RI Advocates Seek Executive Order To Ensure Patient Rights Of Disabled

By Gina Macris

The need of some people with disabilities to have a trusted person at their side to help them communicate with strangers has run up against the visitors’ ban imposed by hospitals to curb the spread of the coronavirus.

These patients have been traumatized and their medical care jeopardized in a violation of their civil rights, say Rhode Island disability rights advocates.

During the first coronavirus surge in the spring, at the urging of Disability Rights Rhode Island and other advocates, the Rhode Island Department of Health adopted a policy that exempts family members and others who act as caregivers from hospitals’ ban on visitors when patients need assistance to receive the appropriate care and to communicate with hospital staff.

But DRRI now says that the policy is not widely understood, and patients who have disabilities like dementia and autism run a high risk of being traumatized in the hospital, exhibiting new problems that make it more difficult for medical personnel to treat them.

DRRI, the Sherlock Center on Disabilities at Rhode Island College, and the Rhode Island Developmental Disabilities Council are seeking an executive order from Governor Gina Raimondo to get quick enforcement of the policy, especially during hospital admission, when it is urgently needed.

In a letter dated December 2, the executive directors of the three organizations cited 7 specific instances during the last two months in which care was compromised and patients were disoriented and severely upset.

The examples, drawn from “dozens” of complaints, including two concerning patients with severe communications problems who were administered anti-psychotic medication when they became uncooperative.

One was an elderly nursing home resident with dementia and depression who is also deaf and legally blind. She was admitted for a broken hip. Another was a young man with autism who is non-verbal. In addition to being drugged, he was restrained physically. Now he is showing signs of dementia, hospital officials have told his mother, who they continue to bar from the hospital.

The health department policy says that “when a support person is essential to the care of a patient with a disability, including patients who have altered mental status, communication barriers, or behavioral concerns (such as patients with intellectual and/or developmental disabilities, dementia, and/or behavioral health needs), accommodations for the patient should be made so that the patient can be accompanied by the support person.”

The policy goes on to describe the role of the support person in facilitating communication, equal access to treatment and informed consent “in accordance with the civil rights of patients with disabilities.” And it gives wide latitude to the definition of support person, including family members, guardians, and paid and non-paid caregivers and advocates.

The letter to Raimondo emphasizes that “this is not an issue of ‘hospital visitation’ policy, as it has sometimes erroneously been termed, although the language is unfortunately (albeit understandably) contained within ‘visitation’ policy provisions.”

“We understand the reasons for curtailing typical visitation in hospitals during the pandemic, and we fully support such restrictions when they are not essential to an individual’s access to care.”

The letter was signed by the executive directors of the three organizations, Morna Murray of DRRI; Amy Grattan of the Sherlock Center; and Kevin Nerney of the Developmental[ Disabilities Council.

The authors said the Department of Health was to follow up on the policy with a plan for ensuring hospital compliance, but no plan has materialized in the last seven months.

Meanwhile, the three agencies have continued to receive complaints from “dozens of individuals and families.” They have helped the patients and families follow up with the hospitals and officials of the health department, the executive directors said. Some have put off needed medical care for family members with disabilities because of the ban on hospital visitation, they said.

“The bottom line is that violations continue to occur and there does not appear to be any single authority that can be cited quickly and conclusively so that the intended policy can be implemented on the spot, when it is needed most urgently,” the letter said.

Having exhausted other channels over the last seven months, Murray, Grattan and Nerney said, they are seeking a virtual meeting with Raimondo to discuss the need for an executive order “to resolve this alarming situation as quickly and conclusively as possible.”

Federal Judge Asks RI For Quick Action To Increase DD Funding And Avoid Court Order

John J. McConnell , Jr.

By Gina Macris

Chief Judge John J. McConnell, Jr. has made it clear he is prepared to use the power of the U.S. District Court, if necessary, to ensure the state of Rhode Island provides adequate funding for adults with development disabilities.

That population of about 4000 people is protected by a 2014 civil rights agreement set to expire in 2024, assuming the Court approves.

