Claire tells us about her family’s experience of often having to juggle care, education, therapy and home working during the pandemic – and the resulting effects of these pressures. Tom is on the left in the photo, and Jack is on the right.
My name is Claire and I’m married to Ian with 2 sons, Jack aged 21 and Tom 18.
My sons both have Duchenne Muscular Dystrophy (DMD), a progressive muscle wasting condition which means both are full time powerchair users and reliant on 24-hour care. Tom also has some learning difficulties with autistic traits.
Prior to covid Jack was living and studying away from home at university doing a degree in Biology, whilst his brother had been attending a special school with a transition half day to a mainstream creative technologies college.
As a result of both sons being clinically extremely vulnerable they have not been able to attend their education settings. Whilst Jack’s university has been well set up for remote working, it has been less positive for Tom in a specialist setting – who has had an average 4-5 hours a week online, with Mom requesting work at other times. The impact particularly for Tom in lockdown has been a heightening of anxieties around routine and a loss of confidence in his abilities. He has lost out socially and whilst he does football and choir on a social platform, he finds the lack of physical social contact extremely hard and this has led to some ‘meltdowns’ and an unhappy Tom.
When covid hit in March 2020 until August 2020, we had to furlough all staff who supported our sons whilst we regrouped to navigate covid precautions. Tom at the time was in receipt of weekday morning children’s homecare and 15 hours a month direct payment. Both sons are now ventilated at night and use a cough assist machine provided by local health services. However, initially no-one helped us to navigate the journey with the PPE we needed, including getting high level FFP3 masks – which both support staff and parent/carers need.
Tom also moved across to adult services and now has 15 hours a week of direct payment and this covers private care to assist Mom, but we have been unable to spend the full entitlement due to no access to any community resources or school. Despite both sons now being fully vaccinated, we are restricted with access to services as centres operate on reduced covid capacity and some are unable to take new referrals.
We have had to manage weekly trips to hospital for a drug infusion delivered by portacatheter. This has been the main face to face intervention as other appointments with specialists including respiratory and neurology have gone on via video or phone. Covid has been used for an excuse for lack of communication and follow up when it is actually just chronic cuts to health and social care.
My husband and I have only been able to leave the house together 4 times since March 2020, we have lost valuable hospice respite which we are only now being able to access again. We have, like other families, lost valuable time to make memories and return to normal stuff – like meals and cinema. Juggling care, education, therapy and home and husband home working has been tough, relentless and still is. We are the forgotten.
The challenges are hard to navigate and this is why I support the DCP’s campaign for a specific COVID-19 recovery plan for disabled children and families across the country.
To join with Claire and the Disabled Children’s Partnership in our campaigning for a fairer society for disabled children and families, sign-up to become a campaigner with us.