The drive for equality and self-determination is stalling

Fazilet Hadi, Head of Policy, Disability Rights UK @ DisRightsUK

TLAP, has developed ISFs to transform supported living for people with a learning disability. People now choose their provider and work together to shape their care and support on a day-to-day basis. Demand now outstrips supply, so the council is increasing the number of providers using ISFs.

Returning to direct payments, through a series of reports (two with the Local Government Association), TLAP has shown how councils can improve: through cutting unnecessary process; supporting practitioners; and, above all, by co-producing with people. This is distinctly achievable, as Leicester City Council amongst others has demonstrated.

We are now receiving a growing number of requests to help councils improve their direct payment offer, using TLAP’s Making it Real as a basis for having ‘improvement conversations’. This goes to show that with concerted effort and co-production, change is possible. Councils need to re-commit to improving and increasing direct payments as part of an overall renewal of personalisation. Not only is it possible, it is the right thing to do.

The disabled people’s movement fought hard for direct payments and achieved victory through the Community Care Direct Payments Act 1996. The fight for direct payments was as important as that for civil rights, as it gave disabled people choice and control over how our care and support needs were met. For us, care and support isn’t just about washing, dressing and eating, it’s about the support we need to engage in life and connect with others.

The use of direct payments has been reducing over the past five years. This is a backward step for personalisation and a sign that the drive for equality and self-determination for disabled people is stalling. We have to ask the question, why when the number of working-age disabled people is increasing, would the number receiving direct payments fall?

Making sure that people providing care and support are part of the household and that the times they work, the support they provide and the way they provide it fit personal preferences, are things that direct payments enable. At best, there will be warmth, trust and friendship between disabled people and the personal assistants providing care and support.

So why, when direct payments have so much to offer, are they not being taken up? Social service departments must do a whole lot more to make direct payments a positive option. They need to tell disabled people about the amazing advantages, ensure disabled people’s organisations are funded to provide advice and support on direct payments, reduce ever-rising care charges, increase the pay rate for personal assistants, enable the recruitment and training of personal assistants and reduce bureaucracy.

Over the past decade, disabled people have experienced reductions in public services, inadequate benefit levels, disproportionate deaths and exclusions during COVID-19 and are now being hit by the cost-of-living crisis through energy and food inflation and increasing housing costs. It is vitally important that we have access to high-quality care and support to enable us to live with dignity and independence.

A test of services is whether we would choose them for ourselves, and I strongly suspect that most of us would want to opt for the choice and control over our care and support that direct payments provide.