RI: Life And Death In Split-Screen Reality

Cassiana Fuller at work

By Gina Macris

The statistics are grim: five deaths since April 1 attributed to COVID-19 in connection with group homes in Rhode Island, including four residents with developmental disabilities and one caregiver.

But stories from the developmental disability community are not all about vulnerability.

Some people with intellectual challenges and other developmental disabilities are nevertheless working on the front lines to help get food on people’s tables and keep congregate care facilities clean. Nikolas Simijis, for example, has made a conscious decision to work as a personal grocery shopper in Providence, despite the risks.

Cassiana Fuller recently took on a job in the housekeeping department at the Cherry Hill Manor And Rehabilitation Center in Johnston, undergoing special training in cleaning high-contact surfaces last month just as the coronavis started to hit Rhode Island. And a third worker, identified only as Michael, hasn’t missed a day on the job at Shaw’s supermarket in East Providence since he was hired last August.

Like the rest of the country, Rhode Island is living a split-screen reality, literally and figuratively. At the same time that Governor Gina Raimondo was giving one of her daily briefings this past week on illness, hospitalization, and death from a largely empty reception room at the State House, Nikolas Simijis, Cassiana Fuller, and Michael stood by at their separate workplaces, preparing for their own press conference on Zoom, the teleconferencing app.

The virtual event was sponsored by the Rhode Island chapter of the Association of People Supporting Employment First (RIAPSE) and the Rhode Island Developmental Disabilities Council “to show how people are affected by policies and legislation,” said Kevin Nerney, executive director of the Council.

The federal-state Medicaid program, which pays for employment-related supports that make it possible for Nikolas, Cassiana, and Michael to work, is “so much more” than medical funding, Nerney said.

“It allows people to live independent and meaningful lives and to be full citizens in their community,” Nerney said. (Medicaid also has waived some of its rules to give states greater flexibility in responding to the pandemic.)

The annual event, called “Take Your Legislator To Work Day,” drew U.S. Rep. David Cicilline, representatives of the other three members of Rhode Island’s Congressional delegation, who had to bow out to attend pandemic-related events, and several members of the Rhode Island General Assembly.

Adrienne Tipple of the Perspectives Corporation, who helps Nikolas at Whole Foods on Waterman Street in Providence, said the two of them had serious conversations about “what’s going on in the world, and he made an informed decision to be out here.”

NikolAS sIMIJIS wORKS aT wHOLE fOODS

Whole Foods provides a mask and gloves for Nikolas, who has his temperature taken every day when he gets to work, Tipple said. She is Manager of Youth Transitional Employment Services at Perspectives.

Nikolas uses an iPhone loaded with the software he needs to navigate the store to shop items on customers’ lists, bag them, and hand them off to a driver for delivery.

“Some people can’t come to the store. It would be a risk for them,” Cicilline said. “The work you are doing will help save people’s lives. Thank you for doing it,” he said.

Other legislators – State Reps. Joseph N. McNamara, D- Warwick; Terri Cortvriend, D-Portsmouth; and Katherine S. Kazarian, D-East Providence, as well as State Sen. Louis Di-Palma, D-Middletown, underscored that message.

At the Cherry Hill Nursing Home and Rehabilitation Center in Johnston, Cassiana’s supervisor, Kevin Carrier, praised her diligence and attention to detail, particularly the cleaning of high-contact surfaces like doorknobs and elevator buttons.

Cassiana, Nikolas and Michael all are young and healthy and live with their families. They don’t have any underlying medical conditions which might make other people with developmental disabilities more vulnerable to the virus, especially in congregate care settings.

With the peak in coronavirus cases still a week to ten days away in Rhode Island, according to the experts’ projections, the impact has started to hit the developmental disabilities community.

As of April 18, there have been 35 cases of COVID-19 in group homes for adults with developmental disabilities, while an additional 6 residents of group homes for behavioral health have tested positive. Seventeen group home residents have been hospitalized, according to a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Two of the four deaths of group home residents occurred at different properties run by AccessPoint RI. BHDDH has been working with AccessPoint “throughout the crisis” to contain the virus, identifying relief staff, supplying AccessPoint’s emergency facility with beds and supplies and moving some residents to an alternate BHDDH group home, the spokesman said.

