Tunbridge Wells gig to help parents who face losing control of autistic children’s future
by Andy Tong | 27th March 2019
AN EVENT called ‘Sing Out For Autism’ is being staged at The Forum in Tunbridge Wells on Sunday March 31 to raise awareness about Lasting Power of Attorney [LPA] and funding for local parents who are applying for it.
The concert is being organised by Athene Burdge, a behavioural analyst who works with people on the spectrum – and has two autistic children herself.
Her daughter Daniella will be taking part, along with local groups The Breretons, The Cockroaches and the TWUNTS ukulele band.
Despite being a professional in the field for more than a decade, Athene only found out recently that when her children reach the age of 18, the decision-making process about their future will be taken out of her hands.
She told the Times: “For any decisions relating to personal welfare and finances or health matters, a ‘best interests meeting’ will be held and a group of professionals, who often don’t know the person with autism very well, get to decide. This is very worrying for some parents and their children.”
If people with autism have the mental capacity to consent to a person acting on their behalf, they can appoint that person to do so, who can then apply for an LPA.
'A lot of people are aware of the LPAs when it comes to elderly people with dementia, but not for autistic children'
“But this can be a costly process and some parents of people with autism are not able to afford this, in addition to the rising costs of supporting that person,” says Athene.
“That’s why we’re putting on this event. We want to raise money to go towards parents like myself who want to get LPAs.”
Despite being an expert in the autistic field and behavioural analysis, she was unaware that her ability to make key decisions about the future of her son Aaron, 17, was about to be taken away from her.
“I’m constantly working with parents and services,” she said. “I was talking to a woman from social services about my son and she said, ‘you do realise that this will happen, don’t you?’
“A week or two after that, I attended a parent workshop, and more than three-quarters of the mothers and fathers were unaware of it.”
So why is this crucial component of care so little known? “It’s kind of all buried in various websites. Unless you know what to ask, you won’t find out. A lot of people are aware of the LPAs when it comes to elderly people with dementia, but not for autistic children.”
There are various reasons why carers do not pick up on the process. “Some are not aware because they are happy with the services they are getting so there is no contention at meetings.
“Or perhaps as the children grow older their carers don’t see so many other parents so they don’t find out about it. Sadly, some just give up so they don’t realise at all.”
Athene described a harrowing scenario which showed her how important it is to spread the word about LPAs.
“My son has recently experienced challenging behaviour, and my first port of call was a psychiatrist, who said he should be on anti-psychotic drugs. I said: ‘Absolutely not, we need to exhaust all behavioural measures first’.
“But social services said that when they have a best-interests meeting he will be put on them if there is a disagreement. It was a big shock to me.”
Parents are not ignored in such circumstances, but the experts hold the power where there may be a contention.
'You would be invited to the meeting and your opinion is valid, but others would have more sway'
“You would be invited to the meeting and your opinion is valid, but others would have more sway, for example a housing officer or a doctor.”
But applying for an LPA to avoid such conflict of interests is expensive. A visit to your home by a solicitor to test mental capacity can cost more than £700 (£630 plus £82 to the Office of the Public Guardian).
Athene says: “While ‘capacity’ is the ability to communicate, if it is non-verbal, like gestures or groans, then these may not be able to be verified, so they don’t count as capacity.
“If there are doubts about mental capacity, which is very likely in the case of people with autism, the parents either have to go to court or apply for a deputyship.”
To be appointed as a deputy, the fees are £800 for an application, £500 for court costs and £100 for an assessment, totalling £1,400.
Meanwhile, Daniella is preparing to perform on stage for the first time, at The Forum.
“She’s at Skinners’ Kent Academy and she wants to be an actress,” says Athene. “She is being trained by the actor Adam Leese at the school.”
“She recently watched Bohemian Rhapsody and fell in love with Freddie Mercury, so she will be singing three Queen songs.”
Sing Out For Autism is at The Forum on Sunday March 31 from 5.30-11pm. Tickets cost £15, including a raffle ticket, and are available through Athene’s website at autism-solutions-kent.co.uk/music-and-auction-charity-event