MOTHER'S FEAR
My daughter, 22, can’t shower or dress herself – but she wasn’t considered ‘disabled enough’ for help, system’s broken
Elvi has autism, that came with her underlying physical condition, rhizomelic chondrodysplasia punctata
ED Davey has spoken of the fear he has over who will love and hold his disabled son when he is no longer around.
Now Sam Carlisle – mum to 22-year-old Elvi – tell of her similar worries.
4
4
IT was the walk that pricked my tears. Lib Dem leader Ed Davey gently held his disabled son’s hands and guided him into their family kitchen for breakfast, the two beaming into each other’s faces.
That was a walk we do every day with my daughter Elvi, 22.
She can’t weight bear without support, so either she bum shuffles around the house or we have to hold her upright, gently guiding her.
The tears came watching the Lib Dems’ incredibly personal new film of Davey and his son John because you don’t see families like ours very often on the telly.
READ MORE FAB DAILY
To witness a former minister choosing to share his caring role publicly gave me an enormous sense of relief.
At last an MP was talking about the hidden work five million unpaid carers do day in, day out, and the support they desperately need.
Like John, 16, my Elvi has a rare genetic condition and learning disabilities and will need 24/7 support for life.
As with John, Elvi needs dressing, showering, personal care and lifting in and out of her wheelchair.
Most read in Fabulous
Sometimes Elvi can manage on three hours sleep a night and expects me to do the same.
That’s exhausting but I prop myself up on the sofa, fuelled by love and strong coffee, while she binges Christmas carols on YouTube, even in June.
Lib Dem Leader Sir Ed Davey talks movingly about caring for his Mum and young son in Westminster speech
She can’t change TV channels, though she demands to every two minutes, so we have to do it for her.
Her giggle is a balm that soothes my soul. When Elvi’s happy the whole world feels right but sometimes the pressure of looking after her can lead me to the brink, emotionally and physically. I’m 56 now, and the older I get, the harder it gets.
Elvi has autism, that came with her underlying physical condition, rhizomelic chondrodysplasia punctata.
It means she wants me with her all the time. Sometimes I can’t go to the toilet without her screaming for me. If she can’t make me understand her needs she starts banging her head against walls.
The services that are supposed to help us have long been broken.
For years, Elvi wasn’t considered “disabled enough” to qualify for the local authority’s children with disabilities team. We had to fight for everything. I know I am not alone.
Research from the Disabled Children’s Partnership found only one in seven parents said their disabled child had the correct level of help from social care.
Like me, three quarters had given up employment due to lack of support.
When Elvi’s happy the whole world feels right
Sam Carlisle
but sometimes the pressure of looking after her can lead me to the brink
Carer’s allowance, payable to you when the person you care for is on benefits, is just over £80 a week.
You qualify if you do more than 35 hours a week, but in reality carers can easily work 80 or 90 hours without a break. That’s less than £1 an hour.
That situation is unlikely to improve without drastic action because the average UK council now faces a £33million deficit by 2025.
It is local authorities who bear responsibility for social care for children and adults.
Davey was filmed for a Lib Dem election broadcast, clearly aimed at humanising him.
But in allowing cameras into his home, he has given a voice to the unpaid carers who put in the equivalent of £162billion of work hours per year.
That’s enough to fund a second NHS — a secret, under-valued, under-recognised and under-funded National Care Service looking after children, parents, husbands, wives and siblings out of love.
An army that is tired, ground down but uncomplaining.
Women make up 59 per cent of that army with one in five women aged between 55 and 59 caring for a loved one, according to Carers First.
Many have dual caring roles, looking after children as well as elderly parents.
My mum is at the end stage of Alzheimer’s, in a care home that costs £7,000 a month paid for from her savings.
I visit her weekly to feed her, brush her hair and chat to her about the grandkids she no longer recognises.
Although Ed Davey’s wife Emily is John’s main carer, sadly she has the degenerative condition multiple sclerosis which puts even more pressure on their family.
In an interview last week, Davey shed tears as he talked about the hardest part of the role — who will look after our cherished and vulnerable kids if anything happens to us?
He told ITV’s Rachel Younger: “One of my biggest fears in life is what happens to John when I’m gone? No one’s going to love him and hold him like my wife and I love him and hold him.”
It’s something I lie awake thinking about every night. We are lucky, Elvi attends a residential college in term time with staff looking after her who clearly care about her welfare.
4
They have the capacity to manage when she wakes up at 3am and wants to play music, or when her challenging behaviour gets serious and she needs specialist intervention.
At home it’s just us. Elvi’s brother, 17, is brilliant at spotting when I am at breaking point, deftly asking: “What can I do to help?”
Politicians have failed
Her stepdad walks miles with Elvi, pushing her wheelchair, to give me a chance to catch up on sleep.
When Elvi’s home, we spend weeks in a constant state of jet lag.
Like the majority of parents with disabled children, her dad and I divorced.
Elvi was little then but we share her care evenly and fight for her needs from authorities who are occasionally helpful, often uninterested and, frequently, positively obstructive.
Extended family members offer to help but I would only expect them to do a couple of hours at a time because it’s hard work.
Shamefully, nothing was mentioned about the crisis in the leaders’ TV debate. We need MPs to be brave and act
Sam Carlisle
Good Morning Britain presenter Kate Garraway highlighted the plight of carers in her brutally honest films about looking after her terminally-ill husband Derek Draper.
She spoke of the financial and emotional cost of caring, and the bureaucratic struggles.
It seemed we were finally ready for a grown-up conversation about the social care crisis.
4
Sadly politicians of all colours, except yellow, have failed to speak on the subject.
It’s strange as David Cameron lived this life with his son, Ivan.
Keir Starmer has a brother with learning disabilities and Angela Rayner has a disabled son.
I understand them choosing not to discuss their families but I don’t understand not addressing a subject they know.
Since Theresa May tried to tackle the issue in the 2017 election but U-turned, it’s been shoved in the “too hard” box.
In two weeks of election campaigning, Labour’s health and social care spokesperson, Wes Streeting, has barely mentioned anything to do with the second half of his title.
Tory Kemi Badenoch told Times Radio this week the Government’s plan was to continue as we are.
And, shamefully, nothing was mentioned about the crisis in the leaders’ TV debate. We need MPs to be brave and act.
As our population ages the need for social care will grow. There is currently a ten per cent vacancy rate in the paid care sector so we are relying even more heavily on families.
Elvi will leave college in July next year. I need her to move to a forever home but so far we have found no residential houses in London, where we live, that can support her needs.
READ MORE SUN STORIES
I want her near us so we can be with her as much as possible and frankly, check that she is safe.
I need to know that when I’m gone, my beautiful daughter is surrounded by well-paid, trusted carers in a nurturing home that her brother can visit, check up on her, make her giggle and listen to Christmas carols in June. Politicians, that’s up to you.
Give It Back
THE Sun’s Give It Back campaign is asking for the £573million gap in disabled children’s social care funding to be filled.
The initiative gives voice to families and children and was sparked by only four per cent of families with disabled children reporting receiving the support needed.
Topics