A total of 1180 people with developmental disabilities live in congregate care, but that is less than a third of the population receiving some type of service from BHDDH. The department is asking everone with developmental disabilities and their family members to check in if anyone in the household has tested positive. Details on the check-in, as well as information on other types of outreach, are in the department’s weekly developmental disability newsletter, which can be found by clicking here. The newsletter includes a correction from last week’s installment, saying that those who independently direct services for a loved one may hire a family member as a caregiver.

A widespread shortage of masks, gloves and other equipment in hospitals, nursing homes and other congregate care settings has been one of the issues Governor Raimondo has addressed repeatedly in her daily briefings as Rhode Island competes with other states and with the federal government to get the equipment it needs.

Unionized workers at the ARC of Blackstone Valley protested against a lack of protective equipment and inadequate pay with a caravan of cars outside the ARC of Blackstone Valley at, 500 Prospect St. in Pawtucket April 15.

The rate increase authorized by the state to private providers of developmental disability services pays for a $1 an hour raise, but providers, who have been hit hard financially by the pandemic, are nevertheless offering increases of $2 to $5 an hour for those working in group homes, according to Tina Spears, executive director of the Community Provider Network of Rhode Island.

Mattiello: RI Direct Care Workers Have Been Heard

By Gina Macris

During recent deliberations on the state budget that emerged from the Rhode Island House Finance Committee last week, legislators considered very carefully testimony about the plight of the state’s most vulnerable citizens and those who care for them, particularly with respect to nursing homes, House Speaker Nicholas Mattiello said in a briefing June 20.

Mattiello                         RI state PHOTO

The Finance Committee’s budget prevents any further reductions to Medicaid reimbursement rates to hospitals and nursing homes and commits $11 million in federal and state Medicaid funds to raise the pay of home health care aides and those providing direct support to adults with developmental disabilities.    

“Thank you for the viewpoint,” he said of those who testified for the direct care raises, and we’re glad that in these difficult fiscal times we were able to accommodate that,” he said.

Mattiello’s remarks signaled a growing awareness over the last year about poverty-level wages and high turnover which has destabilized the direct care field and, many say, affected the quality of care.

Along the same vein, the proposed $9.2 billion spending package approved by the House Finance Committee promises to restore free bus passes for the elderly and disabled, at a cost of $3.4 million a year for the next two fiscal years.

The compromise budget that will go before the full House June 22 also puts $26 million into Mattiello’s signature car tax phase-out, enabling 150,00 vehicles to fall off the property tax rolls in the fiscal year that begins July 1. And it partially funds Governor Gina Raimondo’s free tuition plan, allowing two years of free attendance at the Community College of Rhode Island for students who maintain a 2.5 grade average and meet other conditions.

Mattiello said he was proud of the budget, which uses a variety of approaches to close a $134-million revenue gap and still manages to deliver on promises made to Rhode Islanders.

“I didn’t say I was happy with this budget. I said I was very proud of this budget,” Mattiello said.

“You work with what you have and you maximize the benefit to the taxpayers. That’s exactly what we did,” Mattiello said.

State Rep. Joseph N. McNarmara-D-Warwick, echoed Mattiello’s remarks, saying he was particularly proud of the “core values we have represented as the majority of Democrats” and "have defended in a tough budget,” including free tuition, raises for direct care workers and the prevention of erosion of reimbursements to hospitals and nursing homes.

But Mattiello interjected, “I’m going to stop you, Joe. This is not a Democratic caucus. These are the values of the House of Representatives.” McNamara, the chairman of the House Committee on Health, Education and Welfare, also chairs the state Democratic Party.

As for the cost-cutting that must be done to balance the budget – including $25 million in unspecified reductions – Mattiello said: “We conferred with the Governor and the Senate. The Governor believes that although this will be difficult, it’s attainable and we agreed it can be done. “

While the budget uses one-time revenue to close some gaps, it will be paired with one-time expenses and will not add to the state’s structural deficit, Mattiello said.

