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Photo of girl with Rett syndrome Transition Support

Growing up
The Transition (Year 9) Review
The Actual Transition Review Meeting
How we support you – parents with children age 13-16
How we support you – parents with children age 16-25+
General Information

Growing up

It can be a shock when your child reaches the age when puberty and adolescence approaches. This may be a time when long-buried dreams about the future for your daughter or son child are re-awakened, as the milestones they pass through take on a different significance. Our aim is to support and prepare you emotionally and practically before every main stage of your daughter or son’s life – through offering the opportunity to talk through any concerns you may have, and giving you the right information at the right time.

The Transition (Year 9) Review

The transition from child to adult status is an important period in terms of planning ahead for services and support that may be needed in the future. We can advise you of resources to help you find your way around the various systems of adult education, health and social care services, leisure and housing options. We would encourage you to ensure that Education and Social Services include personal, social, educational, health and leisure opportunities into your daughter or son’s Transition Plan (known as the Year 9 Review), and to make sure the Plan is monitored and regularly evaluated.

The key to good planning at any stage, is an up-to-date assessment of your daughter's or son's needs. The assessment should involve, apart from yourself, all those who know her or him well, for example school staff, careworkers at respite, epilepsy nurse, and anyone else you think would be useful. The social worker is usually the person that co-ordinates an assessment like this.

The Actual Transition Review Meeting

Some families experiences of the Year 9 review have not always been positive. It is likely there will be a number of different professionals at the meeting, and it’s not always easy to express your point of view in these circumstances. It can be helpful to bring a friend along for support and/or to take notes. You may find that you are told at the review that it is “too early to plan or make decisions”. However, this would be contrary to government guidance and good practice. The aim of the Review is for everyone involved to come up with an agreed plan that will address your child’s current and future needs. More importantly, the plan should contain very clear action points, the name of the person responsible, and the date the action should be completed by. We know this does not always happen, so it may be a good idea to mention early on that you would like these details recorded. It can also be helpful to agree at the meeting (or beforehand if that feels more comfortable) a time by when the minutes/plan should be circulated.

How we support you – parents with children age 13-16

All our members with children approaching 14 years will receive from us the RSAUK booklet ` Rett Syndrome: Adolescence and Adulthood' which contains useful advice and shares the experiences of other parents. We also send the Contact a Family Factsheet called ""Preparing for Adult Life and Transition" which explains in more detail what a Transition Plan is and how it should work.  The reason for the “between” ages is to pick up on an ongoing basis any new members that join.

How we support you – parents with children age 16-25

When your daughter or son approaches 16, we will send you our "Planning Ahead" factsheet which contains information on the range of options and topics to consider. Where appropriate, we will also send the Contact a Family factsheet 'Post-16 Transition in Scotland.

General information

We are aware that planning ahead isn’t just about making practical arrangements. Thinking about the future may naturally bring up feelings of anxiety as you wonder who will be involved in supporting your child and whether it will be enough. As always we are here to listen to your individual situation and to talk through any difficulties you may be experiencing.

As you will have read, all of the information referred to above is sent to families when their child reaches a particular age and is also available to download now.

RSAUK are pleased to be members of the Transition Information Network (TIN). As part of the network we are in touch with others who are also working to improve disabled young people’s transitions into adult life.

Any links to external websites have been carefully selected but are provided without any endorsement of the content of those sites

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Contact A Family

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Family Fund

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Transition Information Network