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

wattdallas

kingfisherblue wrote: »

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.

With respect kingfisher some of us have children with very high care needs that require 2 carers ,we have no one to take our child for weekends or have family to help out.

And as for school clubs ,carers grants,etc - dont get any.

Respite - my daughter is nearly thirteen ,she cannot do anything for herself so requires 24/7 care and is only entitled to 1 night a month respite.

You see some people get everything and some dont - you are really lucky.:)

mynameistallulah

wattdallas wrote: »

With respect kingfisher some of us have children with very high care needs that require 2 carers ,we have no one to take our child for weekends or have family to help out.

And as for school clubs ,carers grants,etc - dont get any.

Respite - my daughter is nearly thirteen ,she cannot do anything for herself so requires 24/7 care and is only entitled to 1 night a month respite.

You see some people get everything and some dont - you are really lucky.:)

You automatically assume that because kingfisherblue manages to cope on their own that their child is less disabled than yours, and that makes them "really lucky". I can't tell you how offensive that sounds. The reality is that kingfisherblue does a fantastic job of looking after their child, but also manages to keep some perspective on the issue - something which is severely lacking in your case.

kingfisherblue

Hi Wattdallas, I realise that some people get nothing in the way of help, and I also realise that some children do need two carers. My friends are in that position.

Yes, I'm very lucky. I'm lucky that my son is here, as he was given four hours to live when he was born, and he is now 14. I'm also lucky that my mum has my son when I go to Rainbows and Brownies (held at the same time, in the same room, so I am out for about 2.5 hours in total, including travel time and setting up/clearing away). My other two kids are also great.

My son does need a lot of care both day and night, and I provide the vast majority of it. He cannot be left alone and although I doze through the night, I get very little sleep as I am up several times to see to my son's needs and to check on him.

I don't get everything in the list that I posted. I don't much of it, but that doesn't mean to say that they are not options that the OP might find useful. His family may qualify for some help, but he might not know about it if no one has ever given him the information.

No one takes my sons for the weekend. Their dad has them for a few hours on a Saturday. Admittedly this is most weeks, but it is time that my sons are entitled to spend with their dad. I am very fortunate that despite our differences, he still wants to spend time with the boys. However, he does not take them overnight more than once a year, and even then, he stays at his parents house, where my disabled child sleeps in his nan and grandad's bedroom (downstairs). My younger child sleeps upstairs in the room next to his dad.

I just tried to offer some alternatives to the OP, as once he gives up his employment, it will be difficult for him and his family if he feels that he has then made a mistake in doing so. It won't necessarily be easy for him to get another job. By sharing information, the OP might find some help that is possible for his family to receive. If not, maybe it will help another parent reading this.

The OP will be able to make a more informed decision based on information from posters on this thread - not just myself. If he feels that giving up work is still his best option, that's fine and I wish him luck. I, and others, just wanted him to have a range of facts to consider before making such a big decision.

You make it sound like a competition as to whose child is the most disabled and although you probably don't mean to, that's how your post comes across. I know how hard it is to be a parent of a disabled child, and that's why I think we should share information and offer constructive advice to each other.

Let's not argue

wattdallas

mynameistallulah wrote: »

You automatically assume that because kingfisherblue manages to cope on their own that their child is less disabled than yours, and that makes them "really lucky". I can't tell you how offensive that sounds. The reality is that kingfisherblue does a fantastic job of looking after their child, but also manages to keep some perspective on the issue - something which is severely lacking in your case.

I said really lucky being able to have a break ,if you cant follow a simple thread my dear maybe you should post on a subject you know about:o

Oh and 1 carer could not possibly care for my daughter so thinking my perpective is A OKAY.

LunaLady

mynameistallulah wrote: »

You automatically assume that because kingfisherblue manages to cope on their own that their child is less disabled than yours, and that makes them "really lucky". I can't tell you how offensive that sounds. The reality is that kingfisherblue does a fantastic job of looking after their child, but also manages to keep some perspective on the issue - something which is severely lacking in your case.

I think that wattdallas means lucky with regards to support and outside agency help - it can be a massive postcode lottery. I dont think she was playing disability top-trumps!

kingfisherblue

Thanks Tallulah. That's a lovely comment that you have made about me. Like most parents, I don't always feel that I do ' a fantastic job' to use your words. I know that I am far from perfect, but I do try to do my best for my children, as do most parents. I'm sure wattdallas did not mean to cause offence.

wattdallas

kingfisherblue wrote: »

Hi Wattdallas, I realise that some people get nothing in the way of help, and I also realise that some children do need two carers. My friends are in that position.

Yes, I'm very lucky. I'm lucky that my son is here, as he was given four hours to live when he was born, and he is now 14. I'm also lucky that my mum has my son when I go to Rainbows and Brownies (held at the same time, in the same room, so I am out for about 2.5 hours in total, including travel time and setting up/clearing away). My other two kids are also great.

My son does need a lot of care both day and night, and I provide the vast majority of it. He cannot be left alone and although I doze through the night, I get very little sleep as I am up several times to see to my son's needs and to check on him.

I don't get everything in the list that I posted. I don't much of it, but that doesn't mean to say that they are not options that the OP might find useful. His family may qualify for some help, but he might not know about it if no one has ever given him the information.

