A year on the campaign trail in 2017

Our head of policy, Una Summerson, outlines how this year we have helped families to take action for each other.

It's been a challenging year trying to cut through the focus on Brexit and a surprise election that saw us lose some important allies in Parliament.

However, despite this, together with a growing network of 20,000 people, our campaigns have not only led to policy change but have helped secured new funding, press attention and helped us reach more families.

January - March

We started the year announcing the winners of our first ever Awards. John Bercow MP hosted the ceremony in Speaker's House at the Palace of Westminster. We launched our awards to shine a well-deserved spotlight on the amazing things families do when caring for disabled children. You can read about all the finalists in our Awards 2017 booklet [PDF].

In February we launched a call for evidence as part of our biggest ever inquiry into school transport. We knew this was an important issue for families as calls to our helpline had doubled on the previous year, but we didn't anticipate that we would have 1,000 responses in the first 24 hours.

March - April

Our CEO, Amanda Batten, also chairs the Disabled Children's Partnership, a brand new coalition of leading charities fighting for better health and social care for families with disabled children. Find out more about the Disabled Children's Partnership

We held an evidence session in parliament as part of our School Transport Inquiry, where parents, our helpline and transport providers were able to share their experiences.  Read more about the inquiry. We closed the call for evidence with more than 2,500 responses.

April is always a busy month for changes to the benefit system - see our benefits webpages on the ongoing changes including cuts to ESA and limiting tax credits. We are one of the few charities campaigning against the cuts to financial support hitting families with disabled children, and that's why it's important when we get opportunities to appear in the media, such as we did on BBC news this month.

Sadly over Easter, we heard one of our star childcare campaigners, Stacie Lewis, passed away. Read about Stacie and how she helped us secured early years funding to improve access to childcare.

May - July

In May, we launched our Universal Credit #KnowYourClaim campaign. We produced lots of new resources, including podcasts, and after the election we also launched a petition calling on the PM to stop cuts to 100,000 disabled children's payments. 

In June, we launched the Disabled Children's Partnership first campaign: The Secret Life of Us. The first phase of the campaign aims to raise awareness of the challenges, and joys, families with disabled children face that most people are simply unaware of. 

In July, we also joined forces with University College London (UCL) to launch a national research trial - the first of its kind in the UK - to investigate reducing behaviour that challenges in pre-schoolers. The research will help raise awareness with the government on why families need help with behaviour.

August - October

Through the school holidays we prepared to launch findings from our School Transport Inquiry. We launched on Radio 5Live with a campaign win, because the Secretary of State for Education announced plans to review school transport statutory guidance. The decision was made as a result of findings from our School Transport Inquiry.

As part of the campaign we also produced new advice on how to challenge local school transport decisions and consultations.  Read about how this has led to a successful school transport policy challenge by a parent.

As part of the Secret Life of Us campaign we published new statistics on offensive comments families face. Linked to this our helpline manager and CEO appeared on Radio 5Live to talk about disability hate crime against children.

November - December

We published Caring More than Most in parliament and to the press. The report (download the executive summary [PDF]), reveals the significant disadvantage many families face in key aspects of life and shows that 24 percent of parent carers provide 100 hours of care every week - the equivalent of working three full-time jobs simultaneously.

Alongside Caring More than Most, the Disabled Children's Partnership is calling on the government to follow our five step plan [PDF] to address this growing crisis in health and social care for disabled children. We also continued to support the Save Nascot Lawn campaign, the respite centre providing short breaks for children with complex health needs and learning disabilities, which will cease being funded by the CCG, it was announced this month. It is set to close in May 2018.  Sign our petition calling for a review of short breaks funding.

Through this period we continued to campaign on Universal Credit. While some changes were made in the November budget, more than 100,000 disabled children remain worse off. Sign our petition to the prime minister and help us reach our target of 5,000 by the end of the year.

Looking ahead to 2018

We will keep the pressure up on school transport and Universal Credit. We will also start to plan for Counting the Costs 2018 - it will be 10 years since we started.

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Written by Contact at 00:00