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“I’ve felt tortured, isolated, depressed, forgotten”: The isolation and mental health crisis affecting parent carers and disabled children is a scandal.(78 Posts)
We invited Maureen Muteesa to share her story and why she is asking people to sign her open letter to the Chancellor asking for more support for disabled children and their families.
By Maureen Muteesa
"I have two children, Belinda, 22, and Calvin, 15. Calvin was born with complex medical needs relating to vacterl syndrome. He has a repaired heart which has been operated on at least three times, he’s had a full bowel reconstruction, he has serious renal problems, and he feeds through a tube – just to name a few of the issues he faces.
Disabled children, young people, and their families have been left in lockdown during the pandemic. Not only during the pandemic but also for so many years, families like mine have been forgotten. Now, as society has focused on pubs reopening and holidays abroad, they’ve ignored the cuts to vital services that families like mine rely on to manage conditions and maintain some sort of quality of life. They’ve ignored our pain. They’ve ignored our lives.
As the pandemic raged around us, we saw our support – which was already so stretched – cut. Although the government says that schools were open for children with disabilities, this simply wasn’t true for all families. Calvin relies on regular physiotherapy from school to manage his condition. Unable to access it, his muscles have weakened, he can no longer stand for long and has had to be taken to A&E when he’s fallen. Those precious moments of him walking in our home meant so much to me, but now they’ve been taken away. He is now going to undergo an operation to try to help save his muscles, which is scary given his history of risk from general anaesthetic.
This is just one example. The Disabled Children’s Partnership (DCP) – a coalition of over 90 charities that campaigns with families like mine – has been regularly surveying and interviewing hundreds of parents throughout the pandemic as part of its #LeftInLockdown campaign.
The results are shocking. Their latest survey revealed that over 70% of disabled children are still unable to access pre-pandemic levels of therapies and health services. With this vital support vanishing, nearly three quarters of disabled children have seen progress managing their conditions – and their overall development – regress due to the pandemic.
And that’s just the physical health impacts. The isolation and mental health crisis affecting parent carers and disabled children is a scandal. I’ve felt tortured. Isolated. Depressed. Forgotten. With access to barely any respite care, I’ve had to struggle through providing 24-hour care to Calvin without help. Caring for Calvin is constant, hard work. He requires constant 24-hour care throughout the day, including respiratory physio, catheterisation, emptying the Mitrofanoff every 2 hours, administering various medications regularly. While the rest of the country squabbled over an hour of outdoor exercise, I struggled just to breathe.
Families up and down the country are feeling the stinging bite of this isolation. Research from the DCP shows that – despite lockdown easing and society returning partially ‘to normal’ – 9 in 10 disabled children and 6 in 10 parent carers are socially isolated. The connection between isolation and long-term mental health problems is well-known, and can lead to the development of conditions like Post-Traumatic Stress Disorder (PTSD).
But the worst thing is that these problems aren’t anything new. I’ve had to fight for over 10 years to get Calvin and I the support we need, but it’s never been enough. Seven nights of respite a month – quite often reduced to three nights depending on what is happening at the hospice – is painful. With such few breaks, I can’t have a relationship and therefore have remained single. This has impacted on my adult needs. I am more of a carer than a mother to my children, as all I do is work to keep my son alive.
I’m not alone. Surveys from the DCP before the pandemic showed that only 4% of parents said that they had enough support to care for their child safely. This isn’t right. Families like mine deserve a better quality of life. Our children are entitled to the same opportunities as any other child regardless of their disability.
This is why I’ve launched a public open letter demanding that Rishi Sunak – the Chancellor of the Exchequer - funds dedicated recovery for families like mine – investing in missed therapies, respite, health services and mental wellbeing support. At the same time he should turn the page, and finally start properly funding disabled children’s health and care.
To make those in power listen, we need as many signatures as possible – so please sign the letter and spread it as far and wide as you can.
Disabled children, young people and families deserve a future free from pain, exhaustion and constant battles. As we recover from the pandemic, now is our chance to make it happen."
Maureen and/or the Disabled Children's Partnership will be coming back onto the thread next week to answer your questions, so get posting below.
Signed and passed on.
It's not at all reassuring that I am far from alone in my feeling of abandonment.
