DLA and Childhood arthritis

[Lollypops20181]

Hi everyone,

Hoping someone can please offer some helpful advice to me regarding the following.

My son who is 10 years old has JIA (Juvinile Idopathic Arthritis) since he was 4 mainly affecting his knees. After years of medical mismanagement we have finally been referred to GOSH for an appointment which we are waiting for so they can come up with a firm diagnosis and a medical management plan.

I am a single parent and I work full time. Since September of last year the little boys condition has deteriorated significantly with pain and stiffness being the main issues. He is frequently unable to get out of bed in the morning and walk because of said pain and stiffness. The boy also suffers from hypermobility. Recently (Dec 2013) he started complaining of neck, back, wrist, and finger pain which I don't know if it is related to the JIA or hypermobility.

The boy needs on average 5 hours of care per day and this also needs to be done at school. He needs to be carried sometimes when we are out as he is no longer able to mobilise any great distance without severe pain and discomfort.

I have applied for DLA for him in March and I included a supporting letter from the GP and School. I have a very supportive employer who allows me to work from home when my son is unable to go to school or if I get a call during the day at work from the school to collect him i am allowed to go. Thankfully I have not had a reduction in my wages.

Due to all the costs I have incurred with my childs illness (including, on average, £50 parking costs per month for emergency hospital admissions etc.) I have unfortunately got into arrears with my rent. (£500 - my rent is £1700 per month). The landlord has since got a possession order and I went to the council for advice this morning and they said they could not offer any help as this is "intentional homeless" - INTENTIONAL????? yes i really want to be homeless!!!

My questions are therefore:

1. Will I get the DLA and if so how much? How long does the process usually take? The DWP have stated they have not recieved my application in the processing department yet and it will take upwards of a further 12 weeks to get a decision!!

1. If I loose my tenancy will the council not help me? (I dont feel I have any other choice except to go to the council as trying to secure a tenancy in London - with arrears - no reference from the landlord - is like trying to win the lottery!!

I am in debt up to my eyeballs, my council tax account is in arrears, I have had to take a pay day loan for food, my phone bill hasnt been paid, I have no diesel to get to work tomorrow, my childcare has not been paid for this month as I have no money - the childminder now wants additional money to care for my son as he has a "disability" (she has to give him medication and sometimes get a taxi home from school with him as he is unable to walk) - she is not OFSTED registered but I really trust her and she has cared for him since he was 12 months old) I don't honestly know how much more I can cope with :( Furthermore, I am not entitled to tax credits, working tax credits, free school meals, etc etc as I apparently "earn to much" £37000 PA

I hope someone can offer a glimmer of hope

Thanks for reading this LONG thread!

Sunshine

Hi Sunshine,

I'm not an expert but I'll try my best given my personal experiences and my work in the social care sector.

Firstly, unfortunately the answer to how long it takes is 'how long is a piece of string?'. Not helpful, I know and I'm sorry but it can take a few months. It's early days for you, so I'd expect to wait another couple of weeks at least before you hear especially given the bank holidays.
This is what the guidance suggests in terms of time scales:

"DLA can’t be backdated. The date of your claim will usually be the date the form is received or the date you call the enquiry line (if you return the claim pack within 6 weeks). It usually takes 40 working days to deal with a DLA claim. The child may need an assessment to complete the application."

Once you've applied for DLA and if your son receives it, you may be eligible for Carers Allowance, although this is income dependent: www.gov.uk/carers-allowance/overview

The rules for support with housing can be convoluted. Unfortunately, if you are in arrears with rent (for whatever reason), it is considered 'intentional homelessness'. I appreciate that the wording is very thoughtless and unfair. However, you have a child with a disability and there is a duty to ensure children are not homeless. Have you contacted your local social services and seen what support is available from the children with disabilities team? I'd also highly advise you contact them for advice and the CAB for housing advice. Most areas have voluntary organisations that support with housing issues, so if you have a google, I'm sure you'll find some advice more specific to your area.

If you have any more questions, I'm happy to help, you can PM me if you want.

I have Rheumatoid Arthritis, I was diagnosed at the age of 21 and being in my twenties with RA is tough enough, so I can't imagine the challenges you and your son face.

All the best of luck!

Oh, I just remembered.......

For housing advice: www.shelter.org.uk/

For debt advice - you don't have to be Christian and these guys are very good: www.capuk.org/

Also for debt advice: www.stepchange.org/

Hi - don't know if this might hep but if you get DlA you aso get a higher rate of tax credits

Oh and I second CAP they're amazing

The whole situation sounds really hard. I'm afraid I have no advice or knowledge about DLA.

However my son also has JIA. The situation you describe with stiffness, inability to walk and needing to be carried was also the situation we were in when my son first developed arthritis. We actually ended up hiring a wheelchair. Since that initial flare up it has never been as bad. This is because he is on medication that properly manages the condition. We have had plenty of flare ups over the years but cortisone injections in the knees always relieve these. Most of the time you wouldn't know he had arthritis.

What medication is your son currently on?

It may be that you will receive medical help that negates the need for DLA. I really hope that this is the case, but appreciate it doesn't help with your current financial situation.

I hadn't even thought about the social work route as I had been advised they usually offer housing for the child only, it's a catch 22.

Shelter were amazing today so thank you. I will call about DLA on Monday to see if there is any update.

Do children with JIA even get DLA? Anyone have any experience?

Thanks for your response Candy x

Oooo do you have a community nurse ? Theres an emergency fund for parents of poorly children but you have to be registered - it's not means tested but can help with travel costs - rent arrears - or equiptment. Our nurse gave us the form. Have you not got a wheel chair rather than carrying him? Have you had an OT assessment of your current home - they can recommend the local authority re house you somewhere eith level access (regardeless of rent arrears.
Are you under a community peadiatrition as they should be organizing all these services for you & can write a really good report for your DLA forms to ensure you get the correct rate

Re your referral to GOSH can you ring and ask where it is at the moment? Or get your local paediatric consultant to write another letter? My son had JIA and he was 4.5 when diagnosed. He's now 6.2 and is in remission. His JiA was diagnosed within 6 weeks of dicking around in the local NHS system and local paed rhumys saying that it wasn't JIA.. Eventually the paed who saw us first (but is in fact an oncologist) said she suspected JiA and wrote a letter to gosh. We received a phone call on a Friday evening (2 days after the letter got sent) and we were admitted on Monday morning. For 2 weeks. Where they did lots of tests to eliminate everything else.

Started on pred, which didn't get the ESRs down enough so moved onto methotrexate which worked a treat. He was literally symptom-less since then. And the consultant has recently said he's in remission.

I hope you get seen ASAP. The team there is very good.

Sorry can't help with dla info.

Our DLA was pretty quick to come through - much less than 12 weeks btw they will backdate a bit but not sure how far.
We get the middle rate care & higher rate mobility (which we use for a car) it is paid 4 weekly - for the care we get just over £200 and for the Mobility I think it's about £250 (couldn't tell you exactly as it all goes to motorbility)