Applying for DLA - 12 month old

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Hi all,

Just wondered whether I could get some advice/opinions.

DD is 12 months old, was diagnosed with scoliosis at her 20 week scan. She also has a six month development delay (she is currently only just doing things a 5/6 month old would do) and is currently being tested for genetic abnormalities. She is under physiotherapy and occupational therapy, is under St Thomas for her scoliosis, and under a senior paediatric consultant and community paediatric team to assess her diagnosis for her delay etc.

The OT suggested we could apply for DLA, as we need to provide special sensory equipment for her, we have been recommended for a Squiggles chair. I am also starting to struggle physically, whilst I work full time, I am main carer for her all other times (DP works long hours). Her physical delay means she cannot sit up unaided at all, so needs constant monitoring unless in her highchair. She is unable to hold a bottle of milk/water/juice, unable to feed herself. I am struggling to carry her myself, she is the size and weight of her age, but 50 per cent of the time still floppy, not holding her head properly etc, so like carrying a deadweight and that is taking a toll on me physically.

Mentally, she is a healthy, happy 12 month old, she is getting frustrated and no longer sleeps well (used to be a solid 12 hour a night sleeper), now I am up with her every hour through the night, as she wakes, wanting to move etc, but can't. Both myself and DP haven't slept through a whole night for the last 3 months.

So, what I am asking, would I be wasting my time at attempting to claim for any assistance in DLA? At 12 months old, will they not say she is just the same as any other child her age? Although we know she isn't, and I am physically exhausted. The therapists have said she will need longterm treatment, as in years, rather than weeks/months, regardless of diagnosis. We are struggling financially as it is, we don't have spare money to buy special sensory toys etc. My work are being great and letting me work from home around her medical appointments, which is great and gives me extra time with my elder DC, who are school age.

Many thanks for reading my waffle and any comments would be gratefully received.

OTM

You definitely should. Sounds like OT and specialists will back you up.

It's worth applying. Especially if you have supporting evidence (which you do). I think my twins got DLA from around 12 months old.

You have nothing to lose, put it that way.

Definitely apply -there is a section on the form for someone that knows your child to fill in -your OT sounds like a good person to ask

Thank you! Its not something I had thought of before, but I will definitely take a look, I know the form is lengthy, so with little spare time I'm sure it will take weeks to complete anyway.

I would definitely apply. You can have professionals write letters backing up your claim. The form asks for the amount of care day and night, so you could do a diary of things you do for your dd e.g. feeding, drinking, med as well as the constant watching. We were under a sleep clinic so had sleep logs to show night needs and care. I think you need to show 4/7 nights needing care.

I haven't used it myself, but cerebra has a good online guide (my dd has ds so I used the ds guidelines). Good luck.

Definitely apply, you will need the financial assistance (voice of experience here). Also apply to www.newlifecharity.co.uk they funded a man expensive piece of equipment we needed. There are various charities and organisations that can help you complete DLA forms as they are a minefield. Try your local Carers group, they'll point you in the right direction. Good luck

Yes, apply. I have lowest rate DLA for my daughter who has GDD following epilepsy, awarded at 18m old. They count any time spent doing therapy, attending appointments etc. I had the same thought filling in the form, that most of what I do for her I would also expect to do for a normal toddler, but think about all the stuff you do that is different and fill that in, even if for much of the form you are saying she meets age expectations. If she needs additional care at night you may well get middle or higher rate, and once she is three if you are having issues you can apply for a mobility component as well. The low rate is not a huge amount of money but it pays for my DD's appointments at Snowdrop and some additional activities each week, and we will get nursery funding at 2 yr old rather than 3. The only thing you have to lose is hours of your life filling in the form!

If you phone up and request an application form they back date payments to the date you phoned if DLA is awarded, and there is a generous amount of time allowed to get the form completed, plus the online version never saves properly anyway!

She is unable to hold a bottle of milk/water/juice, unable to feed herself. I am struggling to carry her myself, she is the size and weight of her age, but 50 per cent of the time still floppy, not holding her head properly etc, so like carrying a deadweight and that is taking a toll on me physically.

I'm a couple of years down the line with my son's developmental delays, and can really sympathise with this statement!

Make sure you focus on Dd's needs, rather than your own (struggling to carry her etc). Just be very very frank about how much help she needs above what a 12 month old would normally need. So, 30 mins a day holding her cup so she can drink, for example.

Lots of fantastic advice on here, thank you. So basically, this makes total sense, but just for clarity, the form needs to be completed around her needs, how long it takes to do things daily, as opposed to impact on me or family etc?

I think so. I remember questions asking "how long does this take?". They're not really interested about impact. It's whether what you are doing takes longer/ your childs needs are different than a NT child of the same age.

Mine twins had GDD so we had no diagnosis but we got the care rate (mid and high) and then the mobility at 3 because they weren't walking.