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Disability and chronical disease

An underground station without an elevator? A movie without subtitles? Cash machines inaccessible for wheelchair users?

Persons with a disability are often excluded from everyday life. Even though chronic diseases, as opposed to disabilities, are not mentioned as a ground for protection in the General Act on Equal Treatment, they are also often a ground for discrimination. More than 25 per cent of all enquiries received by the Federal Anti-Discrimination Agency concern discrimination on grounds of disability and chronic diseases. 89 per cent of all severe disabilities are caused by disease in the course of one’s life, only 3 per cent are congenital or were acquired early in one’s life. Chronic diseases are diseases which can be treated with medication, but which cannot be cured completely and, thus, they constitute a permanent problem for those affected. This means: disability or chronic disease can affect all of us and concerns all of us, for whether it be in the working world or in everyday life – they often lead to exclusion of those affected.

Disabilities

Disabilities can limit the opportunities of those affected to participate in professional and everyday life. Some types of disabilities, such as physical or sensory impairments, are easily recognized as such in mainstream society, which leads to disadvantages for those affected since they are often considered less capable. In contrast, mental disorders are not apparent at first glance. However, these conditions, too, frequently limit people’s opportunities for participation.

FAQs on disabilities

Frequently Asked Questions

  • Almost one in every four people in Germany has an officially recognised severe disability or is living with a chronic disease, which has led to considerable limitations with regard to everyday life over an extended period of time. Detailed statistics are only kept of persons with an officially recognised severe disability, however. According to the Federal Statistical Office (only in German), at the end of 2019, these amounted to approximately 7.9 million people, i.e. 9.5 percent of the total population. This figure, though, only includes persons who were granted a degree of disability of at least 50 by a pension office. The majority of severe disabilities (89 percent) are caused by a disease, only three percent are acquired at birth or early in life, and one percent occur as a consequence of an accident or occupational disease.

    Yet there are also many people living with a chronic disease, such as HIV, diabetes or multiple sclerosis. In a 2019 survey by the Forschungsgruppe Wahlen (a German institute for election research), 46 percent of participants indicated having a chronic disease, which was defined as also including mental conditions. Despite the fact that these conditions may be just as disabling as physical impairments, they are frequently not taken into account.

  • According to social law, a person is disabled if their physical, mental, intellectual or sensory capacities are highly likely to deviate for more than six months from a state that is typical for their age, and they may thus – in interaction with various barriers – be prevented from equal participation in society (Section 2 (1) Social Code IX). The degree of disability (Grad der Behinderung, GdB) is determined by the competent pension office according to the healthcare principles (versorgungsmedizinische Grundsätze, only in German ). A disability is classified as severe if the degree of disability is 50 or higher.

  • Inclusion means that every person should be given the opportunity to participate fully and equally in society. Participation may not depend on factors such as individual abilities, ethnic origin, gender or age. Diversity is considered the norm. Therefore, structures need to be established which allow participation for each and every person, independent of their respective background.

    Inclusion was first coined as a political term in the 1970s by a US civil rights movement. Persons with disabilities and their families demanded equal participation in social life. Since the 1994 UNESCO World Conference, inclusion is discussed all over the world, in particular in the context of education. At that conference, participants adopted the ‘schools for all’ programme and identified inclusion as the most important objective of international education policies.

    The 2006 adoption of the UN Convention on the Rights of Persons with Disabilities represented a milestone of international change, but also brought with it a certain degree of conflict. Until then, the main focus when dealing with persons with disabilities was on welfare and rehabilitation measures. These measures have now been challenged and replaced in part through the objectives of inclusion and the promotion of self-determined participation. This goal now has to be put into practice, and the existing welfare and rehabilitation infrastructures need to be adapted to the new focus.

  • In this context, associations as well as the Federal Government Commissioner for Matters relating to Persons with Disabilities speak of historically evolved and consolidated ‘separate worlds’ that also include special schools and workshops for people with disabilities.

    According to the UN Convention on the Rights of Persons with Disabilities (CRPD), children with disabilities should, as a general rule, attend regular schools. In Germany, this goal is far from accomplished – more than ten years after the CRPD entered into force. During the 2016-2017 school year, only 39.3 percent of pupils with special needs attended a regular primary school. (https://www.aktion-mensch.de/inklusion/bildung/hintergrund/zahlen-daten-und-fakten/inklusion-schule.html, only in German)

    With a proportion of pupils with special needs of 7.1 percent for the 2016-2017 school year, Germany is midrange by European comparison. In addition, implementation varies greatly between the individual Federal Laender. What is more, the degree of inclusion decreases significantly with the pupils’ age. In North Rhine-Westphalia, for instance, around seven in ten day-care facilities take an inclusive approach. The same is true, however, for only five in ten primary and three in ten secondary schools.

