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inclusion
‘We are one’: the only way to be Living a life well, not just well cared for

Rich relationships can develop between people with disabilities and their personal assistants
under a cooperative model of care, which makes life enjoyable and work rewarding. John
Roberts describes the genesis of a new model of user-led care
“ would like someone who is good fun to Passing on our learning

As a research project, we are working to
be around,” says Sam Cooper.
I Seventeen months into the life of
of the north-west with different
North West Care Cooperative, it is this develop care cooperatives in various parts
phrase that sticks in my mind. demographics and client groups from
Cooper* is 20, has a learning disability those of our pilot.
and is a user member of our pilot We are also beginning to collate our
cooperative in Chester. He was describing learning in the form of a project
what he wanted from a personal evaluation so we can create a toolkit that
assistant (PA) and he and his mother can be passed to others. This learning is
Julie* (his suitable person) captured substantial.
it when explaining why they joined As care cooperatives are potentially a
the cooperative. People and their assistants can become close sustainable means of providing high-
I find this profound as it reflects a companions under the cooperative model quality care, our focus is on increasing
choice to live a life not well cared for, but their number and for each cooperative
rather a life well lived. people whose care is provided in their member to reach the 3,500 or so care-
The skills and qualifications required by own homes via direct payments or hours per month needed to achieve long
anyone applying to be his PA are not only personal health budgets. term sustainability.
a level 2 care certificate and DBS NWCC deals with the day-to-day care While this increase could be achieved
clearance but also an ability to help him administration while cooperative relatively quickly by engaging a small
enjoy his life, with fun, positive members (the disabled people) control number of clients with significant care
experiences and a rich relationship. and direct their care as NWCC directors. packages, it seems likely that this growth
It was with that thought in mind that The people with disabilities do not will not be complete before the project
our journey started around a year and a profit financially from their role as funding ceases. We are therefore putting
half ago. cooperative directors (and cannot as they more focus on how we can bridge the likely
are using public money), but benefit from gap between the end of the project and
Piloting a different model of care having a voice in directing their care. the point where we become sustainable. n
A consortium of organisations in the With our cooperatives deliberately kept * Names have been changed
north-west led by disabled people small, this voice is significant, and
secured funding to support North West members take out only whatever they put
Care Cooperative (NWCC), a two-year in, so the cooperatives can handle “ Members take out
project to test, develop and gather individual care packages of different
research on cooperative models of care financial sizes. only whatever they put
for disabled people. And, by bringing disabled people with in, so cooperatives
These organisations identified that similar needs together, NWCC offers peer can handle individual
people with disabilities who wanted the support, kinship and even friendship.
choice of a life well lived had no option The PAs in each cooperative work as a care packages
but to become a direct employer, which self-managing team for NWCC and l The North West Care Cooperative ”
many of them did not feel ready for. likewise enjoy peer support, kinship and
The alternative they had was to yield friendship. As members of a small team,
choice and control for a life well cared for, they are known by all the people with is a consortium of Cheshire Centre
which would mean using mainstream care disabilities and provide cover and for Independent Living (project
agencies or the unthinkable – a return to resilience for each other, seamlessly and host), Breakthrough UK (Manchester),
residential care. without affecting care quality or person/ Disability Equality North West (Lancashire)
Our hope is that this research project carer relationships. and Disability Association Carlisle
can pump prime a sustainable model As personal assistants are employed by and Eden. It is funded by Disability
for care. NWCC rather than by individuals, we are Research into Independent Living �
James Petts/Wikimedia Commons Seventeen months in, and we have now and less costly than that of a traditional @ nwcarecoop@gmail.com
Learning (DRILL) and the Big Lottery.
able to offer good employment conditions
and rates of pay and therefore wellbeing.
A small company
Our organisational structure is flatter
f @carecooperatives
formed ourselves into a not-for-profit
company.
t @NWcareCoop
care provider. This means we can pay PAs
relatively well and provide a competitive
The purpose of NWCC is to provide
services to small, user-led care
alternative model of care for disabled
John Roberts is registered manager at the
cooperatives that bring together disabled
www.cl-initiatives.co.uk people that is attractive to commissioners. North West Care Cooperative
Community Living Vol 33 No 1 | Autumn 2019 23