Last updated on April 4th, 2024 at 01:42 pm

Gene People is proud to announce our new partnership with the Disability Law Service,  a charity which assists disabled people and their families with legal advice.

Below DLS lawyers answer frequently asked questions about benefits from parents and carers of children with genetic disorders.

If you wish to contact the charity call 020 7791 9800, email: advice@dls.org.uk or go to their website: www.dls.org.uk

I have a genetic disorder which requires regular fortnightly treatment for two hours. Do I have to disclose this in job interviews?

You do not have to disclose this in job interviews. You may well be asked to disclose any disabilities on an application form, but this should only be for monitoring purposes or so that adjustments can be made to the interview process.

Except in limited circumstances, questions about disability or health must not be asked at the interview stage or at any other stage before the offer of a job has been made. At that stage, you should disclose your condition, as your employer will not be under any duty to make reasonable adjustments to accommodate your treatment unless you tell them. back to top…

I have read about ‘reasonable adjustments’ employers have to make for disability. I am in a wheelchair because of my genetic disorder, should all employers, regardless of the size of their business accommodate the chair?

The duty to make reasonable adjustments comprises three requirements. Employers are required to take reasonable steps to:

  • Avoid the substantial disadvantage where a provision, criterion or practice applied by or on behalf of the employer puts a disabled person at a substantial disadvantage compared to those who are not disabled.
  • Remove or alter a physical feature or provide a reasonable means of avoiding such a feature where it puts a disabled person at a substantial disadvantage compared to those who are not disabled.
  • Provide an auxiliary aid where a disabled person would, but for the provision of that auxiliary aid, be put at a substantial disadvantage compared to those who are not disabled.

What is a reasonable step for an employer to take will depend on all the circumstances of each individual case. The following are some of the factors which might be taken into account when deciding what is a reasonable step for an employer to have to take:

  • whether taking any particular steps would be effective in preventing the substantial disadvantage;
  • the practicability of the step;
  • the financial and other costs of making the adjustment and the extent of any disruption caused;
  • the extent of the employer’s financial or other resources;
  • the availability to the employer of financial or other assistance to help make an adjustment (such as advice through Access to Work); and  
  • the type and size of the employer.

Ultimately the test of the ‘reasonableness’ of any step an employer may have to take is an objective one and will depend on the circumstances of the case. What is reasonable for a very large employer, might not be reasonable for a very small one. back to top…

I read somewhere I am entitled to a certain number of carer days off work a year because my son has a severely disabling genetic disorder. Is this true?

The first thing to check is whether your employer has a policy on time off for parents or carers of disabled children. 

All employees have the right to take unpaid time off work to deal with an unexpected event involving someone who depends on them. There is no official upper limit on how much time off you can have for such an emergency, although it must be reasonable in the circumstances. Ordinarily one or two days would be regarded as enough, however your employer should take into account your own individual circumstances.

Parents of children under 18 can take unpaid parental leave if they have been with their employee at least a year. Employers can require parents to take parental leave in blocks of a week, although parents taking parental leave for a disabled child (who is entitled to Disability Living Allowance or Personal Independence Payment) can take it in blocks of a day. An employee may not take more than four weeks’ leave in respect of any individual child during a particular year.

Employees begin accruing entitlement to paid annual leave as soon as they start their employment. Full-time workers are entitled to a minimum of 28 days a year (which can include bank holidays). Part-time workers have a pro-rata entitlement. Your employer can decide when you may or may not take your leave. back to top…

I am struggling to support my severely disabled son now that he is a teenager AND hold down a full-time job. I have worked for the same company for 18 months what rights do I have to flexible working – I would like to reduce my hours.

Any employee with 26 weeks of service with the same employer has the right to make a request to work flexibly; you don’t have to be a parent and carer. Your employer has three months to give you a decision (although this can be extended by agreement). If your employer turns down your request they must give one of the permitted business reasons. These are:

  • Burden of additional costs.
  • Detrimental effect on ability to meet customer demand.
  • Inability to reorganise work among existing staff.
  • Inability to recruit additional staff.
  • Detrimental impact on quality.
  • Detrimental impact on performance.
  • Insufficiency of work during the periods you propose to work.
  • Planned structural changes.

There is no general right to work flexibly but you may be able to complain to an Employment Tribunal if:

  • Your employer did not give you an answer within three months.
  • Your employer’s reason for refusing is not permitted.
  • Your employer’s reason for refusing is not factually correct.

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I have never taken a day off work because of my daughter’s genetic disorder, I think it would make me vulnerable to redundancy if I did, even though I have worked there for three years. Now she requires major surgery that will mean me taking six weeks off. I am terrified about mentioning this to my boss. What rights do I have?

It is discriminatory to treat an employee less favourably because they are the parent or carer of a child who is considered disabled under the Equality Act 2010. This is known as ‘direct discrimination by association’. If your employer made you redundant because he resents you having a disabled child who you need to take off work to care for, this may amount to direct disability discrimination by association. 

It is also unlawful to subject an employee to unwanted conduct which is related to disability and which has the purpose or the effect of:

  • violating the worker’s dignity; or
  • creating an intimidating, hostile, degrading, humiliating or offensive environment for that worker

This is known as ‘harassment’. For example, if your manager made offensive comments about your child’s disability, this could amount to harassment related to disability.back to top…

Further advice on these matters

For further advice on these matters please contact:

Disability Law Service:

Telephone: 020 7791 9800

Email: advice@dls.org.uk

Website: www.dls.org.uk

Or write to us at: The Foundry, 17 Oval Way, London, SE11 5RR

© Disability Law Service 2018.  Registered Charity Number 280805, Company Registration Number 1408520