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.

RI Senate To Vote On $256.5 Million DD Budget

By Gina Macris

Rhode Island Governor Gina Raimondo’s request for an overall $10 million increase in developmental disability spending in the next fiscal year appears to be headed for full approval by the General Assembly, as the Senate prepares to vote on the $9.2-billion state budget before the current budget cycle closes June 30 and the July 4 holiday weekend begins. 

On June 22, the House ratified the recommendation of its Finance Committee, with Speaker Nicholas A. Mattiello, D-Cranston, saying in advance of the vote that legislators have heard the message of direct care workers making poverty-level pay in high-responsibility jobs.

The Senate Finance Committee is scheduled to act on the budget at a hearing June 27 at 2:30 p.m. in Room 211 of the State House.  A floor vote in the Senate is expected Thursday or Friday.

About $4 million of the developmental disability spending increase would be applied to the current budget and an additional $6 million would go into the new budget cycle beginning July 1. The total allocation for developmental disabilities in the next fiscal year would be $256.5 million.

Even as the Rhode Island House was deliberating, U.S. Senate Republicans in Washington unveiled a health care bill that would severely cut Medicaid funding -– the backbone of essential medical care and other support services for the poor and disabled throughout the country. Within 24 hours, enough Republican opposition to the bill emerged in the Senate to threaten its passage. 

The proposed state budget in Rhode Island includes a total of $11 million for one-time raises for home health care workers and those who work directly with adults with developmental disabilities. Those wage increases would raise the average hourly pay for developmental disability workers from about $11.14 to about $11.69 an hour.

The original language in Governor Raimondo’s proposal used a separate budget article to spell out assurances that the money set aside for the raises could not be used for anything else, but the House version eliminates that article and embeds those mandates elsewhere in the revised budget bill. 

Workers can expect to see the incremental boost in pay no later than Oct. 1. Three months later, on Jan. 1, 2018, the House-approved budget would raise the minimum wage from $9.60 to $10.10 an hour. On Jan. 1, 2019, the minimum wage would advance again, to $10.50 an hour.

State Sen. Louis DiPalma, the leader of a drive to raise the pay of developmental disability workers to $15 an hour by July 1, 2021, said the day after the House vote that he has already begun work on the next phase of the campaign.

Last fall, DiPalma’s “15 in 5” campaign issued an early call for direct care raises, while the executive branch was still working on the budget proposal. In January, when the governor submitted her budget to the General Assembly, she highlighted the pay increases, along with a hike to the minimum wage and other initiatives.  

Several bills intended to speed up the timetable for a $15 hourly wage were introduced in the House during the current session, including one sponsored by Rep. Jean Philippe Barros, D-Pawtucket, Deputy Majority Leader, which would set the starting date for that increase to next Jan. 1.

The prospective budget doesn’t support a $15 hourly rate, but Barros still got a hearing on his bill before the House Finance Committee on June 21.

Direct care workers do an “awful lot of work for some of the neediest” residents of Rhode Island, and “they certainly deserve the benefit for their labor,” Barros said.

Massachusetts is set to increase the wages of direct care workers to $15 an hour in 2018, a development that could exacerbate already high turnover in direct care work in Rhode Island.

Figures on turnover presented to the General Assembly in recent months range from 30 percent a year to 60 percent of new hires in the first six months. There are about three dozen developmental disability service agencies operating in Rhode Island and each one has a different rate of turnover.

Testifying in favor of Barros’ bill, Robert Marshall, spokesman for the Rhode Island Developmental Disabilities Council, said that high turnover, a problem for years, has had a negative impact on those who need care.

Moreover, the nature of the work is changing to emphasize more individualized services, Marshall said, an apparent allusion to new federal Medicaid requirements and federal court enforcement of changes in daytime developmental disability services under provisions of a 2014 consent decree.

The greater individualization means that jobs in the direct service field are no longer interchangeable, he said. 

“Massachusetts will be very happy for us to train the staff and then give them a nearly 50 percent increase” in pay, Marshall said.  In other words, he said, a worker in East Providence can drive an extra three miles and do the same job in Seekonk, Mass., for significantly more money.

The money that is now spent on training new workers and overtime to fill critical gaps in services would probably cover most of the pay increase, Marshall said.

Part of the $10-million increase in the developmental disability budget would be used to fill a $3 million shortfall in the current fiscal year in supplemental payments to private providers and to add another $500,000 to that allowance in the budget cycle that begins July 1. 

The combined increases would hike supplemental payments from $18.5 million to $22 million a year –about 10 percent of all reimbursements made to private providers of developmental disability services – a level that DiPalma, the vice-chairman of the Senate Finance Committee, has flagged as a sign that the standard funding formula for individual clients is not working.

The supplemental payments reflect successful appeals, on a case-by-case basis, of a funding formula applied to a controversial assessment which Rhode Island uses to determine an individual’s ability to function independently. The funding formula does not take into account a client’s goals and preferences in determining individual authorizations – a problem cited by a federal court monitor overseeing reforms to the developmental disability system.

All developmental disability services in Rhode Island are funded by Medicaid at a ratio of slightly more than one federal dollar for every state dollar.

Medicaid has long been an entitlement program in which the federal government matches state outlays for a wide range of services, ranging from health care and nursing home services to specialized educational and therapeutic services for children with disabilities and community-based supports for disabled adults.

The U.S. Senate Republican bill – devised behind closed doors and released on June 22 - would set per-capita limits on federal Medicaid reimbursements to states and threaten many of the services Rhode Island now offers.

The entire Rhode Island Congressional delegation has slammed the bill, saying it amounts to a massive transfer of wealth to the rich at the expense of the poor, the elderly and the disabled through $600 billion in tax cuts.

In a statement, Sen. Jack Reed said, “Trumpcare-supporting Republicans can make all the claims they want, but their motives are obvious: they want massive tax cuts for the wealthiest at the expense of hardworking Americans whose lives, in many cases, depend on access to care.”

Sen. Sheldon Whitehouse said the measure “would gut Medicaid with even deeper cuts than the wretched House version. This will blow huge holes in state budgets, forcing terrible choices between opioid treatment, care for seniors, and students with disabilities. And that’s just the beginning.  It goes after women’s health care. It would allow insurance companies to charge seniors more, and sell plans that don’t offer the basic care Americans expect. It would be bad for Rhode Islanders.”

Governor Raimondo said she will join Reed, Whitehouse and Reps. David Cicilline and James Langevin in “active opposition to this disastrous proposal." 

She accused Congressional Republicans of “trying to pass an immoral piece of legislation,” putting “American and Rhode Island lives at risk so that millionaires and billionaires can get a tax cut.”