Do you have a disabled child or children? Should your employer care?

Suzy Rowland, Founder and CEO of the #happyinschool project, on whether employers should extend benefits to employees with disabled children.

Employers and employees have much clearer guidance on their respective responsibilities thanks to legislation and workplace regulations that are regularly reviewed.

The Equality Act 2010 protects the rights of employees with disabilities, but should employers’ responsibility extend to employees with disabled children? It’s an important question and probably one that the corporate world isn’t quite ready for, but it’s one we need to discuss.

On a recent social media feed I follow, used by people who are interested in special educational needs (SEN) and disability rights, someone posed the question: If you are a parent of a child with disability, have you ever had to leave a job/reduce hour of job/not take job because company attitudes/lack of flexibility/culture?”

The torrent of replies highlighted the contentious nature of this topic amongst working parents with disabled children. People flagged up the near impossibility of holding down a corporate job with the anxiety of knowing you could get a call, any day any time, from your child’s school, requesting an ‘emergency pick up.’

Other parents suggested freelancing as the answer but pointed out that the lack of financial security, including a pension and other benefits, would make freelancing more of a temporary fix than a permanent solution. The final result of the poll showed that 81% of parents with children with a disability, had had to reduce their hours or turn down a job offer because of their family’s status. 

In 2016, I quit my freelance corporate communications job as my eleven-year-old son wasn’t settling at secondary school. Although I had been transparent about his autism diagnosis, the school called my mobile frequently about his behaviour. I resorted to using unpaid leave to attend teacher meetings or medical appointments. 

The reality for many parents with children on the autism spectrum or ADHD is that they feel guilty about having to work, and powerless to manage their child at school, as they’re not there! These developmental disorders are particularly tricky for parents and educators to manage, as it’s not always obvious what is ‘triggering’ the behaviours because there are no visible signs of disability. In certain situations, disabled children can react in ways that are extreme and sometimes dangerous to themselves or others. 

Case study:

Mandy Aulak, 41, of Chigwell, Essex, is a qualified lawyer and a single mother to a 6-year-old boy with autism. When he was a toddler, she opted to use her annual leave instead of employing a specialist childminder. And when he started school, good ‘wrap around care’ was scarce and expensive. A few years ago, Mandy visited parliament with Working Families (a work-life balance organisation) to lobby for families with disabled children to have greater working options. “Parents require flexibility,” explains Mandy, “which can be difficult to request at the outset of securing a role, especially a management role, where working hours tend to be longer and more fluid.” Mandy has since set up her own law firm, describing is at her ‘best career move.’

Like father like son?

The science hints at a genetic component to autism: meaning a proportion of children with autism will have a parent on the spectrum. Employees with autism may experience specific issues at work around social interaction and communication, particularly in pressurised situations. If employers are happy to let good staff go due to their (undiagnosed) autism or ADHD behaviour, they could be losing loyal and talented people. Working with employees who are considering a diagnosis, can help them stay on top of their work game, whilst building a genuine culture of workplace inclusivity.

What’s the answer?

Employees are seeking a culture of flexibility and understanding. But it’s a two-way street. Employees have a responsibility to their employer too, with a contract of employment, which sets out their duties and terms. And what about disclosure? How can an employer provide support if they are unaware of the situation? Disclosure is a big decision which employees need to weigh carefully. Waiting until there’s a crisis reduces the opportunities for reasonable negotiation and could leave both parties feeling mistreated. 

Suggestions for employers

  1. Develop a culture of inclusivity.
  2. Encourage individuals to lead and run special support groups in the workplace, (parents of children with autism, single parents, recently bereaved, etc.)
  3. Ensure groups are well-regulated, and employees adhere to company policy in terms of respect, not defaming company publicly etc.
  4. Encourage groups to develop a constructive way to feed any suggestions back into HR and management chain to positively influence company policy.
  5. Ensure groups are open and inclusive to all! With the option for colleagues from HR to attend and support on ad hoc basis, with the consent of the group.

Suggestions for employees

  1. Consider building a reputation for being trustworthy, reliable, hardworking, flexible; it will be easier for employers to agree to any requirements for flexible working.
  2. Unless you are applying for part-time work or a flexible role at the outset, you may feel in a stronger negotiating position if you prove your worth, before you start asking for time out.
  3. Be prepared to give and take; if you have an arrangement that enables you to be more flexible.
  4. Keep good records of your working time, either on an online system or in a notebook, be aware of any time that you put in to compensate for your unexpected time out with your child and demonstrate this clearly to your employer. It’s about balance and responsibility.
  5. Remember, you have a responsibility to your employer, which is outlined in your contract of employment. Remaining in employment, if possible, is good news for parents of children with disabilities, as you are more likely to avoid poverty and hardship of a reduced income, which can create additional stress.

Companies may feel they are groaning under the weight of employers’ workplace rights; but if providing the right environment ensures a business retains its competitive edge, surely, it’s worth giving genuine cultural change much closer inspection?

>See also: Strategies for diversity: Q&A with Sarah Kaiser from Fujitsu

About the Author

Suzy Rowland, Founder and CEO of the #happyinschool project, is an author, inspirational speaker, autism and diversity advocate. The #happyinschool workplace project provides autism and ADHD consultancy service to companies, advising how to support employees with ‘hidden disabilities,’ improve their well-being, productivity and reduce absenteeism. The project extends to specialist autism/ADHD workshops for employees with caring responsibilities for their children with disabilities. Suzy is Scope, IPSEA & CBT trained. Contact: 

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