WIREDGOV

Help at Hand is here to support the most vulnerable children in society, many of whom struggle to have their voices heard for a variety of reasons.

Some cases stand out because they are particularly sad or shocking, or because of how strikingly they illustrate flaws in the system. This is true of Sonny*, a 13-year-old child with a life-limiting condition who has missed out on the opportunity to go to school because of delays and funding disputes between local authorities – and who will now most likely never attend again.

We are sharing his story in the hope that it shines a light on the barriers that too many children with special needs face in order to take up their right to an education.

Sonny is a looked after child who has profound disabilities which mean he uses a wheelchair, is partially blind and cannot talk. He also has seizures and difficulties breathing, so he needs support at all times.

Sadly, Sonny was removed from his parents at a young age due to concerns about the care they were able to give him. He spent time in a hospice before being placed with specialist foster carers who could meet his needs. These carers live in a different part of the country, but his original ‘home’ local authority retained parental responsibility for him as a looked after child and continued to support him via his social worker, Independent Reviewing Officer (IRO) and the Virtual School team. Responsibility for his special educational needs was transferred to the local SEND team who, after consulting with his home local authority, found Sonny a place at a special school.

While he did well with his foster carers, it soon became clear that Sonny would need nursing support to attend school, as staff couldn’t manage his medical needs. Providing this level of support requires NHS Continuing Care funding, so a request was made to the Integrated Care Board (ICB) covering Sonny’s home local authority. This is because specialist health funding for looked after children who are placed out of the area follows similar rules to social care support, with the home ICB retaining responsibility in most cases.

The Continuing Care assessment was completed six months after Sonny joined the school. During this time, he only attended school for a few hours in total, when his foster carer was able to stay with him. Funding for 1:1 support from a healthcare assistant at school was agreed in principle, but the home ICB later decided this should be the responsibility of the ICB where Sonny now resides. The result was a dispute between services which continued for many months.

As a result of that dispute, more than a year after Sonny had been added to his school roll, there was still no health funding to enable him to attend.

Sonny’s carers contacted Help at Hand for support, and the team wrote to his social care and education professionals, urging them to resolve this for him as soon as possible. It became clear that confusion around regulations, funding and the responsibilities of the teams in different areas was creating obstacles and delays, and Sonny’s social worker started to convene Team Around the Child meetings, aimed to bring together all professionals working with Sonny, to address this. Even then, unfortunately, the meetings were not always attended by the key health and SEND professionals, which made it difficult to agree actions.

During this time, Sonny remained out of school. His foster carers arranged a package of positive activities for him in the community, including sensory play, music concerts, ice skating and bike rides. They felt this was more realistic for him than returning to school and asked the SEND Teams in both areas to cooperate on approving and funding an EOTAS (Education Otherwise Than At School) package instead. Frustratingly, these professionals did not take this forward, and the plan remained for Sonny to go to school, for reasons that were not made clear.

The disagreement on funding prevented any planning for Sonny’s return to school. The Children’s Commissioner intervened via letter to escalate his case to senior managers in both ICBs and the local authority, and an agreement was finally reached on the funding, with his home ICB paying and the local ICB arranging the care. But this was almost one year after the original Continuing Care assessment and 18 months after Sonny had been placed on roll at the school, which had continued to receive fees from his local authority for him.

Sonny’s health has deteriorated significantly. By the time an agreement was reached, it was clear that he would not be able to return to school. The local authority started to plan for the end of his life. However, Sonny’s carers still wanted him to have the best possible opportunities to enjoy the time he has left, so they continued with his activities when he was able to do them. Only at this point did the professionals finally agree that EOTAS was the best option for him. It took many more weeks, another letter from the Children’s Commissioner and increased intervention from the Virtual School for the SEND teams to agree on funding, though the package will hopefully be in place soon. Sonny’s change in needs also meant further delays to the Continuing Care package, which was amended to cover healthcare support for some activities at home and in the community – but is yet to start. 

Sonny has now waited almost two years for the education and healthcare support he is entitled to. His situation is a stark example of the confusion, drift and delay that can affect looked after children with special needs who are placed out of their home area. This would have a huge impact on any child, but Sonny only has limited time left, so every day is important.

Thankfully, Sonny has incredible foster carers who have dedicated themselves to meeting his needs in the widest sense and to ensuring he is impacted as little as possible by the problems in the systems determining his support. They deserve huge praise for this. Their commitment to Sonny highlights the essential role played by carers in maintaining children’s quality of life, particularly when other services are not working as they should.

The Children’s Commissioner has written to senior officials at the Department for Education and NHS England, as well as both local authorities, to share Sonny’s story and to ask for the issues his case highlights so glaringly to be considered more deeply – and with the urgency they deserve. Help at Hand will continue to monitor Sonny’s situation and to offer support where needed until this is finally resolved for him.

*Names have been changed to protect identities.