Context
The first confirmed case of COVID-19 in the Netherlands was announced on February 27, 2020. According to the government’s website, “The Netherlands’ approach is aimed at keeping the virus under control as much as possible in order to protect vulnerable groups and make sure the healthcare system can cope” (https://www.government.nl/topics/coronavirus-covid-19/tackling-new-coronavirus-in-the-netherlands; accessed on July 16, 2020). Initially, the National Institute for Public Health and the Environment (in Dutch: RIVM) issued limited regional response measures, which were later extended to a maximum control strategy for the Dutch population as a whole, also called ‘intelligent lockdown’. The initial phase of maximum control eventually led to a sharp decrease in the rate of infection spread by May, giving way to the follow-up phase of intermediate control. The idea was to continue this intermediate level of control until the vaccination phase, unless a second wave would intervene.
As a population, people with IDD faced more stringent measures against COVID-19 than the general population. This general stringency and restrictiveness was not based on people with IDD being considered a vulnerable population per se by public health authorities. Rather, reports about outbreaks in long-term care settings fed into the perception that aggregated, 24-hour care for clients and staff might be a high-risk environment where outbreaks would be difficult to contain, potentially threatening the continuity of care.
Attention for people with IDD
In the beginning of the pandemic, the population of people with IDD and the care sector for this population experienced a lack of public acknowledgement and recognition for the impact of the pandemic. Because of this, people with IDD were not represented in decision making and no national guidelines were developed for long term care organizations for people with IDD. Consequently, care organizations for people with IDD started to develop their own guidelines.
Long-term care settings experienced shortages in Protective Personal Equipment (PPE) and initially had very limited access to testing, adding to the perceived incompatibility between the rules for public (hand washing, keeping distance, isolating when sick) and the needs and possibilities of people with IDD and their carers. Advocates for people with disabilities had to call repeatedly for explicit acknowledgment in the public addresses by the prime minister and the minister of health (interview with Rick Brink, in Dutch; accessed July 14, 2020).
The IDD sector has attempted to proactively increase its visibility. For example by epidemiological surveillance for COVID-19 (based on submitted cases by participating care organizations). Uup-to-date factsheets in English (https://www.sterkeropeigenbenen.nl/factsheet) led to more acknowledgement of the vulnerability of people with IDD during the COVID-19 crisis. Long-term care facilities were prioritized for resources if they had a severe outbreak. Also, tests became available for care staff and patients outside hospitals and the government announced temporary financial measures to safeguard continuity of care organizations, given drops in billable activities, unforeseen costs, and relieving bureaucratic burden.
Roles and responsibilities
Decision making in the initial phase of the COVID-19 crisis was highly hierarchical, with boards of care organizations setting rules following frameworks provided by the government and RIVM. With delay, the IDD sector obtained seats in the national and regional bodies for crisis response and acute care.
Rights of people with IDD were limited, for example to confer with their legal client representative in person as well as infringement in self-determination due to lockdown within care facilities. In response, client advocacy groups (Kansplus, Ieder(in), LFB, LSR, Per Saldo) conferred with the national body for care organizations for people with disabilities (VGN) to plead for more joint problem solving and policy setting, in addition to input from professional organizations (NVAVG for intellectual disability physicians and NVO for behavioral specialists). Furthermore, the Association for Academic Collaborative Centers for people with Intellectual Disability, Radboudumc, and RIVM took on the roles of data supervisors.
Vaccination strategy
The Dutch government started the vaccination programme on January 8, 2021. At the end of January/beginning of February, people with IDD and elderly people living in home care facilities were vaccinated with the Pfizer vaccine. The group that was vaccinated is more or less the same group as those who receive the influenza vaccination each year. Informed consent procedures were followed. At the end of February, all workers in IDD and elderly care (health) facilities were invited to start their vaccination with the AstraZeneca vaccine.
Contributions by Carlo Schuengel and Esther Bakker-van Gijssel