Time is already drawing short for the state to make the changes necessary to achieve compliance by the 2024 deadline. The process would require approval by the General Assembly and would have to be running smoothly for a year before the state is released from federal oversight.

But the COVID-19 pandemic has added urgency to the situation, because the state’s compliance depends on some three dozen private service providers that are in such shaky ground financially that they won’t survive the next six months without extra cash.

That was the picture presented to McConnell at a hastily-called virtual court hearing on Zoom Nov. 24.

McConnell gave state officials and advocates until Dec. 18 to figure out a solution to providers’ short-range fiscal problems.

McConnell said he saw “two levels of crisis:”

• an immediate one that threatens the viability of social services for adults with developmental disabilities over the next six months, with conditions changing “second by second, moment by moment, and day by day.”

• a system-wide crisis around the state’s ability to meet the requirements of the 2014 consent decree.

Since last summer, the state has been engaged in a court-ordered planning effort to devise solutions to the systemic issues and present McConnell with a long-range implementation plan by June, 2021.

But the judge said he called Tuesday’s hearing in response to a preliminary fiscal report from an independent monitor, who said the burdens of coping with the coronavirus pandemic posed more immediate threats to service providers.

Cooperative Solution Preferred

McConnell asked the monitor, A. Anthony Antosh, to convene a “collaborative” public-private group to come up with an immediate funding solution by December 18. The collaboration should include state officials, lawyers for the U.S. Department of Justice, and representatives of the community, including the head of a provider trade association, Tina Spears, McConnell said.

Lawyers for the state, including Kathleen Hilton and Marc DeSisto, framed it as a continuation of an active collaboration that already has resulted in one hazard pay initiative.

McConnell said he much preferred a solution devised by the state and its partners in the community, rather than having to resort to a court order.

But he made it clear that one way or another, he considers it his responsibility, as a judge in the “third and co-equal branch of government,” to protect the population with intellectual and developmental disabilities in Rhode Island.

“The advisable way is for the good and smart people to sign off and figure out how to do it,” the judge said.

After hearing from budget director Jonathan Womer, health and human services secretary Womazetta Jones, and other state officials, McConnell said “there is no doubt we have an awesome team in the executive branch whose hearts and minds and souls are in the right place.”

McConnell acknowledged that “quite a bit of money” ($20 million) has been allocated to developmental disabilities during the pandemic, but he said “it has become inadequate as the system currently exists.”

The state “may have fiscal handcuffs on,” as Womer, the budget director, explained, but “for the Court, it’s of no import where the money comes from.”

The state and “all its entities” are part of a consent decree that enforces the civil rights of adults with developmental disabilities under the Americans with Disabilities Act, McConnell said.

“But make no mistake,” he said. If necessary, “the Court will use all its powers to order the state and all its entities to come up with the money,” he said.

Effects Of Pandemic “Unrelenting”

The trade association representative, Tina Spears, director of the Community Provider Network of Rhode Island, (CPNRI) illustrated the current problem in human terms.

In the first three weeks of November, a single provider agency experienced COVID- 19 infections in four of its 18 group homes. Sixteen staff members and eight group home residents tested positive, with four residents requiring hospitalization. Three staffers had to quarantine at home, and one staff member died, Spears said.

Meanwhile, the agency’s day programming, which included expansive work-related supports and other services, is running at 30 percent capacity, she said, running into debt at an exponential rate.

“The situation on the ground is unrelenting,” she said.

Kayleigh Fischer, Director of Budget and Finance for EOHHS, laid out the various federal initiatives, totaling $20 million, that have helped service providers stay afloat during 2020.

And Womer, the budget director, explained the fiscal challenges posed by COVID-19, which has decimated revenue and has saddled the state with a projected budget deficit of $250 million to $275 million by the end of the fiscal year in June, depending on who’s counting.

“It’s confusing. There are a lot of moving pieces and a lot of federal guidance that’s constantly changing,” he said.

“We have more restrictions on spending now because of the pandemic,” Womer said. “We are reducing spending anywhere we can to contain the deficit,” he said.

