Lost in lockdown: Left behind

It’s been over six-months since lockdown started, and although for some there is the beginning of a return to some kind of normality, schools going back, offices opening up, for others lockdown continues like some never-ending groundhog day.

With the pandemic seemingly entering ‘Phase 2’ now, things look like they could get harder again.

Even for those who are beginning to see some light at the end of this most challenging of tunnels, the effects of lockdown continue to cause all sorts of difficulties for families of children with additional needs and disabilities.

A recent survey of parents and carers by the Disabled Children’s Partnership found that the situation in families through lockdown has, and continues to be, quite stark.

Parents reported that the level of care they were needing to provide has increased significantly, with 72% of parent carers saying they were providing ‘a lot more care compared with the amount before lockdown’.

Siblings were being drafted in to help too, with 68% of parent carers saying that non-disabled siblings were ‘providing a lot more care’.

All this in response to a collapse in the support offered to families, with half of parent carers saying that the extra support or therapies for their children that they had in place before lockdown had stopped.

For families that had received access to short respite breaks before lockdown, three-quarters reported that this respite care had stopped. Lockdown has been affecting assessments too, with two-thirds of families experiencing delays with assessments and approaching half of families saying that annual reviews had lapsed or been put on hold.

Consequences of these issues are serious, with half of families not seeking necessary medical health support for their disabled children, for themselves, or for their non-disabled children.

The overwhelming majority of families have seen a decline in the mental health of their children and themselves, with over half of families also saying that either their physical health, and/or their children’s, had worsened.

Families are facing financial pressures too, with a reduction in income affecting over a third of families, and increased costs impacting on nearly two-thirds. One in five families said they will go into debt as a result of lockdown.

It’s a stark picture, and one that many of us will recognise. The Disabled Children’s Partnership is using this data to lobby for acknowledgement of the situation that many families of children with additional needs or disabilities are facing, and for increased support and flexibility to help families.

If nothing else, this report shows that families that are struggling are not the only ones, the majority of families with children with additional needs or disabilities are struggling too.

It also shows us that there are people campaigning for us, trying to make a difference. Let’s cheer them on, share this data, and help to bring about change for all families.

You can see the full report from the Disabled Children’s Partnership, including many quotes from families that were asked for their views, here.

Mark Arnold, Director of Additional Needs Ministry at Urban Saints. Arnold blogs at The Additional Needs Blogfather. This article was re-published with permission.