Reflection on the national public health responses to COVID-19

A first key challenge for people with IDD and their carers in a crisis that threatens public health is visibility. People with IDD are a relatively small number and within the limited bandwidth of political and media attention, their unique needs and challenges may not come to the foreground. The larger group of elderly people in long-term care may grab public perception first. Lack of acknowledgement in the Netherlands led to a sense of abandonment by people in the field and of being unfairly grouped with other “vulnerable” people that must be shielded rather than being part of the collective response to the threat of the virus. Also, involving people with IDD, relatives, and advocates in making policies and taking measures proved challenging. Advocates perceived decision making to be for clients, not with clients.

A second key challenge concerned availability of resources. Care organizations had little time to adapt and implement their infection control contingency plans. It is difficult to adapt and implement such plans while access to swab testing for patients and staff is unclear, PPE availability varies, there is uncertainty about the number of infected clients needing extra care (e.g., in COVID-19 cohort units), and staff may be unavailable due to public pandemic control measures. 

A third key challenge was that very quickly, the challenging but straightforward problem of containing an infectious outbreak turned into a ‘wicked problem’[1], meaning that disagreement rose about the nature of the problem (i.e., its seriousness), about the ideal solution (e.g., eradication, controlled spread, shielding vulnerable populations, ‘new normal)’, and about the collateral damage to quality of life and economic sustainability. In the IDD sector, dilemmas arose around drastic control measures such as keeping physical distance, no day activities, and no visits for people with IDD in care homes. Resolving such dilemmas means considering on the one hand unknown but potentially modest risks and on the other hand immediate restrictions to societal participation and reductions of quality of life. These dilemmas also involved the choice between foregoing involvement of people with IDD themselves in decision making so that their role in the collective action to control the virus would be effective or taking time to involve people with IDD and their families in decision making, while accepting risks based on delays in taking decisions or on having a plethora of individual arrangements.

Centralized and coordinated communication during the first wave was a key factor in obtaining control over the increase in infections on the national level. Even though this communication was not always adapted to the IDD sector, getting the pandemic under control in in the general population also protected the IDD sector. Furthermore, the concept of ‘intelligent lockdown’ entailed a maximum level of autonomy in following the behavioral rules and a minimum level of enforcement and restrictions, plausibly increasing the sustainability of lockdown and limiting its deleterious effects on mental health[2].

Another success factor has been the deployment of ‘enablers’. These were policy decisions and financial instruments that made it possible for people and organizations in the IDD sector to both continue care and contribute to the intelligent lockdown. These enablers included financial guarantees for care providers, postponement or dispensation for administrative duties, creating pools for new staff and volunteers, and rapid organization and financing of research, development, and innovation, such as in rapid knowledge syntheses or digitalizing forms of care. 

In preparation for a second wave, the Dutch government initiated an expert consultation on the “lessons learned”, including panel discussions on lessons learned of long-term care. These panels included IDD experts from experience, care organization, and science[3].

In addressing the challenges due to the continuation of control measures and possible second waves, it is crucial that people with IDD are represented in decision making processes. This includes the highest level of expert contributions to the Outbreak Management Team of Public Health Netherlands that advises the government. It also includes the levels within the sector itself, local communities, and care organizations. Such representation is important for issues such as prioritization of tests and PPE, commissioning of adapted PPE procurement (i.e., transparent face masks), medical advice, as well as social and behavioral measures affecting social contact, societal participation, and mobility.

Outbreak response needs to be swift to be effective. There has been acceptance that drastic measures were taken without broad consultation with stakeholders during the first wave. However, preparation for the second wave should include agreement between public health authorities, care organization, clients, and family on prepared scenarios for responding to regional outbreaks and the conditions under which these take place. Having such agreed upon scenarios ready would enable care organizations to take swift, decisive action while still respecting clients’ and families’ needs and autonomy, for example around visitors to group locations, suspension of regular care, and day activity programs. A national framework for both the content of the measures as well as the consultation and decision process might help to ensure people’s rights while maximizing effectiveness.

Care organizations and families have learned that they are interdependent. Some families experienced through hardship how dependent they were on professional care. Some care organizations experienced that they could not guarantee continuity of care and had to rely on family members, other informal carers and the broader civil society (e.g., volunteer or welfare organizations). Segmentation and overregulation of the care landscape hindered effective adaptation to this new reality and needlessly polarized the positions of different stakeholders. The COVID-19 emphasized the urgency of rethinking the binary care landscape (i.e., personal budgets versus direct pay to providers). Reshaping tools for financing care and ensuring its quality would need to put the needs and possibilities of people with IDD and their families central, and enable hybrid or blended forms of formal and informal care in the context of the civil society. In so doing, the sector may become more robust. This would not only diminish risks on the scale of a pandemic but may also make care arrangements more robust against local and individual disruptions as well and represent a next step in empowerment of people with disability and their families.

[1] Head, B. W., & Alford, J. (2015). Wicked Problems: Implications for Public Policy and Management. Administration & Society, 47(6), 711-739. doi:10.1177/0095399713481601
[2] Brooks, S. K., Webster, R. K., Smith, L. E., Woodland, L., Wessely, S., Greenberg, N., & Rubin, G. J. (2020). The psychological impact of quarantine and how to reduce it: rapid review of the evidence. The Lancet, 395(10227), 912-920. doi:10.1016/S0140-6736(20)30460-8
[3] https://www.rijksoverheid.nl/documenten/publicaties/2020/08/31/documenten-lessons-learned-corona