The state can spend federal grant money like the $1.6 billion allocated to Rhode Island for coronavirus relief, Womer said, but among the exclusions are spending for workforce bonuses, as well as replacing state revenue in the federal-state match for the Medicaid program.

Medicaid is the program that funds the developmental disability service workforce.

Spears Highlights Below-Market Funding

Spears acknowledged that without the emergency funding the state has allocated so far, the developmental disability service system already would have folded.

She said she appreciates the fiscal challenges Womer described, but “this has been the rationale for underfunding our workforce for the last decade.“

In 2011, the state deliberately set reimbursement rates for private providers of developmental disability services below market costs, Spears said. “This fact cannot be overstated,” she said.

The rate-cutting, which resulted in layoffs and sharp wage reductions, has been documented in an exhaustive $1.1 million study commissioned by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH), and by a separate special legislative commission.

Over time, Spears said, the flawed fiscal foundation of the reimbursement model has made it increasingly difficult for providers to recruit and retain qualified workers, a situation that has only been exacerbated by the pandemic.

Today’s average pay for direct care workers is $13.18 an hour, but provider agencies say they must pay $25 to $30 an hour to get workers to go into COVID-positive group homes or homes where residents are in quarantine, according to Antosh, the court monitor.

Antosh has proposed the state deploy $2 million a month from unused developmental disability funding to boost the pay of direct care workers to $20 an hour and cover other expenses related to COVID-19.

Separate from Antosh’s proposal, Spears said, CPNRI has asked Governor Gina Raimondo for COVID Cares Act relief funding for incentive pay for workers in coronavirus-positive group homes and for emergency relocation funds. These funds would be used for temporary quarters to make sure that COVID-negative group home residents can be separated from housemates who are infected.

She did not provide additional detail on that pandemic-related funding request.

Instead she focused her remarks during the hearing on separate recommendations for addressing the structural problems in the fee-for-service reimbursement model.

The state should raise entry-level wages to $17.50 an hour immediately, with a boost to $20 an hour in the fiscal year beginning next July 1, she said. Spears said the state has received an increase in the federal share of the federal-state Medicaid program which has not been passed along to service providers.

In addition, there should be an expedited, yet comprehensive, review of the rate structure that includes the cost of implementing policies mandated by the 2014 consent decree, Spears said. The current rate structure does not support the agreement, she said. She said changes in the rate structure should be ready to be incorporated in the budget that begins next July 1.

The DOJ has found that the overhaul of the developmental disability service system adopted in 2011 incentivized segregated care, in violation of the Integration mandate of the Americans With Disabilities Act.

During the court hearing, Womazetta Jones, the Health and Human Services Secretary, said she wants to work with service providers to do what is feasible and equitable, given all the needs of vulnerable populations.

McConnell replied to Jones:

“As a citizen, I have long admired your service,” he said.

But he pointed out that Rhode Islanders with developmental disabilities have a protection that other vulnerable populations do not.

The DOJ found, and the state agreed, that those with developmental disabilities have experienced violations of their constitutional rights “that can’t continue,” the judge said.

“I don’t want to disagree with anything, but I want to focus on why we are here,” McConnell said.

New Olmstead Consent Decree Coordinator To Guide Court-Ordered ADA Compliance in RI

By Gina Macris

Rhode Island is looking for someone to coordinate its compliance with a 2014 federal civil rights agreement affecting adults with developmental disabilities – for the sixth time in as many years.

The state created the position of Consent Decree Coordinator at the insistence of an independent court monitor who wanted someone with the clout to break through the “silos” of three departments of state government and hammer out an integrated response to the compliance steps in the agreement.

Since the spring of 2019, the position has been filled by Brian Gosselin, the Deputy Secretary of the Executive Office of Health and Human Services and its former Chief Strategy Officer.

Brian Gosselin

His tenure has been marked by controversy that has included a dispute – or misunderstanding, as Gosselin put it- over the independence of a community organization which was settled only by a letter from the U.S. Department of Justice.

