Do you ever head off on a journey to somewhere, but you have no map, no idea what it is going to look like or how you get there?

I’m not talking about an exciting adventure where you get to be spontaneous, throw your head back and let the wind tussle your hair as you follow your feet to nowhere in particular (looks to the distance and sighs).

Motorway with several cars driving into a sunset horizon.No. I’m talking about that specific journey. You must get there on time. There are consequences if you don’t but…there is no map. There are no milestones. All you can see are narrow, undulating paths with few signposts and certainly no idea of whether this is a 15-minute walk or 3-day hike. Lack of information puffs up my lack of control.

Well, that is what parenting feels like right about now as my son transitions from DLA to PIP

From DLA to PIP

A couple of weeks ago, I received a letter stating my son’s DLA (disabled living allowance) benefit would change as he is turning 16 – fair enough.

I had another letter asking if he needed a representative to deal with his affairs – erm, yes.

The most recent letter came through saying DLA was now to stop and he might be eligible for a PIP (personal independence payment).

To claim for PIP though would not be automatic – why would it?

If he wanted to claim PIP, then I had to phone and set that up.

I couldn’t do it online.

It couldn’t be via email.

It had to be on the phone

Nearly an hour on the phone.

It took 25 just to get through and a further 20 to tell them my name and address about 50-billion times (hyperbole is a gift). Reiterating several times, I had the right to be his representative. Repeatedly accepting that if I didn’t do “X” then the benefit would stop. If I failed to reply in a timely manner, the benefit would stop. If they thought he wasn’t eligible, the benefit would stop. If he failed to go for an interview assessment (should it be arranged) the benefit would stop.

The tone used assumed I was trying to pull a fast one. The gentleman I spoke (was utterly bored with his job) and knew next to nothing about PIPs. What they were, how they were calculated, administered or interacted with Motability? He couldn’t help – he gave me another number to call (sigh).

It felt as though the DWP’s game plan for transferring DLA to PIP:

  1. Erect barriers
  2. Don’t trust individuals or families
  3. Throw people out of the system at the soonest opportunity

So, we’re off.

I’ve started on this road to ensure my son gets the support he requires. I don’t know when I will get the next form, how long it will take to complete or if there is anything else I will be required to do.

I’m not sure if he will be asked to be interviewed (part of me really hopes he is so I can just push his wheelchair from the door and see how far they get.)

I’m just hoping the system won’t let him down. Maybe it will all be fine…I kind of don’t have another choice. This process is just one of many other requests, processes, applications – steps into the unknown. All of which suck minutes from every precious day; phones, forms, emails and appointments.

It all leaves me feeling a bit sick with a clenched jaw, tight chest and racing mind.

The perfect ingredients for an enjoyable, carefree journey.

Does anyone have a map?

Have you been down this road?

Got any insights to share?