Empowering families to get the right educational support for children
Why would a pair of commercial lawyers set up a charity to help the families of children with special educational needs? What can we achieve that isn’t already being tackled by other charities? And why would we even try to do this in the middle of a pandemic, when so many charities were facing collapse? These are questions I’ve been asked ever since Janvi Patel and I set up Support SEND Kids in 2020.
(SEND stands for special educational needs. Local authorities have responsibilities by law to support children and young people with SEND, up to the age of 25. The Government has issued a statutory code which contains details of legal requirements that must be followed without exception and statutory guidance that must be followed by law “unless there’s a good reason not to”.)
To begin with, it was personal. Janvi and I have a mutual friend who fought hard for the support that would allow her daughter to access an education, then watched in horror at the beginning of the pandemic as it disappeared overnight. Every child took a hit to their education that year, but for children with complex special needs the setbacks were much harder to recover from. The idea that she could be home-schooled was laughable, yet there was no way her mother could continue to work while she wasn’t in school.
To add insult to injury, on 1 May 2020 the Government changed the law, making it even easier for local authorities to withhold support for children with special educational needs. This seemed outrageous, and after examining the process, it occurred to us that this is a legal problem. As lawyers, we wanted to do something about it.
Process at fault
Janvi and I have never met in person. She lives in LA and I’m based in the Channel Islands, but these were the days of lockdown and late night Zoom calls were the perfect place to brainstorm. As Janvi points out, the problem isn’t SEND law itself, which is actually pretty fair and comprehensive in England and Wales. It’s the process which is confusing and inconsistently applied depending on the local authority you’re dealing with.
To put this into perspective, imagine a typical year group of 90 school pupils. Last year on average 10 of those children qualified for SEND support under the laws of England and Wales, but only one or two would actually receive this legal entitlement. So why can’t their parents access their rights?
Given these statistics, if you are not personally affected it is likely that you have close friends or relatives who have experienced first-hand how complicated, emotionally fraught and often cripplingly expensive it can be to access special educational support for your child. Sharp elbows, thick skins and in many cases deep pockets are required and not everybody is prepared to fight the battle, or has the resources to succeed. This is an access to justice issue and that SEND children are being denied their (human) right to an education.
The contract is the problem
At the heart of the system is the Education, Health and Care Plan or EHCP, a contract between the family and the local authority agreeing what the child needs. The problem is, this contract doesn’t provide any of the protections that we take for granted in the corporate world.
For example, parents are not offered legal aid because the system is designed, in theory, as self-serve. In reality, parents find themselves involved in complex tripartite negotiations, arguing against experienced lawyers representing the local authority as well as trying to get the right engagement from schools struggling with increasingly limited budgets.
Even before regulations watered down the requirement to provide support in the pandemic there were few incentives for the local authority to move through the process within set timeframes, causing serious damage to a child’s education.
The attempt to remove lawyers from the process has left us with an adversarial environment that pits parents against the very organisations they turned to for help and leaves lasting damage in interacting with the state. Many parents are warned by schools that if they don’t hire a lawyer they are likely to lose at tribunal and fail to secure funding. It is not unusual for parents to report spending £50,000 on this advice, and we have interviewed parents who have spent as much as £100,000.
Our late night Zoom calls continued for six months, involving a growing group of like-minded lawyers. We realised that individual parents were paying lawyers for the same advice. If we could arm parents with this information in a free, accessible, user-friendly format, we could prevent many of them from incurring astronomical legal fees, making it far more realistic for more families to access their rights.
As well as being a lawyer, I run a technology business called Senate which provides lawyers with the tools to create Wikipedia-style knowledge banks. We realised we could use Senate to connect parents with lawyers who were willing to help them interpret their rights for free, then store up the answers for the next parents who come along with the same problem.
Sharing knowledge is fundamental
Most lawyers are very motivated to offer pro bono support, and SEND lawyers in particular are a small community, overwhelmed with demand and often having to turn parents away. Sharing knowledge and enabling more parents to succeed without direct legal support allows these SEND lawyers to focus on complex cases, whilst raising awareness of the service they offer with the clients who need more than just information.
And so, the core idea was born. There are plenty of special needs charities but none focused on providing parents with information to navigate the EHCP system. As lawyers we had access to the right resources and networks. Leon Glenister and David Wolfe QC are the barristers who wrote the law on SEND and were very excited by the opportunity to translate this into digestible, meaningful Q&A for parents to access through the platform.
A team of part-time volunteers maintains the platform, matches parents’ questions with experts who can answer them, organises webinars and recruits lawyers to join on a pro bono basis.
We have been overwhelmed by the generosity of law firms like Morgan Lewis, Reed Smith, Shearman & Sterling, Shoosmiths and Boyes Turner who have provided free legal advice, IT support and domain expertise, alongside our PR company Farrer Kane who have done a brilliant job raising awareness for us, and all because they share our passion for this project.
However, whilst the core idea was to let the technology do most of the work, no matter how much we relied on the generosity of volunteers we realised we would need to raise money to keep the project going. Even with our start up backgrounds, interpreting regulations and ensuring sound governance, setting up a charity proved far harder and more time consuming than we expected and we were very lucky to get free expert advice from other lawyers to prevent the mistakes that can have such catastrophic effects for charities.
Key lessons learned
We have learned some key lessons along the way, and I’m sure there are many more to come.
Firstly, we have benefited hugely from early investment in research. Our volunteers carried out nearly 20 thorough interviews with parents, most of whom found it very painful to talk about their experience. Their words really challenged our thinking about how we could help, and focused our efforts on what became our core purpose of providing information to navigate the system, as well as emotional support through the online community.
Secondly, the team have learned to be more realistic about money. It seemed obvious that approaching wealthy companies with a clear need and a simple solution would result in straightforward fundraising success, but the reality has been far slower than anyone imagined. Many charities went under in the pandemic and the fundraising environment was hugely challenging, something now further affected by the cost of living crisis.
Undaunted, we focused on delivering more with less, as the legal profession is constantly being challenged by its clients to do. We are fortunate that we run as a virtual charity which means we can keep overheads low, unlike more traditional charities with the usual expenses.
Thirdly and perhaps most importantly, in 18 months from a standing start and through all the challenges of remote working the team have achieved some exceptional wins. Leading barristers in the field have translated complex case law into user-friendly “no-nonsense” guides for parents. Step by step processes and checklists are in the works.
Online forum users
There are already hundreds of users active in the online forum, asking and answering questions or just tapping into the knowledge generated by other peoples’ Q&As and attending webinars where they have access to expertise both in real time and on play-back.
We found out that to get started and tick off some real achievements we didn’t need an office, or full-time staff, or even to have met each other in real life. In fact, these things could have got in the way and prevented us from building a charity that can scale up, potentially around the world.
So, what’s next? We want to complete the SEND jigsaw puzzle, enabling parents to join up their needs with their legal rights with the minimum financial outlay and emotional wear and tear. The problem doesn’t stop when children leave formal education, and I am very excited about our project to tackle disability discrimination as these kids start to enter the workplace with all the skills their specialist education has equipped them with.
And beyond that? These are not just problems for England and Wales, or even just for the UK, and Janvi’s experience in California has turned up very familiar themes. This is a global problem, and the beauty of our technology-based solution with a distributed workforce is that it has the potential to solve the problem on a global scale, giving every SEND child access to the education they are entitled to.