Members of the community organization, the Employment First Task Force, have more recently described Gosselin’s consent decree work as “invisible.”

Now the state is under a court-ordered timeline to implement sweeping changes and it has decided to seek an independent contractor, reporting to Claire Richards, Governor Gina Raimondo’s Executive Counsel, to become the consent decree coordinator.

Louis DiPalma

The move won kudos from State Sen. Louis DiPalma, D-Middletown, the General Assembly’s most prominent watchdog on services for adults with developmental disabilities.

“I applaud the state, specifically Governor Raimondo, for elevating the position, by having the CDC (consent decree coordinator) report directly to her office, independent of any state agency,” DiPalma said in a statement.

However, Kerri White, Director of Public Affairs for EOHHS, said that the new consent decree coordinator will not be the first to report to the Governor’s Executive Counsel.

“The new Consent Decree Coordinator will continue to work with the established EOHHS, BHDDH, DHS and RIDE team but will have an avenue of escalation through the Governor’s Executive Counsel in order to maintain the compliance momentum achieved through the previous Consent Decree Coordinator,” White said in a statement.

She referred to the agencies involved in the state’s combined consent decree response, including the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), the Department of Human Services (DHS), and the Rhode Island Department of Education (RIDE), as well as the Executive Office of Health and Human Services, which supervisory authority over BHDDH and DHS.

White said both Gosselin and the first coordinator, Andrew McQuaide, have reported to Claire Richards.

Midway through McQuaide’s tenure, his position in the bureaucratic heirarchy was lowered, when he was transferred to BHDDH. Three successive coordinators, Mary Madden, Dianne Curran, and Tina Spears, all worked from EOHHS.

Madden, who succeeded McQuaide, and Curran, who followed Madden, both had “substantial interaction” with Claire Richards, White said. Spears succeeded Curran. Gosselin, who by that time had twice served as interim coordinator, took over from Spears.

The appointment of Gosselin as coordinator in 2019 sparked criticism in the community, most notably from DiPalma, who said the choice of a salaried employee with loyalties to the state posed a conflict of interest.

“If you’re working for the state, I don’t know how you work for the 4,000 people” the consent decree seeks to protect, DiPalma said.

At the time, an EOHHS spokesman said Gosselin would bring “stability” to the coordinator’s job, and the state’s principal lawyer for the consent decree case said it was immaterial, legally, whether the consent decree coordinator was a state employee or an independent contractor.

DiPalma agreed that stability was critical but said “no rationale has been given for why we have had five coordinators in the last five years.”

Later in 2019, members of the Employment First Task Force, a community-based advisory organization created by the consent decree as a bridge between the public and government, told the DOJ about a disagreement with Gosselin.

They said Gosselin had attempted to curb the group’s contacts with the DOJ unless a particular outreach attempt had state approval. The matter escalated, until the DOJ sent a letter to the state’s lawyers that clearly underscored the independence of the Task Force.

DOJ lawyers said they hoped the situation was indeed a misunderstanding, as asserted by the state. The letter went on to say that members of the Task Force are “independent stakeholders with a role in the successful implementation of the consent decree.”

“Indeed, any limitation on open communication would undermine the intended autonomy of the Task Force,” the DOJ letter said.

Until a few days ago, Nov. 17, it was not clear that the state was, in fact, looking for a new consent decree coordinator to succeed Gosselin.

Earlier in November, a BHDDH spokesman said that the state had not advertised for a consent decree coordinator but had sent out a posting to state-contracted temporary staffing agencies for “temporary project management support” to “help organize our pathway to 2024”. That is the year the consent decree is scheduled to expire, assuming full compliance is achieved. The opening was advertised from Oct. 19 to Nov. 9, a BHDDH spokesman said.

“The State recognizes and appreciates Brian Gosselin’s great work on the consent decree and the many other projects that he oversees in his role as Deputy Secretary & Chief Operating Officer for the Executive Office of Health and Human Services,” said the BHDDH spokesman, Randal Edgar.

