SEND families fear respite care in Birmingham is to be cut

Sylvia Stanway and her 16-year-old son Alexander are both autistic

Families of children with disabilities and complex needs are fearful they will get less respite care.

Birmingham Children's Trust is carrying out a review of short break packages available to more than 450 children.

The service provides activities to encourage independence and allows parents and carers a period of rest.

The trust said the reviews were every six months in line with legislation and it ensured support remained "flexible to best meet the child's needs".

Sylvia Stanway's 16-year-old son Alexander is autistic and has ADHD. She receives about six days a month of short breaks but said the review process had left them stressed and traumatised.

Ms Stanway is also autistic and said she had to fight tooth and nail to get her respite package.

"We were assessed for eight to 10 days by their own assessors and they ignored that and put it down to four.

"We negotiated it, but with six days I've just had my nose above water," the mother said.

'Collaborative care'

"The respite carers we have are phenomenal, they come from an agency. Children like Alexander need bespoke packages, if it's not person-centred and collaborative care it doesn't work."

Birmingham Children's Trust told the BBC that, by the end of February, reviews had taken place for 56 families.

In 16 cases, short breaks were reduced, two families saw increases in their allocation while 31 saw no change.

Respite was withdrawn completely in seven cases, including where children had moved into adult social care, or had died, the trust said.

"We believe that the process that we now have in place is far more equitable and fairer, said Jenny Turnross, the trust's director of practice.

"We know there are families out there who require more support than they currently get, so it's important that we have a holistic assessment that's fully informed by the child, their family and the professionals working with them," she added.

Sabiha Aziz, who runs an independent Birmingham Parent Carer forum, said there was a lack of transparency within the system

But dozens of parents have contacted the independent Birmingham Parent Carer forum to raise concerns about the ongoing review process.

"Families are telling us they are having their support reduced or removed completely, and there's a real lack of empathy and transparency," said Sabiha Aziz, the forum's chair.

"Some are also saying that this information is being relayed to them before the review has taken place which is extremely concerning because it should be the other way around - families say they're being pushed into crisis.

"There's a real risk here that somebody might come to harm or harm their young person because they are simply overwhelmed by the amount they're having to manage with the removal of vital support and respite," Ms Aziz said.

Marley's children are autistic and have behavioural problems.

She receives special breaks, giving her respite for about seven nights a month.

However, she told the BBC she was told it would be reduced before the review's formal conclusion.

'Tired of fighting'

"I've had so many different social workers. They would do their assessment and then say 'you don't meet the threshold'.

"It's like humanity died, I wish I could show you my insides of my brain or my soul of how tired I am of fighting this so-called system," she said.

Birmingham Children's Trust said there should never be a conversation about an outcome at the beginning of the process and a formal decision was made after a holistic review which considered information from "everybody involved in the child's life".

Ms Turnross urged families to contact them and discuss their needs

In May 2021, Birmingham City Council was given a joint reinspection by Ofsted and the Care Quality Commission.

Inspectors found children and young people with SEND and their families "cannot consistently access high-quality SEND provision nor achieve ambitious outcomes".

"At the moment, this is too hit-and-miss," they added.

Ofsted has since carried out a recent inspection of the trust's wider work with the outcome expected in the coming weeks, the BBC understands.

Last year, Ms Stanway was awarded £500 after the Local Government and Social Care Ombudsman found her complaint about her teenage son's care had been incorrectly handled.

Alexander's mother said care packages only worked if there was "collaborative care" involved

"It's been like wading through treacle with firebombs thrown at my head dealing with Birmingham Children's Trust.

"My perception is I've been gaslighted. There are no safeguarding concerns for my family but I felt if I didn't have quality professionals around me I would have been at risk of certain accusations and judgments to me as a parent," she said.

The Birmingham Children's Trust said a new appeals process for families had since been put in place and urged families to contact them to discuss their short breaks.

"Please come and talk to us. We want to listen, we want to make sure that you and your children are fully supported. We know that it can be really difficult looking after your children, that's why we are here to work with you," Ms Turnross said.