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Vital Signs: Pandemic presents extra challenges to people with developmental disabilities

Vital Signs: Pandemic presents extra challenges to people with developmental disabilities

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For many individuals with intellectual and developmental disabilities (I/DD), life before the coronavirus pandemic is a distant memory after months of sheltering at home with limited access to the community and modified routines.

Visits with family and friends, recreational activities, volunteering and working in the community have been altered drastically or put on hold entirely. While these challenges are the new norm throughout the country, isolation, underlying health conditions and increased caregiver responsibilities bring unique challenges to individuals with developmental disabilities, as well as their families, caregivers and providers who support them.

Numbers obtained during preliminary data studies in New York and Pennsylvania indicate that individuals with developmental disabilities are four times more likely to contract the coronavirus than other community members. Of the individuals with developmental disabilities who test positive for COVID-19, these individuals die at a rate that is 2 to 2.5 times higher than individuals without I/DD who contract the virus.

The drastic disparities in the impact of the coronavirus are attributed to the fact that individuals with developmental disabilities are more likely to have underlying health conditions leaving them more susceptible to the effects of coronavirus. Additionally, many individuals live in settings that include extended family, caregivers, housemates or rotating staff. Coming into contact with other individuals in close quarters increases the risk of coronavirus transmission, as one positive individual can unknowingly spread the virus to others. Coronavirus transmission is also complicated by instances of asymptomatic carriers, as well as close personal contact and the inability to observe social distance in order to attend to an individual’s personal care needs or other household tasks.

Many services for individuals with I/DD have been suspended temporarily during the pandemic. Day services settings that provide valuable social, recreational and skill-building opportunities to individuals with I/DD cannot safely support the same numbers of individuals while adhering to social distancing guidelines. Reduced program capacity has impacted programs’ abilities to remain solvent, leading some services to close their doors indefinitely. Much like day services, employment services also have been impacted, with individuals experiencing reduced work hours, eliminated positions and fear about continuing to work at all due to the risk of exposure.

In addition to reduced access to services, the national shortage of direct support professionals (DSPs) has intensified during the pandemic, impacting services for individuals with I/DD. DSPs are an important lifeline responsible for ensuring that critical supports for health and safety continue uninterrupted during an uncertain time globally. DSPs are tasked with helping individuals to establish new routines that include meaningful and engaging activities to substitute for the interrupted routines on hold due to the pandemic. The shortage of DSPs, which existed prior to the onset of coronavirus, is further exacerbated due to fears of working in closed settings with increasing demands and responsibilities.

While there are no short-term fixes, individuals have really stepped up to embrace helping each other and trying to remain positive while being faced with so many changes. Day providers are exploring new ways of supporting individuals with community engagement opportunities via telehealth, and case managers have successfully supported a number of individuals in transitions to independent housing. Other successes include the increasing effectiveness of telehealth options across the board as a means to engage with individuals in a safe and risk-free way; strong collaborations between provider agencies in an effort to continue to keep individuals safe; parent and caregiver creativity in stepping up to challenges; and advocacy efforts surrounding service needs by regional action groups such as the Charlottesville Area Provider Coalition and the Charlottesville Region Autism Action Group (CRAAG).

Additional resources:

» Region Ten Community Services Board offers services to help individuals with intellectual and developmental disabilities access the full range of needed supports to assist them in their daily lives. (434) 972-1800.

» Help stop Virginia COVID-19 spread by downloading Virginia’s free COVIDWISE exposure notifications app.

» Charlottesville Region Autism Action Group (CRAAG): CRAAG is an autism action group in Charlottesville and Albemarle, Greene, Fluvanna, Louisa and Nelson counties. CRAAG’s mission is to raise awareness and enhance the quality of life for people with autism and developmental disabilities and their families. CRAAG has a unique focus on the adult population, a critically underserved group.

Amy Berry is the director of developmental disabilities case management for the Region Ten Community Services Board.

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