“Our team structure will remain in place and our key points of contact for the Court Monitor and the Community will remain unchanged,” he said.

“The State team values all of the stakeholder partnerships and recognizes the need for responsiveness to stakeholder concerns,” Edgar said.

The project management job description appeared to be very similar, if not identical, to that of the consent decree coordinator.

After requests for clarification from Developmental Disability News, White, the EOHHS spokeswoman, said that to eliminate any confusion, the state planned to re-post the position with the title of Consent Decree Coordinator.

“Since we are using a staffing agency to hire the Coordinator, we were limited to a prescribed list of job titles from the third-party staffing search agency. We understand this has caused confusion,” White said in an email.

White said the staffing agency that provides the successful candidate will pay the new consent decree coordinator and then bill the state. The budget for the consent decree coordinator is $100,000 a year. That allocation has not been used since Gosselin was appointed consent decree coordinator. Gosselin makes $146,655 as deputy secretary of EOHHS, according to state payroll data.

He will remain in the coordinator’s post during the transition, White said.

Court To Hear Plan To Shore Up RI DD Providers

By Gina Macris

A federal court monitor says Rhode Island must release $2 million a month designated for adults with developmental disabilities to keep service providers afloat between December and June.

The money would be used exclusively to recruit and retain new workers and boost the pay of existing staff to a minimum of $20 an hour, as well as cover the cost of personal protective equipment and other expenses related to COVID-19.

A. Anthony Antosh submitted a three-page report outlining the rationale for his plan to the U.S. District Court Nov. 18 and asked the state to tell the court how it will address the recommendations by Nov. 30. Chief Judge John J. McConnell has moved up the deadline, scheduling an on-line hearing on the status of consent decree compliance at 9 a.m. Tuesday, Nov. 24.

Antosh said that a rise in coronavirus cases has affected the population with intellectual or developmental disabilities in several ways:

• More people are sick

• Private services providers and families independently managing their loved ones’ programs can’t find staff

• The number and frequency of employment-related services and supports for community activities required by the consent decree has declined

Under the current fee-for-service system, providers are increasingly constrained in their ability to file claims with the state, exacerbating their already-precarious financial condition.

Antosh indicated that the state could release $2 million a month to service providers for the next six months because average monthly spending has decreased by roughly that amount from April through October, when compared with the previous six-month period.

He warned that the consortium hired by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to review the system top to bottom concluded that private provider agencies were fiscally “fragile and profoundly undercapitalized” even before the pandemic hit. Now their financial position is even worse, Antosh said.

Private service agencies, which support about 83 percent of the population protected by the consent decree, are using most of their resources to serve adults in group homes, where COVID-19 cases are multiplying, Antosh said. Citing a daily report of new cases provided by BHDDH, he said 28 percent of all positive cases in residents, 35 percent of all positive cases in staff and 21 percent of all hospitalizations have occurred in the past six weeks.

A total of 580 staff and residents in 147 group homes – about half of the 291 congregate care settings in the state – have tested positive since the pandemic began, Antosh said.

Source: A. Anthony Antosh, Court Monitor

Several agencies report they are unable to get staff unless they pay them $30 an hour in COVID-positive group homes and $25 an hour in quarantined homes, where the COVID status is uncertain. Even then, they cannot find enough workers to fill the state staffing requirements, Antosh said.

People with developmental disabilities living in family homes, meanwhile, “are receiving only limited supports related to employment and integrated community and day activities,” the monitor’s report said.

The monitor said the state “has demonstrated good faith in attempting to address the impact of COVID-19” in multiple ways, including:

• Special payments early in the pandemic that allowed providers to bill at pre-COVID rates for two months

• Recent approval of an additional $3 million from the CARES Act to provide up to $1,200 in “payroll support” for existing full time direct care staff or recruitment funds for new staff. That boost is also time-limited, Antosh said.

Despite these and other initiatives, Antosh said, “there is significant concern that, if additional resources are not provided for the remainder of the current fiscal year, providers will be unable to recruit and retain sufficient staff needed to provide the employment and community services required by the Consent Decree.”

