Gina’s son, James, has Lennox-Gastaut syndrome and left school last year. He now uses a personal education budget and a personal health budget together to meet his education, health and wellbeing needs in a personalised way so he can continue learning.

Gina and her family live in Hull. Gina’s son James is now 20 years old, and has Lennox-Gastaut syndrome, which Gina describes as a horrible form of epilepsy resulting in multiple seizures every day. There is no genetic reason for James’ condition, and he has suffered from this since he was two months old. During his childhood he was having hundreds of seizures a day and wasn’t able to reach any developmental milestones – he reached the age of 16 without being able to speak or communicate in any other way. James now experiences up to 20 seizures per day, and he remains at very high risk of sudden death in epilepsy (SUDEP).

James’ experience at school and first steps with the Tobii

James attended a school that could deal with his profound and multiple learning disabilities (PMLD) where he would participate in sensory stories and other activities for people with PMLD conditions. When he was 16, James got an Education, Health and Care plan (EHCP) and was the first in his school to change from the old statement format.

Also, around this age, James tried using the Tobii Dynavox speech generating device at school. After working with the Tobii for a few months he was able to burst bubbles on the screen and hit targets which led up to him saying “hello, mum” for the first time in his life, which was a profound moment for the family.  However, very few members of staff at the school were experienced enough to teach somebody with PMLD using the device and he only had access to the device twice a week for half an hour each session.

Gina realised the Tobii was vital for unlocking James’s potential, and that he had the ability to accelerate his learning and lead a more fulfilling and independent life. James was unable to get NHS funding for his own device until he could prove he could use it so a friend of the family decided to do a fundraising campaign and raise the £12,000 needed for the device – the whole community and beyond came together and got him his device. James received his very own device at age 17, when he had two more years left in school.

Looking at options after leaving school

With James due to leave school just before his 19th birthday it was looking very likely the next step would be a day centre for him. Gina started to look for ideas of what was available for James when he left, and came across personal education budgets. Though initially from her internet research they seemed to be more geared towards someone with a physical rather than a learning disability, Gina and a friend whose daughter was in a similar situation decided to keep looking into options aimed at their young persons’ way of learning.

At James’ EHCP review Gina was told by the local authority that James had to be attached to a college or a school in order to access a personal education budget, but fortunately this was not the case – if it was something that couldn’t be provided by an existing community service then it was a viable option.

The personal education budget proposal

Gina drafted a proposal – only finding out later that it was not really down to her to write this.

Gina’s proposal for the whole school year came to £17,000:

  • 6 hours per week private tutor time
  • 2 personal assistants for this period (because of James’ complex health needs he needs 2 PAs)
  • 2 hours per month private speech therapy
  • A venue to do the learning in with changing facilities (rented from a local charity)
  • A year’s membership to the Rett university online learning, which helps carers to support people like James with learning using the Tobii

Gina was able to show that the annual cost of this was cheaper than three days a week at a day centre (the likely alternative) and it was certainly cheaper than the other option of going out of town to a residential college which she was told would cost somewhere in the region of £250,000 due to his high level of care per year.

James’ tutor is a teacher from his old school, and James has been attending the intensive tuition sessions since 2017. Gina says the progress he has made is remarkable – he is developing early reading and numeracy skills and is working on a range of communication strategies using the Tobii. James has surpassed all his outcomes and targets set in his EHCP in the first year. James even cast his first ever vote in the general election!

Using the personal health budget with the personal education budget

In addition to his personal education budget James has a personal health budget which he got at age 18. Before James was 18 he was entitled to only 12 hours PA time funded by social care. But at 18 after getting an adult social worker he was assessed for continuing healthcare (CHC) and then for a personal health budget. His hours of care initially went up to 24 hours and Gina burst into tears with relief. The CHC nurse realised that this still wasn’t enough and the amount of hours was reassessed upwards. After the first year at review, the hours of care went up again.

The personal health budget covers his care as well as one-off payments for a portable hoist, epilepsy monitor, etc. which allow James to be more active outside his home environment and makes it easier on days out to hoist him from his regular wheelchair to his off road chair. He can now do this with carers whenever they fancy a walk in the woods or along the beach as they weren’t allowed to lift him without the hoist due to health and safety. Gina is hoping in the very near future that James will go away with carers for weekend breaks.

Gina uses a third party provider to manage the personal assistant payroll, and also pays an annual fee to an employment advice service in case she needs help around any employer legalities. Everything else like the carer roster, the family manages. James’ personal assistant team consists of three young men around his age, and his sister who is three years older than him. Gina is able to use the same team for both budgets and manages the care across the budgets. Going out with men his own age means it’s like going out with friends for James and they can advise him on the latest fashion trends when going shopping together!

James has speech therapy provided by the local authority but also has the scope to have private speech therapy through the personal education budget.

Both budgets are reviewed annually.

Gina finds it very helpful to have the CHC nurse as a single point of contact for the personal health budget, and the nurse is invaluable because she does ‘think outside the box’ when it comes to ways to use the budget to best meet James’ needs.

Gina shares the room rental cost with two other families from a different area who also are using personal education budgets – this reduces the cost.

Spreading the word

Gina thinks more people need to know about personal education budgets and that parents should be told about the options available to them. Hull local authority is now on board, but at the beginning when Gina started the process, she and the local authority were learning together.

The assumption in the local community is that when they become adults, people with PMLD will go to an adult day centre. Gina reflects that doesn’t have to be the case and you should look into the best option for the person you care for because there are other options out there. As she says, “Just because they are PMLD, why shouldn’t they learn, or have the option to learn?”

Gina’s key tips:

  • Your child doesn’t need to be attached to a school or college to get a personal education budget
  • If you get an education budget, share the difference it has made so more people can be made aware of the option
  • Don’t give up and keep trying

What’s next for Gina and James

Gina and James are flying to the Tobii conference in Sweden later in August 2018 to share their story. The future is looking bright for the family, thanks to the support of the local community, the NHS and the local authority, and Gina and her family’s determination that James should have a choice, and have control to lead a fulfilling life as an adult.