Learning disability: a battle for information

Throughout the coronavirus pandemic, people with a learning disability have been left behind in the provision of support. In the new normal, what needs to change to better assist the learning disabled community? People with a learning disability have their say.

Since March 2020, support and guidance for people with a learning disability has often been hard to understand, leaving this group overwhelmed and feeling left behind.

“The COVID crisis has had a devastating impact on many people with a learning disability, who have died from COVID at far higher rates than the general population, been subjected to blanket Do Not Attempt CPR (DNACPR) notices, and have been living in supported living services that were the last to receive PPE and regular testing,” reveals Edel Harris, chief executive of learning disability charity Mencap.

Vijay is a campaigns assistant at Mencap and has a mild learning disability, throughout the pandemic he has felt that people with a learning disability aren’t being listened to.

“There has been [information] the government has given out that has not been easy enough to understand for people with a learning disability to be able to follow the rules,” explains Vijay.

ISOLATION

Brendan attends Harrow Mencap

For many people with a learning disability, not being able to fully understand continually changing rules and restrictions has meant feelings of isolation.

Brendan has a learning disability and is an active member of Harrow Mencap. For the last year, Brendan has seen his mental health deteriorate as the social events he would usually look forward to were stopped.

“I have been more depressed because there’s not been anything to do,” admits Brendan.

“I can’t see any of my friends or I can’t go and do my usual activities in Harrow or London; I have been so depressed.”

Similarly, as Vijay missed out on daily interactions with his colleagues at Mencap, he felt socially cut off with no activities to relieve stress or look forward to.

“It’s been really challenging for me,” emphasises Vijay. “Before, it would give me that social security knowing that I could avoid stress with the activities I was doing. I was part of the Mencap football team and obviously during the pandemic that stopped.”

EXEMPT

Vijay is a campaigns assistant with Mencap

Ever since he started working from home, Vijay has experienced ups and downs with his mental health, but has been trying hard to communicate with people virtually.

“People with a learning disability have struggled to adjust to different situations and if they don’t live with their families they feel really lonely living by themselves,” Vijay adds.

Part of this sense of isolation stems from public misunderstanding around learning disabilities and exemptions to government rules, like not having to wear a face mask in supermarkets or on public transport.

“We’re finding people with a learning disability were told they didn’t have to wear face coverings. The problem with this is not just confusion, it was people in the public judging them,” reveals Vijay. “The public need to know that we’re all human beings trying to pick everything up.”

Now, Vijay would like to see better information shared with the general public to avoid misrepresentation and potential hostility in the future.

“I believe that people within the public need to be educated and know the challenges that people with a learning disability face and that they’ve been going through these challenges over the last year through the pandemic,” says Vijay.

HEALTHCARE

During the pandemic, people with a learning disability have also been subjected to blanket Do Not Attempt CPR notices, drawing attention to the need for better education in the healthcare industry.

“With healthcare I feel that people with a learning disability haven’t had the reasonable adjustments they need when in hospital,” explains Vijay.

“Things like not getting extra time and support to understand things with nurses. They need someone with them to tell them to speak in a clear and accessible way and not speak in jargon.”

Vijay feels that this treatment stems from lack of knowledge and awareness around learning disabilities, he says: “I think the reason why medical staff don’t see issues or problems is because they don’t know the person, so don’t know how to deal with a person.

“We need to give hospital staff early awareness training to recognise when they see someone with a learning disability and how they can them give support.”

RESTORE

During the pandemic, seven in 10 people with a learning disability had their support stopped or cut with serious consequences, Edel explains: “Many have struggled to find accessible information about the complex and ever-changing lockdown rules, as well as facing barriers to accessing crucial health and social care support.

“Many have seen their support needs increase, lost vital life skills and suffered from loneliness and poor mental health.”

This has left people like Brendan feeling like they have been forgotten by the government.

“The government has not put enough in place for people with disabilities, some people won’t know how to cope, it feels like the government don’t care at all,” admits Brendan.

“We need more funding so people have support. For example, people talking to you, asking you how you are doing and what you need.”

Access to social care support is crucial for people with a learning disability, allowing them to live independent, healthy and fulfilled lives.

“The Government must urgently restore care services that were reduced or closed during the pandemic, as well as bring forward its social care reform plans and a longterm sustainable funding solution,” stresses Edel.

“This will enable many people with a learning disability to get the support they need.”

Moving forward out of the pandemic, people with a learning disability want to be seen, valued and understood. Without better support and education, feelings of isolation and improper support will prevail.

Easy-read guidance and further accessible content around the pandemic rules and restrictions visit the Mencap website.