Educational support for children affected by Rb

Marie Lloyd is a Qualified Teacher of Children and Young People with Visual Impairment, and mum to Daisy who had retinoblastoma. She outlines the educational support available to families affected by Rb and recent changes in the law…

There has been a massive shift in culture towards children with a disability or special educational need in England. Families now have a voice and a chance to be heard.

In 2014, the introduction of a new Children and Family Act in England led to the biggest educational reforms in a generation, with new legislation and legal duties for education, social care and health.*

This will have an impact on children with health needs including visual impairment after retinoblastoma. The SEND Code of Practice 2014 is there to support a broad range of needs including sensory impairment (VI) or physical needs.

Your child doesn’t need a Statement of Special Educational Needs (SEN) or Education Health and Care Plan (EHCP) to get the support they need at their place of learning, and all schools, including academies and free schools, have a legal obligation to make any “reasonable adjustments”. Previously this came in the form of School Action or School Action Plus but these have now been replaced with a new, single approach in England called SEN Support. There are no Individual Education Plans, but the schools have to keep a record of additional support or curriculum that a child receives.

Clear targets are set for your child with identified support and intervention. Their progress is monitored and reviewed regularly with parents, usually every term. If your child’s needs are more complex or exceed a certain amount of funding, an EHCP will be requested instead of the old SEN Statements. All existing Statements should by now have been converted to EHCP.

*The SEN Code of Practice in England is shortly undergoing another review as it needs updating and reviewing. In Northern Ireland the reform will hopefully be completed by 2020 and involves Statements and Individual Education Plans. In Wales the term SEN is being replaced by Additional Learning Needs, and SENCos will be known as ALNCos (Additional Learning Needs Co-ordinators); and Statements of Special Educational Needs will be replaced by Individual Development Plans for up to 25 year olds. In Scotland SEN is referred to as ‘Additional Support Needs’ and is a single structure to ensure all children get the support they need in education.    

Summary of the main changes

• Education, health and social care all work together to produce ONE plan rather than each doing their own. All information is centralised with coordinated assessment.
• The guideline is 20 weeks (not 26) from request of EHCP to final issue.
• Parents and young people can now request EHCPs, not just professionals.
• The whole process should be person-centred, tailored to you and your child.
• The age range is 0-25 (rather than to 5-16).
• All local authorities offer an Independent Parental Support and Advice Service to help you through the process.
• It will be easier for parents and young people to appeal the EHCP, and this can be in the form of mediation or tribunal. A national pilot (April 2018-2020) now allows the SEN and Disability Tribunal to consider complaints around the health and social care aspects of an EHC plan, as well as education

If a young person stays in further education or an approved apprenticeship, the EHCP can be requested or stay in place, helping to ensure that young people are picked up by Adult Services (16-18 plus) and their needs are still met. 

In every case, an Assessment Coordinator is appointed to act as a key point of contact. Parents and young people can choose this person or even do the role themselves. They work with the family and professionals involved and gather all the information needed to write the plan. You should feel more supported without the need to repeat yourself and speak to lots of people.

A personal approach

EHCPs are outcome-focused, based on the aspirations of the young person. It’s about what the family and child want to achieve and aspire to in school and life. Outcomes are usually linked to age – for example at college a young person may want a particular career and to live independently; in KS2 outcomes may be around SATs and transition to secondary school.

Personal budgets are part of an EHCP. This is an amount of money identified by the local authority needed to deliver particular parts of the provision and is paid to the family or young person to give them more control and choice. My local authority identifies personal budgets for transport and short breaks. Yours will have its own areas of provision for this.

All local authorities and schools have worked with parents and young people to produce a list of services (in one place!) and support available locally. Mine can be found at portsmouthlocaloffer.org and is a good example – you should be able to find yours by searching ‘local offer’. All young people with a visual impairment should now have a qualified teacher of visually impaired children (QTVI) and you should speak to the SENCo, your Rb team hospital orthoptist, or your local authority if you don’t have one.

More supportive

As a mum to a young person with Rb who had a double enucleation, I have found the new system much more personalised and supportive of her needs. As QTVI, I have been an Assessment Coordinator and written plans and I have found this very rewarding because it is about getting it right for the child and involves much closer working with the family.

Hopefully you will all benefit from the reforms too. Remember, knowledge is power so I hope that reading this has helped you.

Useful links/further reading

This article first appeared in the Spring/Summer 2016 edition of InFocus, and was updated in June 2019. To receive a regular copy of InFocus, please become a member of CHECT – it’s free and easy to do.