Any help avilable for a child with hearing problems?

narabanekeater

Some back ground info for you. My hubby works full time (till 7PM after commuting) for approx 16k a year so above the tax credit help with NHS exemption card qualification. We have 3 children. I do not currently work although have been looking for some part time hours up until very recently.
Our son who is 8 has ongoing hearing problems. He is on his second set of grommets and had had his tonsils and adenoids out.
For around the last 2 years he has been falling being more and more at school due to having to have time off for reoccurring ear infections. This has caused him to fall greatly behind. He is under the care of our local ENT team. The school have put into place simple ideas to support him like allowing him to sit at the front and he is seen by the school hearing impediment lady. She agrees that there is a problem and recommends hearing aids. But until we can clear the infections he cannot be fitted with them. He cannot hear at all anything spoken from behind him. The TV has to be on full blast.
He has now had an ear infection for the last 5 weeks. He has had 4 courses of antibiotics from the GP and swabs. The swabs show that the antibiotics that he needs are penicillin which sadly my son is allergic to. The Dr is asking him to be admitted into the local hospital tomorrow for IV antibiotics. While he has an infection he loses balance, has facial swelling, very offensive discharge, temperatures, general aches and pain and the grumpiness/ tears that goes with that. He is becoming more and more reclusive if that’s makes sense. He’s very happy in his own company and now has strong attachments to his soft toys. I have to clean his ear area at least 3 times a day, administer medicines/painkillers. He has also waked me up 4/7 of the last week nights. He has had at least 14 courses of antibiotics this year. I have to change his bed sheets daily as the discharge goes all over them when he’s asleep.
I will of course stay with him leaving hubby at home to keep the house running and the other two children looked after. This of course has a major impact on our family life. He finds it hard to form friendships now far more than before and children often joke about him and call him smelly. One comment in particular was that you can smell him before you can see him. Painkillers are left for him at school to be given if he needs them.
Because of me having to stop job hunting for the time being we are struggling financially. I have gone through all of our bills and cut as much as possible. He has to date 5 appointments next month at the hospital that cost £7.50p a time to get to on the bus (that’s the cheapest way to do it) working alongside the meetings at the hospital and school would also be hard. I wouldn’t think an employer would be very understanding either when I would have to leave work to pick him up poorly from school. Another extra cost is having the heating on extra when he’s at home. I do make him dress warm in the house but he is very cold.
Does anyone know if there are any extra benefits we could claim for on a temporary basis that would help pay for bus fares? Before school clubs that I often have to put my other 2 children into so I can make appointments on time with my son?
We have been told this could be ongoing and more than anything we want to see him better. Him having a hearing aid doesn’t bother us in the way of seeing it as a negative thing. We claim CTC and WTC and own our own home with a mortgage. Sorry if I’ve waffled on. I'd also welcome nay advice if anyone knows of any on line groups I could join with other parents of children with a hearing issues.

pmlindyloo

You may be able to get help with travel costs through the NHS Low Income scheme.

You will need to complete this form

http://www.nhs.uk/NHSEngland/Healthcosts/Documents/2014/HC1-SC-April-2014.pdf

The only other possibility is Disability Living Allowance for your son.

Google for more information and then make an appointment with CAB to complete the application.

HOWMUCH

When my son had glue ear I used to put a soft towel on his pillow this soaked up the discharge from his ear. It may be worth a try. Saves on having to keep washing the bedding, just a hand towel.

