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Transition to Adulthood

The transition from children’s to adult health and social care services can be a difficult time for families. Parent carers often describe it as facing the cliff edge.

Many changes will need to happen to ensure that the person with Rett syndrome is well supported in adulthood, their physical and mental wellbeing needs are met and they’re able to live as full and active a life as possible whether they remain living at home or move to residential or supported living accommodation.

Depending on the local authority or health provider, transition can happen at any time between the ages of 14 and 25. Rett UK are here to help you navigate through this often difficult and stressful time. We aim to empower you as parents by providing you with information, advice and decision-making tools, helping you identify key action points and showing you how to involve your Rett teen and any other children in your family in the process.

Our support includes:-

  • telephone, email and advocacy support
  • transition workshops at our Regional Roadshows 
  • written resources including a transition pathway that details each stage of the handover process
  • information on benefit changes and entitlements
  • for complex cases, a family support team member may be able to attend transition review meetings to provide extra support and advocacy

Help us to help you

We’re able to provide this dedicated transition support thanks to a generous £77,000 donation from Children in Need, which will enable us to run this support service for three years, until September 2018. A requirement of the funder is that we measure and evaluate the service – for which we need a little help from you.

In return for our support, we’ll need you to complete some questionnaires at the start of the transition and at various points throughout. We’d also love to be able to talk to families to add their stories to our reporting. We don’t want to make this burdensome, but it’s something we need to do. And if our project is a success, it could considerably increase our chance of getting future funding.

* If you’d like to know more about our transition service, please contact our Family Support Officer at






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EQUIPMENT AT HOME As my sister cannot move herself, she needs a lot of equipment so that she can be moved around. When she was younger, my sister didn’t need […]

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Exceptional support! I have phoned Rett UK numerous times and have always found the staff informative, professional, with the ability to empathise. I am always left with the feeling that I’m not alone in my struggle to secure the best for my daughter. Rett UK go above and beyond and I can’t thank them enough!

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