DRILL funding paves the way for personal budget co-operatives

Five user-led organisations have secured £150,000 for a research project that will set up what it is believed will be the UK’s first cooperatives for disabled people who receive care funding through personal budgets.

The project, led by Cheshire Centre for Independent Living, aims to work with disabled people who receive personal care or personal health budgets and want control over their support but do not want to become a direct employer of their personal assistants (PAs).

It is one of 10 schemes across England, Scotland, Wales and Northern Ireland that have been handed funds in the latest tranche of awards from the five-year, £5 million Disability Research on Independent Living and Learning (DRILL) research programme.

Cheshire CIL (pictured) and its partners aim to set up two or three small user-controlled cooperatives in the north-west of England, each of which would act as a PA agency, pooling the skills and experiences of a small number of disabled people, and spreading the costs of employing PAs between them.

The hope is that each co-operative will begin with up to half a dozen disabled people pooling their resources and together employing a small team of PAs, with the PAs and the disabled people all being members of the co-operative.

The first co-operative is likely to start operating within the next six months.

The other four disabled people’s organisations (DPOs) involved in the project are Breakthrough UK, Disability Equality North West, Disability Association Carlisle and Eden, and Merseyside Disability Federation.

Tom Hendrie, head of policy and communications at Cheshire CIL, said the five DPOs, which cover Cumbria, Lancashire, Merseyside and Lancashire, had worked closely together for many years and were “really excited” about the new project.

He said: “The more control that is in the hands of disabled people the better.

“This falls between the model of lots of individual employers and the traditional model of an agency that is not run by people who use the services.

“More and more people are getting packages that are too small to employ someone.

“People may be getting only the equivalent of a couple of hours a week so they can’t find someone to employ directly and they are obliged to go to an agency.

“This is an attempt to bring together all those little packages and retain the kind of control that people would have if they employed people directly.”

He added: “If a PA goes off sick or on holiday at the moment it is quite hard to find a replacement without going to one of the traditional agencies.”

A co-operative model is likely to be particularly useful, he said, because of the social care funding crisis, with many disabled people who have been PA employers for many years now struggling with smaller care packages.

And because the co-operatives will be non-profit, costs should be lower.

Hendrie said the consortium would like to hear from other DPOs interested in setting up similar schemes.

DRILL has also announced nine other recipients of funding this week.

In England, The Alliance for Inclusive Education has secured £40,000 to lead a project to examine the impact of accessibility plans – introduced under the Equality Act 2010 – on inclusive education, and the possible gaps between what is set out in law and the practice of schools and other education providers.

The hope is that the research will explain a reported increase in requests for disabled pupils and students to transfer into special rather than mainstream education.

Black and minority ethnic people living with sickle cell disease (SCD) will lead the advisory group on a two-year research project, led by De Montfort University, to examine the “barriers and enablers to employment” facing people with SCD, with £100,000 DRILL funding.

The self-advocacy organisation My Life My Choice will co-produce a research project with the National Development Team for Inclusion, with £40,000 funding, looking at the barriers faced by people with learning difficulties in developing and sustaining sexual relationships.

And the Shaping Our Lives network of service-users, together with the University of Worcester and the Foster Care Co-operative, will work with four fostering agencies over two years to examine how to challenge the barriers that prevent disabled people from becoming foster carers, while co-producing a toolkit and detailed guidance, with £140,000 DRILL funding.

Carmarthenshire People First, in Wales, will work with My Life My Choice and People First Dorset, the Welsh community interest company Barod – which grew out of the Welsh People First movement – and Social Firms Wales to examine how to support self-advocacy organisations, and individuals with learning difficulties, to generate income and employment, through £150,000 of DRILL funding.

In Scotland, DRILL has provided £82,000 to fund a project that will seek to improve the design and “findability” of accessible toilets when travelling, which will be co-produced by the Scottish Alumni group of people with dementia and led by the Edinburgh Centre for Research on the Experience of Dementia.

DRILL is also providing £150,000 funding for each of three projects in Northern Ireland.

Disabled researchers will work on a project, led by the Mental Health Foundation, to co-produce a physical activity programme for people with mental health conditions.

A two-year project, led by the British Deaf Association, will investigate the barriers to the justice system faced by deaf people in Northern Ireland.

And Positive Futures will lead a two-year project to secure the right support within the criminal justice system for people with learning difficulties who have been victims of sexual violence.

DRILL is funded by the Big Lottery Fund, and delivered by Disability Rights UK, Disability Action (in Northern Ireland), Inclusion Scotland and Disability Wales.

It is believed to be the world’s first major research programme led by disabled people, and should eventually fund about 40 pieces of research and pilot projects.

The 10 grants were approved by DRILL’s central research committee, which is chaired by Professor Tom Shakespeare, who said: “I welcome this next batch of timely, targeted, transformative projects funded by DRILL. 

“From developing new social care models to improving access to the justice system for people who are deaf, these projects address some of the key barriers which affect disabled people’s ability to live independently across the UK.”