People like my sister, who is in a supported living community, are being left in limbo with few activities and little support
Tue 6 Oct 2020 11.00 BST
Coronavirus has thrust us all into a new normal. Life has come to feel the same yet different. However, for some communities Covid has undermined their very ethos.
My youngest sister Raana, who has a learning disability, has lived in a supported living community in Hampshire for 10 years. We chose the charity that runs her home for its values. It creates a sense of belonging and purpose, focuses on abilities and is governed by the belief that everyone has the right to be involved in society.
Raana has been encouraged and supported to follow her creative passions and discovered new ones, from baking to weaving and ceramics. She has chosen her own staff, interviewed prospective employees and become more independent. Through tailor-made support she is a welcome, valued customer at local cafes, restaurants and shops.
But coronavirus restrictions are eroding this ethos of independence. We now meet Raana in the garden for “family visits” instead of sharing a cup of tea (made by her) in her home. We do not know yet how this will work in winter. Staff are currently exploring options, likely to include anything from heated outdoor spaces to designated visitor areas. The once-bustling shop and cafe run by the charity are now closed to the public. To avoid households mixing, singing, baking, yoga and educational or training classes are all on hold, as are group activities in the local town centre. Raana is limited to her house “bubble”, which consists of her five housemates and three support workers.
This loss of visibility, choice and control is at odds with the charity’s raison d’etre. My sister’s staff, who I admire enormously, have been creative with new on-site activities and seasonal crafts such as felting. Yet there is a palpable tension between their guiding principles and the pressure to minimise risk.
For an open and welcoming community priding itself on family involvement, the “no visitors” rule is hard to bear. With the shop and cafe temporarily shut, there is effectively no connection with the local community. The on-site bakery, where my sister made bread and cakes alongside her supported living neighbours and other local learning disabled adults, fostering friendships in the process, is also closed for now. There is a similar halt on social activities like Raana’s Monday night social club, because of the increased risk of infection.
Raana’s support workers are trying to keep up morale, but face the challenges created by Covid against an already difficult backdrop. There is still no automatic testing for supported living (care home testing is taking place, albeit with delays), no centralised system for supported living staff to get personal protective equipment and guidance that was delayed by five months, which critics say is not specific enough. Although welcome, additional government funding for frontline council services and the infection control fund for adult social care providers are inadequate.
Raana is not alone. “People aren’t getting to make their own decisions in their shared support settings so they are losing out on choice,” Scott Watkin, an adviser with charity SeeAbility, told a recent National Mental Capacity Act Forum.
A sibling from the north of England had to challenge her learning disabled sister’s support organisation to get permission for her to visit their terminally ill father. The sibling told me: “She’s lost months with him … rights and visibility are going backwards.”
Similar concerns were raised at a recent Learning Disability England (LDE) and British Institute for Human Rights online discussion about visiting during Covid-19. One woman’s care provider stopped her going to the family home she has visited fortnightly for almost 20 years. The government’s recent Covid-19 winter plan acknowledges the challenges of visiting restrictions but simply suggests care providers “find innovative ways of allowing safe contact”.
With a second wave imminent and winter pressures ahead for health and social care, good support is crucial, as is the need to protect people’s rights. We already know coronavirus disproportionately affects disabled people (figures from health and social care regulator Care Quality Commission show a 175% increase in deaths among learning disabled people during the pandemic).
I long for the pre-Covid visits to Raana’s home, such as the time her support workers held an exhibition to celebrate the creativity of the people they work with. I asked her to show me some of her ceramics. “Too busy,” she smiled cheekily. I wish Raana was busy in the same way now. I want days like that back again because they show what is possible in social care and inspire others to follow suit. We lose that to our detriment.
• Saba Salman is the editor of Made Possible: Stories of success by people with learning disabilities – in their own words and the chair of charity Sibs
