Work

Employers should make reasonable adjustments to encourage people with disabilities and conditions such as leukodystrophies to apply for jobs and to give them a fair chance of success.

Reasonable adjustments should also be made to your working day where possible, to help you to do your job while coping with your condition. The gov.uk website suggests some adjustments your employer may make, dependent on the demands of your role and the effects of your condition:

• doing things another way, such as allowing someone with social anxiety disorder to have their own desk instead of hot-desking;
• making physical changes to the workplace like installing a ramp for a wheelchair user;
• letting a disabled person work somewhere else, such as on the ground floor or from home;
• changing equipment, for instance providing a special keyboard or chair;
• allowing employees who become disabled to make a phased return to work, including flexible hours or part-time working;
• offering employees training opportunities, recreation and refreshment facilities.

There are government grants available through the access to work programme to help with the additional costs of these adjustments.

Despite these adjustments, you or your loved one may not be able to continue working in the same role or may have to give up work completely. This can be a difficult lifestyle change. Alex TLC can support you with this change, helping to find more suitable employment or alternative activities, or to adapt to life at home.

Leukodystrophy and employment information

We held a managing leukodystrophy in employment workshop.  It was an informational workshop about what reasonable adjustments employers should be offering to individuals affected by health conditions, including leukodystrophy. We have created a web page with useful information and uploaded the presentations from the workshop. This included a presentation from Tony Stevens from Disability Rights UK and a presentation from our wonderful community member, Michael Conway.

To access the page: Leukodystrophy in employment