DLA

[Bunnysarah]

Ive recently made a claim for dla. My child is only one and would like advice on liklihood of an award.
He has hypotonia, very delayed, feeding difficulties and has been diagnosed with kabuki syndrome.

Hi OP - I don’t have recent experience (my DD is 8), but we were awarded high-rate DLA for her from the age of 3 months. She had was very delayed, had hypotonia and feeding difficulties (was tube fed).

It goes on care needs compared to age..

Can i ask how she is now?

Really it depends on what her needs are compared to a 1 year old without additional needs. 1 year olds require a lot of input still so it might be difficult. We were awarded middle rate until age 12, but not until our daughter was 3 and on the third time of asking. Because prior to that her level of dependence wasn't different enough to another 2 year olds

Sorry his needs

The chance of an award very much depends on how “good” you are at filling in the forms.

With a genetic disorder, and lots of supporting evidence the chance of an award is good. However it’s not the diagnosis that gets your child an award, it’s the demonstration of how their needs are significantly higher than a child of their age without their diagnosis/condition/disorder.

My DD has had higher rate since 3 months old, her needs are complex and there were medical issues too. But I got very good at doing the horrendous forms as I knew what they needed to know about.

A friend whose daughter has the same condition as mine was declined the first time. When I saw her application I could see why - she just hadn’t given enough information and hadn’t repeatedly stated how her child’s needs were so different to a “normal” baby (for want of a better word).

Good luck, and I hope your little one is doing well 🙂

There are really good guides online for filling out the DLA forms. You definitely have to harp on and on about care needs, and explain in minute detail how long things take to do. Eg if tube fed, explain every step of prepping to clearing up, how long it takes, and how many times a day you do it. Then repeat that for every single care that you do. It's soul destroying, but it will mean that you are more likely to get an award in the end.

The Cerebra guide is the one I used for my child with ASD.

@Bunnysarah My DD is doing great now. She didn’t sit unsupported until she was well over 1, or walk until she was 4, but you wouldn’t know it now.
She made up for her slow start with feeding and is a very enthusiastic eater!
She has Down’s syndrome, as well as ASD and ADHD, so had a lot of medical stuff going on in her first year, but is now a bouncing great girl with a zest for life and a lot to say for herself!

I know you’ve already applied for DLA, but if you get knocked back, I’d strongly recommend getting some help with the form. Our disability health visitor filled in the first one, and where we live now, our local Mencap branch helps with forms.
As a PP mentioned, the Cerebra guide is great. It’s also a good idea to keep a copy of your completed form - makes things a lot easier next time around.

As with PP, ask a charity for help with filling in the forms. Locally, we have DIAL. It took them/me 4 hours the first time.

Thats really good! Isaac was one last week. He can roll over put thats abit it. I am syringe feeding his milks every three hours day and night. His hypotonia is quite bad so he is still in our room. He gets about 3 hours sleep at night. 😫😫😫

I am syringe feeding him every 3 hours. Day and night. He couldnt tolerate an NG tube so we are waiting for a Gtube but the wait is quite long.
His hypotonia is quite bad so he is still in my room. He gets about 3 hours sleep anight as his sleep is quite disturbed.
He has physio, dietician speech and language a disability group he attends, neurology and pediatrician so he has between 2 and 3 appointments per week. All this is in the form its just a waiting game.

The feeding sounds really tough. You should get higher-rate DLA because he needs so much extra care at night.

Hey @Bunnysarah did your son get awarded in the end?