Rae looks to the future after funding fight

A mother and daughter say they hope others don’t have to go through the same fight to fund disability care as they did.

Rae White is looking for further independence as she’s about to turn 18.

She has type two Spinal Muscular Atrophy (SMA) a condition that slowly stops her body functioning.

Her mum Tanya has been her full time carer but now Rae is officially becoming an adult and entitled to care to help her live independently.

However, the pair say they’ve had to fight to get a solution as neither Lincolnshire County Council’s adult social care, nor the Lincolnshire Integrated Care Board (ICB), wanted to fund Rae’s care.

Finally, last week, after seven months of being passed between the two organisations, the pair have been given a satisfactory settlement which will allow Rae to get round the clock care and live next door to her current home at Gedney Hill.

“We’ve been left in limbo for so long it’s taken something away from what should be a celebration of Rae turning 18,” said single parent Tanya also works part time.

The 52-year-old has health issues herself now including five herniated discs in her back.

“They carry out a Decision Support Tool, which is like a tick box form that’s complicated as Rae just doesn’t fall into set categories,” she continued. “There was lots of to-ing and fro-ing over whether things were a health or social need and no-one could agree.

“They didn’t talk to the professionals we speak to regularly.

“All we’ve had since December is one service blaming the other.

“They don’t work together; they work against each other.

“They don’t work with the idea that this is for the caring of a young adult who wants to live independently. You have to fight for everything.

“They can no longer bully me and say I have parental responsibility, and I have to provide the care. They have to do it so adults can live independently.

“We just want to be mother and daughter.”

The settlement on care finally came after an independent arbitration.

Rae is currently studying A-Levels and would like to work in accounting or banking in future. The Voice published an article with her in 2019 when she was fighting to access to drugs to slow her debilitating condition. She says getting those made a big difference, but she has lost ‘most’ of her muscles and now struggles to use her arms unaided.

“I can’t fathom what it would be like to live independently because I’ve never had that option before, or at least trying to be as independent as I can” Rae said. “It was terrifying not knowing what would happen.

“It was like walking on eggshells constantly, waiting for the penny to drop with health services what support is needed.

“My future is decided by people who don’t know my name who I’ll never meet and who I’m more of a number to.

“I’m really lucky to have a mum who is like a dog with a bone for this issue because there are so many families that don’t know what their rights are or how to say no.”

Both the ICB and LCC said they ‘understand that the transition from children to adult services can be difficult for young people and their families’.

An ICB spokesman said: “An assessment took place at the end of last year, to establish care needs, and we are working with the local authority to arrange a package of care to meet them.

“We will continue to follow due process to ensure the care and support needs are met, this has been done in conjunction with the family.”

Martin Samuels, executive director for LCC adult care and community wellbeing, said: “We are working closely with Rae and her family to understand their adult care needs. The family will be given time to consider the options available to them, after which we will be able to ensure the right support is in place for them moving forward.”

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