The 1.5 million learning disabled people in the UK are already among society’s most segregated people. Communities must not forget them
Tue 24 Mar 2020 08.00 EDT
Last modified on Tue 24 Mar 2020 08.22 EDT
Coronavirus has made enforced separation a universal experience, but there are additional and far-reaching challenges for learning disabled people and their families.
I cannot visit my youngest sister, Raana, who has fragile X syndrome and lives in supported housing in Hampshire. My family has no idea when we will next see her.
Social distancing, self-isolation and a lockdown for the over-70s will have a seismic impact on Raana (our parents are in their 70s, our father has a lung condition). My sister’s social contact is now limited to support workers paid to care for her and her learning disabled housemates. She uses text messaging but dislikes phone calls and writing letters.
The past week has seen thousands joining community efforts to help older neighbours. We need similar attention on the UK’s 1.5 million learning disabled people. This is not because my sister’s disability makes her “vulnerable”, but because she is already among society’s most segregated people. The health inequalities experienced by people with learning disabilities are well documented, and research suggests learning disabled people are seven times as likely as their non-disabled peers to be lonely.
What will happen if her trusted support staff fall ill or she has to self-isolate? What if she needs help with personal care?
“It’s all the uncertainty that’s difficult … with staying away [if you’re a relative]. The problem is that you isolate people, and loneliness is a killer,” says Gary Bourlet, who has learning disabilities and is co-founder of charity Learning Disability England.
Raana thrives on consistency and routine, including dance classes, baking workshops and weekly shopping. Yet coronavirus means services are closing and people’s movements are restricted. Online equivalents are not the same and do not always appeal if you have communication difficulties. What will happen if her trusted support staff fall ill or she has to self-isolate? What if she needs help with personal care?
While necessary, the coronavirus bill has potentially devastating implications for people like Raana. Support may be restricted to meeting essential needs, and emergency volunteers could replace care staff. This raises concerns about safeguarding and care quality, and, as families, campaigners and care providers warn, the basic right to support may vanish.
Learning Disability England has written to the health secretary, Matt Hancock, calling for the bill to be amended “to make sure the rights and entitlements of all disabled adults and children are not undermined”.
Rhidian Hughes, chief executive of the Voluntary Organisations Disability Group, warns social care might temporarily become “purely functional”, instead of “support focused on outcomes that enables people to be healthy and maximises their choice and wellbeing”. It is clear that radical, short-term changes will have lasting negative repercussions.
Given that people with learning disabilities get poorer care and die earlier than those without, what will happen if Raana herself falls ill? There have been concerns that critical care guidelines issued by the National Centre for Clinical Excellence (Nice) during Covid-19 might effectively make it harder for learning disabled people to get intensive care. Barrister and disability rights specialist, Steve Broach, has warned the guidance must be clarified.
Even though my family admires and trusts my sister’s support staff, it is still unsettling to suddenly be physically distant. Clare Kassa, chief executive of the charity Sibs, which supports siblings of disabled people, and of which I am a trustee, says: “Siblings fill in so many gaps for services – like outings, breaks, family occasions. But also the more subtle ones like vigilance, keeping an eye, safeguarding. When you can’t be there, what happens? How do we siblings keep our brothers and sisters safe in such unprecedented times?”
We are feeling our way as the current crisis puts further pressure on an already fragile support system and exacerbates the marginalisation experienced by people like Raana.
Communicating clearly to my sister what the virus is is vital. Her support provider has been doing this and has protective equipment in place like masks and gloves as part of its contingency plan. Raana has been texting me “Hope all better soon” and asking about the kids, so she knows something is up.
Individual providers are creating their own guidelines on how to explain to a person with learning disabilities the importance of washing their hands – for example, using picture stories. Many easy-read and accessible resources have been produced in the past week by a variety of organisations.
As a family, we are redoubling our efforts to stay in touch, by posting Raana more notes or cards, for as long as the mail service is reliable. My sister turns 31 in June and we always makes a big fuss of her birthday, with 10 of us gathering to celebrate, including the nephews and niece she dotes on. That is highly unlikely this year, which is distressing for us all.
This week, Raana’s support workers are helping her to try out video calls. I hope it works, as this might just help us ride out what is going to be a long, fearful and lonely time not just for Raana, but for her loving family too.
• Saba Salman is a journalist specialising in learning disabilities and editor of the Made Possible, a forthcoming book of essays written by learning disabled people
Source: https://www.theguardian.com/society/2020/mar/24/my-sister-learning-disability-cant-visit-coronavirus
