Sense is calling on the government to resource local authorities to provide better support for disabled people who are cared for by their families.

A WREXHAM family is one of many to have experiences a reduction in support during the coronavirus pandemic.

The findings of a new survey by the disability charity Sense, has highlighted the plight of families in the UK caring for disabled adults during the pandemic, with over half (52%) saying the additional caring responsibilities they have had to take on has impacted their health and wellbeing.

Sense is calling on the government to resource local authorities to provide better support for disabled people who are cared for by their families.

The national survey of one thousand families caring for their loved ones at home, reveals that three quarters (75%) of families who have had their support and care reduced during the pandemic received no advance information, with 1 in 3 (34%) still waiting for it to be reinstated.

Gethin Plant, 19, from Wrexham is deafblind and has complex disabilities including epilepsy.

He attends a school which he stays at three nights a week and has a personal assistant providing 24 hours of 2 to 1 care a week and takes him out for activities in the community.

Gethin has also attended a number of Sense holidays which he really enjoys and gives his mum, Jane and her husband, Kevin (54), some much needed quality time with Gethin’s siblings.

Gethin lives with his parents, his sister, Elin (8), his brother, Aled (22), his eldest brother, Euan (24) and Euan’s fiancé, Charlotte (22).

As the lockdown took hold, mum Jane received a phone call from Gethin’s school saying that he had to come home and would not be coming back.

The direct payments were still coming in for the personal assistants however, one was supporting another individual full time and the others had their own childcare responsibilities. This left the family to assume all caring responsibilities.

Jane said: “Initially, it was nice to be all at home and get a walk during the day. But the ongoing effect has been really bad. Kevin and I have no time to be with each other.

“His sleep pattern just didn’t happen because he was getting no structure during the day and we both still had to work full time at home whilst supporting him.”

Gethin’s sleep pattern has also been greatly affected by this lack of routine and often goes to sleep in the early hours of the morning. Due to his epilepsy, Gethin require constant support which leaves the family little time to rest themselves.

Jane added: “We have had no sleep,” Jane says, “recently, he has been going to sleep at 5 in the morning and we have to get up and work.

“Our daughter has really struggled because she wants attention, but, unfortunately, work and caring responsibilities often take priority. Then she has schoolwork to do but you don’t have the stamina to keep that going. It’s hard on her.”

For the majority of the lockdown Jane did not have any contact with the Local Authority.

She said: “For weeks, they didn’t contact us until I went to them and said that I understand that there was some cover to use his direct payments to get things that will benefit his wellbeing.”

Sense, who conducted the survery across the UK, said the reduction in support has led to families denied access to vital local services, such as therapies and medical treatment (58%), daycentre and respite services (40%) and care support at home (31%).

Half of all families believe the government have failed to provide enough guidance and support, and one in two say they fear they couldn’t cope if there was a second lockdown.

Sense Chief Executive, Richard Kramer, said: “Everyone has had their life affected by this pandemic, but few have had a harder time than the families looking after disabled adults over the last five months. Many haven’t had a break from caring and feel isolated and forgotten.

“Devastating cuts to their support have meant they have suffered greatly during the pandemic and are now at breaking point.

“Disabled people’s needs have largely been forgotten, and families have had to take on greater caring responsibilities, with their health and wellbeing suffering as a result.

“Government must take action to reinstate the care and support that families need such as short breaks. We need to see clear and increased communication with disabled people and their families, and sufficient funding, support and resources to Local Authorities to flexibly deliver care and support.”

Sense is asking supporters to sign their letter, calling on the Secretary of State for Health and Social Care, Matt Hancock, to take action to secure and reinstate community services and support, such as short breaks for disabled adults and their families.

More information can be found online at www.sense.org.uk

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