also be used as an 'ordinary' toilet by the rest of the family:

http://www.clos-o-mat.com/palma_shower_toilet.html

The toilet has given my son a level of independence that he would not otherwise have. To flush it and send warm water towards his bottom, he presses a pad with his foot (we have to use a toilet step as he is quite short). The pad can also be pressed between his hands, but he finds this painful due to quite pronounced hypermobility. When he lets go, warm air circulates to dry him. This continues until he stands up.

It is a very expensive loo, but the OT felt that it was the only way to give my son some independence.

You might want to seek further help for your son's temper. It could be that he is very frustrated and cannot communicate his feelings in any other way. If communication is a problem, speech therapy and/or a communication aid could be beneficial.

Also regarding your son's temper, you could contact your GP for help. He may be able to refer your son for play therapy, or something else to help him. There may be classes to help you and your wife to learn coping strategies. There will be a behaviour team within the local council - although these teams are not usually designed for disabled children, you might find a specialist in this area. Ask school if a referral is possible, or if they have a behavioural specialist within the school (some teachers take additional courses in behaviour management). Also ask the school for a meeting about your son's behaviour - does he have a temper in school? How do they deal with him? Your son needs continuity of care between yourselves and the school, so you need to agree on the best way to teach your son how to control his behaviour so that it is acceptable. If he has different boundaries at home and at school, he will be confused and less able to deal with things when they do not pan out as he wants them to.

Obviously, if you are aware of any particular triggers for your son's temper, you need to avoid those situations or teach hima way to deal with them. So, for example, if coming in from school your son is always thirsty and your wife is dealing with the younger child, leading your son to have a tantrum, the answer would be to have a drink made for your son before he gets off the school bus. I know that this is a very simplistic example, but I have used it for illustrative purposes only.

Problems with sleep can sometimes be dealt with at a sleep clinic. Ask your GP for a referral. I am assuming that you have tried the bedtime routine - go upstairs at the same time every night (even weekends), warm bath and into pyjamas, warm milky drink with light turned low, into bed for story.

If your marriage is already under a strain, it is not likely to improve if you are both caring for your child, as you will not get a break from each other. You could end up resenting your wife if you give up work, as you may feel 'forced' into the decision because of your child's needs. You may want to consider contacting Relate for help - your marriage is feeling the pressure of caring for a disabled child and if you ignore it, it won't go away but could get much worse.

Mark31

Thanks for that, how much is this toilet? I couldn't find a price on the site.

A quick one regarding the strains of marriage, we are very strong together and our strain is not having enough time together, any time out of school hours is taken up. Our only viable time together is for a few hours a day during school time. A couple of hours before we both need to make preparations for the return of our son. Preparing dinner, housekeeping duties and my wife or myself catching up with sleep from a potentially difficult previous night would also need to be factored into the school hours. Not much time together but a little.

I may be coming across as selfish in this thread and I can only apologise for that but I feel I should relay all my concerns and thoughts!

kingfisherblue

Hi Mark, the toilet is really expensive. Our first was fitted about nine years ago and cost £2500 excluding VAT (but no VAT was payable because it is exempt due to it being made specifically as a disability product). I don't know whether this included fitting or servicing.

Our new toilet was fitted last year, as the old one was no longer working and some parts were unobtainable. I don't know how much it cost.

In both cases, the OT from the council sorted it out and the toilet is actually owned by the council, not by us, even though it is installed in a private house. The costs were covered by a Disabled Facilities Grant.

Your best option is to ask for an OT appointment and see if they think that it is suitable for your son. It isn't a quick fix though. It took a long time before my son would sit on the toilet, and the first time he was sprayed with water I had to hold him down because it does come as a bit of a shock. Now, though, he is happy to clean himself on it, and can sit for half an hour or more with his books on the loo