Worried about DLA to PIP (Autism)

[Tobythecat]

I have autism, depression and anxiety and have been on DLA/ESA since I was 16 (I am 27). I moved out of my parents 6 months ago and am struggling financially. I use all of my DLA (172 a month) to cover the shortfall of my rent as I'm on shared accomodation rate housing benefit which is 228 a month. My rent costs 400 a month.

I am really struggling financially and after working out all my expenses, I have -100 left a month. I spend around £70 a month for my bus pass and for my art class. I meet my mentor in town every week and attend two support groups.

When I started on DLA at 16 I was agoraphobic and never left the house alone. This changed 2 years ago when I started getting the bus to my support group. I've also come to realise since being out and about how my autism effects me, whereas I didn't know before as I was housebound.

I get lost easily and can't seem to navigate my way around (unless its a very simple route such as the local corner shop or in a supermarket as it just has 12 or so aisles all in a rectangle shape which I can navigate). I also get visual and sensory overload so I struggle to cross roads, be around groups, process information/conversations etc. If I get very overloaded I feel very depressed and suicidal.

Due to the overload of colours, lights, sounds, people, navigating my way around, I'm always in a state of derealisation (feeling detached from surroundings) which is a really disturbing feeling and i worry if i try to cross the road I might get run over due to being disassociated.

I desperately need new bras as the ones I've got are falling to bits - but I never have any money to buy any. I only wear loose fitted dresses and Asda cardigans due to sensory issues which I usually buy off ebay. I've worn the same 7 outfits over 2 years so many times they look a bit scruffy now. I did buy 4 summer dresses off ebay but I don't think they will be suitable to wear when the weather starts to get colder.

I wanted to know if I should apply to PIP now or wait for the letter from PIP? Even if I am lucky to get the lowest rate of mobility, it will be £100 more than I'm on now and I won't be struggling so much.

If so, who shall I contact to help me fill in the PIP forms? It needs to be someone who knows a bit about autism. I'm not sure if CAB would be suitable?

I'm really sad that this is my life. I hoped to have a career, a relationship and to have children but it's very unlikely I will be able to cope with those things, realistically. I've started to accept that, but it hurts so much I feel guilty that I've never had a job or payed into the system.

I feel guilty that I've never had a job or payed into the system

It's easy for me to say, but please don't feel guilty. You're entitled to DLA, you have every right to be claiming it. It sounds like you've made massive progress in the last few years too, which isn't easy (I know from personal experience).
Could you phone the Citizens advice? They'd know better than me (I've never applied for PIP because I'm too intimidated by it all) and be able to offer constructive, practical advice.
I hope someone else with more knowledge than me comes along soon!

The advice is to wait until you get the letter to switch to PIP but no harm in calling. Contact NAS who can put you in touch with a local branch support group who can help with the form. Also suggest asking your support worker if you are entitled to a free bus pass. Good luck xx

I have a relative with autism and anxiety who gets higher rate mobility because he can only get the bus on familiar routes and would have difficulty undertaking a different journey. It didn't seem a big sticking point for them - he even double checked it was right and they said yes. Hope you get the support you need xx

Could you contact DLA and tell them that your circumstances have changed and that you are worse and would like to be reassessed? That might force their arm in that they may just send you a PIP form instead of a new set of DLA forms? Do you not have a social worker or support worker? They would be the obvious people to help with the forms.I really feel for you OP and definitely get help with the forms as there is certainly a "right" way to fill them in. Do you have a welfare rights place near you - they can check that you are getting all you're entitled to as I'm sure that DLA is meant to help pay for things associated with your disabilities[ such as taxis if you can't cope with public transport] not have to be used to keep a roof over your head. Good luck OP , I really hope you get sorted out and your life gets better. Sending hugs.x

Hi...Your post got to me as part of a daily roundup I get bout autism and learning disabilities. You might find these organisations helpful: www.disabilityrightsuk.org
www.facebook.com/pg/learningdisabilityengland/about/?ref=page_internal
www.facebook.com/pg/disabilitygrantsorg/about/?ref=page_internal

This is our FB page just out of interest
www.facebook.com/allianceforcamphill/

Good luck

Hi I would suggest applying for discretionary housing payments from your local council. They will atleast consider bumping you up to the one bed rate then more if your rent is higher than the one bed rate.

Thank you so much to everyone who gave advice. I'm going to ring CAB and the benefits line to see what they suggest. I will let you know the outcome.

I don't think you should write off your future completely. You may be perfectly capable of working in the future. It would be very easy in your position- of never working- to simply be in the mindset that you can't.

There are some charities that help autistic people get into work- I'm guessing you are highly functioning since you live alone and write perfectly well. Would you be willing to do ironing at home? There are companies that outsource this or if you can type well you can get dictating work- from home and no interactions needed other than over a pc. Won't make you rich but might give you confidence and you sound like you do want to earn your own money.

I believe (please someone correct me if I'm wrong) that if you call off your own back, and not wait to be invited, there may be a risk of them stopping your DLA- whereas, if you wait, they will pay your DLA until your PIP decision is made.

Here to handhold- I've just been through the process myself, and if I can be of any help, just yell.

I claim PIP and ESA for mental health and other conditions, PIP is very evidence based, so any input you get from MH, care plan, etc would be useful as well as psych letters, they also use your stuff from DLA. HTH a little.

Lovely has a point: if you want to do something pragmatic, start gathering evidence.

I knew it was coming. So I made sure my optician's notes were up to date, etc. They photographed my blind card, a short report from the opticians', and noted all of my meds (asthma inhalers and, for some random reason, the hayfever pills and cold capsules I had taken that day!) If you're well prepared before you get the letter, it may set your mind at rest slightly.

In case you don't realise, if you get even the low rate for the mobility element for DLA you're entitled to a free bus pass. This also gives free travel to one other person to accompany you, should you need that. My grandson has autism and gets this.

Yes, evidence is the key with PIP, it can even mean in some rare cases they don't do a F2F (most do with PIP). As an example a friend's son recently transferred on paper alone to top rates, however he has severe autism, other MH such as depression and a physical disability as well.

What DH and I did was to keep a couple of card folders, one for PIP and another for ESA. and just keep the medical stuff copied in there ready. That helped.

It also helped with the feeling of 'doing something'

You can look at the criteria online also.