Hospitals Allegedly Violate RI DOH Visitation Policy For Patients With Disabilities

By Gina Macris

Family members of people with developmental disabilities reportedly are being barred from visiting hospitalized patients despite a revised Rhode Island state policy that allows essential support persons to help facilitate their care.

Both Disability Rights Rhode Island (DRRI) and the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) have received complaints that hospitals are preventing caregivers from seeing patients with disabilities.

DRRI is seeking additional feedback from the community on how the policy is being implemented when those with intellectual or developmental disabilities are hospitalized, by phone at 401-831-3150 or by email at contact@drri.org.

The alleged hospital policy violations come in the face of apparent improving health statistics, which indicate that no deaths of residents of group homes for adult s with developmental disabilities have been reported for nearly three weeks.

Still, families of persons with intellectual and developmental challenges have complained that hospitals are barring them from visiting loved ones, contrary to a Department of Health policy adopted in early May that says essential support persons can accompany patients with disabilities to facilitate communication, equal access to treatment and the provision of informed consent.

In one particular case, Kevin Savage, the Director of the Division of Developmental Disabilities, contacted hospital “risk management” officials, who agreed to help, according to a BHDDH spokesman. The spokesman said the situation still was still not resolved to the family’s satisfaction.

In addition, the BHDDH director, A. Kathryn Power, contacted Dr. Nicole Alexander-Scott, director of the Department of Health. She, in turn, “reached out to all hospital CEOs to reinforce the RIDOH guidance in order to reiterate the rights of people with I/DD,” according to the BHDDH spokesman.

DRRI’s counterpart in Connecticut, along with other statewide and national advocacy organizations, had tried since April to persuade that state’s public health officials to allow support persons to help hospitalized patients with disabilities, but ended up filing a formal discrimination complaint with the Office of Civil Rights of the U.S. Department of Health and Human Services on behalf of three patients in separate hospitals.

That complaint was settled with a change in Connecticut’s hospital visitation policy, announced by Disability Rights Connecticut on June 9.

In Rhode Island, a total of 158 people living in group homes for adults with developmental disabilities have tested positive for COVID-19. The total includes 10 persons who have died, with the most recent death reported June 2, according to BHDDH spokespersons.

On a related front, a federal judge is seeking guidance from an independent monitor on ways community-based integrated services should change in light of the coronavirus. Daytime services have all but stopped since the pandemic hit Rhode Island in March, and the state has not yet adopted a formal plan for them to resume on a large scale.

The U.S. District Court and the U.S. Department of Justice have jurisdiction over the state’s daytime services under a 2014 consent decree intended to correct Rhode Island’s segregation of adults with developmental disabilities, a violation of the Americans With Disabilities Act.

Chief Judge John J. McConnell, Jr. has recently ordered the independent court monitor in the case to prepare a report by the end of the month on how to approach community-based integrated services in light of the lingering health and safety concerns posed by COVID-19. 

The monitor, A. Anthony Antosh, is expected to submit the report by the end of June. McConnell has scheduled a court hearing on the consent decree July 30 at 2 p.m. The hearing will be accessible to the public by telephone and through the internet’s Zoom service.

COVID-19 Claims 3 More Lives in RI DD Group Homes; Advocates Press For Justice

By Gina Macris

As the death toll from the coronavirus has ticked up in Rhode Island group homes for adults with developmental disabilities during the last two weeks, two community organizations have turned their focus to the multiple aspects of social justice - in health care equity and in issues of race.

As of June 3, a total of 10 group home residents have died from COVID-19, or 3 more than were reported about two weeks ago, on May 19, according to a spokesman for the state Department of Behavioral healthcare, Developmental Disabilities and Hospitals (BHDDH,)

Those who have died are included in a count of 138 persons with developmental disabilities in congregate care who have tested positive for the disease. The total represents an increase of 16 cases since May 19, according to figures provided by the spokesman.

Of all those who have become ill, 17 persons have been sick enough to be hospitalized at one point or another, the BHDDH spokesman said.

While the incidence of coronavirus is on the wane in Rhode Island, Disability Rights Rhode Island (DRRI) has been scrutinizing what it says are discriminatory state health care guidelines which could still be used in the future to ration care if the hospital system becomes overwhelmed.

A spokesman for the Rhode Island Department of Health said DRRI and several disability-related partner organizations have provided “important feedback” that will be considered as health officials move forward.

The developmental disabilities community has been preoccupied in the last few months with issues of equity in access to protective equipment and health care resources for vulnerable people, but ongoing concerns about civil rights should be put in a broader context in which racism permeates, said Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI).

Spears and Michael Andrade, President of the CPNRI Board of Directors, issued a statement June 2 saying that CPNRI “stands in solidarity with the people and communities in our state and across the country who continue to bear the physical, emotional, and economic effects of racism” - including people of color who belong to the direct care workforce and families supported by CPNRI.

