Anthony Donatelli is a sports buff who enjoys going to events as a spectator and participating in them, too. He plays rec-league baseball, soccer and basketball, and inside this 30-year-old’s bedroom within a Bethesda home are trophies and medals to prove his success. In early March, he was thrilled to attend a NASCAR race, the Auto Club 400.
Down syndrome hasn’t gotten in Anthony’s way, but concerns around the coronavirus pandemic have – keeping him from the activities he loves. The same is true for the approximately 6 million Americans with an intellectual or developmental disability, many of whom are more likely to become ill with coronavirus because of their disability. They need the support of staff 24/7 to keep them safe and healthy.
As COVID-19 shows few signs of going away soon, nonprofit service providers like Bethesda are doing all they can to provide supplies and extra pay to heroic frontline staff – week in and week out – all at a steep cost. “Organizations that provide necessary support may not be sustainable for the long term without government help, and so far that has been very limited,” said Mike Thirtle, Ph.D., president and CEO of Bethesda. “That is why at both the federal and state levels, support is essential in the next round of funding, to ensure people like Anthony continue to have the support they need and deserve.”
To remedy the situation, Bethesda is focusing the attention of lawmakers on the following:
- A temporary 12 percent increase in the Federal Medical Assistance Percentage (FMAP) with some of the increase dedicated specifically for home and community-based services. State Medicaid programs need additional federal funds to increase rates for frontline Medicaid providers to help offset the unexpected costs associated with keeping people with disabilities safe and healthy during the COVID-19 pandemic.
- Include temporary payments to DSPs and provide frontline essential health care worker incentives to maintain the frontline workforce. Providers for people with developmental disabilities, which historically have dealt with more than a 50% turnover rate, are struggling even more to maintain a workforce during the pandemic.
- Provide funding to not-for-profits of all sizes impacted by the COVID-19 pandemic and encourage charitable giving by allowing individuals to donate now and deduct it from 2019 taxes.
- Provide federal guidance that direct support professionals (DSPs) are considered essential health care workers. Ambiguity exists as to whether DSPs are considered essential under the general definition of “health care workers” found in the CARES Act. Clarification is needed to ensure that DSPs are included under the definition.
Expand access to personal protective equipment (PPE). The federal government must take steps to secure an expansion of protective equipment for frontline caregivers, including DSPs.
“Too often, the millions of vulnerable people with developmental disabilities are last in line for our lawmakers,” Thirtle said. “Now is the time for our leaders to rise up on behalf of people with disabilities, the staff members who care for them every day, and parents and guardians who are deeply concerned and want the best for their loved ones,” Thirtle said.
Bethesda urges everyone to contact their Congressional representatives. To do so, visit BethesdaLC.org/AdvocateNow.