My name’s Saeed and since August I’ve been campaigning with Sense and other families caring for disabled adults, calling on government to reintroduce the community services that stopped as a result of the pandemic.
Today I’m handing Sense’s open letter, supported by families and over 1000 members of the public, to Secretary of State for Health and Social Care Matt Hancock. I’m asking him to meet with us to discuss an action plan to support disabled adults and their families through the second wave of the Coronavirus pandemic.
Many community services that stopped when we experienced the first lockdown, still haven’t been reinstated and families like mine, caring for disabled adults, continue to be forgotten about in the government’s plans. Going into the second lockdown, this needs to change.
Like many families caring for disabled adults throughout the pandemic, my family has been under great strain as we had the usual support for our son, Azhar pulled from under our feet without warning.
Azhar has complex disabilities, which include autism, severe learning disabilities and epilepsy. He used to attend a local day centre where he took part in fun activities in a safe and supported environment, while me and my wife got some respite.
When the pandemic hit, the day centre closed, and we were left to take on all of Azhar’s care needs. This put a great strain on the household, including Azhar’s 18-year-old sister and 13-year-old brother.
We were suddenly in a very difficult position. The schools closed, so the kids were back with us 24/7 and having Azhar at home 24/7 meant ensuring there was always someone there to provide for his needs – supporting him with dressing, eating, bathing and toileting. It’s taken quite a toll on the wider family – and then, of course, you’re worried that you’re not giving enough attention to the rest of the family.
Azhar’s routine has changed and he’s not doing the things he normally enjoys with the day centre, like visiting parks and the cinema. This is frustrating for him. I was the only one that left the house for many weeks, and that was only for groceries. We were worried – continue to be worried – about catching the virus. I just don’t know who would fill the caring void if we got ill.
Support through the second wave
We’re lucky that we had some support reinstated in the summer, but we’re still waiting for respite to resume and many families are waiting for basic support to restart.
Sense’s survey with 1000 families, showed that 62% families have taken on extra caring responsibilities during the pandemic and 52% said it’s impacted their wellbeing. A third of families caring for disabled adults also said that they still hadn’t had any support reinstated.
Recent data from ONS showed that 50% disabled people who were receiving medical care before the coronavirus pandemic began, indicated that they were either currently receiving treatment for only some of their conditions, or that their treatment had been cancelled or not started. This is unacceptable.
We’re so grateful to everyone who has joined with us in supporting the #ForgottenFamilies campaign and signed the open letter. But now we need to see urgent action from government to ensure disabled adults and their families have the support they need through the next phase of the pandemic.