The Royal College of General Practitioners (the UK’s membership body for general practice doctors) today called for an urgent review of adolescent healthcare as ‘too many young people are getting lost in the system’: see BBC News. Professor Steve Field, chairman of the Royal College, commented that the handover between child and adult health services is ‘not done very well in most places’ and young people are suffering as a result.
The proposed review would be something that NPC welcomes. Our research into issues such as mental health, autism and disability has highlighted the difficulties involved in the transition from child to adult services. Adult services often have a markedly different approach to children’s services and, if the transition is handled badly, this can be confusing and alienating for young people. In some cases, the same level of support is simply no longer available. For example, a teenager with a condition typically associated with childhood, such as Attention Deficit Hyperactivity Disorder (ADHD), may struggle to find specialist help beyond the age of 18. Or young people with learning disabilities who received support for special educational needs at school may find that they are not eligible for adult social care—meaning that they will have to face one of the most difficult transitions of their life on their own.
There is certainly a case for reviewing statutory health and social care services. But NPC would also hope that, if the review goes ahead, it will take into account the role that charities can play—and, indeed, already are playing—in bridging the gap between child and adult services and providing the sort of accessible support that vulnerable teenagers need. This was discussed in our recent report on children and young people’s mental health, Heads up, and is an issue we are researching further for a report on the transition of disabled young people—so watch this space for more info on the subject.
I have a daughter who is 22 years of age who has Turner’s syndrome who sadly wasn’t diagnosed until March 2009. She was originally diagnosed with receptive language problems. She left school without the basic needs in maths and at 17 couldn’t do her tables. However last year we discovered maths being part of Turner’s syndrome. I found transition was awful and the report given to her by school was only about her personality and not her medical and educational needs. I believe there should be two reports one medical and one for the young adult. I had nothing to give the college to explain her difficulties in understanding language or her disability.
She did enter into adult social care but there was not much help there either. The government training skills did not work for my daughter. She went into further education for 2 years and never improved on her literacy, then continued on a performing art college and experienced more problems with language and assignments at University. However could not continue into the upper level which means she will never qualify in anything. She was offered one course with other disabled adults but it meant using her hands and she had problems with motor skills along with the fact she wanted to be included. However inclusion also meant that the teacher directs the questions and no disabled students which meant she failed to understand the course fully. She has now given up on education because she is not willing to do the same level course each time. She is unemployed but now faces more problems due to her late diagnosis and psychological problems attached to education which have made her feel hopeless and unable to do anything.
When I tried to inform people they took offence rather then passing the information back to educators. My information was buried as if she was alone and nobody else had that experience but I assure you many feel the same.
I also wrote in the region of 400 emails to different disabled performing arts. What I found not many were for adults with a learning disability and many were for higher disabilities.
When one comes in the middle.. Not disabled enough to go into disabled specialised school. Even though that was my daughter’s opinion as she wanted to have inclusion but was never given that choice. She feels completely isolated and found social groups far too high a disability and the work a little easy for her.
Yet the courses for normal abilities too hard. I tried to highlight this to several charities. She gave up on performing arts too. Why young adults who are creative and perhaps lower achievers can’t follow their passion for arts like everyone else? What is going wrong if many disabled can’t seem to get past the literacy examinations? What are disabled adults saying? How many disabled adults from special needs education go onto a second or third level if they have a learning disability? Why was I not told that my daughter could get one to one help if I fought for it.
I don’t believe they get enough support or the schools have no time to help so many adults with problems. More help should be given as this affects the carer’s health too.
We all need hopes and aspirations and not to live in poverty. Many disabled adults want to work and although there is help out there I believe we should be listening to what they are saying about the problems they face. They are entitled to have their voices heard and their point of view put over.
Hi Simone,
I read your reply with interest and a great deal of sympathy. I work for the Transition Information Network (TIN), which is a project based at the Council for Disabled Children, and your experience is unfortunately very common.
TIN is an alliance of organisations and individuals who come together with a common aim: to improve disabled young people’s experience of transition to adulthood. TIN has a membership of nearly 3000 people. We provide information about transition through 4 main ways:
1. Our website (www.transitioninfonetwork.org.uk) which we are redeveloping (new site due to go live in the next few weeks). The website signposts people to resources about transition and to organisations that can give advice and support.
2. Our magazine My Future Choices which features stories about transition projects across the UK, articles by professionals, families and disabled young people, as well as the latest news, resources and events.
3. Our policy and practice e-bulletin Getting a Life which includes the latest policy and practice developments in transition.
4. Our seminars, which are held a couple of times a year, and which gives professionals, families and disabled young people a chance to discuss key topics about transition.
TIN also works with government departments and service providers to influence policy developments at a national, regional and local level as well as to translate policy into real improvements in provision and support across all agencies for disabled young people and their families.
If you and your daughter would like to become TIN members, please email your postal address to tin@ncb.org.uk. You will then receive our magazine and emails about our work and events. Membership of TIN is completely free and you can unsubscribe at any time.
Unfortunately, TIN is not resourced to give direct advice to families, so we’re unable to give you advice about your daughter’s situation. However, I can recommend the following organisations that might be able to help:
Skill: National Bureau for students with Disabilities. http://www.skill.org.uk.
Dimensions. http://www.dimensions-uk.org
Turner Syndrome Support Society http://www.tss.org.uk
Arts Spider (Mencap’s disability arts website). http://www.artspider.org.uk/
Best wishes,
Victoria
Thank you for your advice. However I would like to put my daughter’s point of view over. Firstly I have already tried the sites suggested. When we attended some courses they were too easy for my daughter. One of the things that does not seem to be taken into consideration is the different disabilities and also the levels of learning. She felt as if she was being spoken to like a child because other disabled were higher then hers.
Fact still remains with one to one education was working but any other methods didn’t. Many of these children need more help but instead are left with no hope.
Teachers at colleges have no time to spend with adults with a disability and the whole class is directed at non disabled. Facilitators try but they do not have the expertise or time.
My daughter still wants to learn but now is left with nothing as the main courses she is interested in are far too hard and the disabled classes too easy. She has now given up.
I have tried everything but I am only here to put her point of view over so someone may read it and learn from it in order to make changes for others in the future.
My suggestion would be for charities to help pay for more helpers in the classrooms or teachers to help adults or children with disabilities have better chances in Education.