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