The letter to Virginia Gov. Ralph Northam warned of a crisis within a crisis: The industry built to support adults with developmental disabilities was being financially crushed by the pandemic.
They say they received no response to the June 1 plea for help.
Now they are calling on Virginia lawmakers to address their needs in the Aug. 18 special session of the General Assembly, and sending another letter to Northam (D), warning that “unless immediate and substantial action is taken, several providers may face imminent threat of closure.”
“The individuals we’re supporting have been forgotten in these conversations,” said Joanne Orchant Aceto of MVLE, which provides jobs and day programs for adults with disabilities.
Their worries reflect challenges faced by organizations serving people who are more vulnerable to the virus across the Washington region and the country. As the pandemic drags on and leaders brace for many more months ahead, the financial toll of keeping people well is exacerbating long-standing funding challenges.
In Virginia, more than 5,000 people with developmental disabilities live in the state’s more than 1,600 group homes, typically with four to six people per house. These family-size environments, the product of years of court-ordered reforms, have kept the virus from spreading in the way it has at large-scale retirement homes. Virginia disability group homes have recorded fewer than 200 confirmed cases and 16 deaths since March.
Advocates say that success has been the product of increased staffing and costly personal protective equipment — all of which are harder to come by when organizations are smaller and less visible.
“We need the same kind of support that any other long-term care facility needs,” said Jennifer Fidura, executive director of the Virginia Network of Private Providers, which represents group homes across the state. “But when you start looking to be on the list to get PPE, or to be able to get contact tracing and testing from the local health departments, you get a person saying, ‘Who are you?’ ”
Representatives of a coalition of 40 providers in Northern Virginia said they sent the June letter to Northam in hopes of attracting a fraction of the attention paid to nursing homes during the pandemic.
Northam spokeswoman Alena Yarmosky did not provide an explanation for why the letter went unacknowledged but said the governor is “committed to supporting individuals with disabilities and the critical organizations that serve them.”
She addressed the service providers’ No. 1 request that they see as a first-step solution to their precarious situation. Before the pandemic, the General Assembly increased the amount that providers would be reimbursed by Medicaid for their services. But in April, Northam froze all new spending in the state in response to the pandemic. The allotted funds were never made available.
Service providers say releasing those funds now would help them handle the months to come.
“Governor Northam looks forward to working with them to structure an updated budget in light of these immense challenges,” his spokeswoman said.
In their new letter to Northam, the coalition also asked for support for day programs, which provide job opportunities, social activity and therapy for people with disabilities. With the virus impeding their ability to do in-person activities, these programs say they aren’t receiving the level of Medicaid reimbursements they need to stay afloat. Retainer payments made by Medicaid to tide them over ended in July.
Without day programs for residents to go to, group homes had to hire additional staff to cover the hours in which the houses would typically be empty. At the Arc of Greater Prince William County, which runs 18 group homes, that meant spending $259,000 on additional staffing, executive director Karen Smith said. They had to furlough employees who worked in child care, day services and administration.
Three of those homes have had residents test positive for the virus. In an instant, the workload in the house increases exponentially, as nurses attempt to keep other residents from becoming infected. Most group home residents have medical conditions that make the virus far more dangerous for them. The Arc of Greater Prince William has spent $115,000 since March to give nurses isolation gowns, gloves, foot coverings and N95 respirator masks, and $12,000 on hazard pay.
Despite their efforts, staff members have tested positive and in June, nurse Angela Reaves died after contracting the virus. She was 62.
“Her loss solidified the reason to push [for more funding],” Smith said. “She looked at each one of our individuals and knew they had worth. She made certain that came across to them.”
Sean McGinnis, executive director of the Hartwood Foundation and one of the authors of the letter to the governor, said he hopes that lawmakers will be thinking of the people he serves.
“It’s the right thing to do at a critical time,” he said. “We’ve got to keep people healthy and safe, and save the service system as we know it.”
