Predictions of disaster begin to come true in Developmental Disabilities community

By Gina Macris, contributing writer on developmental disabilities

A total of 23 adults with developmental disabilities in Rhode Island group homes — not quite 2 percent of all the 1180 adult residents in congregate care in the state — have tested positive for the coronavirus, as of April 9.

All but four of the residents live in homes run by private service providers licensed by the state. The four exceptions live in group homes of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), a departmental spokesman said April 9. He said eight BHDDH employees also have tested positive.

Of the 23 group home residents with confirmed cases, 9 were hospitalized the morning of April 10, the BHDDH spokesman said. The hospitalizations represent about 39 percent of all adults with developmental disabilities in congregate care who have become ill with COVID-19. That figure is more than four times the 9 percent of the coronavirus-positive population statewide that has required hospitalization, according to figures released by the office of Governor Gina Raimondo April 9.

Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), said the proportion of hospitalizations among residents underscores the general vulnerability of the developmental disabilities population, although she added that she has not heard that any of those hospitalized are in critical condition.

The BHDDH spokesman, Randal Edgar, said: “Many DD group home residents are older and have medical conditions that make them more vulnerable to the COVID-19 pandemic. BHDDH is very concerned about their wellbeing and that is why we are working around the clock to do everything we can to provide care and monitoring and make sure they receive any medical services that are needed.”

Among support staff in the private sector, no more than two dozen have tested positive, but that figure is likely to change from day to day, Spears said April 10.

More than half of the two dozen provider agencies belonging to CPNRI, a trade association, have no infections among staff or participants, she said.

So far, providers are coping, Spears said, but more specific planning is needed to shore up the resources of the private agencies, which are stretched thin in normal times.

State Sen. Louis DiPalma, D-Middletown, said the state needs a formal Emergency Response Plan to address the care of individuals with developmental disabilities who become ill. He said he is trying to organize a collaborative effort to drawing up such a plan.

Among the unanswered questions: What happens in a surge of cases among group home residents, if too many staff also become ill and are unable to care for them?

All agencies have adopted aggressive cleaning protocols – sometimes as frequent as every four hours – and other strict precautionary measures, like body temperature checks, in cases where individuals are particularly vulnerable, but the providers are primarily acting on their own initiatives rather than as part of an official directive.

Efforts are made to quarantine group home residents who have tested positive and those who may have come into contact with the virus but have not been tested. In addition to stepped-up cleaning protocols, group home operators control traffic patterns within a facility and assign only designated staffers to the individuals under quarantine and those who have tested positive.

Staffers who may have come into contact with someone who has tested positive outside of their work assignment rare instructed to self-quarantine at home for two weeks.

On April 7, the office of Governor Gina Raimondo announced a 10 percent increase in developmental disability reimbursement rates for residential services. The rate increase, retroactive to April 1, is set to expire June 30.

The rate increase “recognizes the additional costs organizations are facing related to the COVID-19 crisis,” according Edgar, the spokesman for BHDDH.

“The Governor, EOHHS (the Executive Office of Health and Human Services) and BHDDH are committed to meeting the needs of our state’s most vulnerable residents and supporting our providers,” Edgar said in a statement.

“Our intention is to help provide stability to our state’s DD (developmental disability) providers through this rate increase as well as the recent “retainer payments” (advance funding) which went into effect last week,” the statement said.

Spears, however, said the rate increases apply only to a small portion of the rate structure, while the crisis has had an impact on all operations, including daytime programming, and has resulted in unprecedented costs that threaten the viability of the private provider system.

For example, some agencies have had to offer double-time pay to incentivize employees to work in group homes where there has been an infection.

“There’s no way” they will get coverage if staff are “not incentivized to take the risk,” she said.

But state officials “are working with us at this point,” Spears said. “We’ll take them at their word,” she said.

For weekly updates on COVID-19 from BHDDH, sign up for the newsletter of the Division of Developmental Disabilities by clicking here.

Prior article published a week ago warning of the…  

Huge Disaster Brewing in All our Back Yards – CEO of RI DD Group Home Agency

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 modifications 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.

Gina Macris is a career journalist with 43 years’ experience as a reporter for the Providence Journal in Providence, RI. She retired in 2012. During her time at the newspaper, she wrote two series about her first-born son, Michael M. Smith. Both series won prizes from the New England Associated Press News Executives Association.  Michael, now in his 30s, appears on the cover page, in front of the Rhode Island State House.