@PickAChew you are far from alone in your thinking x
Signed. I've got a severely disabled child and for the last year we've been completely left to it. All therapies cancelled or via zoom which is pointless and stressful. She regressed. She sees nobody 90% of the time. It's heartbreaking. And I know so many families in the same position.
My child had 26 months at home while the County Council pratted about and failed to find a school. I’m a lone parent and at a pretty low ebb now. Totally and completely isolated with zero support.
Signed Maureen, sending love to your family ❤️
I have signed. Support for families is so lacking, it is an absolute disgrace.
Been going on for years and made worse in covid.
Love to your family Maureen
Provision for disabled children was woeful before the pandemic and has only got worse. Education provision was particularly poor for us as school closed in lockdown and we heard nothing from teachers or therapists for months - despite the public statements about schools remaining open for children with EHCPs. We struggled to deliver our child's therapies ourselves but his skills regressed over lockdown. We've not seen or heard anything about catch up provision either.
I feel so much for families surviving without respite for such a long time. The little support on offer seems to have completed disappeared
Signed. Mum to two SEN superstars here.
We have no respite or help and 18 months of Covid means my 17yo (CP) now has crippling anxiety and panic attacks on top of her physical needs.
Her twin brother with ASD is getting worse too but we’ve never had any help for him either.
Our LA who are useless at the best of times are constantly batting me away now using Covid as an excuse.
All these years of fighting for them and now I just feel like I’m so tired and utterly desperate. There’s nothing and nobody out there to help us.
Signed. Sending all my love to you and yours. This Government should hang its head in shame. Our beautiful amazing kids and young people with SEN have been completely abandoned with no plans in place to catch up on what they've missed.
The past 18 months have highlighted to us just how reliant on respite we are. Whilst we were able of spend DS3's direct payments flexibly DS1 has far more complex needs which made it difficult.
After spending years working on getting DS1 to leave the house without becoming overwhelmingly distressed we then spent months shielding which saw a huge regression in his social and emotional development.
You only have to look at the uproar when schools closed and online provision wasn't brilliant to see just how society forgets about the most vulnerable children. Where is the same uproar for the thousands of children out of education, some for years? Where is the dismay when LAs refuse to comply with their statutory duties and thereby failing disabled children week in, week out for years.
Signed x I have a a very challenging disabled child who was out of education for 18 months whilst my council faffed finding him place. Single mum, my parents both isolating no support. It's been dreadful for all of us in one way for another with disabled kids. Thank you for bringing it to light
Zero plans or provision for retirement/later life
Not had a break since 2019 (I don't mean a holiday I mean a few hours off)
I wouldn't have it any other way but my gosh some support over the past 2 years would have been so welcome.instead I've been battling the system since 2017 and homeschooling (not electively) for over 2 years really. Sleep is a privilege I rarely get and I'm fraying..,
My situation is challenging-every day -but nowhere near as much as others here I know. I terrify myself for the future for all of us.
Im waiting for help for my son, its exhausting.
Sending 💐 to all those that are being let down
Signed. I spent years advocating for parent Carers (and all Carers) and pushing my county council to prioritise their needs, sometimes successfully but often being only paid lip service.
It continues to be a National disgrace.
💐 to you all, and hugs.
I'm not a parent of a disabled child and I can't pretend I know how difficult it must be but I think its an absolute disgrace how little help there is and how difficult it is to access.
I honestly don't know how some people manage.
Before the pandemic, we were waiting for support for my disabled son's anxiety. We were then told that the anxiety was due to his autism so could not eb treated by CAMHS and we were discharged to an autism team, who couldn't visit because if the pandemic, so after 14 months they have offered CBT via zoom. When I said he couldn't access this, as his communication skills are complex - large chunks of echolalic text but not able to hold a 2 way conversation - we were discharged without seeing anyone. The anxiety is worse and we deal with it every day, with no support and no backup. The holidays have been a nightmare and now they have decided to reduce his short breaks, meaning that he cannot access his short breaks activity because he is below the threshold for the hours needed.
It feels like a race to the bottom.
Signed. No DC, with disabilities or otherwise, but I am a human and I don't like to see others being treated inhumanly.
Signed and shared.
I have an 11yr old dd with ds and asd, who really struggled with lockdown. We ended up paying for a private sensory assessment this year and it came out that she had high levels of anxiety .
I think all I want is proper support and respite. But that seems too much to ask.
I don’t know how you all manage to do what you do. I am in awe of you.