ED Davey spoke about the fear he has about who will love and hug his disabled son when he is no longer around.
Now Sam Carlisle – mother of 22-year-old Elvi – tells of her similar concerns.
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It was the walk that brought my tears. Lib Dem leader Ed Davey gently held his disabled son’s hands and guided him into the family kitchen for breakfast, the pair smiling at each other.
This was a trip we take every day with my daughter Elvi, 22 years old.
She can’t bear her weight without support, so she either drags herself around the house or we have to keep her upright, guiding her gently.
The tears came when watching the Lib Dems’ incredibly personal new film about Davey and his son John, because you don’t see families like ours very often on television.
Witnessing a former minister choosing to publicly share his caregiving role gave me an enormous sense of relief.
Finally, an MP spoke about the hidden work that five million unpaid carers do every day and the support they desperately need.
Like John, 16, my Elvi has a rare genetic condition and learning difficulties and will need 24/7 support for life.
As with John, Elvi needs dressing, bathing, personal care and getting in and out of a wheelchair.
Sometimes Elvi can sleep three hours a night and expects me to do the same.
This is tiring, but I lean on the sofa, fueled by love and strong coffee, while she sings Christmas songs on YouTube, still in June.
She can’t change the TV channel, even though she demands it every two minutes, so we have to do it for her.
Your laugh is a balm that soothes my soul. When Elvi is happy, the whole world feels right, but sometimes the pressure of caring for her can push me to the limit, emotionally and physically. I’m 56 now and the older I get, the harder it gets.
Elvi has autism, which accompanies her underlying physical condition, rhizomelic chondrodysplasia punctata.
That means she wants me with her all the time. Sometimes I can’t go to the bathroom without her screaming for me. If she can’t make me understand her needs, she starts banging her head against the walls.
The services that were supposed to help us have been broken for a long time.
For years, Elvi was not considered “disabled enough” to qualify for the local authority’s disabled children’s team. We had to fight for everything. I know I’m not alone.
Research by the Disabled Children’s Partnership found that just one in seven parents said their disabled child had the right level of social care help.
Like me, three-quarters left their jobs due to a lack of support.
When Elvi is happy, the whole world feels right
but sometimes the pressure of taking care of her can push me to the limitSam Carlisle
Carer’s allowance, paid to you when the person you care for is receiving benefits, is just over £80 a week.
You qualify if you work more than 35 hours a week, but in reality caregivers can easily work 80 or 90 hours without a break. That’s less than £1 per hour.
This situation is unlikely to improve without drastic measures, because the average UK council now faces a deficit of £33m by 2025.
It is local authorities who have responsibility for social care for children and adults.
Davey was filmed for a Lib Dem election broadcast, clearly with the aim of humanising him.
But by allowing cameras into his home, he gave a voice to unpaid carers who put in the equivalent of £162 billion worth of working hours a year.
This is enough to fund a second NHS – a secretive, undervalued, underrecognized and underfunded National Care Service that cares for children, parents, husbands, wives and siblings out of love.
A tired, oppressed, but uncomplaining army.
Women make up 59 percent of that army, with one in five women aged 55 to 59 caring for a loved one, according to Carers First.
Many have a dual care role, looking after their children and also their elderly parents.
My mother is in the final stages of Alzheimer’s, in a care home that costs £7,000 a month, paid for with her savings.
I visit her weekly to feed her, brush her hair and talk to her about the grandchildren she no longer recognizes.
Although Ed Davey’s wife, Emily, is John’s main carer, unfortunately she has the degenerative disease multiple sclerosis, which puts even more pressure on the family.
In an interview last week, Davey cried as he talked about the hardest part of the role – who will take care of our beloved, vulnerable children if something happens to us?
He told ITV’s Rachel Younger: “One of my biggest fears in life is what will happen to John when I’m gone? No one will love and hug him like my wife and I love and hug him.”
It’s something I lie awake thinking about every night. We’re lucky, Elvi attends a residential school during term time, with staff looking after her who clearly care about her wellbeing.
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They have the ability to manage when she wakes up at 3am and wants to play music, or when her challenging behavior becomes serious and she needs specialist intervention.
At home it’s just us. Elvi’s 17-year-old brother is brilliant at sensing when I’m at my wits’ end, deftly asking, “What can I do to help?”
Politicians failed
Her stepfather walks miles with Elvi, pushing her wheelchair, to give me a chance to catch up on sleep.
When Elvi is home, we spend weeks in a constant state of jet lag.
Like most parents with disabled children, her father and I divorced.
Elvi was little at the time, but we shared her care evenly and fought for her needs with authorities who were occasionally helpful, often disinterested, and often positively obstructive.
Other family members offer to help, but I would expect them to only do a few hours at a time because it is hard work.
Shamefully, nothing was mentioned about the crisis in the leaders’ televised 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 caring for her terminally ill husband Derek Draper.
She spoke of the financial and emotional cost of care and bureaucratic struggles.
It felt like we were finally ready for a grown-up conversation about the social care crisis.
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Unfortunately, politicians of all colors, except the yellow ones, did not talk about the issue.
It’s strange how David Cameron lived this life with his son, Ivan.
Keir Starmer has a brother with learning difficulties and Angela Rayner has a disabled son.
I understand that they choose not to talk about their families, but I don’t understand not addressing a subject they know about.
Since Theresa May tried to address the issue in the 2017 election but did a U-turn, the issue has been pushed into the “too difficult” box.
Two weeks into the election campaign, the Labor Party’s health and social care spokesman, Wes Streeting, has barely mentioned anything to do with the second half of his title.
Tory Kemi Badenoch told the 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’ televised debate. We need MPs to be brave and act.
As our population ages, the need for social assistance will increase. There is currently a ten percent vacancy rate in the paid care sector, so we are even more dependent on families.
Elvi will leave college in July next year. I need her to move into a forever home, but so far we haven’t found any residential housing in London, where we live, that can support her needs.
I want her close to us so we can be with her as much as possible and, frankly, make sure she’s safe.
I need to know that when I leave, my beautiful daughter will be surrounded by well-paid, trustworthy caregivers, in a warm home that her brother can visit, check on her, make her laugh, and listen to Christmas carols in June. Politicians, that’s up to you.
Give it back
THE Sun’s Give It Back campaign is calling for the £573 million gap in social care funding for disabled children to be filled.
The initiative gives families and children a voice and was triggered by just four percent of families with disabled children who reported receiving the necessary support.
This story originally appeared on The-sun.com read the full story
