Our Journey from DLA to PIP: A Living Diary

Under the DWP benefits system for England and Wales, children receiving Disability Living Allowance (DLA) must transition to Personal Independence Payment (PIP) once they turn 16 - but it’s not automatic. The process begins months earlier, when the DWP invites a parent or guardian to become the young person’s official ‘appointee’. Alongside PIP, there’s also the option to apply for credits-only ESA, adding another layer to the journey.

This blog is a living diary of our experience navigating Andrew’s transition. It may span many months, and I’ll be updating it as we go - one step, one date, one decision at a time.

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Jump to end for most recent entry

3 Apr 2025 - Brown envelope time! Letter arrives from the DWP inviting me to apply to become Andrew's Appointee. This also gives me an opportunity to nominate a different bank account - something we’ve anticipated by setting up a basic current account with online access. Posted back on 7 Apr.

21 Jun 2025 - I've heard nothing, so I phone the DWP. It turns out that, in my excitement to provide the new details, I forgot to sign the actual form (my fault - the signature line is immediately below the building society roll number space, which wasn’t relevant, so I didn’t see it). I duly receive the form back, sign it, and post it off again

21 Jul 2025 - Still nothing, so I phone again. They've got my form and say they'll process it the next day. I wonder how long it would have taken if I hadn’t called.

23 Jul 2025 - DWP letter of 'New or existing appointment to act' received.

19 Aug 2025 - Andrew turned 16. 

19 Aug 2025 - I tried to advise Universal Credit via the Journal that Andrew is staying at school post-16. They don't want the information yet, and cannot retain it - "come back later".

20 Aug 2025 - On the HMRC online system, I confirm that Andrew is remaining at school post-16. HRMC would not accept this information before his birthday.

28 Aug 2025 - DWP letter ‘Your Disability Living Allowance is ending’ received. So the next day, I phone them up and start the process for claiming PIP. I'm told the forms can take up to four weeks to arrive, and that I should chase it if they haven’t come by then. I’m also cautioned that I’ll only have four weeks to complete and return the forms once they do arrive.

1 Sep 2025 - On the UC online system, I eventually find and complete the form to confirm Andrew is remaining at school post-16. It was really not obvious, you have to amend the child's record.

25 Sep 2025 - Okay, so it’s only been 3 weeks and 6 days, but nothing has arrived! I phone up - lesson learned: select option 2 for an ongoing application, not option 1 for a new claim (the latter is answered in seconds, the former took 20 minutes!). Apparently there’s been a “hiccup” on the system that prevented the forms from being sent out. This is resolved, and I’m given the two 4-week cautions again.

5 Oct 2025 - The PIP form has landed. It’s dated 25 September, giving me until 25 October to return it - though thanks to the postal service, we’ve already lost a week. Still, first impressions are cautiously optimistic. The form leans heavily on "Yes/No" questions and open narrative responses, which is a relief. I’m not being asked to tick a box declaring how disabled Andrew is for each task and then defend it in miniature essay form. I remember the DLA form vividly - scribbling in margins, spilling out of boxes - because Andrew simply didn’t fit their neat categories. It’s also reassuring to see the EHCP listed as a suggested supporting document. We don’t have much else. There’s been no follow-up from CAMHS since his autism diagnosis, and no further contact with Audiology since we concluded hearing aids weren’t the right fit. So the EHCP may have to do a lot of heavy lifting.

11 Oct 2025 - The PIP form is finally complete and back in the post today. For medical contacts, I’ve listed the GP who conducts his annual Learning Disability Health Checks, the school’s Special Needs Nursing service, and his disability Social Worker. For supporting documents, I’ve enclosed his EHCP - still technically current, though now three years old - alongside the most recent Annual Review paperwork. Each question on the form is paired with a typed supplementary sheet: an opening paragraph summarising his difficulties with the task, followed by a reference like “see additional sheet X, answer to Question Y.” It’s a tidy bundle now, with each answer clearly laid out. Typing everything out was definitely easier than trying to squeeze it into the paper form’s boxes. It does make you wonder: why is Universal Credit fully online, while PIP and other disability-related benefits still rely on paper forms? A small irony in the age of digital everything.

Anyway - form sent, fingers crossed. Now we wait. 

