Money clawed back from disabled parents in Brighton and Hove

Families received less than a week’s notice that any sum greater than six weeks’ worth of “direct payments” would go back to the council for “redistribution”.

The Labour MP for Hove, Peter Kyle, said that he would raise the issue in Parliament after two families contacted him about the clawbacks.

They lost money that they had been saving to pay for personal assistants so that they could take their children on holiday.

Mr Kyle said: “The first thing to say is that the letter the families received about this was so impersonal it cut through me.

“This is a big deal for families. The removal of the money is one issue. The cold method of doing so is another.

“I join them by saying that the disabled are being called upon, time and time again, to make sacrifices ‘due to budget cuts’.

“It’s not acceptable and I’m taking this to the highest level of government.”

Peter Kyle MP has spoken out on the issue

The letters from the council were dated Saturday 15 October but families received their copies two weeks later. Each was the same except where children’s names and the sums of were money written in.

The letters said: “We know direct payments are really important in supporting families at home but we need to make the best use of all money available for direct payments and that his money is being distributed fairly, according to the needs and being used as agreed.

“The council is under financial pressure due to government cuts and it is our duty to ensure that money is being used in the most effective ways.”

The letter said that the money would go back into the budget to support families in need.

The chief executive of specialist Brighton charity Amaze, Sally Polanski, said that the Parent Carers’ Council (Pacc) was collecting feedback to pass on to the council – and that Pacc representatives were meeting council officials to discuss the situation.

Amaze provides information, advice and support to families of children and young people with special educational needs and disabilities.

She said: “This is a concern and the timing is particularly challenging, given the wider context of families being under immense pressure and the social care system struggling.”

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Three mothers, who asked not be identified, have spoken out about the clawbacks.

The first said that she was shocked to find the money that she had saved for a family holiday had been “plundered” after receiving a letter on Friday 28 October.

She built up the “surplus” – which was removed on Sunday 30 October – as she struggled to find a personal assistant for her son who cannot speak and has complex needs.

His money goes towards paying for a personal assistant, holiday clubs and after-school clubs when they are available.

All that was left after the council clawed back her son’s cash was a week and a half’s worth of payments – rather than the six weeks’ worth outlined in the letter.

She said: “Prior to the letter I received, I was never made aware of any rules regarding a six-week surplus.

“In fact, I have contacted our local Citizens Advice and they are trying to locate information on the website citing said surplus and have so far found nothing.

“Mine is not the only family to have been affected. Many, many families have reached out to Pacc and Amaze demanding an explanation.

“I have phoned my direct payment officer since Monday and, to date, I have received no reply.”

The council have faced criticism from families

Another mother whose daughter has autism, cannot speak, relies on a feeding tube and suffers from chronic lung disease said that she paid for nine hours of respite care a week but built up a surplus during the coronavirus lockdowns.

She said: “Instead of them saying, ‘use what’s built up,’ they steal it from us. I got the letter on 31 October saying the money would be taken that day.

“I’ve booked a holiday courtesy of the family fund and was hoping to take a personal assistant so I could take them out and do things with my son for quality time.

“I also want to use it for respite care as my daughter had a week off before half term and then half term. I could only get out twice when she had respite but I needed more as I can’t even go shopping.

“It’s given to our kids for a reason. I don’t think they should be able to take it. There are so many things it could be spent on.”

A third mother, who has three children, two of them with autistic and learning disabilities, built up a surplus in her son’s account as he was shielding during the pandemic.

After receiving the letter, she was left with £300. She said: “They said they were taking the rest away under the ruse that the money would be used to help other children which is a complete fabrication as far as I’m concerned.

“My son was allocated the money. Social care at the moment is not fit for purpose. We were told he could have monthly respite in July. Five months later, we are still waiting, yet they will not allow us to employ a personal assistant.”

Brighton and Hove City Council was approached for comment.

Amaze said that families in need of advice or support could contact its advice line at 01273 772289.