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

Mark31

Hello all,

I have a question regarding what we are or could be entitled to as a family and I am hoping somebody here can advise

In my family there are myself, my wife and 2 children, our oldest is 6 and has disabilities. He gets the high rate of DLA and the high rate of mobility. Currently I work 20 hours a week and my wife is the full time carer of our child with the disability. She gets carers allowance for this.

As my son is getting older he is needing more care and it is a 24 hour a day job and a 7 day a week commitment. He does go to school each day for 6 hours but of course we have another child who is 4. We love our children and will always be there for them.

However my question is as follows. If I was to stop working to help out alot more and share the caring with my wife more would we be entitled to anything? Social security/Income support? Would it be the case where one of us would be expected to do some working hours per week or could we claim benefits to live on without working? Jobseekers allowance would obviously be for one of us looking for work but if we are both caring for a special needs child and our other child then what are we looking at?

I don't want to make anyone angry here or make it appear that we want to sponge from the government but no-one really understands the mechanics of our daily life and the added pressure on my wife. I don't want to harp on with a sob story.

Basically is it realistic for a couple with children, one of whom is disabled with learning difficulties to be able to live on benefits so there is less pressure on one parent and the child has as much support as possible?

Thanks for reading, sorry for the length,

regards,

Mark

Supermom

I've have five children, one of whom is disabled and my husband works in excess of 50 hours a week. If you work 20 hours a week and your son is at school for 6 hours then I would say your wife gets plenty of help.

I'm sorry but no I don't think its fair that you should give up work and live on benefits.
If your wife is struggling maybe a better idea would be to see if there is any respite care that you maybe entitled to. Or maybe look into a part time job for your wife so that she has a bit of a break/mind on something else/me time. Sometimes you need to step back and get some breathing space.

LunaLady

I have a severely disabled child and I sympathise with your plight.

Have you spoken to SS? They could do a carer's assessment and you may be able to access direct payments to pay for some respite/home care?

princessdon

It appears you are already getting the maximum benefits.

At the moment your wife gets 15 hours a week whilst youngest is in nursery and in September both children will be in school for 30 hours a week.

I'd look at more none financial help - Does a taxi pick the child up (so you don't have to do school run), is there holiday help etc for the long 6 week break?

Mark31

Hi again,

there are different elements of disabilities, you may have 5 children one of whom is disabled but some disabilities are worse than others and older children can be very helpful with siblings with disabilities, each persons situation is different and each cannot be judged without knowing the full mechanics of each family. I actually did do 50 hours a week at work up until my son was 4 years old until it got more difficult for my wife and seemingly is an ever increasing difficulty. I applaud your husband for doing 50 hours a week but that is his choice, it doesn't mean he has to or is morally right compared to anyone else who does less, as I say disabilities have different aspects and as children with little mobility or learning difficulties grow it becomes very difficult. I don't know your childs disability but I can only speak of my situation. As I say though you are respected in my opinion for how you choose to cope, sadly it is not as clear cut for all.

Lunalady: We will look into these options of course but at the minute we want to know our full potential outcomes before making a choice, I have not said I would want to come out of work, I have worked consistently all my life but I just need information on all alternatives and the first thing I need to know is for the worst case scenario. If none of us work, is it an option to live on benefits based on our difficulties or would the government expect one of us to work?

I hope my reply has not come across in a bad manner, I am just trying to put my points across, I am very much in appreciation of the quick responses from all so far!

LunaLady

As princessdon says - it looks like you are getting the maximum benefits. If you leave your job you will lose WTC, and although you may be entitled to JSA you will be sanctioned for leaving employment and be expected to look for work.

McKneff

Once both your children go to school, there will really be no need for you both to be at home.

Is there any reason why you both cant work 20 hours each at different times of the day.

BigAunty

You can model the impact of giving up your employment and its impact on other benefits on the Turn2us online benefit calculator.

A person who gives up their job is not necessarily entitled to Job Seekers Allowance - they can be sanctioned for up to 6 months for handing in their notice without good cuase but there is a lesser hardship payment that could be paid instead.

Generally, though there are a lot of kinks and poverty traps embedded in the benefits system, (so this remains a generalisation) - parents who work the minimum to achieve working tax credits are better off than those who are workless.

skintandscared_2

This seems an odd thing to do when your 4 year old will start going to school full time soon. Surely then things will be easier for your wife and there is no need for you both to be home alone all day waiting for the kids to finish school?!

mikey_bach

If you finished work your wife could claim Income Support for herself and you on the grounds of her Carers Allowance...
You would not be penalised I.S would need to see your last final two payslips..
You would be entitled to housing benefit if applicable.
This may give you some breathing space whilst you try to sort yourselves out.
You can work on I.S as the partner up to 24 hours but earnings will be taken into account after the disregard.

kingfisherblue

It is possible for both parents to be on IS whilst caring for a disabled child, but it is rare. My friends have a severely disabled child and the dad was on JSA. They have just been given a six month spell of IS, as their child needs full time care from two adults - he needs restraining physically at times and this is difficult for one adult (I know it sounds silly that one adult finds it hard to restrain one child, but he has phenomenal strength).

