2. “It is important that the person is at the centre of any plans and discussions that are held. Making sure that their views are listened to and respected.” “Treating people as individuals with unique gifts and needs”

3. “One point of contact would be helpful. If you don’t know what is available you can’t ask for it”. “Not everyone fits your tick box forms. If we could sit down and talk to someone instead of filling in a form we would at least feel as if we were heard”.

4. “Transition has been traumatic, complicated, stressful and not thought through correctly.” “Start by enabling people to access a service that actually exists” “Very poor understanding of condition and total lack of support”

5. “Synergy between service provision could be improved. I feel as though I’m the coordinator, liaising with medical doctors, therapists, teachers and making sure the recommendations of one are carried out by the other.”

6. “Positive working with schools and colleges to really give advice” “I got the support worker that I needed which was good as well as the support room if I needed it.” “Everyone has been very polite, but no one has done anything even remotely useful.”

7. “There appears to be greater store placed upon the observations of educational professionals (including early years settings) than those of parents and this can result in a lack of support for families as their concerns are dismissed or attributed to other issues (eg, poor parenting).” “More sensitive approach to parents and Children’s needs, more flexibility”.

8. “Transition is not well co-ordinated between adult and children services. It is an area that needs developing so that everyone gets a good service.” “Families need to be introduced to the concept of personal budgets at the start of transition (14) and encouraged to think, with their son or daughter, how they will use the personal budget to make life the best they can. Families who start early and are creative engender the most successful outcomes, but they need support.”

9. “The unit was the one place my son could be himself and was happy. The staff treated him with respect and although he didn’t do well academically he came away feeling good about himself.” “They just need so much more support and understanding. For one of my boy’s to attend an induction day at the college I had to spend time persuading him to go in and I spent the day in the car park. It made him feel safe and also gave him a safe haven if he needed it.”

10. “Knowledge is invaluable. Consistent, co-ordinated approaches from year to year, and from school to school. How well your child does at school (socially, academically, emotionally) shouldn’t be so dependent on which school they go to and which teacher they have.”

11. “Lack of options for parents and children in terms of educational provision. There is also a disproportionate weighting given to academic achievement over emotional health and wellbeing and a more holistic approach would benefit a great number of children.”

12. “PROPER training and awareness for ALL staff – teachers, dinner ladies, receptionists – ANYONE who has contact with the children” “More meaningful parental involvement where their views are truly taken into account. Greater training and awareness for staff. More emphasis on the general emotional health and wellbeing of the child instead of purely academic potential.” “Some individual teachers’ (both mainstream and special school) have the willingness to take on the challenge of understanding my child’s needs better”

13. “There needs to be a holistic approach to transition not just education. Consideration/specialist advice on: housing options; travel, personal budgets; access to specialist groups and therapies; accessing medical support; finding appropriate support workers/personal assistants.” “Planned response, knowledgeable advice of the options, involvement of key people in the person’s life that are important to them. Being aware of the anxiety change causes and being aware of that through meetings, correspondence etc. with the young person”

14. “Access to services and treatment should be more straightforward, especially for children - these are formative years which will shape their future. If we get it right early, there’s a good chance they’ll do much better as adults, requiring less support and making valuable contributions to society themselves (thereby saving you money in the long-run too).” “Having trained staff that are passionate about helping the pupils and families that they work with. Schools that take their SEN responsibility seriously and are proactive in helping.”

15. “At the time of my son’s transition I wasn’t immediately aware of the importance of a transition plan. I believe that for many parents this is still the case. Fortunately I was in a position to read, ask questions and seek advice and this led to a meaningful plan.”

16. “There hasn’t been enough social education for my son. He has been expected to know things they’ve never taught him, that other children pick up incidentally through play and interaction” “Some professionals were very helpful, others were NOT. Mainly seemed to be divided into those who understood (or cared to learn) and those who chose not to.”

17. “They just need so much more support and understanding. For one of my boy’s to attend an induction day at the college I had to spend time persuading him to go in and I spent the day in the car park. It made him feel safe and also gave him a safe haven if he needed it.” “Have a short one to one with the child on a daily basis in the first couple of weeks of starting a new school, even if it is in play form. Keep the parents updated and informed ALL the time.” “No one to help him access college, or work. Tried a couple of jobs but failed due to being on his own and communication problems, being misunderstood and teased by co workers. Very isolating and frustrating for him, not good for his confidence.”

18. “All staff should be aware of possible triggers and ways to minimise anxieties and outbursts, as they can often be a reaction to something that could have easily been avoided, if they had a greater level of awareness/training, and thought things through, rather than simply expect pupils to cope (e.g. changes to routines they know are going to happen, but don’t warn the students; or not sufficient explanation about an activity).”

19. “From my contact with parents on the Island I believe that there is still a lack of understanding around transition planning and what it means. I also believe that professionals don’t fully appreciate the consequences of transition plans and pay lip service to them.”

20. “He was told he couldn’t do the second year of the course he wanted to do. He was told this at his interview for the course, by someone he had never met before, that he wouldn’t cope with the second year because of his literacy levels. He was very upset about this and it took him a long time to come to terms with that fact that he ‘was not good enough’. If you think a child can’t do a course don’t tell them at the interview, someone should let the parents or child know before this time.”