On Saturday 12th September, Damien Winwood took on his biggest running challenge yet, a 100km ultramarathon in support of Little Miracles

Michelle King: Families with disabled children need more than promises

At Little Miracles, we know that government announcements and political promises are not abstract issues for the families we support. They can have a direct impact on everyday life.

Yesterday, our CEO, Michelle King, joined a panel discussing the Prime Minister’s latest speech setting out the government’s priorities which was aired on Channel 4 news. While she welcomed some of the announcements, she also highlighted the lack of detail around some of the issues that matter most to disabled children and their families.

“For me, the promises are great, but there was no detail,” Michelle said.

From our work supporting families of children with disabilities and life-limiting conditions, we know how important that detail is. Michelle highlighted the absence of information around benefits and Universal Credit, particularly proposed changes to the health element.

“There’s just so many areas that have been brushed over,” she said.

Social care – but what about disabled children?

We welcome the focus on social care, but as Michelle pointed out, there are still significant questions around support for disabled people of all ages.

“He has not addressed what’s happening for disabled adults. He has not addressed what’s happening for disabled children,” she said.

These are not simply political or economic issues for the families we support. They affect everyday life – from paying household bills and accessing support to being able to care for a child safely at home.

At Little Miracles, we regularly hear from families who are already struggling to make ends meet while managing the additional costs that can come with caring for a disabled child or a child with a life-limiting condition.

Energy costs are having a real impact

Michelle also raised the impact of energy costs on some of the families supported by Little Miracles.

“I would have liked to have seen the announcement of social tariffs to protect those that are most vulnerable,” she said.

This is something we see first-hand. Some of the families we support rely on essential equipment that needs to be powered, adding to household energy costs at a time when many families are already under financial pressure.

Michelle explained:

“We’ve got families that are charging life support for their children at the centre and within the charity because they can’t afford to have their gas and electric running during the day.”

For families caring for children with complex or life-limiting conditions, energy costs can be far more than an ordinary household bill. Medical equipment, specialist equipment and the need to maintain a safe environment can all add to the financial pressure.

Promises need to translate into real support

For us at Little Miracles, the difference between an announcement and meaningful support is incredibly important.

Supporting families is about much more than providing activities and somewhere to go. We help families navigate benefits, education, housing and other practical challenges, while also providing emotional support, counselling, respite and opportunities for children and young people to take part in activities alongside their peers.

That means we see every day the challenges families are facing and the gaps in support that can leave them feeling isolated and overwhelmed.

Michelle’s comments reflect what we hear from the families we work with: promises are welcome, but families need to understand how those promises will translate into practical support.

The speech may have set out a direction, but for families caring for disabled children, the important questions are what happens next, who will be supported and whether the help will reach the people who need it most.

At Little Miracles, we’ll continue to listen to families, speak up about the challenges they face and make sure their experiences are part of the conversation.

Earlier this year, Kirsty and several others from her team at ACWYRE took on a challenge they'd been talking about for some time: trekking to Everest Base Camp while raising money for Little Miracles.

For many families, the school holidays are a time to relax, spend time together and make memories.

But for families of children with additional needs, disabilities and life-limiting conditions, the holidays can bring very different challenges.

33 teams set off  taking on a 2,300-mile journey to Pisa and back in cars worth £1,000 or less.