The statement was prompted by the death of George Floyd, a 46 year-old black man who suffered a heart attack May 25 after a Minneapolis police officer put his knee to the man’s neck for nearly nine minutes. Floyd’s death has roiled the nation, from protests in the streets to politics at the highest levels in Washington.

“We speak out against the historical and current violence against Black, brown, and other members of marginalized communities,” Spears and Andrade said. “As a network, we remain committed to upholding social justice and dismantling systems of oppression and discrimination that further violence and neglect,” the pair said, pledging to work with other like-minded groups throughout the state and the nation to “combat the root causes and outcomes of racism.”

Meanwhile, Disability Rights Rhode Island (DRRI) has recommended changes to eliminate what it says are inherently discriminatory provisions in recent guidelines issued by the state Department of Health that could be used in allocating health care resources.

DRRI acknowledges that the discussion remains theoretical – for now – as hospitals have not exceeded their capacities and emergency facilities set up to deal with an overload of coronavirus patients have remained unused.

In a May 19 letter to the Director of Health, Nicole Alexander-Scott, MD MPH, DRRI and other partner organizations have said the “Crisis Standards of Care”, issued April 25, leave the door open for discrimination against those with disabilities and older Rhode Islanders by allowing health care officials to make subjective decisions about patients’ long-range survival or quality of life after discharge.

In response to a query from Developmental Disability News, a DOH spokesman said the department has “a commitment to ensuring equitable and just access to care for all Rhode Islanders, especially more vulnerable populations.

“We worked hard to try to have that commitment reflected in the document that was developed. Having said that, this is important feedback that we are going to consider internally as we look forward and think about ways that we can better ensure health equity for everyone throughout the state,” said the spokesman.

DRRI noted that Rhode Island’s principle for ensuring equity in access to healthcare “acknowledges the need for transparent criteria for allocating resources that are free from influence by inappropriate factors such as race, gender, socioeconomic status or sexual identity.” But the letter said that “disability and age” are missing from the list of inappropriate factors. This omission “appears intentional,” since the triage assessments and criteria described in the guidelines authorize “explicit and implicit” consideration of age and disability in excluding patients from access to scarce resources.

Among other things, the guidelines allow hospitals to screen out patients having a “medical condition associated with a short life expectancy” from access to critical healthcare resources, DRRI said. “Because ‘short life-expectancy’ is not defined, hospitals and clinicians are free to interpret the term and make subjective judgments regarding its meaning,” the letter said.

Many people who are aging or have disabilities also experience medical conditions that can be perceived as shortening life expectancy, and are at higher risk for being excluded from consideration based on clinicians’ subjective decisions, the letter said.

Although the guidelines take into account some conditions which are accommodated during the triage process, they fail to recognize pre-existing impairments such as limitations in mobility or speech, which would have an effect on an assessment of traumatic brain injury, DRRI said.

Nor do the guidelines mention federal laws applying to hospitals that prohibit discrimination on the basis of disability and require hospitals to make reasonable modifications to policies and practices to allow persons with disabilities to benefit from the services provided.

In a detailed analysis of the DOH guidelines, DRRI described the pertinent sections of federal anti-discrimination laws: Title II of the Americans With Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and Section 1557 of the Patient Protection and Affordable Care Act (ACA.)

DRRI recommended revising the Crisis Standards of Care to comply with civil rights laws by eliminating criteria linked to survival beyond the illness which prompted the hospitalization at hand and by requiring hospitals to make accommodations for disabilities, like limitations in mobility and communications skills.

It also recommended that DOH broaden the grounds for appeal of triage decisions to include discrimination on the grounds of disability. The current grounds for appeal, permitted only for technical or procedural injustices, are overly narrow, DRRI said. To read the letter in its entirety, click here.

The letter was signed by Morna Murray, executive director of DRRI, as well as Steven Brown, executive director of the American Civil Liberties Union in Rhode Island; Amy Grattan, executive director of the Paul V. Sherlock Center on Disabilities at Rhode Island College; Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, Advocates in Action; Joanna Scocchi, director of the ARC Rhode Island Family Advocacy Network; Debra L. Sharpe, executive director of the Brain Injiury Association of Rhode Island; Spears, the CPNRI director, Marc Anthony Gallucci, executive director of the Ocean State Center for Independent Living; and Kim M. Einloth and Kiernan O’Donnell, co-chairs of the Rhode Island Employment First Task Force.

First COVID-19 Death Reported In RI DD Group Home

By Gina Macris

A woman with developmental disabilities and underlying medical issues living in a Rhode Island group home has died of COVID19, according to the state Director of Health, Nicole Alexander-Scott, M.D. MPH.

The death of the young woman, in her twenties, is one of a total of 56 deaths attributed to the virus as of April 11.