Poppy9

Use this calculator to see what you are entitled to. You should do it with and without your son being entitled to DLA


https://www.gov.uk/tax-credits-calculator

narabanekeater

Thank you both and I shall certainly be looking into the low income scheme. Reading up on DLA it seams a hard one because when hes not got an infection he can be fine. Still hard of hearing of course. But on occasion generally well. It seams DLA is for people that are ill all the time. Or am I not reading it correctly? User HOWMUCH I apply a cream called Hydromel three times a day to stop the drained out of his ear liquid sitting on his ear lobes and skin making it sore. I have used a towel but the towels fluff got stuck in the cream. If you can imagine a very swollen inner and outer ear. Thats totally covered every morning which I then gently clean off and again by dinner and then by supper time also. It has been so bad that it gets on his clothes and the sofa.

narabanekeater

We had planned for me to go back to work when my youngest was full time and that money would have made a big difference in paying off our mortgage sooner, building up a good emergency fund etc. Luckily we have little debt and being frugal has meant I have been lucky enough to stay at home with my children. However its the travel costs, money towards breakfast clubs and the cost really because of my son being poorly thats really stretching us because like everyone our costs of living have increased with things like food going up

Tigsteroonie

narabanekeater wrote: »

Reading up on DLA it seams a hard one because when hes not got an infection he can be fine. Still hard of hearing of course. But on occasion generally well. It seams DLA is for people that are ill all the time.

DLA is to help with the costs of additional care (&/or mobility) that your child's disability creates. In your case this would be assisting with the treatment/medication; additional washing; ensuring his safety because he cannot hear a shouted warning; that kind of thing.

The qualifying period is such that the child has to have had these problems in the last three months, and be expected to have them for at least the next six months. Your child's ongoing issues with infections and grommets, plus the inability to wear aids until that is resolved, would suggest they qualify. I've highlighted the relevant part of your post - even once the infection goes, your child still has hearing difficulties.

When it comes to DLA, I believe nothing ventured, nothing gained. The NDCS (National Deaf Children's Society) has a guide to completion of the form, and Contact-a-Family have some very good advice on their website too. Incidentally, the NDCS website also has information booklets about grommets etc.

(Mum to a deaf autistic child!)

Poppy9

narabanekeater wrote: »

Thank you both and I shall certainly be looking into the low income scheme. Reading up on DLA it seams a hard one because when hes not got an infection he can be fine. Still hard of hearing of course. But on occasion generally well. It seams DLA is for people that are ill all the time. Or am I not reading it correctly? User HOWMUCH I apply a cream called Hydromel three times a day to stop the drained out of his ear liquid sitting on his ear lobes and skin making it sore. I have used a towel but the towels fluff got stuck in the cream. If you can imagine a very swollen inner and outer ear. Thats totally covered every morning which I then gently clean off and again by dinner and then by supper time also. It has been so bad that it gets on his clothes and the sofa.

Good advice of Tigsteroonie. When filling in these forms complete them with the issues you have on bad days. One of my nieces had DLA for her hearing problems. She had repeated infections and had to have a couple of surgeries and the bone broke down and she lost hearing in one ear. She's never had a hearing aid - something to do with the damage to ear and risk of more infections. She's a mum of 2 now but I know she had support as a child in school and university. I believe she had a statement in place during school to ensure she had appropriate help as she missed quite a lot of school.

kingfisherblue

Please don't follow the above advice and fill in the forms with the issues you have on bad days. You should be honest and complete them with details about average days, otherwise you are implying that the issues are there all the time, and this is fraud. You can, of course, say 'on average days, x happens. On worse days, which occur y times a month, z happens'. This shows a more accurate reflection of day to day life with hearing impairment and the knock on effects. Keeping a diary can also help to provide evidence of difficulties faced.

Remember to include information such as what happens when your son loses balance - for example, when walking to school, I assume you have to take extra care so that he doesn't fall into the road. Include the impact on social activities and relationships - name calling and bullying because of the odour of the discharge (and I hope that you have already take this up with school), lack of opportunity to speak to grandparents on phone (if this is something that would otherwise happen), unable to attend friends' houses to play if this is the case.

As well as the NCDS, check to see if there is a Deafness Resource Centre near you. Where I live, they have youth groups for both primary and secondary age groups. As well as being a social activity for your child, it can be a chance for you to speak to other parents.

If DLA is awarded to your son at middle or higher rate, you can claim Carer's Allowance if you fulfill the criteria. Tax credits also pay extra for children who receive DLA.

(Parent to a son with Down's Syndrome, who has hearing problems and wears aids in both ears).