    The implementation of inclusion in education falls under the responsibility of the Federal Laender, many of which are already working towards the abolition of special schools. Associations are massively promoting a higher permeability for pupils willing to attend regular schools. This may also help to facilitate the inclusion of people with disabilities into the general labour market later in life. However, the approach is not without controversy: Some parents fear that at a regular school, their children will above all be viewed as people with deficits, while attending a special school would allow them to develop stronger self-confidence. In addition, by far not all schools are accessible.

  • People with disabilities are significantly underrepresented on the labour market. According to the Federal Statistical Office, in 2017 the proportion of professionals and job seekers among persons with disabilities was 30 percent, i.e. not even half as high as among people without a disability (65 percent). These data can in part be explained by the higher age of people with disabilities, but even an age-adjusted comparison shows differences. For instance, while 70 percent of people with disabilities aged between 25 and 44 years were employed or seeking employment, this rose to 88 percent in the same age group of people without a disability.

    After finishing their education, many pupils of special schools automatically end up in a workshop for persons with disabilities. From there, a transition to the general labour market is almost impossible – only around 0.32 percent of pupils manage to make the change. According to the German Federal Association of Sheltered Workshops (Bundesarbeitsgemeinschaft der Werkstätten für Menschen mit Behinderung, only in German), more than 312,000 people are currently working in such facilities. And while other countries, such as the USA, are working towards reducing the number of employees in such workshops, the number in Germany continues to grow.

    The social security standards in the workshops often far exceed those of the general labour market: jobs are safer, a taxi service is provided and after 20 years, a full reduced earning capacity pension is given. In addition, a transition from the general labour market back to a workshop is rarely possible. According to the Federal Statistical Office (only in German), 30 percent of people with disabilities in 2017 were integrated in the labour market. In contrast, among people without disability the proportion was 65 percent. This difference can in part be explained by the relatively high average age of people with disabilities, but differences still remain even when comparing specific age groups.

  • According to Book IX of the German Social Code (SGB IX), private- and public-sector companies with at least 20 positions are generally required to employ in at least 5 percent of these people with an officially recognized severe disability. If they do not comply with this obligation, a compensatory levy is to be paid.

    In Germany, the obligation to employ workers with disabilities applies to 168,693 companies and businesses, of which 102,529 had to pay a compensatory levy in 2018. According to the Federal Employment Agency (only in German), only about one third of all businesses with more than 20 employees fulfilled the employment obligation.

    Pursuant to section 165 (3) of the Social Code IX, public-sector employers, for instance, are also required to invite persons with disabilities to job interviews. However, this obligation does not apply if the applicant obviously lacks the professional qualifications required.

  • In 2019, one in four counselling enquiries to the Federal Anti-Discrimination Agency concerned discrimination on grounds of a disability. In a survey conducted by the Forsa polling institute, people with a severe disability were asked in which areas of life they felt discriminated against. In their answers, 26 % mentioned everyday mobility, 24 % their professional life and 23 % insurance rates and premiums. 22 % perceived themselves to be discriminated against or excluded with regard to their choice of leisure activities and 17 % by offices or authorities.

    Persons with disabilities face particular hurdles when wishing to access goods or services. People who contacted the Anti-Discrimination Agency’s counselling centres reported barriers such as steps in front of restaurants or the lack of elevators at underground stations. But participation is also hindered by online registration forms without screen reader support or films and videos without subtitles.

  • No one may be discriminated against on the grounds of disability. This is stipulated in Article 3 (3) of the German Basic Law, which regulates the relationship between the citizens and the State. The General Equal Treatment Act (German abbreviation: AGG) prohibits discrimination in the workplace and in day-to-day legal transactions on the grounds of disability, ethnic origin, gender, religion or belief, age or sexual identity.

    Compensation for disadvantages is mainly provided for in Book IX of the Social Code (SGB - website only in German). Its aim is to promote self-determined and equal participation by people with disabilities. The 2017 Federal Act on Participation (German abbreviation: BTHG - website only in German) reforms the Social Code IX and is based on the UN Convention on the Rights of Persons with Disabilities. In addition, the Act on Equal Opportunities for Persons with Disabilities (German abbreviation: BGG) entered into force in May 2002 - website only in German. The Act primarily applies to Federal authorities, bodies and institutions. It also strengthens associations when pursuing the interests of people with disabilities against businesses and business associations. Corresponding equality laws, which are essentially in line with the BGG, are in place in each Federal Land.

