Bury St Edmunds mum’s ‘forever baby’ inspires petition to help people with lifelong disabilities

A woman whose severely disabled daughter was asked to attend a benefits interview, despite being unable to talk, is campaigning for a national register for people with lifelong disabilities.

Danika Smith, 19, of Bury, has profound multi-complex disabilities which include spastic quadriplegic cerebral palsy and cortical blindness.

Her mother Donna, who is also her sole carer, thinks of her as ‘a forever baby’ because she has the mental age of a 0-3 months old baby. She also has no voluntary movement and is fed by a gastrostomy tube.

Despite this, last Monday Danika received a letter from the Department for Work and Pensions (DWP) asking her, as an Employment Support Allowance (ESA) claimant, to attend a work-focused interview.

Donna was shocked by the letter but had planned to take Danika to the appointment as the idea of watching an adviser try and discuss her work prospects ‘intrigued’ her.

“I would gladly have taken her just to see how farcical it is,” said Donna, whose decision to publish the DWP letter on Facebook saw common sense prevail, with the interview cancelled shortly after.

The 41-year-old, who prides herself on having a good sense of humour, said many people with severely disabled children and young people would likely have viewed the letter as ‘yet another slap in the face to an already difficult struggle’.

“And I know we’re not an isolated case,” she said.

A DWP spokesman said: “We have a process in place which should prevent letters such as these being issued. Unfortunately, on this occasion, the process was not followed correctly. We have apologised to Ms Smith and have instigated further training to prevent this happening again.”

Donna, who also has two sons, wants to see a national register set up for people with lifelong disabilities so anyone like Danika can smoothly transition to ESA without the need for assessment to check their ‘work capabilities’.

A petition she set up for this gathered almost 1,000 signatures within its first 24 hours.

“Well, the saying ‘change won’t change itself’ seems relevant,” said Donna of her new found role as a campaigner.

As Danika’s condition is life-limiting, Donna hopes to make the database her legacy.

Her petition says: “When a child is in receipt of Disability Living Allowance (DLA) - just before their 16th birthday, via prior arrangement, a representative from the DWP visits them at their home to assess their capability of handling their own finances.

“I believe, at this point, if it is obvious that the young person is not capable of such, their names should be entered onto a national database to show they’re not, and never will be, able to work so they can automatically qualify for the support group of ESA the minute they are no longer eligible for Child Benefit.

“This will mean cutting out needless assessments and calls to attend work-focussed interviews which not only is a waste of time when it is inevitable they will qualify for the support group, but also cuts down on the costs to the tax payer.”

To sign the petition, go to Make A National Database of People With Multi-Complex Disabilities for ESA Purposes on www.change.org