What are reasonable adjustments at work? Do I have to tell my boss about my Parkinson’s diagnosis? Have you ever wondered exactly what Europe-wide rules are in place to protect and support people with Parkinson’s in the workplace?
While some factors vary depending on your role, company and country, there is in fact EU legislation designed to ensure everyone benefits from equal treatment at work.
To find out exactly what it is, and how it affects people with Parkinson’s, we spoke to Haydn Hammersley. Haydn is Social Policy Coordinator at the European Disability Forum, an umbrella organisation that defends the interests of over 100 million persons with disabilities in Europe.
You can read more articles from our ‘Welcome in the Workplace’ campaign, including the real-life perspectives of people with Parkinson’s at work here.
Firstly, what if a person does not consider themselves to be disabled? And in terms of EU legislation, are all people with Parkinson’s considered ‘disabled’, or does it relate to specific symptoms?
“In terms of whether individuals feel comfortable considering themselves as disabled or not, this is not unique to Parkinson’s – there are many groups where people do not self-identify as disabled.
“According to the UN Convention on the Rights of Persons with Disabilities, you are classified as disabled if the symptoms are long term, which would be the case with Parkinson’s, and also based on the extent to which you are impeded from doing certain things, or face barriers to carrying out certain tasks.
“In the labour market context, it is more about whether that might have an impact on your ability to perform your job if you don’t have reasonable accommodations made by your employer.
“So this legislation does cover you if you have Parkinson’s and:
- It has an impact on your ability to do your job to the best of your ability or
- If it might have an impact on your employer’s or recruiter’s impression of you, or their consideration of what your abilities might be.
“It covers, for example, if an interviewer might pick up on something about you and assume that you might perform at a slower pace without any proof that this would be the case, or that you might take more sick leave, for example.
“The relevant legislation does not necessarily take into consideration if you self-identify as disabled or not, it is based on the reality of the barriers you might encounter owing to your condition, and whether this has an impact on any discriminatory perceptions of your qualities as an employee by a potential employer.”
What EU legislation is in place to protect the rights of disabled people in the workplace?
“The main piece of legislation here is the Equality Framework Directive 2000/78/EC, set up in 2000, on non discrimination in the workplace. That is the basis on which many national pieces of legislation have been built, to include these minimum standards of non-discrimination that the EU set out.
“It is an EU directive, which means that it is not a piece of law that is directly applicable in all member states. Instead it means there was a transition period where if a member state’s non-discrimination or employment legislation didn’t contain the principles in this directive, they would have to then update or change their national legislation.
“Several countries were already performing well in terms of non-discrimination in the workplace, but others needed to rework their employment legislation to be in line with the EU norms. This means that while some countries go even further than what EU legislation says, In theory no country will do less as it sets a minimum standard for non-discrimination practices in the workplace.
“The EU is limited in how much it can legislate on employment issues, as many of the main decisions around employment policies are still a competence of national governments. However, in this case, where it concerns working conditions and integration of persons excluded from the labour market, the EU was able to impose this directive.
“It is important to point out that this directive covers all areas of work, with the exception of employment in the armed forces.”
How can this EU legislation help people with Parkinson’s specifically?
“One of the most important bits is that the EU Equality Framework Directive outlines that a person has the right to request reasonable accommodations, and this has therefore been transposed into national legislation in all EU member states. This includes in the UK which was a member of the EU at the time when this directive came about. It is therefore your right as a person with any particular needs to request that.
“And if considered reasonable, to have what you ask for granted, or will at least be able to negotiate some sort of changes to your working conditions, schedule or physical working environment, based on what the employer is reasonably able to provide, in order to not be impeded from doing your work.
“One criticism of the legislation at the beginning was that it did not give much clarity on what was considered “reasonable”.
“Or, if you were refused an accommodation or adjustment, how you could prove it was an unreasonable denial from your employer was therefore quite difficult. This was recently clarified by the European Commission, with guidance to help explain how you can understand what is reasonable and what is not.
“For communities of persons with disabilities, this right is one of the more practical elements. It is important to know you are within your rights to request the changes you need. You are supported by this legislation, and it is more likely to enable you to perform well, and retain your job, because you can deliver what your employer wants.
“You can start requesting any reasonable accommodations as soon as you start a job, or even within the interview process, without being penalised for doing so. Refusal to adequately address such requests can be considered a form of discrimination by the employer.
What are some examples of reasonable accommodations in the workplace?
“What a reasonable accommodation looks like will always depend on the individual, and may not work for others. But there are some common examples, such as:
- Requesting to adjust working times is common, especially if the person has mobility issues or does not feel confident about taking public transport at busy times. So being able to start or finish later or earlier, work a different schedule or do shorter hours and so on is quite common.
- Another example that was more unusual before Covid-19 was asking to work from home on some days. Now it is very normal but before it was harder. We generally encourage employers not to ask people with disabilities to work remotely full time, as it is often important to have some in-person contact with your colleagues and not remain excluded. Careerwise, it can also benefit the person to be seen in the office and remind senior staff of your presence.
- One example for people with Parkinson’s who have difficulty typing, is to use ‘voice to text’ technology. Purchasing the software itself can be subsidised in nearly all EU Member States, and it is a one off purchase for the employer. But one element that can be difficult for employers is to ensure the employee has a closed space to work, like a booth, so the person talking aloud when using the technology does not disturb colleagues or so that the software does not pick up other colleagues’ voices.
“It is worth noting that solutions for reasonable accommodation are often really inexpensive or free, especially when it comes to changing one’s working hours. So it is often a question of the flexibility of the employer, rather than a big investment.”
Are there any exceptions? For example, does this EU legislation still apply in the UK post-Brexit?