Fun Times - When sensory seekers grow up

When Andrew was much younger, it quickly became clear that he sits firmly at the sensory-seeking end of the spectrum. Loud music, flashing lights, fresh air, and hard textures were his comfort zone — not soft fluffiness or quiet corners. So we embraced it. His bedroom sparkled with disco lights, the lounge glowed with a bubble tube, and our ears adjusted to a symphony of noisy toys. I’m fairly sure he owns every VTech Toot-Toot car ever made — including two ‘Go Go’ cars from the USA and a German-singing forklift truck. Soft play was a regular fixture, and trampolining became a weekly ritual 

But small boys grow into bigger ones. And meeting their sensory needs becomes a more ambitious endeavour. Andrew, it turns out, is now an adrenaline junkie. 😎

These days, holidays are planned around theme parks and thrill-based activities. Last year, thanks to a Family Fund grant that allowed us to purchase a Merlin Pass, we camped near the Thames and pre-booked two visits to Thorpe Park and one to Legoland. By sheer luck, our second Thorpe Park trip coincided with the public launch of its newest hypercoaster, Hyperia. We showed Andrew’s disability pass to a staff member and were ushered into the accessibility queue - bypassing hundreds who’d been waiting since opening. Andrew? He loved every second. I think he ticked off every ride in the park that day.

So why am I writing this now? Because we’ve just returned from this year’s thrill-seeking adventure: ZipWorld in North Wales. We tackled the ziplines at Penrhyn Quarry (Titan 2) and Llechwedd (Velocity), and I can’t praise the staff enough. They were welcoming, thoughtful, and absolutely committed to making sure Andrew had the best possible experience. 

Of course, we may be making a rod for our own backs. As Andrew grows older and taller, his sensory appetite grows too. Meanwhile, we’re getting older - and theme park rides take a little longer to recover from. I hope we’ll stay fit and adventurous for many years yet, so we can keep sharing these experiences with him. But Andrew will outlive us, and one day we’ll need to find carers who are not only willing, but excited to take him on these kinds of outings.

Because for Andrew, sensory joy isn’t just a preference - it’s a lifeline.

Update #1 - Reforming Social Care for Disabled Children

This post follows up on Retrospective 1, where I described our long and painful journey trying to access respite and social care support for Andrew. Today, I want to reflect on a new development that - while too late for us - may offer hope to families coming up behind us.

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On 16 September 2025, the Law Commission published its final report on disabled children’s social care in England. It’s the most comprehensive review of this area since the Children Act 1989, and it doesn’t hold back: the current system is described as “bafflingly complex,” outdated, and often unfair.

The full summary is available here (PDF), but here are some of the key recommendations: 

• A modern legal framework that clearly defines disabled children’s rights to support.
• A new definition of disability, replacing archaic terms like “dumb” and “handicapped.” 
• National eligibility criteria to end the postcode lottery. 
• Mandatory assessments conducted by trained professionals, with dignity and proportionality.
• Support for parent carers and siblings, recognising the whole family’s needs.
• Better transition planning*, starting at age 14, to prepare for adulthood.
• Direct payments that are sufficient, not just “reasonable.”
• Statutory care plans for every eligible child, reviewed regularly. 

The government is not obliged to implement these recommendations. They must respond within six months, and give a final answer within a year. Historically, Law Commission proposals do influence legislation—but there’s no guarantee. It will depend on political will, budget priorities, and public pressure. 

Reading this report was bittersweet. So many of the issues it highlights - dismissive assessments, inconsistent thresholds, lack of carer support - were exactly what we faced. If these reforms had been in place when Andrew was younger: 

• We might have avoided the years of being told “he doesn’t meet criteria”. 
• Our family’s needs - including parents - might have been acknowledged. 
• Respite might have been offered as a right, not a battle. 
• Planning for adulthood could have started earlier, with less cliff-edge panic. 

If adopted, these changes could transform the landscape for disabled children and their families. They offer clarity, fairness, and a chance to be seen - not just assessed. I hope that parents reading this in 2026 or beyond will find themselves in a system that listens, supports, and adapts. 

 If you’re a parent, carer, or professional, I encourage you to read the summary and keep an eye on how the government responds. Reform is possible - but only if we keep telling our stories.

