Action Cerebral Palsy
Action Cerebral Palsy (ACP) applied to the Whitehouse Consultancy’s 2014 pro bono scheme as a consortium of specialist charities working with children with cerebral palsy and their families. ACP were successfully adopted by the Whitehouse Consultancy as its charity of the year and were provided 12 months of free professional public affairs support. By the end of the 12 month period the momentum generated Whitehouse’s campaign for ACP brought together a coalition of special schools to become a formal charity, which is now recognised by the Government and the children’s sector as the voice of children and young people with cerebral palsy.
Whitehouse Consultancy developed a strategy following an initial planning meeting with ACP to identity the activities we can undertake to meet their broad public affairs goals. The aims of this strategy and the activities we undertook to achieve them were:
1. Improve public and political awareness of issues facing children with cerebral palsy (similar to that achieved for Autism in the UK)
- Used Whitehouse’s policy expertise to work with ACP to form a submission to the consultation on the Draft SEND Code of Practice – the guidance explaining the implementation of the Government’s special educational needs and disability (SEND) reforms – to establish ACP’s credibility on SEND policy
- Converted key points in the submission into a briefing, which formed the hook of a series of meeting requests to targeted Parliamentarians to introduce ACP and its goals.
- Secured meetings with several Parliamentarians who tabled a series of written Parliamentary Questions to pinpoint the Government’s current policy position on the issues facing children with cerebral palsy, and send letters to Ministers to alert them of ACP’s concerns about those issues.
- Briefed the office of the Speaker John Bercow, author of the 2009 Bercow Report into the communication needs of children, on ACP’s goals to build a relationship with the Speaker.
- Asked Mark Hoban MP to apply for a debate on the education issues facing children with cerebral palsy and provided a comprehensive briefing for Mr Hoban ahead of that debate, which took place in December and led to a direct meeting with the Children’s Minister Edward Timpson.
2. Create a “movement” for children and young people with cerebral palsy and their families (similar to Communication Matters for Alternative and Augmentative Communication (“AAC”) – a campaign Whitehouse also led)
- Provided a weekly parliamentary and political monitoring and activity update for ACP consortium members to brief them on the progress of the campaign and wider developments that were of interested, maintaining their stake in the campaign.
- Produced an innovative tool kit for ACP consortium members to circulate among the thousands of families supported by its consortium, to encourage them to engage with their political representatives and raise awareness of ACP’s campaign.
- Coordinated a Parliamentarian led inquiry into support for children with cerebral palsy, chaired by Paul Maynard MP, which allowed ACP consortium members and wider stakeholders to directly feed in their views to.
- Organised a Parliamentary reception in Speaker’s House, with guests including the Speaker John Bercow and the Education Secretary Nicky Morgan, to launch a report following the inquiry with recommendations that all stakeholders could call for as a “call to action”.
3. Develop a national multi-agency strategy that leads to the formation of a national cerebral palsy taskforce to work with central government departments and local authorities to ensure the delivery of the national cerebral palsy strategy and its dovetailing with the new Children and Families Bill
- Identified Paul Maynard MP and Mark Hoban MP as the key driving forces to lead an inquiry into support for children with cerebral palsy, and worked closely with their offices to coordinate the inquiry launch and subsequent evidence sessions.
- Prepared terms of reference for the inquiry, identifying specific questions to be answered as part of the inquiry’s call for evidence which was disseminated widely among relevant stakeholders.
- Managed the receipt of all written evidence and prepared summaries on the broad issues they raised for ACP and the inquiry leads.
- Coordinated four oral evidence sessions to inform the inquiry, including from parents, education experts, health experts, legal experts, NHS England representatives, Department for Education directors.
- Drafted final report, taking into account the evidence received and making specific recommendations for future action, which was launched at the Parliamentary reception and presented to the Education Secretary Nicky Morgan.
- Secured meetings with senior officials from the Department for Education, Department of Health and the Council for Disabled Children, to discuss the establishment of a national cerebral palsy taskforce to deliver the recommendations of the report.
The campaign Whitehouse led saw ACP directly engage the Education Secretary Nicky Morgan, the Children’s Minister Edward Timpson, Department of Health and Department for Education directors, NHS England leaders and many backbench MPs, leading Peers and several children’s sector charities. The campaign resulted with ACP securing a Department for Education grant and private funding to help them achieve their aims, which will be in part delivered through a Government backed taskforce that ACP are currently in the process of setting up. Whitehouse helped ACP to achieve beyond even their bold aims.
The key achievements included:
- A meeting with Education Secretary Nicky Morgan MP, who provided the key note speech at the ACP reception at Speaker’s House.
- A speech at the ACP reception from Speaker of the House John Bercow, declaring his support for the movement.
- The staunch support of Paul Maynard MP who Chaired the inquiry into how children with cerebral palsy could be better supported, which was addressed by Department for Education Directors, NHS England leaders, as well as parents and health and education professionals, which culminated in a formal report that was presented to the Government
- A meeting with Flora Goldhill the Director for Children, Families & Social Inclusion at the Department of Health to discuss the recommendations of the report.
- A meeting between the Department for Education, Department of Health and Council for Disabled Children to discuss setting up a formal taskforce to raise awareness of the needs of children with cerebral palsy.
- The staunch support of Mark Hoban MP, who led a 90 minute Westminster Hall debate on the education of children with cerebral palsy, addressed by the Children’s Minister Edward Timpson and Shadow Children’s Minister Steve McCabe.
- A direct meeting with the Children’s Minister’s Minister Edward Timpson, to discuss the recommendations of the report we produced about how children and young people with cerebral palsy could be better supported.
- A meeting with Shadow Children’s Minister Steve McCabe, to discuss the ACP movement and what a future Labour Government may do to further support children and young people with cerebral palsy.
- A grant is for PACE, ACP’s host school to develop tools to demonstrate how specialist support and intervention for children with sensory motor disorders such as cerebral palsy can be provided in non-specialist settings.
- ACP formalised as a registered charity and received a substantial private donation to secure their future.
“From the outset, the Whitehouse team led Action Cerebral Palsy through the process of parliamentary engagement and later a parliamentary inquiry with the utmost enthusiasm and professionalism. Their knowledge of the process and careful guidance of Action Cerebral Palsy, an organisation new to the world of campaigning, was outstanding. Without their help, we would not be in the position we are in today in which we have a strong voice on behalf of children with cerebral palsy and their families.”
Amanda Richardson, Chair, Action Cerebral Palsy.