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
If you’d like to know more about our transition service, please contact our Family Support Manager at julie.benson@rettuk.org