APH COVID-19 initiative: Coordinating, collecting and clarifying evidence-related issues for longterm care of people with intellectual disability

The spread of the novel coronavirus is sending waves of impact through the health care sector, including long term care and support for people with intellectual disabilities. Care organizations, large and small, have formed corona crisis-teams to respond to the situation. The Academic Collaborative Centers for longterm care of people with intellectual disability, two of which are embedded in APH, have responded to the emerging knowledge question by forming a 'ring'  of coordinators for collecting and clarifying evidence-related issues that collectively and rapidly may be addressed by the most relevant experts within the network of through the network's national and international connections. The idea sprouted on March 19. On March 24, the first six answers were published on the website of the Association of Academic Collaborative Centers and disseminated through the appropriate information channels. UK colleagues in the field are adopting a similar model and we will be coordinating with them too, to use our pooled resources as efficiently as possible and to continue to keep a critical eye out over work that is disseminated.

You may not have been hearing so much about the impact of the corona virus on people with disabilities, but this impact is already severe and likely to get worse. With staffing capacity already stretched, spread of COVID-19 may threaten the continuity of care while the heightened prevalence of underlying health conditions in this population means that clients with disabilities need extra shielding from the virus. However, little or no personal protective equipment is provided, no coronatests are allocated to this population. The shielding and quarantine measures take a toll on everybody, but are especially stressful for when carers have difficulty explaining the reasons to clients with intellectual disability.  Normal activities, outings and routines are halted. And then the contact with family and friends is severely disrupted. Special needs interventions and psychotherapeutic interventions face huge barriers, and the field has little experience with online activities. Many families are caring for the children with intellectual disability and/or autism at home and have lost the support of special needs educators, home carers, and paraprofessionals. This is taking a huge toll. The first set of knowledge questions reflect these immediate indirect effects of corona on health and wellbeing. These include questions on temporary support for families caring for their child at home, evidence on e-health products, keeping close social contact without physical contact, alternative exercise programs, validity of health apps, and quality of life monitors.

We are certain that care organizations will be grappling soon also with the medium to longer term effects. We hope that we will be able as APH to assist people with intellectual disabilities, care organizations, and family with timely and relevant evidence-informed knowledge through these trying times.

For more information, please contact Carlo Schuengel


This is an initiative taken by APH researchers as a result of the COVID-19 outbreak. If you have an initiative to be listed as well, please email us.

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