According to article 20 of German basic law, the Federal Republic of Germany is a democratic and social federal state which implies the provision of social security for everybody who stays within the national boundaries. However, the level of provision differs depending on peoples’ legal status. For instance, refugees who stay less than 15 months in the country are entitled to medical care under the Benefits for Asylum Seekers’ Benefit Act while those who stay more than 15 months receive nearly equal health care coverage as people who receive health benefits from the statutory insurance agency. However, my experience shows that refugees are often not aware of their rights and related regulations and unless they are supported by low threshold services are subsequently excluded from many services. Hence, pro-refugee activism across different NGOs has an important role to play in facilitating refugees’ access to health care as part of the ‘Willkommenskultur’ (welcome culture).
In Bochum, a continuous ethnographic study with a refugee family of five was conducted between October 2016 and June 2018. The study detailed and documented the family’s attempts to gain access to (better) health and wellbeing. The family fled to Germany from Syria in 2015. They received legal status in 2017 which granted them full access to the German statutory insurance system and hence full health care coverage. The parents – Lahing (35) and Leyla (35) (all pseudonyms) have three children. Their youngest child Bilind (4) was born with a chronic renal insufficiency and shortly after his arrival, he had an operation at a hospital in which a gastric tube (percutane endoscopic gastronomy = PEG) was inserted. Since the operation, medication and food is administered via the PEG at intervals of 5 hours which has granted him a chance of survival until now. At some point in the future, when he will need new kidneys.
At the beginning of my research, Bilind had no kindergarten place and spent eight hours a day on his tablet or in front of the television. His motor, social and linguistic development were slightly delayed, his attention span was low and he seemingly alternated between hyperactivity and lethargy. He often slept during the day and was awake through the afternoon until after midnight.
Due to the intensive care that Bilind needed, Leyla had few social relationships outside the family and does not like being in public spaces. Both parents are involved in and affected by the intense care for Bilind. Bilind receives three of the seven daily PEG dispensations during the night and an injection shortly before going to bed. The nightly PEG dispensations are given via a drip and an alarm goes off if the tube kinks, which happens several times every hour. He then has to be diapered three times in the night due to all the liquid he receives, which means that the parents only sleep for 2-3 hours at a stretch, interrupted by the drip alarms, diaper changes and Bilind calling for a drink of water.
For his father Lahing, this care regimen, paired with the constant worry for his son, is on top of a daily routine which includes German language lessons, household duties, school and kindergarten drop off and pick up. This is not to mention the almost daily humiliating and time-consuming interactions with the Job Center and the Migration Authorities. As these institutions are not accessible by phone, Lahing has to go to their respective offices to deal with any minor issue, sometimes on a daily basis which often results in long waiting hours in over-crowded, ill equipped rooms where, according to interviews with lawyers and on my fieldwork with refugees, poor legal decisions, lacking due process, are regularly made by the authorities. The unfriendly behaviour of overworked migration officials who have not been adequately trained and who often communicate contradictory information related to knowledge gaps about current refugee law, are widely discussed in refugee support networks. The combination of intense care for Bilind and the discriminatory and time-intensive interactions with German legal and social institutions leads to chronic exhaustion, especially for Lahing.
The ethnographic work also revealed how refugees lack the ability to access the specific health care and support services to which they are legally entitled. For example, the parents were unable to obtain a kindergarten place for Bilind, they simply accepted the decision when a kindergarten refused to take their son because of his disability; furthermore, they did not apply for care benefits, although care was obviously needed. This problem however can not to be reduced to the family’s refugee status. German parents with a low educational level and little knowledge about the complicated care system will be informally excluded from these resources to a similar extent. When I first got to know Lahling, Leyla and Bilind, I phoned the kindergarten in order to support the family’s need for an inclusive kindergarten place which was subsequently declined on the grounds that “care for these [disabled] children would be too laborious”. The second time I called, I announced myself as a university professor and was given an appointment, which triggered a process that ultimately resulted in Bilind’s needs being met. 18 months after arriving in Germany and after appraisals had been initiated (care appraisal, presentation at the Social Pediatric Center (SPZ) and following intensive discussions with the Job Centre, Social Services and the statutory health insurance, Bilind was given a place in an inclusive kindergarten at the recommendation of the SPZ. The health insurance’s confirmation of cost coverage for outpatient dispensation (via the PEG tube insertion) by a children’s care service at the kindergarten was received a further six months after application. This was because the statutory health insurance only covers nursing care benefits after two years of insurance which the family had not yet achieved. Finally, ten months after he had been granted the kindergarten place (and 28 months after the process started) and only then when we had finally found a suitable care provider, Bilind was able to take full advantage of his day-care.
During the research, further examples where this family were excluded from health care (which they were entitled to) came to the fore. They were initially assessed and granted a low level of care that included no financial support, following a 15 minute appointment in the family’s home. Together with the family, I wrote an objection. This led to a second assessment that took place in my presence and resulted in the award of a higher level of care plus an annual care support up to €6,192. Again, the power of a professor appeared decisive in gaining access to health care entitlements.
The ethnographic study of this family’s attempt to access health and wellbeing contrasts with what is meant to be officially available for asylum seekers who are legally recognized and entitled to full health care coverage. This category of people lacks knowledge about and power to demand important resources, rights and possibilities for achieving optimal health conditions. Despite both official entitlement and (some) popular support, providers are not set up to provide the much needed daily services. This research clearly shows that families are not getting access to health care as the system does not provide appropriate means to inform people and support them in gaining access to their entitlements. Therefore, we need to pose the question as to whether we are dealing with a system that for various reasons is apparently set up to deliberately exclude people one reason of which might be an imminent form of discrimination.
Christiane Falge is Professor of Health and Diversity at the University of Applied Health Sciences, Bochum, Germany.