Retrospective #1 - Social Care, Children's Services and Respite

Let me start with a gentle warning: this is just our story. Access to social care - and especially respite - is a postcode lottery, and I send heartfelt solidarity to anyone currently navigating this maze.

Back in 2014, when Andrew was six, we first approached Manchester City Council (MCC) to ask for occasional respite. At that point, we’d spent six years in full-time care mode: no nights off, no weekends away, no family nearby to step in. Six years of sleeping with one ear open. Six years of caring for someone with the capacity (and bowel habits) of a wayward toddler. We were exhausted.

We underwent a needs assessment - at the time, MCC bundled it into a single “parent and child” review - and were promptly declined. The logic? We hadn’t had a nervous breakdown, so apparently we could cope. We appealed. We lodged a formal complaint. And in 2016, we took our case to the Local Government Ombudsman … and won.

That victory didn’t exactly win us popularity points with Children’s Services, but it did force MCC to reassess us properly. And lo and behold, they agreed we’d benefit from respite - not through their own services, mind you, but via a Direct Payment. The implication seemed to be: if we were savvy enough to take them to the LGO, we could probably manage our own care arrangements. Fair enough. They were right.

In 2017, we received our first payment and began working with Together Trust, a local charity. Slowly, Andrew got used to staying overnight at one of their houses, and we got a taste of what it meant to breathe again.

Since then, we’ve remained engaged with MCC Children’s Services, which means enduring their quarterly safeguarding visits. Yes, every three months a social worker comes to inspect our home - including Andrew’s bedroom - under legislation designed for children at risk. There are no safeguarding concerns, but the law doesn’t differentiate between disability support and child protection. So every three months, we smile politely while someone checks we haven’t installed chains, restraints, or a medieval rack. (That’s a joke. Mostly.)

Over the past eight years, we’ve swallowed our pride, accepted the bureaucracy, and welcomed a rotating cast of social workers - four or five so far, none of whom seem to stay long. The award has gradually increased, and thankfully the cost of respite hasn’t, so we now receive enough funding for one night of respite per month.

Why persist?

Because respite isn’t just about catching our breath. It’s about preparing Andrew for a future where he can thrive independently. We’re older parents; we won’t always be here. He needs to be comfortable waking in a different home, supported by different carers, managing his daily needs with dignity. That’s not just a luxury - it’s a life skill.

If there’s one thing this journey has taught us, it’s the power of persistence. We didn’t set out to be campaigners or legal challengers - we just knew that Andrew deserved better, and so did we. “No” wasn’t the end of the conversation; it was the beginning of a longer, harder one. If you’re in the thick of it now, know this: your voice matters. Keep asking. Keep challenging. Keep showing up. Because sometimes, the system only listens when you refuse to be quiet.

Oh my goodness, the blog is still live!

Well that was a little surprise - I thought about blogging or vlogging about Andrew's transition to adulthood and it's taken a few weeks to remember the name of the original blog - and it's still live (and my password still works!) But it's been almost ten years so where to start?

Andrew is still autistic. Still deaf. Still a double-spectrum child. But his diagnosis is now PMLD - profound and multiple learning disabilities - alongside autism and deafness. And he's just turned sixteen. Where have the years gone? (I blame Covid for stealing more than one year!)

I obviously need to catch you all up. So posts going forwards will be a mix of news and reflections from the last ten years, and updates on our progress towards adulthood. Things like navigating the move from DLA to PIP, does he need credits-only ESA, what about the annual learning disability health checks, accessing his Child Trust Fund, why do HMRC and DWP both need to know that he's staying in school ...

One thing I have learned during the last ten years is that, to successfully parent a child with special educational needs, you have to be very good at life admin. 

Shutting down this blog

Note from 2025: I’ve left this post as it was—written during a time of deep fatigue and quiet disappointment. It marked a pause, not a full stop. Nine years on, I’m revisiting this space with fresh purpose and a clearer sense of what connection can look like. If you’ve found your way here, welcome.

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Blogging hasn't really helped me to cope, and hasn't really achieved anything (for example, despite a direct mention in the NDCS Families magazine, I have not been contacted by any other parents if children who have both ASD and ANSD).