Antosh said BHDDH figures show a decrease of $11,444,874 in expenditures for developmental disabilities from April to October, when compared with the previous six-month period, an average of $1,907,479 per month. His plan recommends the state put that money to use by allocating $2 million a month, beginning in December, through the end of the fiscal year June 30, 2021.

As has been the case with other COVID-funding initiatives, providers should submit a proposal and a rationale, Antosh said. He said those who direct their own programs or who live independently or with families also should have access to these funds.

The public may observe the court hearing on line by going to the calendar page of the U.S. District Court and entering the date, November 24, and the name of Judge McConnell. To access the calendar click here.

Visitation Ban Imposed On RI DD Group Homes As COVID-19 Surges Again

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.

Olmstead Monitor: RI Needs Overhaul Of DD System To Comply With 2014 Agreement

By Gina Macris

During the next three years, Rhode Island must completely restructure its services for adults with intellectual and developmental disabilities and increase financial support accordingly to fully comply with a federal civil rights consent decree by the 2024 deadline.

A. Anthony Antosh

That is the conclusion of an independent federal court monitor, A. Anthony Antosh, in an Oct. 7 report to Chief Judge John J. McConnell, Jr. of the U.S. District Court.

At McConnell’s direction, Antosh says he’s also working on a dollar figure for the cost of compliance, using an outside $1.1 million analysis of existing services commissioned by the state itself.

The state agreed, under the consent decree in 2014, to end its reliance on sheltered workshops and group day care centers and instead put adults with developmental disabilities in the driver’s seat when choosing a path in life, with an emphasis on regular employment and participation in community activities.

The last sheltered workshop closed in 2018, but many of the other goals of the consent decree have remained elusive, and Judge McConnell has grown impatient with a lack of funding he says is necessary to lay the foundation for compliance by the time federal oversight is scheduled to expire in 2024.

John J. McConnell, Jr.

“If anybody couldn’t tell, I am obsessed with the issue of funding as essential for us to get there,” McConnell said during a virtual hearing in July.

“If we don’t come up with a way to systemically support the (service) providers, then the whole thing will be meaningless,” McConnell said.

He has said he is prepared to tell the state to “find the money” to comply with the consent decree. State officials who control the purse strings must participate in the redesign of services, the judge has said.

In the most recent monitor’s report, Antosh set the tone for his recommendations by saying that compliance is “not found in a narrow analysis of the benchmarks of the Consent Decree, but is rooted in defining the structural changes that need to occur in order that the goals of the Consent Decree can be achieved.”

In bold print, he highlighted the fact that the outside analysis of the existing system found that most of the private service providers are “fragile and profoundly undercapitalized.”

In a separate report, the state responded to a court order that it address 16 fiscal and administrative barriers to the integration of people with developmental disabilities into their communities as mandated by the consent decree. The summary is the first of six progress reports the state must make to Judge McConnell by next June on its planning effort for long-range reform.

In its report, the state set a deadline of March, 2022 to overhaul its fiscal system. The changes include the elimination of three practices that for years have been identified as problematic by families and providers:

• staffing ratios that discourage community integration, so that in some cases, one worker must supervise up to five people on an outing, whether or not those people want to be there.

• documentation of staff time in 15-minute increments, which providers say diverts significant resources that otherwise could be used for direct services.

• Allocation of a certain percentage of services for segregated facility-based activities.

Alluding to the budget uncertainties caused by the ongoing Covid-19 pandemic, the state’s seven-page summary cautions that the planning efforts are “dependent upon the continuation of current state staffing and budgetary levels.”

Monitor’s Budget For Reform Coming “Soon”

McConnell has asked Antosh to analyze current funding and make a dollars-and-cents recommendation for the cost of implementing the needed comprehensive changes.

Antosh said that report will be completed “soon.” He said he has begun that work, relying primarily on data drawn from an 18-month study done by the New England States Consortium Systems Organization (NESCSO) for the state’s disability agency.