No one takes my sons for the weekend. Their dad has them for a few hours on a Saturday. Admittedly this is most weeks, but it is time that my sons are entitled to spend with their dad. I am very fortunate that despite our differences, he still wants to spend time with the boys. However, he does not take them overnight more than once a year, and even then, he stays at his parents house, where my disabled child sleeps in his nan and grandad's bedroom (downstairs). My younger child sleeps upstairs in the room next to his dad.

I just tried to offer some alternatives to the OP, as once he gives up his employment, it will be difficult for him and his family if he feels that he has then made a mistake in doing so. It won't necessarily be easy for him to get another job. By sharing information, the OP might find some help that is possible for his family to receive. If not, maybe it will help another parent reading this.

The OP will be able to make a more informed decision based on information from posters on this thread - not just myself. If he feels that giving up work is still his best option, that's fine and I wish him luck. I, and others, just wanted him to have a range of facts to consider before making such a big decision.

You make it sound like a competition as to whose child is the most disabled and although you probably don't mean to, that's how your post comes across. I know how hard it is to be a parent of a disabled child, and that's why I think we should share information and offer constructive advice to each other.

Let's not argue

Kingfisher im not saying my child is more disabled ,it has nothing to do with disabilities its about care needs.

Some have major needs and some less but all are disabled.

And i know you are trying to help but the fact is some children do require 2 carers.

My daughter has alife threatening condition and is severely mentally delayed ,cant walk ,talk ,visual problems ,daily seizures, scoliosis,.She cannot do anything for herself and never sleeps !!!!!

We get no help ,we only have each other ,its very very hard.


Sorry if my post came accross as a competition ,promise it wasnt:)

Mark31

Firstly I am sorry this has turned into a bit of a drama...

Without getting involved in other disputes I would like to add we do not get any outside help, I have no family who can help. Both patents passed away, as have my siblings except a sister who I don't see. My wife's mother has Multiple Sclirosis and her dad works long hours at the hospital. I am just adding this so people know we cannot just get a babysitter for a few hours when we need a break.

However I did make it clear this question I have asked is for the worst case scenario, therefore I am not being selfish, just inquisitive at the moment.

I am in the process of speaking to my employers about getting my shift pattern changed so it is for when my son is at school, I am looking at other better options. I just want to know if my workplace will not help, is Income Support viable until something suitable comes up.

Many people have answered well and heave helped greatly, I fully appreciate all the positive and non-judgemental help. I really do not want to come out of work, I enjoy the few hours I get out the house and having a task to do, even though it is the dreaded warehouse I work in!

Can anyone explain this universal credit and how it would impact our lives?

Mark31

princessdon wrote: »

Benefits are not so people can have quality time together! Sorry but that is one of the most selfish statements I have read (if you take it alone).

If you need to be aorund for your childs needs, then I get that (although whilst he is at school 40 hours a week I don't fully get that TBH), but for you to ask me to pay for you so you can have quality time with your partner is an entirely different thing.

How is your "lack of sleep and time to do chores" any different to my friend who has triplets! Do you think she has time to sleep and do chores? Should her husband give up work so they can have me time when the children are 6?

Just to add to this my son does not do 40 hours a week at school, he does 30, 32.5 if you take travelling into account.

Also having 3 children aged 6 who will sleep all night and potentially do their own thing after school is entirely different to having a disabled child who does not sleep great and needs constant care. I appreciate triplets are hard but as they grow they will play amongst themselves, sleep, feed themselves, go to the toilet by themselves and probably help around the house for pocket money.

Completely different set of circumstances there, my child will need special care right through his whole life.

It doesn't matter now, I only answered as your post annoyed me slightly as it really is a situation that is worlds apart.

GlasweJen

Mark31 wrote: »

Firstly I am sorry this has turned into a bit of a drama...

Without getting involved in other disputes I would like to add we do not get any outside help, I have no family who can help. Both patents passed away, as have my siblings except a sister who I don't see. My wife's mother has Multiple Sclirosis and her dad works long hours at the hospital. I am just adding this so people know we cannot just get a babysitter for a few hours when we need a break.

However I did make it clear this question I have asked is for the worst case scenario, therefore I am not being selfish, just inquisitive at the moment.

I am in the process of speaking to my employers about getting my shift pattern changed so it is for when my son is at school, I am looking at other better options. I just want to know if my workplace will not help, is Income Support viable until something suitable comes up.

Many people have answered well and heave helped greatly, I fully appreciate all the positive and non-judgemental help. I really do not want to come out of work, I enjoy the few hours I get out the house and having a task to do, even though it is the dreaded warehouse I work in!

Can anyone explain this universal credit and how it would impact our lives?

Universal credit is going to take over current means tested benefits. Basically housing benefit/local housing allowance, council tax benefit, tax credits, income support, income based employment support allowance and income based jobseemers allowance will all vanish and universal credit will kick in.

Universal credit will have conditions where claimants are expected to seek work based on criteria such as their disability status, wether or not they are a single parent and what age their youngest child is.

2 parent families will be expected to work a minimum number of hours per week, the change in tax credits this year was prep for universal credits coming in.

http://www.dwp.gov.uk/policy/welfare-reform/legislation-and-key-documents/universal-credit/
This is the link to the DWPs universal credit information.