Even though revenues are lower than expected this year, the economy seems to be going in the right direction, with unemployment down to a level not seen since before the recession of 2008, Mattiello said.

“This is our year to continue our momentum,” he said.  “We’re not going to tax our way” out of the revenue shortfall, “we’re not going to cut our way out of it,” but “we hope to grow our way out of it” as the economy continues to improve.

Legislators Describe "Broken" System of Disability Services

By Gina Macris

For some individuals, there is a big gap between vision and reality under the terms of the federal consent decree that attempts to bring Rhode Island into compliance with the Americans With Disabilities Act.

Legislators described some of the real-life experiences during a session of the House Committee on Health, Education and Welfare (HEW), Thursday, April 7, at which two officials involved with the consent decree briefed lawmakers about progress of the court case.

State Rep. Dennis Canario, D-Portsmouth, said that one of his constituents used to have work through the James L. Maher Center, which is headquartered in Newport, but now he sits at home, doing nothing.

The man had been in a job where he interacted primarily with other people with disabilities, while the consent decree mandates that Rhode Island’s developmental disability system move toward community-based employment. Canario said, in effect, that the second part of the equation has not materialized for his constituent.

“I don’t understand the whole thing,” Canario said, “There are broken parts to it. People are becoming victims.”

A similar account was described by Rep. Joseph N. McLaughlin, D-Cumberland and Central Falls, who said one of his constituents is a man who uses a wheelchair and has had a total of 17 surgeries for a medical condition.

The man’s family has been notified that his state support would be cut off “because he wasn’t working,” McLaughlin said, adding, “Somebody screwed up somewhere.”

Charles Moseley, the federal court monitor on implementation of the consent decree, said there is a variance process for individuals for whom employment is not appropriate.

 Moseley also said he wants to hear from families and individuals who are having problems during the implementation of the consent decree. 

He and A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, said a lack of funding is the chief cause of the problems experienced by individuals who depend on developmental disability services. 

Antosh, who provides technical expertise and guidance to implementation efforts, said a total of 20 percent was cut from the state’s developmental disability budget between 2009 and 20012.

Progressive practices that were commonplace in 2000 and 2001 were “deconstructed” as a result of the cumulative impact of funding reductions and led to the U.S. Department of Justice initiating an investigation into the state’s sheltered workshops, Antosh said.  That investigation resulted in the consent decree, signed in 2014.

An evidentiary hearing on the state’s compliance with the decree – which undoubtedly will touch on funding – is set to begin at 10 a.m. Friday, April 8,  in U.S. District Court before Judge John J. McConnell, Jr.

The HEW Committee Chairman, Joseph N. McNamara , D-Warwick, pointed to gaps in service when young people transition from school-based programs to adult services.

“The last few monthsof school are cruel and unusual punishment,” McNamara said. “It’s one of the saddest things that take place in our schools,” he said.

McNamara said the House recently passed a bill sponsored by Rep. Samuel A. Azzinaro, D-Westerly, Deputy House Majority Leader, that would require school districts to retain students with disabilities through the end of the academic year during which they celebrate their 21st birthday. The bill now needs support in the Senate, he said.

Canario, a committee member and the father of a child with a disability, said the service gap is a big issue.

“I couldn’t agree with you more,” Moseley said.

“Are you saying that exiting school without a transition plan is a violation of the Americans With Disabilities Act?” Canario asked.

Moseley paused, as if to choose his words. The consent decree has “specific requirements” for transition services that include a career development plan, beginning at age 14, he said.

McNamara said, “Transition planning is not taking place.”

He cited the case of a young man from Westerly who was “helping out” at the General Assembly on Wednesdays in a student vocational experience and was suddenly “thrown out of school.”

“He doesn’t understand why he can’t help out with all these activities” any more, McNamara said.

The system is broken, Canario said. “Too many kids – young adults – are turning 18 and their services are being dropped.”

“I’m not disagreeing with you,” said Moseley.