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.