    Anyone considering their right to accessibility violated or their equal participation hindered by a federal public - website (only in German) body on grounds of a disability, can turn to the Arbitration Service BGG - website only in German) of the Commissioner for Matters relating to Persons with Disabilities and submit an arbitration request - website only in German. The aim of the arbitration procedure, which is offered free of charge, is to settle disputes by extrajudicial means.

    The General Equal Treatment Act (AGG) prohibits discrimination on the grounds of disability. However, there is no general obligation for private companies to provide barrier-free access to services and products. That means, the owner of a restaurant with stairs in front of its entrance is not required to furnish the place with a ramp or an elevator. As early as 2008, the European Commission submitted a draft for the 5th EU Equal Treatment Directive. Its aim is, among other things, to reduce accessibility-related discrimination in civil law. The draft even envisages an entitlement to the removal of specific barriers in individual cases. Thus far, negotiations on this draft in the European Council have been blocked by a number of member states. In addition to Germany, Poland, the Czech Republic, Denmark and Great Britain have expressed reservations.

    The European Accessibility Act entered into force in 2019. The EU directive aims to strengthen barrier-free access to certain services, such as automatic ticketing or telling machines, smartphones and computers as well as banking and telecommunication services.

  • Accessibility means that buildings, means of transport, articles of daily use, the internet and much more can be found, accessed and used by persons with disabilities without particular difficulty and generally without external help (section 4 of the Act on Equal Opportunities for Persons with Disabilities). It is the main prerequisite for social participation.

    For more information around the topic of accessibility, check the website of the Federal Government Commissioner for Matters relating to Persons with Disabilities (only in German)

  • The concept of accessibility concerns all areas of life that are shaped by humans. It does not encompass natural environments such as forests or beaches. As soon as humans actively shape the environment, accessibility can be ensured, for instance, by building a forest path or a landing stage.

    The term ‘accessibility’ was first used in the context of construction, but use has since spread to all areas of life. Now, it no longer refers only to the elimination of architectural/structural barriers. Unrestricted and self-determined participation includes the use of all buildings, roads/paths, ATMs, mobiles and websites.

    The Federal Centre of Expertise on Accessibility reports that almost half of the requests it receives (47 percent) relate to information technology. Requests regarding buildings come second (22 percent). Other topics listed include language, transport, public open space, media, products, roads and transport infrastructure, guidance systems and fonts.

    For more information around the topic of accessibility, check the website of the Federal Government Commissioner for Matters relating to Persons with Disabilities (only in German).

  • Since the beginning of the coronavirus crisis, the Federal Anti-Discrimination Agency has received about 1,500 counselling enquiries (as of 27 November 2020) regarding discrimination in connection with the virus. Cases have ranged from openly racist behaviour to physical assaults in public. In the initial phase of the pandemic, the majority of requests for counsel concerned cases of discrimination on grounds of race or ethnic origin. At this point, most of our counselling enquiries come from people who are not able to wear a face mask because of a disability. However, during the coronavirus crisis people also face particular discrimination risks on account of other characteristics.

FAQs on chronical disease

Frequently Asked Questions

  • Chronic diseases are, for instance, HIV, migraine, diabetes, asthma, chronic respiratory or coronary heart diseases. In a 2019 poll, 46 per cent of those surveyed reported living with a chronic disease. (https://de.statista.com/statistik/daten/studie/707617/umfrage/umfrage-zur-verbreitung-von-chronischen-krankheiten-in-deutschland/)

    According to the Federal Ministry of Health, a person has a serious chronic disease if they can prove seeing their doctor at least once per quarter for the same disease over at least one year and also meet one of the following criteria:

    • long-term care needs of care grade 3, 4 or 5
    • a degree of disability or reduced earning capacity of at least 60 percent
    • the need for continuous medical care without which, according to medical assessment, a life-threatening exacerbation of the disease, a shortened life expectancy or a permanent quality of life impairment can be expected as a result of the health problems caused by the disease.
  • Under specific conditions, chronic diseases can be recognised as a disability. This judgement was made by the European Court of Justice (case numbers C-335/11 and C-337/11) in 2013 in an effort to protect those affected from discrimination on account of their state of health. Specifically, the Court concluded that “… if a curable or incurable illness entails a limitation which results in particular from physical, mental or psychological impairments which in interaction with various barriers may hinder the full and effective participation of the person concerned in professional life on an equal basis with other workers, and the limitation is a long-term one, such an illness can be covered by the concept of ‘disability’ within the meaning of Directive 2000/78. On the other hand, an illness not entailing such a limitation is not covered by the concept of ‘discrimination’ within the meaning of Directive 2000/78.” (Judgment of the Court (Second Chamber), 11 April 2013)

    The important point here is the interaction between physical, mental or psychological impairments and workplace barriers that hinder the persons with disabilities and chronic diseases to fully and effectively participate in professional life on an equal basis with other workers.