Bye bye.

I'll probably just leave the blog to fade away, I won't actively delete it. You never know.

Teeth! And an apology

This will have to be a quick post, with apologies for not blogging sooner.

We are still going through the mill with littl'un. Things are not as bad as in the previous blog, but he is still only sleeping fitfully and is awake from 4-5am onwards - which means we are not getting much sleep either. Daytimes are much calmer.

But we think we know the cause - teeth! At the end of week one, he lost his first baby tooth, and an adult tooth is coming through. He now has a second wobbler. Because he is so sensory seeking and is used to banging toys onto his teeth for input, we think he's distressed at the sensations he is now feeling.

Hearing .. but not listening

Most of the posts so far have revolved around our son's Autism, as this (coupled with learning delay) affects most of his behaviour. Time to talk about his deafness ...

Andrew has Auditory Neuropathy Spectrum Disorder. It means that the mechanics of his ears work, but his brain doesn't get the message. The breakdown can lie with the hairs of the cochlea, with the auditory nerve, and/or with the receptive areas of the brain; and in Andrew's case, it looks like the latter.

When he was still a baby - and we didn't really understand his hearing loss - it was positively useful that he was deaf. We could clean and hoover the house around him, and it wouldn't wake him from his baby sleep. We could have normal level conversations without having to 'shush' people. He could go to sleep anywhere and everywhere.

As he's grown up, it's become increasingly apparent that our son does have some hearing. He finds reassurance in listening to music, and is rarely seen without a musical toy clutched to his left ear. (When he gets fed up, he'll switch it to his right, but the hearing loss is greater on that side.) He'll go to sleep listening to tunes, and it's the first thing he wants when he wakes. It's as though the music can drown out or cut through the static created by his auditory neuropathy.

We've had one successful run of VRA (visual reinforcement audiometry) testing with the ever patient Dr Rachel Booth, which resulted in diagnosis of a sloping severe to profound loss of around 80dB. The testing is difficult. How on earth do you explain to an autistic child with the attention span of a flea, with a learning disability that means he still eats with fingers, that he is to indicate when he can hear a sound? He has no interest in puppets that dance in boxes - the successful testing involved a revolving orange light.

But the more we watch him with his musical toys, the more we are convinced that he has hearing in a wider range than testing suggests. It's as though he 'tunes in' to music - single tone testing wouldn't interest him as its not melodic. He can also hear when we speak to him, normally we do have to shout but sometimes he appears to hear even if we don't raise our voices. What he doesn't do is interpret our voices into words that have meaning - possibly again a sign of a brain injury rather than loss of hearing.

I attended the NDCS weekend about ANSD in 2014 but there - as online - I felt swamped by the suggestion that the solution is cochlea implantation. All I can find online are successful ANSD / CI stories, and never any negative ones; and yet I know they must exist. CI isn't appropriate for our son because if we cannot measure his hearing loss accurately now, how could we measure any improvement? Some of the best improvement stories I've heard about CI are about the non-implanted ear beginning to hear better, which makes me wonder about surgical alternatives. Stem cell treatment is in its infancy, and is a possibility for generating damaged nerves and brain cells.

Our son can hear, but cannot listen. I'm sure there must be therapies out there to help improve his listening, but they are probably designed around children with neuro-typical behaviour and not those with Autism and a learning difficulty. So we will continue to plough on, as parents, trying to encourage our son to listen by playing him different kinds of music ... Guns n Roses followed by Vivaldi ...

Things my son loves ...

Bit of a random blog this one, but I'm writing it to give some ideas on how to entertain your SEN child without necessarily spending a fortune - which I'm sure would help all of us!

Rubbish!

Our son loves texture and noise. He may not yet be able to construct model rockets out of old Fairy Liquid bottles, but this doesn't mean that everything simply gets thrown away. He adores empty milk bottles - rinsed so that they don't smell - with the lid screwed back on, they make a delightful  hollow noise when hit and when hit against things. Wooden coffee stirrers and ice-lolly sticks get tapped against his teeth. Egg boxes have a strange texture that he likes to stroke. Bubble wrap ... well, who doesn't like bubble wrap!

