DLA child - low rate - autism - getting worse

Midnight_Tboy

Hi,

So I have a child, 15yrs old with autism, It took many years to get her officially diagnosed due to falling on deaf ears, about 3 or so years ago after it finally being sorted we then claimed and received DLA, at the low rate.

At the time, we were relieved it was sorted, and just grateful to have had it finalised (and not just knowing bad parents etc).  Over time of course, realised that people around us with less affected kids on mid and high rates

In the past year or 2 especially, it appears to us she has gotten much more difficult to look after due to her needs, so wonder, is there any point in attempting to contact them to say she is worse now to if it can be reassessed to perhaps get a higher amount? Or does this open up a long and impossible process again?

Also, she turns 16 in about 4months, and I believe from what I gather she then has to move onto PIP? But I'm not sure if thats a thing that happens as soon as she turns 16, or "some time later", in which case, would there be any point in trying for the sake of the 4+ months?

Thanks and help much appreciated

poppy12345

If you ring to report changes then they will send you DLA forms to fill in and return again. For PIP you should be contacted just after she reaches her 16th birthday, unless you live in Scotland. You will then need to start a claim for PIP.

Whether you report changes to her DLA now is entirely up to you. In the meantime you may want to start to have a read of the PIP criteria and descriptors to familiarise yourself with them. https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria#daily-living-activities

Richard1212

Wait till your daughter is 16. Then apply to DWP ( via the PIP New Claims Dept) to become your daughter's  "appointee"  and you will be interviewed to make sure you are the suitable person ( which you are). Then, as appointee you are responsible for all aspects of applying for PIP. It is quite common for parent/s of a young autistic person to become the appointee when the young person turns 16. Being appointee only makes you responsible for the person's benefit claims, not any other issues.

Over 100,000 autistic people in the country receive PIP and it can be a hefty amount, as much as £600+ per month. Of course, you will need to fill out all the forms and be patient with a DWP service which is pretty lousy from everything I've ever heard about it.
Make sure you have sound written medical evidence of the condition ( especially a consultant-----it may be worth your while seeing a specialist privately once for a diagnosis and written report).

It will involve hassle, time and determination but over 100,000 other autistic people have benefitted from PIP, no matter how many forms they had to fill out and no matter how much time it takes. I do hope your daughter's condition does not continue to get worse and I send both of you best wishes.

Savvy_Sue

That's all very sound advice, but on a more long-term level, please do start to think about whether your DD is likely to be able to live independently, and ensure that she gets the right kind of support / 16+ education to help her do that if it is a possibility - cooking, shopping, cleaning etc. And if that doesn't look likely, start investigating what options there are for supported accommodation in your area. 

Does she currently have a named Social Worker? It might be worth asking for a fresh assessment of her care needs (which may help you with the PIP forms), AND ask for a Carers Assessment for yourselves. 

Midnight_Tboy

Thanks all for the advice, I wont be going through the motions for trying to increase DLA, its likely not worth the time for the relatively short period of time, but I'll investigate re the appointee and other such aspects.  Yes re the long term level, she talks about wanting her independence having own place etc, hopefully she will be ready when that time comes, but it is something hard to see happening at this current point in time.  Hopefully that will change down the line as matures more

Thank you

beanielou

Remember that the key is up to date medical evidence.