  • While chronic diseases are unchangeable personal characteristics, they are only protected under the General Equal Treatment Act (German abbreviation: AGG) if they are also considered to be disabilities. A disease per se is not listed in the AGG as a ground for discrimination.

    Current case law struggles to provide a clear-cut definition and straightforward distinction between chronic disease and disability. Chronic diseases are not explicitly recognised as being covered by “disability” in Art. 3 (3) sentence 2 of the Basic law and section 1 of the General Equal Treatment Act (AGG). They are only covered by the AGG if they are also considered to be disabilities, in other words if the person’s physical state, cognitive faculties or mental health are highly likely to differ for more than six months from what is typical for someone that person’s age and their participation in social life is impaired.

    In late 2013, the Federal Labour Court handed down a decision that decisively changed the approach to chronic diseases and strengthened the rights of those affected. One man filed a case after being unlawfully dismissed on account of his HIV infection. The Federal Labour Court found that an asymptomatic HIV infection was covered by the definition of disability in the General Equal Treatment Act. The Court based its decision on a more dynamic understanding of the term “disability” that also looked at the broader environment of the person concerned. In its view, the person’s participation in society, which also includes the world of work, has to be substantially impaired, as also set out in the Social Code’s definition. It pointed out that such an impairment can result from the interactions between various social context factors, such as societal attitudes and barriers. Consequently, disability can above all also stem from others preventing the person from participating in society through stigmatisation or avoidance.

  • According to the expert opinion “Schutz vor Benachteiligung aufgrund chronischer Krankheit” (only available in German) prepared on behalf of the Federal Anti-Discrimination Agency, discrimination occurs in the first place in working life and with insurance services. Persons with a visible chronic disease and/or a disease that carries a stigma are particularly affected by discrimination. Persons with HIV/AIDS or obesity are the most likely to report being disadvantaged or discriminated against. Today, improved health care allows HIV-positive individuals to enjoy, for the most part, full participation in working and social life. Nevertheless, HIV-positive individuals experience exclusion based on stigma or rejection.

    In working life, disadvantage due to chronic disease manifests in all the stages of employment - during the application process, when concluding the contract, during employment and when terminating the employment. Frequently, for instance, chronic diseases are not disclosed when applying for a job or while employed for fear of adverse consequences, such as not being recruited or dismissal. A 2012 study by the German AIDS Relief Association (Deutsche AIDS-Hilfe) found that 26 percent of employers reacted with discrimination when learning of an HIV infection.

    In most cases, persons with chronic diseases have to pay considerably higher insurance premiums and are sometimes even denied a private old age, health insurance or whole life insurance. Disadvantages especially affect life, occupational disability, accident and health insurances.

    The freedom of contract in the private Insurance Contracts Act (Versicherungsvertragsgesetz) means that insurance companies are basically free, depending on the result of a risk calculation, to refuse the conclusion of an insurance contract or to make it conditional on comparatively unfavourable terms (such as higher premiums). Section 20 (2) sentence 2 of the AGG states that differences of treatment with reference to premiums and benefits are permitted where these are based on recognised principles of risk-adequate calculations, in particular on an assessment of risk based on actuarial calculations which are in turn based on statistical surveys.

  • The Anti-Discrimination Agency champions a comprehensive protection against discrimination of persons with disabilities. The lack of legal certainty in cases of discrimination and a vague definition of chronic disease hamper the protection of those affected.

    Anti-discrimination law should clearly specify that the term “disability” can cover specific diseases if they involve impairments that are likely to be long term. The Federal Labour Court has assumed this to be the case for asymptomatic HIV infection and suggested that the same might apply to diabetes, arthrosis or rheumatism.

    The protection from discrimination on account of chronic disease should be explicitly enshrined in section 1 of the General Act on Equal Treatment (German abbreviation: AGG). An amendment of the AGG is planned to ensure legal certainty by covering “chronic disease” alongside “disability”.

    More details on the need for action are included in the evaluation on the General Equal Treatment Act.

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