This child has physical disabilities, learning difficulties, behavioural problems, and mental health problems.

I also have a severely disabled child who has physical disabilities, including mobility problems, and learning difficulties. I am now a lone parent and have been for over seven years. My son is now 14 and needs a substantial amount of care both day and night. In addition to all of his day time needs, my son needs feeding orally four times a night, frequently chokes and/or vomits, and sometimes needs his nappy and sheets changing.

As you say, OP, there are different levels of disability, and there are also different levels of care needed, but I would suggest that you look for alternatives to giving up employment.

I also have a younger son, plus a daughter who works shifts and has an active social life. When my son are in school, I sometimes go back to bed for a couple of hours to catch up on my sleep. I have a couple of hours when the boys are with my ex husband (their dad) on Saturdays. Your wife could catch up on her sleep if she is disturbed during the night (I assume that she is, as you receive HRC for your son). She could sleep at weekends when you are there to help, or during the day when your son is at school and your youngest is in nursery. From September, she will have more time during the day to rest.

If you contact Social Services, your wife is legally entitled to a carer's assessment. This assessment takes inot account your wife's needs as a carer, and can trigger additional help such as respite care. Respite can be at home, while your wife goes out, sleeps, etc, or away from home for a short period of time (a couple of hours after school, overnight, or even a weekend in some areas).

Respite is usually offered in one of two ways. You can either receive respite via SS, or with direct payments. Via SS, Crossroads or similar will provide a care worker. If DPs are used, you receive the money to employ someone of your choice, but more paperwork is involved.

Your wife might also be eligible for a carer's grant. She should enquire at the carer's centre if you have one, otherwise SS can advise. This can be used for a variety of things, and in my area can include employing someone to do housework, gardening or ironing, pamper sessions including massage or hairdressers, cinema pass, weekend away (but you cannot take the person you care for).

Equipment can be very helpful to make life easier for carers. Contact your son's occupational therapist if he has one. If not, either the council or (if he is in a special school), your son's school. Depending on your child's needs, and the needs of his carer, equipment can include
*hoists
*special seating
*specialist feeding equipment including cutlery, cups and dishes
*shower chair or bath seat
*physiotherapy wedge
*mattress raiser
*wheelchair or Major buggy

Obviously there are many other things that can make life easier. An OT can advise.

A council OT can also recommend any adjustments to the house if necessary - we have a wetroom downstairs, complete with a specialist toilet that cleans my son and dries him afterwards. He doesn't necessarily have to do his business on the loo - he can sit on it after filling his nappy and we can use it to clean him (he has no bowel control due to a medical condition that he was born with).

If your child has continence problems, he should be able to get nappies, pull ups or continence pads free of charge, although there is a limit to the amount you get per day. My son gets pull ups delivered every month. The used pull ups are placed into a medical waste bag in a flip lid bin, and collected once a week.

If your child has regular medication, many pharmacies offer a service whereby you and your wife need do almost nothing. The Co-op manage my son's prescriptions (ten medications a day, plus prescribed high calorie milk overnight). Every four weeks they ring me to confirm that nothing has changed and that he requires all items. The following week they deliver everything to my mum's (which is more convenient for me). My mum uses Lloyds Chemist and they offer a similar service. Boots are another provider.

I assume that if your child has medication, it is mainly liquids because of his age. For tablets, some chemists (including LLoyds) can provide a blister pack sectioned into times of the day, containing the correct medication for that particular time (morning, lunch, teatime and bedtime).

Although my son has severe disabilities, and will never be cured, I volunteer as a Rainbow and Brownie Guider. I really enjoy this and my mum looks after my son whilst I am out. I also do some voluntary work at the local community centre, but only when the boys are in school and I can fit it around my responsibilites. Volunteering gives me something for me, if that makes sense. Sometimes it is only a couple of hours a week, but it is 'me time', rather than caring time.

Yes, my daughter and son do help to some extent, but I want them to live their own lives. The help that they give is what they want to do - for my younger son, it is more of a supervisory capacity, as my older son cannot be left unsupervised. My youngest looks after the older one while I sort out tea or have a shower. My daughter is older and works shifts. She helps out, but the best help that she gives me is cooking meals in bulk, so that we can freeze them. That makes my life so much easier (and more pleasant - I hate cooking!).

Apologies for the long post, but as you can see, OP, there are several ways that your wife can get help and for you to retain your job as well. If both of you are not working, and are spending most of your time jointly caring for your child, it could put a strain on your relationship. This wouldn't benefit anybody, least of all your children.