Thursday, January 27

For people with learning disabilities, “Freedom Day” was nothing like that | Saba Salman

“FFreedom Day ”was a fallacy for people with learning disabilities and their families. While much of England eagerly anticipated the lifting of restrictions on Monday, little thought was given to how people with learning disabilities, like my sister Raana, would return to ‘normal life’.

New research shows that people with learning disabilities are eight times more likely to die from Covid and five times more at risk of hospitalization. The study, conducted by the London School of Hygiene and Tropical Medicine, the University of Oxford and Public Health England, is the latest evidence, if necessary, that Covid accumulates disadvantages for those already marginalized. The risk is even higher for people with learning disabilities of black, ethnic and minority backgrounds.

Even before Covid, the health inequalities faced by this part of our population, 1.5 million people in the UK, were clear. Poorer health care means that people with learning disabilities die more than 20 years earlier than others.

The fact that people like Raana were off the national “freedom day” radar is further proof that the government treats disabled people as expendable. Take the fact that the government was slow to prioritize the group for vaccination, despite compelling evidence of the increased risk of death. And it was only a few days ago that a new guideline finally recommended that children over the age of 12 with severe neurodisabilities, Down syndrome, immunosuppression, and multiple or severe learning disabilities be allowed the Pfizer vaccine, along with those 12 and older in the same home as immunosuppressed people. .

According to estimates by Chris Hatton, professor at Manchester Metropolitan University and principal investigator of the The coronavirus and people with learning disabilities study, almost 40,000 people with learning disabilities stay unvaccinated. This may be due to health risks, needle phobia or lack of information. Hatton says of her research: “Throughout the pandemic, individuals and families have consistently reported that they feel forgotten and abandoned. Those who live with minimal support, especially younger adults, are less likely to have been fully vaccinated. “

The fact that Raana has not hired Covid so far is largely due to the staff at her supported living center, combined with personal care, in Hampshire. Despite the essential role of supported life personnel during Covid, this type of care is an afterthought for the government. Covid’s guide to a supported life was months late, along with PPE and testing. Mandatory vaccination is on the horizon for nursing home staff, but not for supported living.

My family also struggles with the new responsibility of personal responsibility when it comes to wearing masks or avoiding unvaccinated people. Making quick judgments about risk is complicated enough, but unimaginably stressful for someone who finds communication difficult and needs more time to make decisions. While I can barely follow the mixed messages from the government about the restrictions, for my sister this is impossible. Disregard for disabled people is reflected in the absence of fully accessible, centralized, and widely publicized information about Covid. Better information would alleviate some of the anxiety experienced by individuals and families. The pandemic has already had a profound effect on my sister’s mental health. This stems from bouts of itching, nausea, and the barrage of text messages seeking reassurance on visiting dates.

The cost to families and caregivers is enormous. According to the Coronavirus and People with Learning Disabilities study, 90% of the 272 family caregivers or salaried staff surveyed between April and May said that their health has been negatively affected by their support role. Connor Corcoran, 20, is autistic, has learning disabilities and suffers from Crohn’s inflammatory bowel disease. His sister Sammie describes the devastating impact of not having face-to-face contact and his brother’s isolation during the confinement at his parents’ home in Manchester: a room with me. He has forgotten how to be with people. “She adds about the lifting of restrictions:” Returning to normal does not end restrictions for my brother by messages such as not mixing with unvaccinated people. If we follow him correctly, it is almost as if he had less freedom than before. “

Even if people can resume their pre-Covid activities, many of them have stopped or are now unaffordable. As guardian of his autistic and learning-disabled problem, Rashmi Becker knows that the 51-year-old wants to return to his swimming, gym and trampoline lessons in North London. But entertainment providers have introduced prohibitive charges or say they cannot hold sessions due to high demand or increased risk. Becker says she feels anxious and guilty for not helping her brother do the simple things he loves. “My concern for ‘freedom day’ is that it will benefit people with means and ability without protecting the rights and freedoms of disabled people like my brother.”

This new landscape faced by people with learning disabilities and their families is in addition to the years of successive governments that neglected the social care that people with disabilities depend on for their daily lives. If ever there was a need for the government promise national disability strategy (to “make practical policy changes that strengthen the ability of people with disabilities to fully participate in society”), it is now. However, there are still no signs of the plan, which was originally scheduled to be released in late 2020 and then rescheduled for early this year.

Shaun Webster, a Leeds-based human rights activist with a learning disability, says of “Freedom Day”: “It’s too rushed. I don’t feel safe on trains. Now I feel more vulnerable. We are at the end of the queue again. “As the country opens up, many people with learning disabilities and their families will feel that it is shrinking. Or as Webster puts it:” It is not ‘freedom day’ because it gives freedom for some people while taking it away from us. “

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