Education with Juvenile Huntington's

Because the symptoms of Juvenile Huntington’s disease change and evolve over time, the extra support your child might need at school may also change.

All schools are required under the Equality Act 2010 to make “reasonable adjustments” for disabled children. These can include:

  • adding ramps or lifts
  • changing how learners are assessed
  • providing extra support and aids such as specialist teachers or equipment.

It is the responsibility of local councils to ensure these adjustments happen. This means that your child’s school should be able to accommodate any special needs they have, at least initially.

As Juvenile Huntington’s is such a rare disease, however, teachers are unlikely to have encountered any pupil with it before. So you will need to work with your school to ensure they understand how best to help. Take a look at our free guide for schools.

Getting assessed

You can ask your council to carry out an education, health and care (EHC) needs assessment for your child. Local authorities are required to carry this out in accordance with the Children and Families Act 2014. This should lead to an EHC plan, which will explain the extra support they need.

This is a good starting point to getting your child the help they need in school.

Choosing the best school for your child

Some schools are able to offer more help and support than others to pupils with additional needs. Ask to see your school’s policy on special educational needs and disabilities (SEND), so you know what support they can offer.

There are lots of different things to think about when considering which school is right for your child with Juvenile Huntington’s. These include:

  • the type and degree of disability your child has and how much and how quickly you expect that to change.
  • the availability of suitable schools in your area.
  • how well a school is able to respond to the challenges of Juvenile Huntington’s disease and whether they can meet your child’s specific physical and emotional needs.
  • whether they will be able to adapt to changes in your child’s needs over time, and if so, how far into the future.
  • if you’re looking at a special needs school, would a school for children with physical disabilities be more appropriate than a school for children with learning disabilities?
  • what your child thinks and feels about a particular school.
  • what other members of the family, including siblings think and feel about it.
  • the opinions of your child’s main carers and professional advisers.

Transport

Your child is entitled to free transport if they can’t walk to school because of their special educational needs or disabilities. It doesn’t matter how far away they live. Your council must provide transport suitable for their needs.

When to change schools

For many children and young people with Juvenile Huntington’s, staying in a mainstream school may be the best option in the early to mid stages of the illness, but it can become more difficult as the disease progresses. However it very much depends on each individual’s situation.

Moving to a special needs school can be a big step for everyone, so it’s a good idea to think carefully about the best time to make such a change. Some children do better when they are with other children that are “higher-functioning” than themselves, while others benefit from the experience of being one of the more capable ones in their peer group.

Home schooling for someone with Juvenile Huntington’s is likely to be extremely challenging, as it can be quite isolating for both the child or young person and their parent-teacher. It’s generally good to have a break by being apart from each other and with other people for a few hours a day. Many children respond very differently to teachers and therapists than they do to their own parents and the presence of other children can also be very motivating for them.

Getting the right school environment for your child is important for any parent, and for children with Juvenile Huntington’s it can make a big difference to their quality of life.

HDA’s specialist adviser on Juvenile Huntington’s, Helen Santini, is happy to help answer any questions you have about education. You can reach her on helen.santini@hda.org.uk or 01279 507656.