Adults with Down's Syndrome added to 'extremely clinically vulnerable list'


We know that it has been a couple of worrying days for parent carers of young adults with Downs Syndrome, after they were added to the ‘extremely clinically vulnerable list’.  The guidance unfortunately is not clear, in particular it does not address where those between the age of 18 and 19 are in schools, where in relation to school the guidance says that GP’s or specialist health consultant should make a recommendation about attendance based on individual circumstances.  The guidance does not mention what should happen in further education settings at all.  It is also not clear what support adults with Down’s Syndrome, who can’t attend their usual service provision, should receive.

PACC has provided feedback to the National Network of Parent Carer Forum about this situation and they have requested urgent clarification from the DFE and NHS England.  Specifically, they have requested the following;

Clarity on how the additional support for the extremely clinically vulnerable group referenced in the guidance will be provided to SEND families in this situation.

For all LA’s / CCG’s to contact families impacted by this decision to explain what is expected of them and what additional support will be offered to families

A briefing to be made available explaining the science behind the decision making and how it has been applied.

While we await clarification, we would encourage families to speak to their GP or known health lead to discuss any concerns and to contact adult social care if additional support is needed. PACC will also be contacting Shropshire Council and Shropshire CCG to highlight the need for additional support to be made available to families impacted by this change in guidance. 

The Guidance for those identified as 'extremely clinically vulnerable' can be found at 


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