The 143-page NESCSO study presented a number of findings and options for change but made no recommendations, at the behest of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

Antosh said there is a need for systemic restructuring of existing services and supports, which are now “essentially based on group activities that occur in a blend of facility and community settings.”

The situation is exacerbated by a difficulty in recruiting and retaining high quality staff and by the COVID-19 pandemic, which in emphasizing the health risks of large gatherings has “reinforced the diminishing value of facility-based group services,” Antosh said.

The pandemic also has led to a setback in the progress made in the area of employment for adults with developmental disabilities. In June, as the state was beginning to reopen, only 31 percent of those who previously held jobs were still actively employed, Antosh said. (Some on furlough have since returned to work.)

Among work crews hired for large scale commercial cleaning or laundry operations and the like, only about half were working, he said.

The statistics underline a need for “new and intensified approaches to job development,” he said. “What is needed is a new model for providing supports that is more individualized, community based, and uses funds and supports from an increased variety of sources,” including the state’s Department of Labor and Training, Antosh said.

Family Hesitation About Integration

While the gears of state government are focused on moving Rhode Island into compliance with the federal government’s mandate of integrating individuals with developmental disabilities into the larger community, more than a third of the families with an adult son or daughter who would benefit say they oppose or are not yet convinced that the push toward employment is worthwhile.

The pandemic aside, significant numbers of families also express opposition or hesitation about their loved ones’ increased participation in community activities.

For Antosh, who included survey results of families as part of his report, the statistics underscore the need for adolescents to experience work-related and social activities in their communities as part of their education and for families to receive more information about the breadth of available opportunities.

It is perhaps most telling that among families of high school students, who are more likely than their older peers to have had internships and community experiences as part of their education, only 3 percent were opposed to jobs for their sons and daughters and 10 percent said they weren’t sure. Two thirds of families of adolescents said they believed the young people should have jobs as adults. Other parents of high school students – about one in five- said their son or daughter had to deal with other challenges before turning to employment. This is typically the case for those with chronic health problems.

Source: Monitor’s Report To U.S. District Court 10-7-20

The 2014 statewide consent decree draws its authority from the Integration Mandate of the Americans With Disabilities Act, which was reinforced by the Olmstead decision of the U.S. Supreme Court. The high court said that states must deliver services to all persons with disabilities in the most integrated setting that is therapeutically appropriate, and it presumed that setting to be the community.

In 2014, the U.S. Department of Justice found that the state violated the Integration Mandate by funneling high school students from segregated educational programs with low expectations to a lifetime of isolation in sheltered workshops and day care programs. In signing the consent decree, the state agreed to correct the violations by 2024. (A preliminary case against the state and the city of Providence in 2013 was merged into the statewide consent decree a year ago after Judge McConnell found the city and its school department had turned around a segregated high school program for students with developmental disabilities, leaving only the state as the defendant.

Antosh outlined several overarching features of successful implementation of the consent decree, including these:

• Each person will have the supports necessary to enjoy a self-determined, self-directed life based on work and non-work activities in the community.

• Private provider agencies will have the funding, staffing and other resources they need to meet the support needs of all persons receiving funding through the Division of Developmental Disabilities.

• Every adolescent and adult with intellectual or developmental disabilities will have the information and guidance they need to navigate a simpler and more efficient system of services.

• All adolescents and young adults leaving school will have had enough transitional work-related and non-work experiences in the community to make informed choices about jobs and careers, as well as a plan to direct their own programs or sign on with a provider organization.

Antosh recommended that the state develop a three-year budget strategy, beginning July 1, 2021, to “stabilize” developmental disability services and provide sufficient funding to implement the consent decree.

The monitor’s recommendations include a new, formal role for the Department of Labor and Training (DLT), which until now has not been a part of the multi-agency state team responsible for official responses to the court.

Antosh said DLT should immediately join BHDDH, the state Department of Education, the Department of Human Services, and the Executive Office of Health and Human Services in working on consent decree compliance.

DLT also should include all teenagers and adults with developmental disabilities in the workforce initiatives it administers, the monitor said.