The woman, who lived in a group home managed by AccessPoint RI, died unexpectedly April 1, and was tested post mortem, said a spokesman for the state developmental disabilities agency. The test results were not available until April 9, when Alexander-Scott first disclosed the group home death. At the time, she gave no details.

The woman’s family and the people who cared for her in the group home are “devastated,” said Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association for about two thirds of the three dozen private agencies supporting adults with developmental disabilities in residential and daytime programs, including AccessPoint.

There has been a cluster of cases associated with AccessPoint RI, just as there has been in the case in several nursing homes, said a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The spokesman said the state has assigned a public health nurse to work with administrators of the group home on protocols to isolate the sick and monitor residents for system, just as it does for nursing homes and other congregate care settings where there have been clusters of at least three or four cases.

The spokesman, Randal Edgar, said BHDDH “automatically reviews all deaths or near deaths and will review this case and the response to the emergency now at hand. It is important to stress that BHDDH is confident that the provider acted in accordance with all RIDOH protocol.”

Spears also expressed her confidence that all the member agencies of CPNRI are doing their utmost to protect the people in their care.

Like the elderly, people with developmental disabilities tend to be more vulnerable to COVID-19, and congregate care settings like nursing homes and group homes only increase the risk of exposure.

It is unclear how far the coronavirus has spread among the 1180 residents of group homes for adults with developmental disabilities in Rhode Island.

On April 11, Governor Gina Raimondo reported 334 new cases, for a cumulative total of 2,349. She said there are 183 people hospitalized with COVID-19.

Alexander-Scott said there are 123 cases in ten congregate care settings, excluding nursing homes, but details were not immediately available on the number of persons who have tested positive in group homes for adults with developmental disabilities, or how many of those homes the virus has affected.

On April 9, a spokesman for the state developmental disabilities agency said 23 residents in six group homes had tested positive.

Alexander-Scott said that the Department of Health is taking “aggressive steps” in congregate care to “understand the landscape” involving the virus those settings. Among them is testing of asymptomatic individuals who have been in proximity to an infected person to better inform officials on how to best monitor each setting.

On the day before Easter Sunday, one of the biggest family-oriented holidays of the year, both Governor Raimondo and Alexander-Scott hammered home the importance of social distancing in delaying and flattening an expected surge in cases, with special attention to group living situations.

Raimondo said officials had a conference call with the leadership of nursing homes “to reiterate the absolute directive not to allow visitors.”

“The message to families to not visit loved ones in a nursing home is very difficult,” she said. The restrictions even prohibit families and friends sending packages or baskets, because each delivery person who goes inside the home represents another potential risk of exposure.

Nor should loved ones go to the windows of residents’ rooms, the governor said, because sometimes windows get opened, and that defeats the purpose of social distancing.

Instead, Raimondo called on Rhode Islanders to “be creative to show the love” with phone calls, video chats, and photos of flowers and other gifts.

“We want people to be receiving and sending the love, but we need this to be a stern message,” she said.

On a personal note, the governor said that Easter will be difficult for her, as well. It will be the first time in her life that she won’t see her mother on the holiday.

Unannounced Group Home Inspections Begin in Rhode Island

By Gina Macris

Unannounced inspections of Rhode Island group homes for adults with developmental disabilities began Monday March 28 in the wake of the recent death of a woman who lived in the College Park Apartments in Providence, according to a spokesman for the Executive Office of Health and Human Services.

College Park closed March 25, the day after the last of the 14 people still living in the apartments were moved to new housing. Since the beginning of 2015, College Park had been the subject of a total of six complaints of patient abuse or mistreatment, according to a spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). 

In addition to criminal investigations underway by the State Police and the Attorney General’s Office,  Elizabeth Roberts, the Executive Secretary of Health and Human Services, has ordered a “comprehensive review” of all licensed group homes in Rhode Island whether they are privately owned or run by the state, according to her spokesman, Michael Raia. He clarified previous indications from BHDDH that the inspections were to target only state-run group homes.

Raia said March 29 that Roberts had asked BHDDH Director Maria Montanaro and Department of Health Director Nicole Alexander-Scott to work together on the review, starting with inspections of the homes with the “highest risk assessment.” 

Inspectors and investigators from both the health department and BHDDH are working as a team on the inspections, which are being prioritized according to “incident reports and complaints for a set period of time,” Raia said. He could not immediately elaborate on the time period in question, although he said the initial round of inspections includes both private and state-operated facilities.  

Updating previously available statistics, Raia said there are 27 licensed state-run group homes, excluding College Park, and 251 licensed homes owned by private agencies.

Nine of the privately-run group homes are vacant, leaving 242 homes that house a total of 1,162 people as of Feb. 29, he said.  Raia said 156 individuals live in state-run group homes, and 284 people are with families in shared living arrangements.