Alison, what made you seek a diagnosis for Callum?
We noticed that Callum was different to other babies - we knew from the start. He didn't sleep, he cried a lot and became distressed if anyone but us held him.
As he got older, Callum refused to eat. He didn't make eye contact and he would often try and run off. Callum’s nursery referred him to a speech and language therapist, and we were told that he may have semantic pragmatic disorder.
Callum was eventually diagnosed with Asperger syndrome at seven-years-old.
You had to fight to get Callum the right support. What was the process like?
Callum struggled at mainstream primary school and the support he needed wasn't there. His school finally applied for an Assessment for a Statement of Educational Needs (now changed to an Education Health and Care plan or EHCP) when Callum was nine.
When we asked for support, we kept being fobbed off, or told there is no money. We were told, "you will never get a statement for him". When I discovered Callum’s current school, I told the local authority’s educational psychologist and SENCo (special educational needs co-ordinator) that I had found the perfect school. They all laughed at me and said he would never get a placement there.
The school's Statement application was refused by the local authority. We were told we had a right of appeal to the SEND Tribunal. The start of a two-year battle of three consecutive court appeals began.
That must have been incredibly hard for you both. How did you find out about our Education Rights Service and Clifford Chance?
Parents can represent themselves at tribunal, but the process is very complex and legalistic and I personally did not feel I could do it alone. Others successfully do and there is a lot of support out there, including organisations, advocates and parents who have been through the process. I also knew we couldn't afford the tens of thousands of pounds it can cost for legal representation.
I started searching the internet for support. I wasn't sleeping and I was terrified of going to court. But the thought of Callum going without help terrified me more. The delay in accessing support had a negative impact on Callum's mental health, and he was medically signed off school for six months. A friend encouraged me and told me that approximately 90% of parents’ SEND appeals were successful.
Searching online, I found the National Autistic Society website and reference to Clifford Chance law firm, who in some exceptional cases offer pro bono representation.
I wrote a pretty emotional email begging for help and I received a call a few days later. After a few more calls I sent over the grounds of appeal I had written and I was very grateful to hear that they would be shown to the partners at Clifford Chance.
I will never forget the day I received the call to say that Clifford Chance would legally represent Callum. I cried my eyes out with relief.
You had to go to multiple tribunals to get the right support for Callum. What was it like going to Tribunal?
We had three consecutive tribunals for Callum, over two years.
After I appealed to the Tribunal for Refusal to Assess, the local authority agreed to assess a few weeks before the hearing.
The assessment took place and then the local authority refused to issue a Statement, instead issuing a Note in Lieu document. This was not legally binding; its contents of provision were inadequate and it was not worth the paper it was written on.
We had to appeal to the Tribunal again. This went to a hearing, where we were represented by Clifford Chance. I was absolutely terrified, but the judge and panel were amazing. They had a clear understanding of the evidence bundle and it felt like we were having our voices heard for the very first time.
We won, and the local authority were ordered to issue a Statement. They agreed that the Note in Lieu was inadequate and that Callum’s needs were not being met, or understood.
However, when the Statement was issued, it was just a replica copy of the wording from the Note in Lieu, copied into the Statement. It was devastating.
So, we went to Tribunal number three, which was to dispute the inadequate contents and also to get the nearest school that could meet Callum's needs, named as his placement. The hearing took place over two days. It was tough and very draining.
Two weeks later, we found out we had won. We got the call from Christina, the lawyer at Clifford Chance who represented Callum in court, and we all cried. It remains one of the most special moments of my life and still makes me cry when I think about it.
The LA tried twice to appeal tribunal decisions to the Upper Tribunal. They were denied.
How did the National Autistic Society and Clifford Chance support you at this time?
The National Autistic Society and Clifford Chance brought expertise, experience, determination and continual support. There is no way we would have managed to navigate the complexities and procedures of the many challenges we faced during those traumatic two years.
As parents without legal support, it is like going to war when they (the local authority) have an army and all we have is a pop-gun. They have lawyers, barristers and teams of professionals at their disposal. Parents do not always have that luxury.
I think that Clifford Chance would agree that the cases were very challenging. We were so lucky to have the support of Christina, the lawyer who represented Callum during those two years. It was phenomenal to see how she managed to get such a deep understanding and grasp of our case. Christina was also supported by other lawyers and trainees from Clifford Chance. We were always put at ease and never made to feel a nuisance. I received some lovely messages from them when we won. It was emotional.
We also had the amazing support from a lady from the National Autistic Society Education Rights Service. She was my rock during one of the most difficult times of my life. She helped us understand what would happen at each stage of our case and she also worked so hard on our case. There was so much paperwork! On the days when things were very bad and we faced many setbacks, she would always pick up the phone and support me with constructive advice and listen to me.
As parents, knowing we had the National Autistic Society and Clifford Chance supporting us gave us the strength to carry on fighting. I am sure we would have given up after the first appeal without this support.
Without a doubt, the National Autistic Society changed Callum's life and has given him a bright future. Without the charity's service, support and advocacy I truly believe the lives of so many children would have a very different and negative outcome. This not only impacts on the child, but on the siblings, parents and extended family and friends. We are indebted to them forever.
Callum, what difference has going to a specialist school made for you?
The school is lot more attentive, the staff understand how to help me, and the work is more catered to the pace and abilities of each student. They focus on the children in the school. They care. It has made a huge difference to my life and I am very grateful for being able to go there and the help that I have received.
Alison, do you think your experience fighting for support for Callum make a difference when you were sorting out your younger son’s education?
On a personal level, I feel the experience definitely empowered me to support my children. I have grown in confidence too.
I learnt so much from those cases. I have often been contacted by other families who are experiencing similar situations. It is fulfilling to be able to pass some of this knowledge on, to show other parents that it can be done and to never take no for an answer.
I have unfortunately had to go to Tribunal since for Callum's two siblings, but managed to file the appeal and represent myself. I have also had some fantastic support from SENDIASS (Special Educational Needs and Disabilities Information Advice and Support Service), who can also offer independent advice.
Thankfully all of our children are now settled in supportive and understanding schools that are able to meet their needs.
What advice would you offer to other parents facing similar issues?
The first thing I would say, would be to read the SEND Code of Practice. This is the law and details in sections how support must work. As it comes in sections, you can find the relevant part you need.
There are many organisations - like the National Autistic Society Education Rights Service, IPSEA (Independent Provider of Special Education Advice), and SENDIASS - who offer support and have copies of draft letters that you can use. Visit their websites and make contact with them.
As a parent, you know your child best. Trust your instincts and don't be afraid to ask questions and to challenge if required.
