Page 10 - Community Living Magazine 34-2

self-advocacy

Self-advocacy fills the gaps as Covid-19 closes services

Research shows just how much self-advocacy groups have possibility of recreating the English
stepped in during the coronavirus crisis, says Jan Walmsley, network that died when the National
Forum folded in 2017.
who also finds moving support online surprisingly successful One group enjoyed online chats with
self-advocates in other countries, while
another started a much-requested
year ago, I argued here that I was not alone in believing that it was Sunday social. In exceptional cases, staff
self-advocacy was changing from a not possible to connect remotely with delivered food parcels and medication.
A “nice to have” to an essential people with learning disabilities – even More saw their role as showing people
contributor to wellbeing for many. though roughly half of my Facebook friends where they could get help.
Since then, coronavirus has wrought are self-advocates. How wrong we were.
dramatic change – and few people have Efforts by self-advocacy groups to Formal guidance, fun ideas
been as seriously affected by this as those acquire laptops through donations and to Most groups produced regular
with learning disabilities assist people to get online have really newsletters, with the latest guidance in
It is time to look again at the role of paid off. There have been chats, coffee an easy-read format (not something the
self-advocacy groups during the pandemic mornings, discos, parties, quizzes, authorities took seriously), as well as
and, thanks to All Wales People First, exercise classes… not to mention online ideas for activities, such as local walks.
Learning Disability England and research by committee meetings. One self-advocate This work is mostly unfunded and often
the Open University, we know much about who chairs meant redirecting money from
how they have been filling the gaps. elsewhere with funders’ agreement.
As many readers know, people with In Wales, self-advocacy opened up
learning disabilities are particularly ways of communicating with the
vulnerable to having their lives government.
damaged by pandemic restrictions All Wales People First collected
through reduced staff contact, sudden members’ stories and used these to
changes and limits to routines and inform the Welsh government
activities and difficulty in understanding about the impact of lockdown and
and adapting to measures such as to lobby for change, including for
self-isolation and social distancing. more consistency among service
Wellbeing is at risk from loss of providers whose (mis)interpretation
contact with family and friends, day of the rules was making life
services and voluntary roles, and the unnecessarily restricted for some.
reduction or withdrawal of care However, it is important not to
packages. Some people have been paint too rosy a picture. Many
unable to go out because they live with people are on the wrong side of the
shielded residents. Stories were collected to show the Welsh digital divide, and not just for
The Open University interviewed people government the effects of lockdown financial reasons.
from 11 self-advocacy groups in England For some, it is a matter of confidence in
during July 2020. It found they were going board meetings commented how being in the absence of someone sitting next to
to great lengths to fill the gaps to provide control of the mute button made his job them. Some support staff were
support at a distance. much easier. discouraging, fearing online abuse or
One interviewee said: “What we were Most also used online meetings to simply not willing to share home facilities.
doing is picking up things that people are discuss the latest Covid-19 guidance. One Some families lack confidence so are not
saying that aren’t being picked up by the group arranged for a nurse to join a call to able to help. People also say digital does
providers and the council.” explain how health activity had migrated not make up for the loss of face-to-face
The outstanding message was the need online, how to make appointments and contact, activities, holidays and other things
to keep people connected, inform, what to expect from doctors. that make life worth living for everyone.
protect mental health and give them a Staff and self-advocates were able Finally, the biggest question: if self-
reason to get up in the morning. to help with booking appointments advocacy groups have filled so many gaps,
Several organisations set up phone online, welfare benefits assessments and what happens where there is no group?
buddy rotas for weekly chats. The buddies emotional issues. Who is providing the connectivity,
were supported by dedicated staff and had Self-advocates and staff said sharing support and advice? I do not have the
access to resources so if someone was, for experiences was helpful. It was important answer but this question needs to be
example, lacking food or medication, the not to trivialise what was happening and addressed urgently. n
buddy could help to set up local support. for everyone to know “it’s OK to not
be OK”. Rouse L, Tilley E, Walmsley J, Picken S (2020)
Happy to be proved wrong Learning Disability England hosted Filling the Gaps: the Role of Self-Advocacy
Groups in Supporting the Health and Wellbeing
Much support to keep connected has regular friends and family get-togethers. of People with Learning Disabilities
migrated online in ways that had been English self-advocacy groups made Throughout the Pandemic. Milton Keynes;
unimaginable and unimagined before. contact with one another, opening the Open University

10 Vol 34 No 2 | Winter 2021 Community Living www.cl-initiatives.co.uk