By Gina Macris
David Reiss, CEO of the John E. Fogarty Center, manages 18 Rhode Island group homes for adults with developmental disabilities, where all but 10 or 12 of the 80 residents have no place to go and no active family support in case of an outbreak of COVID-19 infections.
“We may be able to prevent people from getting sick if we have the proper equipment,” he said in a telephone interview April 3.
“But how can I ask someone to come to work when we don’t” have the necessary Personal Protective Equipment (PPE)? Reiss asked. “What do I do if I have no staff?”
While Reiss has devised a worst-case contingency plan in the event a resident in one of the group homes becomes ill, he and other providers are pressing the administration of Governor Gina Raimondo to categorize direct care workers as “essential health care workers” during the coronavirus crisis. That designation would allow them to receive protective equipment according to the same priority as nursing homes, and would help group home staff and residents get priority for testing and treatment, he said.
To be sure, Reiss said, hospitals and nursing homes are having trouble getting masks and protective gowns, but their predicaments are recognized publicly, while the pleas of the developmental disability community “seem to be getting no traction.”
“We’re the forgotten community,” he said.
Workers in group homes face the same risks as those in nursing homes, for less pay, he said. The average pay for direct care workers, the result of the reimbursement rates set by the state for private providers, is $13.18 an hour, according to a trade association analysis of wages for two dozen agencies. “There is a huge disaster brewing and it’s in all our back yards,” Reiss said.
There are 1180 adults with developmental disabilities in group homes, including 125 in state-run houses. At least one nurse who works for a service provider has said privately to colleagues that it’s probable the coronavirus will reach the group homes.
As it now stands, without adequate protective equipment and space to isolate the sick, Reiss said, he has no choice but to call 911 and send that person to the hospital. He has asked his staff for volunteers who would be willing to each take a single healthy resident into their own homes to clear two or three facilities as isolation wards for the ill, Reiss said. But that plan is more a hope than a reality at this point, he said.
The request that developmental disability workers be designated essential health care workers has been “kicked up to at least the Department of Health,” Reiss said.
The state’s Director of Developmental Disabilities, Kerri Zanchi, is pressing for the same designation, according to a weekly newsletter emailed to members of the developmental disabilities community March 28.
But it is not clear – to Reiss or others – who has the authority to make such a designation.
Pressed on the matter, a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals said in a statement: “The people who work in the community-based provider systems who are supported by BHDDH are a critical workforce as we fulfill our mission. Our understanding is that the Department of Health is looking at this issue” of essential health care worker designation.
The U.S. District Court, meanwhile, has issued an order that the state “will make best efforts” to ensure that those protected by a 2014 civil rights consent decree continue to receive “Essential Services and Supports,” that are necessary for their “health and safety.”
The order, issued April 1, requires the state to consider recommendations from various segments of the community, including representatives of families, service providers and advocates, for providing “Essential Services and Supports” during the crisis. “Essential Services and Supports” were not further defined.
The order from Chief Judge John J. McConnell, Jr. also requires the state to bring community representatives to the table in its pursuit of waivers, or exceptions, to federal Medicaid rules to allow a more nimble response to the current public health crisis.
McConnell said he wants a report from the state by April 8 on its progress in addressing changes to Medicaid rules with the federal government.
In addition, he said, he wants reports from the state every two weeks on:
· How “Essential Services and Supports” are being provided
· Funding for such supports
· Strategies for maintaining and supporting the direct support workforce
· Communication with those protected by the consent decree, their families and other stakeholders.
Financially, service providers have been hanging on by a thread, in many cases forced to lay off day program staff because of social distancing rules. The Fogarty Center, for example, has laid off 22 workers, Reiss said.
Reiss said he understands the state was processing the first of a series of emergency payments to providers during the week ending Friday, April 3.
These advance payments will “stop the hemorrhaging,” but will not make providers whole, said Tina Spears, executive director of the Community Provider Network of RI, the larger of two provider trade associations in Rhode Island.
Spears has pressed for a statewide rate increase of $4.55 an hour for those who are still at work because of the greater risks and demands on them. That increase would boost the pay of workers in privately-run group homes from an average of $13.18 an hour to $17.73, which is still about a dollar less than the starting wage of those who do the same work in the state-run group homes.
One of the waivers, or exceptions, the state is seeking from the Centers for Medicare and Medicaid Services would allow the state to incorporate rate increases in emergency payments to providers.
The total $15.4 million approved by the state so far represents federal-state Medicaid money already in the budget which is being issued in advance rather than paid after services are rendered. It is intended to protect private providers from bankruptcy during the crisis.
On another front, Disability Rights Rhode Island (DRRI), the legal protection and advocacy agency, said that it has sent a letter to Governor Gina Raimondo asking her to give clear emergency guidance to hospitals and providers to prevent “any discriminatory rationing of health or emergency measures during this time,” according to a statement from the organization.
The Americans With Disabilities Act, Section 504 of the Rehabilitation Act, and the Affordable Care Act all prohibit discrimination on the basis of disability.
In the letter to Raimondo, Morna Murray, executive director of DRRI, said that federal law requires several points to be made in any guidance from the Governor’s Office and the Rhode Island Department of Health to healthcare practitioners “in order to avoid discriminatory outcomes. Murray outlined the following points in the letter:
• Treatment allocation decisions must be made based on individualized determinations, using current objective medical evidence, and not based on generalized assumptions about a person’s disability.
• Treatment allocation decisions cannot be made based on misguided assumptions that people with disabilities experience a lower quality of life, or that their lives are not worth living.
• Treatment allocation decisions cannot be made based on the perception that a person with a disability has a lower prospect of survival. While the possibility of a person’s survival may receive some consideration in allocation decisions, that consideration must be based on the prospect of surviving the condition for which the treatment is designed – in this case, COVID-19 - and not other disabilities. Treatment allocation decisions cannot be made based on the perception that a person’s disability will require the use of greater treatment resources. Reasonable modificitons must be made where needed by a person with a disability to have equal opportunity to benefit from the treatment.
Murray also said that people who use ventilators on a daily basis should never be removed from ventilator support “for reasons of rationing.”
“It is vital that explicit guidance from RI DOH to medical providers clearly set forth that such actions are never acceptable.” She said.
The DRRI statement said its legal operations remain available to the public. The organization indicated its attorneys are particularly concerned about any medical rationing, discriminatory “Do Not Resuscitate” (DNR) orders in hospitals, or emergency placements of individuals with disabilities in congregate settings that are disrupted as a result of the coronavirus. For contact information and details about DRRI operations, click here.
