By Mencap
My name is Mary. I'm 67 and for over 30 years I have been a full-time carer for my adult daughter, Nimali, 41.
Nimali has a
learning disability
A learning disability is to do with the way someone's brain works. It makes it harder for someone to learn, understand or do things.
and undiagnosed
autism
Autism is a disability. Autistic people find it difficult to understand what other people think and feel. They also find it difficult to tell people what they think and feel. Everyone with autism is different.
. She is highly vulnerable.
In February 2022, we received a letter out of the blue from the council informing us that a new charge of £84 a month was going to apply to our family, despite us never having paid for our daughter’s social care package before.
As two pensioners with very little financial support, these charges are simply unaffordable for us, and have caused us to lie awake at night ever since they came in.
I was obviously distressed when I first heard what was happening, and when I called the council to query the charges I was told the extra costs were to pay ‘social care contributions’ and that I ‘shouldn’t have expected [Nimali’s care] to be free forever.’
Nimali’s current social care package is minimal. It covers just two days at a support centre, paid out of her disability benefit allowance. Attending the centre is Nimali’s only meaningful social interaction outside of our home. Although she struggles to make friends, she enjoys doing Pilates, dancing and art projects. It also gives us some much-needed
respite
Respite is when a person goes somewhere for a few hours or days to have a break. People with a learning disability can have respite from their carers and family, and carers and family can have respite from the people they care for.
.
Despite doing all we can to reduce costs since the charges came in, we’re increasingly worried about our
finances
Finances are anything to do with money.
; there is no room for more
cuts
Cuts are when there is less money to pay for things like clubs and support.
. We’re so scared of the costs, we’ve already fitted solar lights in every room except Nimali’s and often use torches instead of turning on the lights. We’ve had timed electric heaters installed to come on in short bursts because the bills have quadrupled in this current winter.
The nature of Nimali’s learning disability means she’s very particular about her routine. She wouldn’t understand the changes we need to make around things like energy usage or the types of foods we can buy and would likely become distressed at the change. The normal tweaks other people can make in their homes to cut costs are much harder to make; Nimali notices everything.
Our other daughters are constantly worried because of our age and pre-existing health conditions. They worry about one of us falling down the stairs because we can’t see properly in the dark, or about us going without heating. At the moment, we’ll go without ourselves so Nimali can keep her usual routine; only turning the heating on in her room.
All in all, we feel totally let down by the council. I feel now I am finally finding my voice after many years of not speaking up out of fear, but I do not feel listened to.
I’ve been my daughter’s carer for over 30 years and was receiving Carer’s Allowance, but the payment stopped as soon as I reached retirement age and was replaced with a pension of £170 a week. When my husband retired in 2018, income reduced significantly. I think there’s a misconception held by the council that you have more money coming in when you retire, when the reality is that many families – and especially carers - have a lot less.
Even before these unexpected charges hit us, we’ve received very little financial support. As we’re getting older, it’s increasingly hard for us to walk with Nimali – who cannot go anywhere alone – but our request for the council to help fund an essential walking machine was refused, for example. We had to resort to borrowing money for a treadmill and pay it back in instalments.
Social care costs are only going to go up, not down. I feel let down by the council and I worry endlessly that things only going to get worse for Nimali. I know we also need to make plans for after we’re gone, but with the state of social care being as it is where we live, it’s too heart-breaking to think about Nimali’s future without us. We’ve done everything for her her whole life.
Families should not be in this position. We need more support, and we want to understand what is happening with social care. The future feels bleak for us. We’re terrified.