COVID-19 aid is being withheld for those with disabilities
COVID-19 has created unique challenges and dangers for the most vulnerable in our population.
That includes the 6.5 million people with intellectual and developmental disabilities in the United States – including roughly 122,000 in Arizona, according to an estimate from the Arizona Developmental Disabilities Planning Council, based on 2014 data.
The strains and stresses of extended isolation have been highly disruptive or even life-threatening for people with such disabilities, noted Tia Nelis, policy and advocacy director for TASH, an international disability advocacy organization.
Social interaction for people with disabilities is critical because many rely on the assistance of direct support professionals to perform tasks that someone without a disability might consider routine.
But the call to stay at home and social distance during the crisis means many direct support professionals have not been able to provide in-person individual or group services without the risk of infection.
Complicating what’s already a difficult situation is the holdup of federal financial relief.
In March, the CARES Act established the Public Health & Social Services
Emergency Fund. To date, Congress has appropriated $175 billion to the fund, but the U.S. Department of Health and Human Services has failed to allocate a single dollar to Medicaid, which funds the vast majority of support on which people with intellectual or developmental disabilities rely.
Why is this urgent? Direct support professionals, already grossly underpaid, are risking their health during the pandemic. According to The Case for Inclusion 2020, published by United Cerebral Palsy and the ANCOR Foundation, the field has long been characterized by low wages and high job turnover.
COVID-19 only deepens the crisis. The rationing of personal protective equipment to ensure there’s enough for frontline hospital workers or emergency medical personnel has limited supplies for those who assist people with disabilities.
Parents with children who have disabilities have suddenly found themselves homeschooling, while also becoming round-the-clock caretakers.
Nicole Anderson of Phoenix is one of those parents. Her 5-year-old daughter, Alexandra, has Pitt-Hopkins syndrome, a rare neurological disorder often accompanied by a lack of speech and mobility, breathing problems and epileptic seizures.
Fortunately, she and her husband have been able to work from home. “It’s a new reality we’re all adjusting to,” Anderson said. “Alexandra challenges us every day to be the best version of ourselves, so we can help her be the best version of herself.”
Alexandra’s doctor, Michael Kruer, who serves as director of the Cerebral Palsy and Pediatric Movement Disorders Program at Phoenix Children’s Hospital, said most of the families he works with have adjusted to the new circumstances.
But he worries about children living in group homes for young adults and those in chronic care facilities. “Anytime you have groups of people together, the potential of infection is higher,” said Kruer.
The Health & Human Services department’s inaction is troubling. But we are fortunate, and hopeful, that we have Arizona’s senators on the case.
Kyrsten Sinema and Martha McSally have urged the department to immediately designate funding for disability supports. Now it’s time for their colleagues on Capitol Hill to exercise Congress’ key oversight authority and hold it accountable for the funding that Congress allocated.
Without funding to meet our goal of ensuring the health, well-being, and inclusion of the people with disabilities, organizations like ours run the threat of being unable to deliver the caliber and variety of critically needed services we have provided for decades.