Parents are enduring cruel interrogations to prove their children's disability

WE let our daughter who can’t speak do the talking.

Most parents get to take their teenager to a prom or college interviews.

We’d been curtly invited for a benefits assessment as Elvi, 16, transferred from the child benefit system to the adult.
Not exactly a memorable rite of passage.

Elvi’s dad and I sat in a functional, grey office with all the atmosphere of a jail cell, and said nothing while an “expert” asked our severely disabled daughter questions she would never be able to answer.

“I see you use a wheelchair, can you push it yourself?”

Nothing.

“You go to a special needs school, do you like it?”

Tumbleweed.

A year before this appointment, an educational psychologist had assessed Elvi and told us she had the mental capacity of a one or two-year-old child.

Our silence was our way of illustrating this interview was a ridiculous waste of time and resources.

Elvi is pushed in a wheelchair. Her limbs are fragile and prone to breaking and she uses nappies. The cause is a rare genetic disorder, a form of dwarfism she has had since conception.

Elvi isn’t going to get better, she is only going to deteriorate.

Her condition means she will probably develop scoliosis, bending of the spine. Her organs will compress. We don’t know anyone with her condition who has lived past 25.

We accept she will never live independently, get married or have children. So it was with a sense of injustice we turned up for her appointment to reassess her and check our form-filling.

The underlying suggestion was we had lied on the 38-page document you fill in to be eligible for a Personal Independence Payment (PIP).PIP is a benefit for 16 to 64-year-olds that helps with the considerable extra costs of a long-term health condition or disability.

It is replacing Disability Living Allowance (DLA). Children under 16 receive DLA and the highest rate is £85 a week.

The money is Elvi’s not ours. We spend it on childcare through the long summer holidays — she can’t be left alone for one minute.

The 71 questions take hours to fill in and are phrased to challenge you to write the worst about your child.

List the stuff they can’t do — like walk or feed themselves — over and over again.

It goes against every parental instinct to list what your child can’t do rather than their small accomplishments like smiling or holding a pen.

This is on top of the forms required to qualify for a Blue parking badge or the monstrous Education Health and Care Plan paperwork required to gain the support your child is entitled to at school.

The onus is always on frazzled parents.

I am as against benefit scroungers as the next Sun reader. My heart throbs with anger when I read about some fraudster receiving PIP for back pain as they are filmed doing cartwheels on a beach.

Of course benefits should be checked to avoid blatant scams.

What is unnecessary and unjust is the assessing and re-assessing of children whose health will never improve. Children who are more likely to die than fiddle their DLA.

When I read about working mum Vikki MacDonald, 34, a self-employed bookseller and mum-of-three, starting a petition to change this system I was delighted. Her son Aidan is 11.

He was born with a damaged brain which will never repair. He has cerebral palsy and epilepsy.

Vikki, from Corby, Northants, started a petition on website change.org asking the Government to consider bestowing life-long benefits for conditions such as brain damage and some genetic disorders where the prognosis is that the child will not “recover”.

The petition has soared to more than 320,000 signatures. One signatory is Rosa Monckton, close friend of Princess Diana. Her daughter, Domenica, Diana’s goddaughter, has Down’s syndrome.

She says: “If you haven’t walked this path just pause for a moment and reflect . . . step into the shoes of a parent whose life is overwhelmed with form filling, with bureaucracy and with fighting for what should be automatically given to their child.

“A parent who is exhausted. A parent who loves their child with a raw passion.

“A parent who cannot remember what it is to have an uninterrupted night of sleep, even though their child is now a teenager. Please sign.”

This Government changed the benefit system that made it impossible for parents to claim for children who spent long stays in hospital — a system that meant they couldn’t leave work or other family members to care for their children.

Proof it can move against cruel bureaucracy when the will is there. According to the charity Together For Short Lives, there are 49,000 children and young people in the UK with a life-limiting or life-threatening condition.

Further research has estimated that there are around 55,000 adults aged 18-40 living with a life-limiting or life-threatening condition in England, of which almost 13,000 are in the 18-25 year-old age group.

More than 5,000 children die every year in England and Wales, about half of these die from long-term life-limiting or life-threatening conditions.

That’s 38 pages times 49,000 that need to be checked by civil servants paid for by tax payers – 1,862,000 pages.

The last government measurement of DLA fraud found it to be 0.5 per cent of the total benefits given out.

What are we achieving by putting parents living in these awful, traumatic circumstances, through gruelling form-filling and reassessment?