This government is failing disabled children and their families

“Every day is a struggle of some kind or another, trying to juggle hospital appointments, meals for Jai, getting Jai ready for school and it all repeats itself the next day”.

Pam Nagra cares for one of the 925,000 disabled children in the UK. She’s a single mum and the primary carer for her son Jai, a chatty 12-year-old, who adores football and wants to be a policeman when he grows up. He is also gradually losing his sight and hearing due to a rare genetic condition called Alstrom syndrome; and two years ago he was diagnosed with leukaemia.

Jai used to get a one-to-one support worker for four hours a week, which was essential for developing independent skills like learning how to use the local bus routes.

However, it’s been two years since he’s had this kind of support, because the local authority has been unable to recruit anyone who can meet Jai’s needs. Pam says that without this crucial help, Jai is unable to do the things he loves like going swimming or out to a football match: “he is always asking ‘when am I going to get a carer?’”

Families like Pam and Jai are reaching crisis point across the country, and it feels like the government has forgotten them.

A new survey by the Disabled Children’s Partnership (DCP), a coalition of over 60 charities, including Sense, Contact and the National Autistic Society has found that only 4 per cent of parents and carers feel they get the right support to safely care for their disabled children.

The services, which should be providing support to families to keep their children safe, free from pain and able to attend school have been devastated by funding cuts.

The DCP has found there is currently an annual funding gap of £434 million for children’s social care services. That’s £1.2 million of support that disabled children are missing out on every day.

One crucial service that parents are increasingly unable to access is respite care. For Pam, the two days of respite a month she receives are a lifeline.

Last year, the disability charity I run, Sense, funded a holiday place for Jai. During the week long vacation Jai was supported by experienced staff and volunteers; he went go-karting, played mini golf, fed farm animals and made a new best friend. For Pam that holiday for Jai provided a break for her too – as she put it: “it’s so important for recharging my batteries.”

However, the lack of funded respite services means many parents and carers around the UK don’t get a break, and their children miss out on opportunities. Caring without respite can have a significant impact on the health and wellbeing of parents, with over half of those surveyed by the DCP reporting that they have been treated by a GP for depression, anxiety or stress.

It is unacceptable that disabled children and their families do not receive the support they need. If this isn’t urgently addressed it will continue to be a never ending cycle of disadvantage for families with disabled children.

This is not about asking for disabled children to be singled out or treated differently. This is asking for fairness. Not only would this improve outcomes for disabled children – it would also deliver important cost-savings for the state.

That is why the Disabled Children’s Partnership is asking everyone to sign a letter to the chancellor of the exchequer and join the call to #GiveItBack and make sure that people like Pam and Jai no longer struggle without the support they need.

Richard Kramer is Chief Executive of national disability charity Sense, and Vice-Chair of the Disabled Children’s Partnership. You can sign the letter of support here