Musical Instruments

He's progressed from ELC style drums and tambourines, these don't make enough noise. So his drum is now a proper set of bongos purchased from Lidl; and he has a sleigh bell stick and maracas, all found in our local Charity Shop. These all seem rather more robust that the children's toy versions, the bongos are in their third year with no damage yet.

Sensory input

We haven't bought vibrating toys from any of the Special Needs suppliers - have you seen their prices?! So he has a vibrating cushtie cushion, a bluetooth pillow to play music while he sleeps, and two hand-held massage devices. We have recently retired his large bubble lamp, which came from a water features company (I think it was intended for office receptions!); but he still has the small bubble lamp that we sourced from Argos. A colourful spinning light-bulb came from Maplin, and ball lights from Ikea.

Holiday!

Apologies for not blogging for a couple of weeks, but we've been too busy - on holiday at Butlins Minehead!

We self-cater, which involves taking the entire contents of our house (or that's how it feels), transporting it a few hundred miles, and then trying to cram it into a tiny bungalow. But it's worth it to be able to feed Andrew when he is hungry, with food that is familiar. He doesn't appear to mind the change in location or bed, making him even more non-typically autistic. I'm still not convinced that his diagnosis is correct.

The highlights of this holiday for Andrew were the live shows. Not the Butlins Skyline gang, or those re-created childrens' television characters. This year he saw two production shows - Aladdin Rocks! and Scooby-Doo. And he thoroughly enjoyed both - laughing along, kicking his legs to the music, paying attention to the stage much longer than many of his toddler compatriots in the audience. He knew he was there to watch something, and watch he did. How much he understood, how much he heard (rather than felt), I'd love to know.

If only Butlins double beds were more comfortable ...

Everything bar the kitchen sink

As many parents of disabled children are aware, going on holiday is not easy. After working out where to go (will there be things my chjld can access? will they be overwhelmed? will they be bored?) and how to get there (it's not the 3 hour plane flight that's the problem, it's the 2 hour check-in and then passport control at the other end), you arrive at the issue of What To Take.

In some respects it would be easier to fly abroad - with maximum luggage allowances, you have to make the right decisions. When three of you are travelling down a motorway in a seven-seater car, the question is not so much what you take, more what do you leave behind.

And so, here I am, four days before departure, making lists ... and piles. Clean clothing, not to be worn before we go (admittedly that is aimed more at t'other half than our son). Swimming gear. Summer shoes (optimistically, seeing as summer has yet to grace our shores). Technology .. oh, the cables and plugs and adapters ... gone are the days of taking one camera and a stack of 10p's for the phone.

But we have to add other not-so-routine piles. The week's supply of his favourite food, in case the local supermarkets don't have that flavour. The reins, harness, a raincover for the disability buggy in case he refuses to walk if - sorry - when the heavens open. Medicines that we know he'll swallow. Familiar toys, especially the musical ones. New toys so that he gets a treat. Batteries and batteries and batteries and a screwdriver to get in to change them. Nappies, wipes, bibs, cloths.

Still, thar Blue Badge will mean we can park close by our accommodation to unload it all, right? Only if we leave home at stupid o'clock to arrive before all the other parents of disabled children who had the same idea of holidaying in term-time to beat the rush.

Maybe next year we'll just stay home!

Why blog?

Who are you?

I'm Mum to Andrew. Andrew was born in 2009, eleven weeks early, and weighing just 22oz (around 635g if you're younger than me!) I describe him as a "spectrum" child, not as an homage to the computer, but because he is diagnosed as being on two spectrums (spectra? Is that a word or just a Bond baddie?)

• Auditory Neuropathy Spectrum
• Autism Spectrum

From the reactions of medical professionals and the paucity of information on t'internet, this seems to be a rare combination here in the UK. Andrew is sensory-seeking rather than aversive; he is non-verbal but learning delays mean hasn't yet picked up sign language or symbols; and he has some hearing loss, but determining the extent is tricky when he doesn't understand the testing process.

Why blog?

Because Andrew can't.

No, seriously, why blog?

To let off steam.
To share ideas.
To spare my Facebook friends from my endless rambling.
To pose controversial thoughts in an environment I can control.

But mainly to get thoughts out of my head. Feel free to comment to do the same.