A balanced approach to decision-making in supporting people with IDD in extraordinarily challenging times.
Run every crisis cut through a four-question rights checklist before you touch services for people with IDD.
01Research in Context
What this study did
Luckasson et al. (2020) wrote a position paper. They asked: how do we protect the rights of people with intellectual and developmental disabilities during a crisis like COVID-19?
The authors built a four-point checklist. It reminds teams to weigh client rights, self-advocacy, individualized supports, and inclusion before cutting services or locking doors.
What they found
The paper does not give new data. Instead it gives a guard-rail: any crisis decision must balance safety with the person's right to choose and to stay in the community.
If a service must be reduced, the checklist forces the team to document why and to plan how rights will still be honored.
How this fits with other research
Colombo et al. (2020) offers a matching idea. They give ABA agencies a triage matrix—need × vulnerability × staff skill—to decide which sessions stay in-person. Together the two papers form one toolkit: Colombo tells you which services to keep, Ruth tells you how to keep them rights-based.
Green et al. (2020) tested real lockdown data. Incident reports in ID residences first dropped, then aggression rose again. Their numbers back up Ruth's warning: blanket restrictions can harm long-term behavior health.
Macdonall (1998) showed the flip side. One adult lost supports after moving to a "less restrictive" home and got sicker. Ruth's 2020 checklist is essentially an updated safeguard against repeating that 1998 mistake during a pandemic.
Why it matters
Next time you face a closure, quarantine, or staffing cut, open both the Ruth checklist and the Colombo matrix. Run each reduction through the four rights questions first, then score the service priority second. Document the answers and keep the person, not the crisis, in the driver's seat.
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02At a glance
03Original abstract
A balanced approach to decision-making during challenging times is necessary in order to avoid risks that jeopardize the lives and wellbeing of people with intellectual and developmental disabilities (IDD). The COVID-19 pandemic is the recent example of a crisis that places people with IDD at risk for lopsided societal reactions and threats to them or their wellbeing. Attention to decision-making is required to safeguard hard-earned achievements, including public policies and organization practices that emphasize human and legal rights, self-advocacy, individualized supports, inclusive environments, choices, and community inclusion. We suggest maintaining a holistic approach to understanding the lives and human functioning of people with IDD, a balanced approach to accountability and performance management, an understanding of the multidimensional properties of context, and a heightened vigilance in professional responsibility. A balanced approach will strengthen the likelihood of a return to high quality services and supports to people after the crisis, reduce loss of critical progress, and enhance stability across future social, political, and financial changes and challenges.
Research in developmental disabilities, 2020 · doi:10.3390/ijerph17061885