It doesn’t feel like a great time to be disabled. We’ve seen huge changes in a wide range of provision, from benefits to social care. Earlier this month the government confirmed the closure of the Independent Living Fund (ILF), which was set up to support severely disabled people to live independently (yes, the clue is in the title).
The ILF has enabled people such as me to learn, work, volunteer, play and live in a way that has met our needs and allowed us to be full and active members of the society we live in. Its closure has been delayed because of a court case that found the government hadn’t taken into account the full impact of the closure on people who use the fund. The court also raised concerns about future funding for independent living, warning that without adequate funding, disabled people may be forced into residential care against their will.
The court’s findings, sadly, didn’t surprise me. The government’s narrative on the subject of support for disabled people has been driven by arguments concerning austerity, rationalisation and better value for money. Its own impact assessment says that the closure of the fund will have an “adverse effect” on claimants.
So what will happen now? Around 18,000 ILF claimants will be at the mercy of hard-pressed local authorities, who have said that they’ll not be able to provide the same level of support that people have had under the ILF.
The impact will be huge. The fund supports some of the most disabled people in the UK, including people with severe learning disabilities, who make up a third of the fund’s claimants. I fear this group in particular are the most likely to lose out under the new arrangements.
People with learning disabilities are one of the most marginalised groups in our society. While progress has been made, we have such a long way to go. Yes, the horrors of Winterbourne View, the private care home where 11 care workers were found guilty in 2012 of ill-treatment and wilful neglect of patients, are behind us, but the programme of developing services to replace those similar to those of Winterbourne View is severely delayed. In the meantime, cases such as that of Connor Sparrowhawk, who drowned in the bath at a (costly) NHS unit similar to Winterbourne View last year, continue to haunt us.
Compare that to the experiences of those who have had support from the fund. They, and their families, talk of how it has changed their lives, expanded opportunities, improved health and wellbeing and, in some cases, led to training and employment opportunities.
We want to live in, and be part of, our communities; not just survive on a poorly funded regime rooted in “clean and feed” provision. We must ensure there are mechanisms to protect fund claimants. The government insists transition money for local authorities will not be ringfenced. Let’s hope money for social care isn’t spent on fixing potholes or simply balancing the books of councils that are struggling.
We need a government reference group, which includes disabled people, to monitor the transition and implementation of the new arrangements for ILF users for at least two years. This group should also work closely with ministers and officials on statutory guidance to ensure the current principles and resources for independent living continue after the transfer. That will at least give us a blueprint that disabled people and service providers can look to.
The closure of the ILF is the end of an era. It was a beacon of good practice that placed the independence of disabled people at the heart of its purpose. Its closure is part of a broader change to the landscape that could see a return to the days of disabled people being left in the shadows of service provision. No, it doesn’t feel like a great time to be disabled.