Managing leukodystrophy in employment information

Social Model of Disability

There are three main types of social barriers:-

1) Inaccessible environment
examples: inaccessible building, lack of ramps, clutter on floor, no access to toilets

2) Organisations procedures and practices
examples: lack of flexibility with policies, inaccessible systems or activities, lack of flexible working arrangements

3) Attitudes and prejudice
examples: stereotyping, making assumptions based on how someone looks, patronising attitudes, jumping to conclusions without considering invisible disabilities, being fearful and holding back from assisting

A source of any conflict or difficulties in work should be addressed with your employers by framing conversations about what’s in your way and how these barriers can be removed/reduced to make work accessible and for you to be productive as possible. The responsibility lies with the employer to make the practices, systems and buildings as accessible as possible for employees.


The legal context

Disabled Person = anyone with “a physical or mental impairment which has a substantial and long-term adverse effect on their ability to carry out normal day to day activities”

  • Anyone who meets the UK Equality Act definition of “disabled person” has legal protection against discrimination
  • Employers have legal duties towards disabled people which stems from the Equality Act
  • There is no definitive list of all conditions which are considered a disability
  • Must have/expect to have condition for at least 12 months for it be defined as a disability


Discrimination under the Equality Act

  • Direct discrimination, e.g. refusal to be employed due to condition
  • Indirect discrimination, e.g. job application isn’t accessible
  • Discrimination arising from disability, e.g. sickness policy does not account for time off due to appointments/time off due to disability
  • Failure to make reasonable adjustments: employers must make reasonable changes to their provisions, criteria and practices, alter their premises and/or provide aids and equipment where this would enable a disabled person facing a substantial barrier to be employed or access a service, e.g. accessibility of offices or equipment

Examples of reasonable adjustments

More time for someone with processing difficulties to do any written or reading tests that are part of the recruitment process
Specialist equipment or software
Additional support for an employee with anxiety
Accessible and adequate toilet facilities
Time off for medical appointments or treatment
Option of flexible working
Adjust performance targets to take into account the effect of sick leave or fatigue
Allocate some duties to another employee


Access to work scheme

If the help someone needs at work is not covered by reasonable adjustments, they may be able to get help from access to work:

  • Needs to be a paid job
  • A grant can pay towards special equipment, adaptations, support worker or travel to/from work
    examples: specialist chair, voice recognition software, taxis into work, sign language interpreter

To find out more, including how to apply for the scheme, visit:

*Notes taken from Disability Rights UK presentation

Alex - The Leukodystrophy Charity

Recorded presentations from our informational workshop

Tony Stevens, Head of Development, at Disability Rights UK

Tony’s presentation covers the following topics:

  • Jobs and careers – why disability shouldn’t be the starting point
  • Social model of disability
  • The equality act, focusing on the definition of disability and reasonable adjustments duty
  • Access to work scheme
  • Tips on employers and what to say to

To watch his presentation click here

Our community member, Michael Conway, who works for BAE systems and is affected by ALD

Michael’s presentation covers the following topics:

  • How he managed the transition from working without adjustments to how things are now
  • What his employers do to help/adjustments to his work environment
  • Obstacles he has experienced and how these were handled
  • Helpful tips and information for working with leukodystrophy

To watch his presentation click here

Alex - The Leukodystrophy Charity

Useful organisations

Disability Rights UK

Disability Rights UK is the UK’s leading organisation led by, run by, and working for disabled people.

Website: Disability Rights UK

They provide Guidance & Resources and three different DRUK Helplines



Specialist in alternative technology for those with disability or accessible needs.

Contact them: 0800 048 7642

Visit their website:

They provide free technological support and extensive suite of factsheets


Alex - The Leukodystrophy Charity