Mum forced into debt in fight to remain involved in disabled daughter’s care ITV NEWS

Mum forced into debt in fight to remain involved in disabled daughter’s care finally wins case
A mother forced into debt so she could fight in court to remain involved in her disabled daughter’s care has finally been granted permission to be her voice after a lengthy legal battle.
Ruby Parr was diagnosed with a rare chromosome disorder, Idic 15, at just six-months-old and has been given round-the-clock care from her mum Alison, a former nurse, ever since then.
But when she turned 18 decisions made about Ruby’s care automatically defaulted to the her care providers, which meant her mum would no longer be automatically consulted over her medical treatment and welfare.
To continue to be her voice Alison had to take a £5,000 loan to be able to afford a specialist solicitor, but the money ran out before she even made it to court – and instead, with rising fees, she was forced to represent herself, and Ruby, in front of a judge.
Now after months of legal battles Alison has finally been granted permission to continue to speak for her daughter, after a High Court judge ruled in her favour.
“Ruby is particularly fortunate to have been born into this family because of her mum’s undeniable persistence, dedication and determination to look after Ruby and give her the best possible life,” Mr Justice Poole said.
The case can only be reported after ITV Granada Reports asked for reporting restrictions, put in place to protect Ruby, to be lifted to be able to highlight her story.
“Stepping into that court room was a really daunting experience,” Alison said.
“I would just like to get to a point where I can just be a mum and not like having to do this fighting all the time and just feel safe that we’re supported.”
“It’s been really quite emotional, relieved, happy we’ve been successful with the deputyship and I feel that I can offer Ruby that little bit more security ad protection that we’ve been working so hard towards.
“Just relief.”
Alison had wanted Ruby to continue to live at home with her brothers regardless of her age, but care providers said they could not meet her needs there and she would have to move into residential care.
The move was delayed however due to a shortage of staff, so her mum copes alone.
“Ruby can have 30, 40 seizures a day, it’s a 24 hour job. It’s like having a newborn baby. I sleep when Ruby sleeps,” Alison said.
Alison initially made the application after Ruby, who has complex needs, was threatened with a fine by the NHS after the wrong box was ticked on a prescription.
The former A&E nurse said she was then asked to prove her daughter was disabled, or get Ruby to sign a letter giving her mum permission to respond for her.
She said the “assumption was made” Ruby could open a letter and read it – but because she couldn’t, she was fined.
The mum-of-three had to get help from Ruby’s school, a social worker and her MP to get the threat of a fine lifted.
Following that fight, and in the lead up to her daughter’s birthday, Alison applied for Court of Protection Deputyship to ensure she still had a say over Ruby’s complex health needs and welfare, but it was rejected as the teen had not yet turned 18.
Now, after a year-long legal battle, which saw Alison represent herself in court hearings, she is able to continue caring – and advocating – for her daughter.
“I tried really hard to not be in this position and to get transition, you know, as smooth as possible, but still I’m here now and I’m on my own and tired,” Alison said.
In granting the deputyship the Judge said: “I accept there are gaps and failures in the services and care of Ruby and her mum was best placed to be her voice, particularly in emergency situations.”
Ruby’s family is not alone, a petition from another mum, calling for a change in the law so that parents still have a voice when a disabled youngster enters adulthood, has amassed almost 19,000 signatures.
It calls for new legislation to allow parents or carers to retain parental responsibility when their disabled child turns 18, if the child lacks capacity and remains in the parent’s care.
That would remove the need for costly and unnecessary applications to the Court of Protection.
“I never thought she’d be 18, I never even thought I’d have to think about adulthood because I didn’t expect her to live this long,” Alison said.
“Ruby decides her own journey. She’s feisty, she’s strong, she’s determined. She’s a sassy young lady, and we’re just here to help her live her best life.”