Sign Maureen's open letter for disabled children and families

Dear Chancellor, 

My name is Maureen, and I am writing to you on behalf of families with disabled children and young people across the country. I am writing to demand COVID-19 recovery policies for our families so we can recover from the disproportionate impacts of the pandemic. I am writing to ask you to commit finally to funding disabled children’s health and care services properly. I am writing for fairness so that disabled children and families can enjoy the same opportunities other families take for granted. 

Maureen and her son Calvin

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. 

For such a long time, my family has been left in lockdown. The government says that schools were open for children with disabilities, but this simply wasn’t true for so many families like mine. The school couldn’t provide proper equipment for remote learning, so Calvin went the whole year without education. He also wasn’t able to access physiotherapy from school that he needed to manage his condition. As a result, his muscles have weakened and he can no longer safely walk inside the house 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. 

In the pandemic, I’ve been tortured. Isolated. Depressed. Forgotten. With access to barely any respite care, we’ve had to struggle through on our own, which has left a massive mental toll. 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. Whilst the rest of the country fought for an hour of outdoor exercise, we just struggled to get by as the council and others failed to provide support. We learned to just breathe, rather than live. 

But this isn’t anything new. Even before the pandemic, the situation was bad. I’ve had to fight constantly for over 10 years to get Calvin and I the support we need, but it’s never been enough. The 7 nights a month of respite we get barely helps when Calvin needs help 24 hours a day. Even from the 7 nights we are only guaranteed 4 nights a month. This because if there is a dying child or an emergency at the hospice, we will not get the other 3 nights that month.  

The burden falls entirely on me. As a result, I can’t have a relationship and therefore have remained single. This has impacted on my adult needs. My daughter once commented that as times I am more a carer than a mother to my son. Calvin also had no support to meet his social needs – he only gets funding for purely medical purposes. We both deserve a better quality of life. Because of these conditions affecting my family, I am mentally exhausted, drained, sick and confused.  

Please, we are pleading for the government to come to our rescue. 

Research from the Disabled Children’s Partnership (DCP) backs up the experiences of parents like me. They have surveyed and interviewed hundreds of parent carers, who have consistently reported that therapies, health services and respite care services have all been reduced in the pandemic - and many still are. DCP freedom of information research also proves that NHS Trusts and local authorities have provided less services. As a result, nearly three quarters of disabled children have seen progress managing their conditions - and their overall development – regress due to the pandemic. Social isolation in parents, disabled young people and their siblings is disproportionately high, leading to potentially serious long-term mental health issues. This is an injustice. 

I urge you to listen to countless parents, young people and allies supporting this campaign, and the over 90 charities that make-up the Disabled Children’s Partnership, and commit to funding COVID-19 recovery policies for disabled children, young people and families in the autumn’s Comprehensive Spending Review. Policies like dedicated therapies catch-up could start to help children like Calvin heal, and additional respite care could start to tackle the mental health crisis in parents.  

But we can’t just go back to the way things were. The system was already broken, with only 4% of parents before the pandemic saying that they had sufficient support to care safely for their child. You must not only fund the recovery, but also fill the £434 million pre-pandemic funding gap in disabled children’s social care services and create a dedicated Disabled Children’s Innovation Fund to develop and spread evidence based best practice. This would ensure that children can not only heal from the pandemic but can level-up with the rest of the country and have the best possible chance to live a healthy and happy life in our post-COVID world. 

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. I hope you heed our call.  

Yours sincerely, 

Maureen Muteesa