An effective ban on disabled people leaving Britain is happening quietly across England, with local care providers blocking individuals from travelling abroad for holidays or work, according to a six-month investigation by Guardian columnist Frances Ryan and colleague Patrick Butler.
The practice, which affects disabled people with live-in personal assistants (PAs) funded through NHS continuing healthcare or 24/7 social care via local authorities, has no national guidance. This has resulted in a postcode lottery where some care boards permit travel while others refuse, sometimes even if the individual pays extra costs themselves.
Cases of disabled people barred from travel
Among those affected is Lucy, 38, from Oxfordshire, who needs to travel internationally as president of the European Spinal Cord Injury Federation. Chelsea, 25, from Lancashire, who has cerebral palsy, dreams of swimming in Spain again. Joel, 40, who has muscle weakness and works for a global marketing brand, has been unable to leave the UK for nine years.
Some people are told they can travel but must pay any extra expenses, effectively barring them financially. Others have care boards that offer to cover the cost. Local care officials inspect plans for trips and have the power to rule “go” or “stay”.
MPs and peers call for national guidelines
This week, MPs and peers called for national guidelines to end the injustice. Figures including work and pensions select committee chair Debbie Abrahams, crossbench peer Jane Campbell, and former Labour leader Jeremy Corbyn told the Guardian that the government must guarantee the rights of disabled people to travel and ensure they have the support they need.
Campbell, who has 24/7 PAs herself, said: “It’s as if those controlling [these decisions] believe disabled people don’t deserve the same experiences they enjoy.”
No extra cost to taxpayer
Care users going abroad doesn’t cost the taxpayer anything extra in care bills. Disabled people who need 24/7 support already have care funding in place, and in many cases use their own money to pay PAs’ travel expenses, such as accommodation and plane tickets. When Lucy was told by her care board she couldn’t take her PAs to a spinal cord conference in Germany this spring, her employer had already offered to pay any additional costs.
The issue goes to the heart of cultural assumptions about disability, according to Ryan. Sixty years after disabled people left institutions, paternalistic control still lurks in disability services. This manifests in social workers suggesting cheaper alternatives, care workers speaking slowly, or occupational therapists surprised that disabled people have families.
Broader context of social care failings
As many as 1.5 million disabled people in England are left without access to even the most basic help. The debate over social care reform, recently put on the agenda by Andy Burnham, has focused on personal care but little on supporting a disabled person’s family role or career.
Ryan argues that settling for this state of affairs forces disabled people to accept a half-life, diminishing the principle of choice and independence that underpins the modern care system. As pressure for national guidelines mounts, she suggests a litmus test: “Would you expect a non-disabled person to live like this? And if not, why do you think it’s OK for disabled people?”
