What about the families who are still self isolating?
Sarah*, a mum of two children affected by a rare genetic condition shares her experiences of Covid-19.
When Covid-19 first appeared I obviously had the same concerns everyone else does with disabled children … Will it affect my child? Will they be okay? Do their vulnerabilities make them more at risk?
I scoured the guidelines for self isolating and saw nothing of concern, but was still mindful that plenty previous hospital admissions meant I knew my kids were more at risk from illnesses than other children so I would be careful.
Then one day the category ‘learning disability’ popped up in the list. Why?
I work for a charity that supports families affected by rare genetic disorders and as part of my remit I’m responsible for putting out information and signposting about the Covid-19 epidemic so I started looking. I started to read the statistics. Four times as many people with learning disability die from Covid-19 in hospital than those without. Some people with a learning disability were being refused treatment. Then I started looking at the guidelines for people with neurological disorders, genetic conditions, respiratory conditions, neuromuscular conditions. Again and again we were ticking the boxes to STAY AT HOME. So we did.
But we aren’t in the extremely vulnerable group. So no letters, priority shopping, exemptions from work or school. But I was still totally cool about it, we can stay in. Wait for news. Wait for new guidance.
And then our category disappeared. We just disappeared. New guidance came out for shielding. New rules. But the self-isolators disappeared. No-one talks about us. No-one knows we are still here. ‘But you aren’t SHIELDING’. It’s like the new #disabilitybingo … You’re not THAT at risk … You’re not SUPER at risk.
I’m tired now. I’ve been at home three full months on my own with three children. Two have a learning disability, visual impairment, mental health needs and challenging behaviour. And I have a toddler. My partner can’t visit as he is a keyworker and would put the boys at risk. Granny is self isolating and we are looking after her. Our carers can’t come in. There is no school, no nursery, no clubs groups or activities, respite is closed. Normally we have three carers, a tutor, a cleaner, respite and support from family and friends. Normally we get by. I’ve had to give up working because I simply couldn’t do it and there is no end in sight for us. Even if we can go back to school and nursery it will only be part time. What happens to my older son who wasn’t in education anyway? Who knows?
I’m in Scotland. The government here are really chuffed because they’ve secured an extra £500 for carers. Well not all carers. Carers who get Carers Allowance, which I think is about 30% of all carers. And not me.
They also said that social services should also allow budgets to be spent flexibly during lockdown where normal support services are suspended. Our team didn’t get the memo. No help for us. A great big fat budget with our name on it, but I cant use it. Maybe to replace one of the ipads my eldest bounced off the wall. Or help with replacing the car that helpfully died on us during lockdown. Or for frankly anything that would give me ten minutes peace or prevent another trip to A&E.
And all of us know that the next thing that awaits us after lockdown is ‘you managed fine without a budget for six months so we are cutting it’. All of us fear this, I have many friends in the same boat.
The weekly emails asking me why my son, who requires full time 1-2-1 support to access education isn’t doing the work allocated to him on TEAMS, are particularly welcome. I’m supposed to fit that in too apparently.
And now its Carers Week. If I see one more post saying ‘remember you’re a person not just a carer’ I might scream. We value carers, carers are the backbone of our communities, shout the posts. But where is the help? A £30 Covid grant from the local carers centre? Thanks. I know I should be grateful …
I’ve hit the wall now. Getting through three months relatively intact was a pretty big achievement I think but I’m done now. Too tired. Too sick of arguing. Too sick of being invisible. I’m not even angry for me. We have done relatively okay, we still have some income, we have a roof over our heads and food in the fridge and my children are not sick. There are MILLIONS of families less well off than us.
I have much to be thankful for. Maybe when I am not so tired …
How has the change in guidance affected your family? Let us know using the hashtag #stillshielding or by emailing Covid-19@geneticalliance.org.uk.
*name changed.