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So, the costs of caring for a chronically ill child with a disease with lifelong consequences are starting to mount, so we thought we would look into the Carer’s Allowance stuff…..parents of children with Hirschsprung’s Disease aren’t allowed to claim until their child is 4, because before that is “within the normal range” of not being potty trained.
Slight difference, I feel, between a child not being potty trained, and a child uncontrollably pooing up to 30 times a day! And between not being potty trained and having to spend up to 3 hours a day washing out your child’s bowel. Seriously, as it happens, I am happy to be at home with my kids, but if I had wanted to go out to work - what nursery or childminder would do bowel washouts? Or, come to that, change one child’s nappy 30 times a day? And really, would a nursery or childminder have to time to spend with one individual child to spot the subtle signs of stomach distention and straining that could be early warning signs of potentially fatal enterocolitus? There is just no way on earth that I could leave Isaac with anyone else for any sensible length of time - so how come I don’t get to be his “carer”? Grrr!
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Oh lovey, that does seem like a very ridiculous thing.
i cant offer any practical suggestions, but i think you are amazing and dealing with Isaac’s condition so bravely xxx
It is ridiculous, totally, and whilst this isn’t the type of thing you probably have time or energy for right now, I think you can challenge this and your local Welfare Rights team would be a good first point of call. HTH xx
That’s unbelievable ! There must be a way to challenge this? Maybe you could contact your MP for some support? Or your local welfare/CAB team? I just googled and found this:
You have more than enough to cope with right now, and you and your baby deserve financial support. I really hope that you can find a way xxx
Unschooling Mama to River (7), Rain (4) and Blossom (2) xx
Who gave you this advice? I don’t think it is correct. In order to get DLA the child must have needs above and beyond a “normal” child. Obviously a newborns needs are fairly intensive anyway, and require constant supervision etc, however a baby requiring washouts, frequent hospital appointments and major surgery is not “normal”. Get help with the forms, it is common for babies under a year to get refused several times due to their age (unless they are complex care cases) and get your health visitor, GP and whoever else (such as child community nurse if you have one) on board and ask them to write a letter of recommendation for DLA outlining his needs.
My dd1 was fed with an NG tube and we were refused twice until it went to tribunal (it took about 15 months) , and the panel were very apologetic that we had been refused, but explained it is fairly typical for young babies. Make sure you keep reapplying for both DLA and CA, as hopefully when you do get it it will be backdated.
Also you can ask your GP for a social worker attached to children with special needs (they have different titles in different places) and they are very good at fighting the case. Make it known the financial hardship this is causing you as a family, and if is affecting the ability to job search for your husband. It is one of those unfortunate things were if you are seen to manage, then you will be left alone. Complain to everyone! If there is a hirschprung support group/association then speak with them to see what advice they offer.
ETA: Be aware that if ou are in receipt of state benefits/CTC then you are entitled to travel expenses every time you attend the hospital. Also the Family Fund offer low income families with children with additional needs grants and hardship payments, although I think you may need a social worker to get access to this.
Muslim mum of four, home educating, environmental hypocrite (but doing my best) hodge podging through this life…..
My sister receives a Carer’s Allowance for looking after her son who has Downs Syndrome. He is 3 and she has been receiving the allowance for quite some time now. She gets all sorts of help - it doesn’t seem right that you can’t. I would get further advice.
Trying to do everything - failing madly!
Being constantly & lovingly educated by daughter Freya, 19
No advice just a big hug xx
Hiya, huge hugs
I would look into claiming DLA for your little boy. My dd2 is 3 and we are in the process of getting her diagnosed ASD. A lovely nurse from the paediatric team in our area came round and helped me fill in the DLA forms. You have to be very clear on them what you are doing that is above what they would be expected to do for their age - this lady decided what was above what a child with “normal” needs was and we wrote that down on the form. My friend has a child with albinism. They were claiming DLA from a very young age with him because of his sight issues. Maybe you could have someone from your paediatric team come round and help.
Also, I wonder if childminders and nurseries can claim extra money for looking after a child with medical needs. E.g. my dd’s nursery claims money off the LEA for additional help for her. I am wondering if there is something similar for children with medical needs to reflect the extra care that they may need. Your paediatric team may be able to help or even if you ring up a nursery in your area they might be able to advise you.
One of my neighbours has a child born with Hirschprungs. I dont know her well but know that he is now a teenager and has always gone to school and she has always worked. Obviously there are different degrees of symptoms but I understand that he is able to manage his symptoms.
Huge hugs to you and your family as you adjust and adapt to this unexpected situation xxx