“In terms of the UK, the UK would have transposed legislation when it was still a member state, so it should still be present. But you would no longer be able to take the UK government to the Court of Justice of the European Union if they are seen to not be fulfilling the obligations of the directive.”
Does this apply to people who are self-employed, or freelance?
“The directive also covers people who are self-employed, although in practice being self-employed does mean that a number of obligations for fair treatment and non-discrimination that normally fall on employer become the person’s own responsibility.”
What if more than one protected characteristic applies to a person – does that make any difference?
“Your protection is still the same. But your risk of being discriminated against is of course higher if multiple categories apply to you. So in a way, in that case this legislation is even more important.
“Provisions for disability are quite specific, especially when it comes to reasonable accommodations. It is clearly linked to barriers to doing certain activities. Otherwise the protection is the same, but you are simply more likely to rely on it in order to not be put at a disadvantage.
“This is the case for many people, as many people would consider themselves to belong to multiple marginalised groups.”
How useful is this directive, and how effectively has this directive been implemented in Europe?
“It is very hard to say whether it has been well implemented or not. It has been quite successful in bridging the gap between countries that already had quite well-developed non-discrimination in legislation and employment, and those that were less developed.
“So it kind of brought everyone a little bit up to speed. In that sense, it was very useful. Also in really establishing what all of the EU member states understand to be non-discrimination.
“On the other hand, when it comes to persons with disabilities, in terms of employment rates we have not seen a big increase. We still see a lot of evidence of people being in very poor quality employment. So, lots of the issues that this was meant to solve for the disabled community still persist.
“We can see data over the past decade that shows the employment rate of persons without disabilities has increased quite strongly since the financial crisis in Europe. But for persons with disabilities, it has kind of stagnated. So clearly not everyone is benefiting from a revived labour market.”
How easy is it to prove discrimination at work?
“One issue we find is that people struggle to prove when there has been a case of discrimination against them on the basis of disability.
“It is very difficult to approve on a case-by-case level, because it is extremely easy for someone in a recruitment process, for example, to say, ‘We liked you, but you just weren’t our first choice’. Or to come up with a reason why somebody wasn’t promoted, or were let go, if they were already in the workplace. It is very easy to detach it from being any form of discrimination or misconception of how they perform based on their disability.
“I would imagine for Parkinson’s, the discrimination people face because of misconceptions is even greater. Because there is a fear that there will be some worsening of the symptoms as time goes on, and performance may be affected. So in this way it is different to those disabilities that are not degenerative.
“It is a useful directive but not a miracle cure. It has not ridden EU countries of discrimination in the workplace. That is still rife. There was a review of how successful it has been, written by a MEP who has a disability herself. It presented quite a negative view of how successful it has been. But I would say the directive is useful to have, and we still refer to it all the time.
“It is difficult to prove discrimination, but in some cases it does become very evident and you can use it to make a legal complaint against an employer. Or against your national government for not having implemented the EU directive correctly into national legislation.”
What should I do if I feel I am being discriminated against in my workplace, because I have Parkinson’s?
“The first thing to do if you don’t feel it is something you can raise within your company, which is often the case, is to seek help from an equality body working at the or local national level rather than European level, as it is most likely something that would be addressed at national level.
“This could be workers rights organisations, trade unions, Parkinson’s associations for example. They can give advice on whether it’s advantageous to take legal action or not. In the worst case, they might be able to help with legal proceedings or direct you towards a pro bono legal service.
“Ideally, it is always better if something can be settled without needing to go through legal proceedings. For example if you can have someone external come in and help negotiate or mediate the situation.”
Do I have to let my workplace know that I have Parkinson’s?
“No, you do not have to disclose a disability. It is up to you. You may in some cases be required to disclose a disability for your health insurance if you have it through work.
“But you could do that directly with the insurance provider, rather than the workplace directly. I do not know of any country where you are obliged to disclose a disability at work.”
Does any other EU legislation apply to people with Parkinson’s in the workplace?
“Yes – recent legislation on minimum wage sets out certain principles of what the minimum wage in a country should look like, in order for a person to be able to live off that wage.
“This is quite relevant for people with disabilities, as they are more likely to be working in low-earning employment and working at minimum wage. There are also many people with disabilities who are working at below minimum wage or on quite shaky contracts.
“There was also a piece of legislation in 2017, on work-life balance. This is relevant to people with disabilities and their families, as it mentions the right to carers leave for example, which is relevant to people who are looking after a family member who has a disability.
“But in general it goes some way to setting minimum standards for work-life balance and making working life more manageable, especially if you have a condition that can make working particularly tiring.
“Finally, there is also legislation on how EU funds can be used to support training of people with disabilities. Or to support employers in mentoring workers with disabilities or addressing their individual needs in the workplace.
“And there is also legislation on how state aid can be used to support employers. It is important because, for instance, it says what state money can be given to a certain company without giving it an unfair advantage over other companies.
“And for those companies, for example, it allows the state to subsidise the wages of employees with disabilities. Or to cover the costs of reasonable accommodations such as assistive technology, without it being considered to give the company an unfair advantage in the internal market.”
Is there any EU legislation in place to support and protect people with Parkinson’s who are no longer able to work at all?
“If you are no longer able to work due to a disability, this would mostly be covered by national legislation, as part of any disability allowance or disability pension you might get.
“While the EU might give advice to the member states on this, it ultimately falls under scope of what member states are in charge of. So the directive covers your rights as a worker. But if you are no longer able, then it lies with your national or regional government.”
In this episode, Parkinson’s Europe’s Amelia Hursey talks through the exciting new topic of disease modifying therapies (DMTs) and how they could revolutionise care for people living with Parkinson’s.
