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Amaze Guest Blog

‘Here we go again – 16 years later’

12.04.17

Our transition series continues with Amaze, a charity offering information, advice and support to families of children and young people with special educational needs or disabilities in Brighton and Hove; discussing support services available for your child as they reach adulthood. Over to Amaze…

When you have a son or daughter with additional needs, life can be a bit of a rollercoaster.  You have times when things are busy, complicated or full of worry and (with any luck) calmer stretches in between when the journey is a bit more straightforward. So early on we have to get to grips with what the issues are for our child, getting a diagnosis perhaps and re-adjusting our lives and expectations. Starting school and getting the right support is one of the peak times for worry and effort, moving to secondary school can be another. But then your child moves into their teens and you realise you have a whole new world to worry about – how they will get by in adulthood?

Support Services into Adulthood

If we let ourselves look ahead at their potential future it can feel like starting all over again. Old issues like the lack of appropriate support or services and your child’s vulnerability raise their heads again as concerns. Issues like further education, relationships, work or other daytime activity, leaving home and personal choices become important. There’s a whole new world of services (or lack of them) to learn about. Finding out about the support or services available for young adults can be confusing. It can be hard to work out who should be doing what and when, and where to go for advice and support. You also need to take on board that it’s their life that is being planned and you should be supporting them to be as fully involved as possible according to their capacity. This can be a challenge when you’re used to making all the decisions with their best interests at heart.

Education Health and Care Plan (EHCP)

If your child has an Education Health and Care Plan (EHCP) from around age 14 this should increasingly focus on what they need to be prepared for adulthood. If you don’t feel this shift at the Year 9 annual review you should raise it. Adult life may seem a long way off but good planning for transition needs to start early. So, as well as talking about how things are going at school and their options for education post 16 and beyond, you should start to look at what they need in place by the time they are grown up to be healthy, to participate in their community, to live independently and to get into employment. Life skills, friendships and meaningful leisure activities may be as important for this as traditional school subjects. Amaze has information about transition planning from 14 onwards available here and Contact A Family have a factsheet that gives a good summary available here.

Education, Work Experience and Supported Living

Obviously what all these things mean is going to vary a lot depending on your son or daughter’s needs.  A full time paid job may never be on the cards for some, but there may be a route into volunteering. Would they be able to do a supported internship that could lead to work experience and maybe even a job? Your young person’s school (and later college) should offer careers advice. Disabled young people should be able to stay in education until 19 and in some cases beyond, up to 25 for a few, but having some idea about what they would like to do beyond this should give the last years of education more focus. Equally if your child is just 15 or 16 the idea of them moving out of home and living independently of you may seem too huge a change to contemplate. But the day will come when this seems natural and appropriate and it takes some time to achieve especially if your child has more complex needs. So it is wise to start investigating options like supported living well ahead.

Adult Social Care

Moving from children’s to adult social care is often a particular worry for families. Getting support like short breaks or direct payments from your children disability team does not necessarily mean they will be entitled to adult social care and, if they are, the amount and type of support may change, although not necessarily for the worse. The Care Act 2014 tried to address this issue and make for more seamless transitions. It introduced a new duty on local authorities to carry out Child’s Needs Assessments (CNA) for a young person, where there is “likely to be a need for care and support post 18”. The purpose of a CNA is to find out what adult social care a young person might be eligible for once they reach 18 so you and they can make informed choices about their future.   Talk to your child’s social worker to check local arrangements for these assessments. In Brighton and Hove there is a Transition Team that works with families of young people with more complex needs. To find out more about social care transition look at Amaze’s information here.

Paediatric to GP Care

When it comes to health, most disabled children will have had a community paediatrician taking something of an overview of their health and development. At 18 this responsibility switches to their GP who may be a lot less familiar with the kind of needs they have. GP surgeries are encouraged to offer an annual health check to all their patients with learning disabilities and the first of these should be offered from around 14 and certainly well before 18 to ease this transition so ask if they don’t offer this automatically. If your child has ongoing health needs there should be more detailed planning about how and when they switch from paediatric teams to the adult equivalent.  For the most disabled young people you’ll need to find out about Continuing Health Care.  Again Amaze has information here.

Additional Resources

If you are a parent of a disabled teenager reading all this may feel a bit overwhelming. Faced with the need to plan ahead we can all turn into the proverbial “rabbit in the headlights” so take it one step at a time.  Parents and young people in Brighton and Hove can ask Amaze for advice. In other areas start with your local Information Advice and Support Service which you can find here if you are not in touch with them already. If your son or daughter has a learning disability there is a great guide to grasping the nettle and planning for their future from the Foundation for People With Learning Disabilities which can be found here and the Transition Information Network is a good place to look for information resources for all aspects of transition for young  people with a variety of additional needs, available here.

Amaze can be contacted on: 01273 772289 I helpline@amazebrighton.org.uk

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