Families with vulnerable sons and daughters have been left adrift during the pandemic. We fear what will come next
Wed 4 Nov 2020 11.25 GMT
Last modified on Wed 4 Nov 2020 11.40 GMT
My younger son, Thomas, turned 40 in June. But the big party to which his many aunts, uncles and cousins had been invited had to be cancelled. Thomas has Down’s syndrome and a severe learning disability and lives in a residential home; until recently, he hadn’t been able to see his family since early March.
His father and I have been able to keep in touch with our son via video calls facilitated by his key worker, and after the first lockdown eased, we were able to see him twice outdoors. His siblings and nephew and nieces saw him too. But now the visits have been put on hold again.
We are fortunate that Thomas seems to have adjusted to his new routine, but we are concerned that he is not able to maintain the social contact he was used to with his family, nor take part in activities such as going to shops and cafes. Most of all he has missed going to Wolves’ home matches, which is an important part of his life. These restrictions risk him losing skills.
Now the virus is surging again and another lockdown approaches. While attention has been given to the plight of older people needing care during the pandemic, there has been much less focus on adults with a learning disability, autism and/or complex needs; vulnerable people who are often completely dependent upon others for their safety and wellbeing.
Other families have faced much greater challenges than ours. Some have not been able to see their relatives at all since the start of the spring lockdown. Three of the parents I am in touch with, all mothers now on their own, have not seen their son or daughter since the start of lockdown 1. One told me: “He must think that I’ve died, like his father.”
Others decided to bring their child back to the family home for the duration of the first lockdown, finding themselves faced with months of caring with no support.
Robert is a thirtysomething young man with complex needs who, before the first lockdown, had two-to-one support, attended a day service every weekday and had residential respite many weekends. A few days before lockdown 1, all this support stopped overnight with no contact from social services. Thankfully, most of the support is now back in place. It is also fortunate that Robert’s mother, who is over 70, is in good physical health, is resilient and has some family support. I know I would not have coped.
We have been lucky to have the video calls with my son, which have reassured me that he has been fundamentally OK, although I am concerned that the continuing isolation may have a detrimental long-term impact. But even this contact has not been possible for everyone, particularly those with the most severe disabilities, who are not able to communicate in this way, or who would be too distressed.
One young woman was very distressed at not being able to go home for visits as usual; others have been confused and upset by the halting of activities and unaccustomed confinement. We have all experienced some of this, but how much more difficult is it when you can’t understand why?
All families worry that the virus may get into the home, that staff may not be coping, that their son or daughter may need medical treatment that was not accessible. They’ve all had to navigate considerable bureaucracy before being able to see their son or daughter. Some families still have not been able to, and the prospects of it happening any time soon are fast receding.
These worries, and the loss of contact, concern about loneliness, loss of services and, for many, a lack of communication from care providers, have all added to the stress experienced by families. But my greatest concern is for those who, like Robert’s mum, are caring at home for an adult with challenging behaviour, and have suddenly found themselves abandoned with no support.
So what next in lockdown 2? All those looked after and supported by adult social care should be prioritised at least to the same extent as vulnerable elderly people. Care providers should be financially supported to compensate for the unprecedented extra demands of the situation, and personal protective equipment, prompt testing and timely tracing should be delivered as promised. Family carers must be acknowledged and supported as an urgent priority if services are closed down because of changing regulations.
Social services may have been relieved of some of their legal responsibilities during the pandemic, but should at least retain the moral responsibility to check whether those with the most complex needs and their carers are coping.
Looking after all the people in this extremely vulnerable group will help to minimise the damage inflicted on their lives, as well as fulfilling our duty as a civilised society to care for the most vulnerable members.
Madeleine Cowley is a former trustee of learning disability charity Hft
Source: https://www.theguardian.com/society/2020/nov/04/our-adult-son-learning-disability-coronavirus-surges
