OLMSTEAD UPDATES

News blog follows implementation of landmark 2014 federal consent decree that requires Rhode Island to remedy violations of the Americans with Disabilities Act and the U.S. Supreme Court's Olmstead decision. Over ten years, Rhode Island must reinvent state services for citizens with developmental disabilities to give them opportunities for supportive employment and meaningful activities in their communities.

By Gina Macris

(This article was updated Nov. 18)

Rhode Island group home residents living every day with intellectual and developmental challenges will now have to cope with yet another hurdle - a ban on receiving visitors or visiting family homes – coming just a week before Thanksgiving.

With the state headed toward a lockdown to contain a surge in coronavirus cases, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has advised operators of all state-licensed congregate care settings, including 291 group homes for adults with developmental disabilities, to suspend visits of residents with family and others except in “very specific compassionate care situations.”

At the same time, group home operators “must have a process in place, at all times, to facilitate remote communications between a resident and a virtual visitor” through video calls and other applications on cell phones or tablets, according to BHDDH director A. Kathryn Power.

Kevin Savage, the Director of Developmental Disabilities, announced the visitation ban during a quarterly public forum Monday, Nov. 16. He said BHDDH issued the advisory Friday, Nov. 13 to service providers.

Among the 291 group homes for adults with developmental disabilities, 63 staff members and 33 residents have tested positive for COVID-19 in the last two weeks, Savage said, but none have been hospitalized during that time.

Those figures were disputed Nov. 18 by David Reis, CEO of the Fogarty Center, a private service agency, who said that one staff member died of COVID-19 on Monday and four group home residents are currently hospitalized. A BHDDH spokesman said he would make every effort to double-check the state’s figures as soon as possible.

On Nov. 10, the spokesman said that earlier in the year, a total of 12 people had died from COVID-19, including 9 residents and 3 staff members.

Savage recognized the impact that long-term quarantine or social isolation may have on everyone involved. He urged people to use the mental health activities that BHDDH puts out online. For the BHDDH COVID_19 resources page, including mental health tips, click here.

He also promoted a new series of free, virtual workshops for caregivers sponsored by the Rhode Island Parent Information Network, starting November 17.

Called “Powerful Tools for Caregivers,” the 90-minute virtual workshops feature six weeks of group sessions aimed at helping caregivers cope with issues involving stress management and communication. To learn more or sign up, call the Community Health Network at 401-432-7217 or visit www.ripin.org/chn. The Community Health Network is an initiative of the RI Department of Health administered by RIPIN.

In the wake of reduced social services resulting from the pandemic, Savage indicated that individually-allocated budgets may be used for supports other than staff time, like cell phones or tablets that would help those with developmental disabilities keep in touch with families and friends.

Those who don’t know how to go about requesting the technology, or want to explore other options for their budgets, should start with their social caseworkers, and if they can’t be reached, their supervisors, Savage said. Social workers “won’t get in trouble” if their supervisors are called, he said in response to questions from the online audience. If all else fails, he advised, those seeking information should call the main number at the Division of Developmental Disabilities. That number is listed as 401-462-3201 on the BHDDH website.

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.