When Your Disabled Child Turns 19: Falling Through the Cracks of Universal Credit by Kath

I will start at the beginning. In July 2025, my son turned 19. He finished high school at the end of June and was due to start college in September. Up until then, I had been receiving child benefit and had some follow-on day placement support for when he was off college. Apart from 2.5 nights of overnight respite a month, this was my only real break. I am not complaining, I love spending time with my son, but caring is still a full-time responsibility.

At the end of July, my son needed a new prescription for his usual sleep medication. With no warning or information, I got a phone call from the pharmacy telling me that now he was 19, I had to pay for his medication. I paid on that occasion, but then we had a dentist appointment, a GP appointment, and more costs. It was only when a friend told me that I could apply for an HC2 certificate because I am on Universal Credit that I realised I did not actually have to be paying all these NHS costs.

No one told me this. I had to find out through someone else.

This was the start of what I feel is discrimination against families with young disabled adults and their carers.

I received a message saying I was losing the child element from my Universal Credit at the end of August, but I was not even allowed to apply for my son’s own Universal Credit until September. I asked questions and tried to get more information, but I was told those are the rules.

I was told I would have to wait for home visits and assessments, and that changing circumstances on my own claim was complicated. He is still my dependent because he is disabled, but I was made to remove him from my claim like he was a stranger.

The lack of support and information was unacceptable. I was repeatedly told I would lose all my money, but no one would properly help me. Eventually one person on the phone did help me fill out the forms.

What they did not tell me was that it was not just the child element I was losing, it was the disabled element too.

The disabled element is now called Limited Capability for Work and Work-Related Activity, and you have to fight for it. You need sick notes, forms, and months of waiting.

A letter from a doctor is not accepted, but they do not tell you that. You only find out after being rejected.

It also makes no difference that my son is on full high rate PIP and has a blue badge.

It took until December for my son to receive the assessment form. I have filled it in and now we wait to see whether someone will come and decide if he is fit to work.

My son is autistic with limited speech and learning disabilities, but still we wait.

Another thing they do not tell you is that before your child turns 19, you are allowed to earn a certain amount before deductions. Once they turn 19, that disappears.

Now for every one pound I earn, Universal Credit takes 55p.

So as a carer, my Carer’s Allowance is deducted, I lose the work allowance, Universal Credit takes 55p of every pound I earn, and even part of the carer element is deducted.

I was told but you get the carer element by an advisor, but they did not seem to understand that this is also deducted. So how exactly is a carer better off.

As a single parent and carer, I do not get many opportunities to work. My son’s needs come first. I am expected to survive on around 400 pounds single person Universal Credit and 201 pounds carer element, minus 360 pounds Carer’s Allowance deduction.

I still have to pay my mortgage and bills.

If I find work to help us survive, I lose more than half of what I earn. That is not support, that is punishment.

The council also tried to charge us full council tax. Thankfully after I provided the right information they corrected it, but again I had to fight for it.

My son now pays around 75 pounds per month for transport to college, and he only goes three days a week.

We were also told there is no real mortgage help. If you apply, the government puts a charge on your house and takes it back with interest when you sell. Yet if you rent, your landlord gets their rent covered. My mortgage is far less than most rents, so why are carers not supported.

Carer’s Allowance and Universal Credit do not communicate. You have to inform both separately. If you make a mistake, you are overpaid. If you go one penny over the earnings limit in a week, you lose your entire Carer’s Allowance.

But Universal Credit already deducts it anyway. So if I pay it back, should Universal Credit not refund it too.

Why are carers constantly trapped in loopholes we are expected to navigate alone.

Caring did not stop because my son turned 19.

But the support did.

I feel the system is discriminatory. Not intentionally perhaps, but in practice absolutely.

All I am asking for is fairness.

I am trying to make sure my son is properly cared for. That also means I need to stay healthy and financially stable myself. You cannot love someone, care for them full time, and survive if you cannot pay the bills, feed yourselves, or keep a roof over your heads.

My son deserves a life around his disability. And I, as his carer, need to be supported to help him live it.