By Jan. 1, 2021, the state should create an “Employer Task Force” to promote employment of those with developmental disabilities, Antosh said. The task force would identify relevant workforce trends and advise state officials and provider organizations about ways to reach out to prospective employers and offer employers incentives and support.

By April 1, 2021, the state must identify every possible source of funding that could support the consent decree and describe ways these sources can be “braided” to support the various requirements of the agreement.

As for private providers, the backbone of the service system, Antosh set a deadline of April 30, 2021 for them to develop action plans for the future. There are 36 provider agencies, most of them offering both day and residential services. In their plans, providers should redefine the support area that will be their focus, address consent decree issues, make budget projections and include internal quality improvement programs.

Just as the state has established five workgroups to address fiscal and administrative problems, Antosh recommended the state create additional issue-oriented work groups whose members are drawn from the ranks of state officials and community organizations, like the Employment Force Task Force.

One group would develop strategies to stabilize the workforce by increasing salaries, elevating professionalism through training, and creating a career ladder.

Other groups would address specific plans for:

• putting individuals at the center of mapping out long range and short-term goals for their future and strategies for achieving them

• ensuring young people have a smooth transition from high school to adult services,

• creating new models for providing services and supports for employment and community-based activities.

• enhancing the use of technology as a support strategy

• Developing alternative transportation options, including stipends that allow individuals to arrange their own rides

• Improving outreach to families, including those speak languages other than English and come from diverse cultures.

To read the full monitor’s report, click here. To read the state’s report, click here.

Photos by Anne Peters

Federal Judge Orders RI To Re-Invent DD System

By Gina Macris

Judge McConnell

Chief Judge John J. McConnell, Jr. of the U.S. District Court has signaled that if it becomes necessary, he is prepared to order the state of Rhode Island to fund services for adults with developmental disabilities in an amount that complies with a 2014 consent decree that the state agreed to follow.

“I can’t tell you how impressed I am with people who work day in and day out” to support this vulnerable population and “how committed I am that people with developmental disabilities will get the rights guaranteed them under the Constitution,” McConnell said during a July 30 online hearing on the state’s progress in complying with the consent decree.

“I’m prepared to say, ‘Find the money,’ “ McConnell said after hearing from the state Director of Developmental Disabilities, a spokeswoman for providers, and the mother of a 25-year-old man with complex needs who has had no outside supports since the COVID-19 pandemic struck Rhode Island in March.

“Everyone is attempting to follow the requirements” of the consent decree, “but they are stymied by a lack of funds,” McConnell said, summing up the presentations. In addition, they lack funds to deal with the unexpected costs of protecting people during the COVID-19 pandemic, McConnell said.

He said he finds it “frightening” that private service providers, the backbone of the state’s system, are on shaky financial ground. And, McConnell said, “my heart breaks” when he hears of the burdens on families who have a loved one with intellectual or developmental challenges.

A Personal Story

Carol Dorros, M.D. testified about her 25-year-old son, Sidney, who has heart and lung disease, profound deafness, albeit mitigated by a cochlear implant; significant language limitations; a seizure disorder and diabetes. He nevertheless had an active life before the pandemic, volunteering at a soup kitchen, working at a custodial job in a financial services building, and participating in group activities three days a week. He also had a coach who helped him make art for cards sold at a local bookshop and at some craft fairs, his mother said.

Dorros, an internist who has practiced in Rhode Island for 30 years, said she has not been able to work in the last four months. She said she and her husband have been terrified to have Sidney go out in the community or have staff come to the house, because the family doesn’t know what the outsiders’ circles of contact might have been.

Last week, one support person came to the house to work with Sidney for 90 minutes on his art. “We’re looking forward to that person coming back,” she said.

“Really, we are living quite day-to-day.” Dorros said. She has chosen to direct Sidney’s program independent of an agency, but she said it’s “extremely hard to find staff” with the expertise to manage Sidney’s insulin and communication needs. The coronavirus aside, other parents who direct services for their adult children have made similar remarks about the difficulty in finding the appropriate support people. Dorros said she believes the staffing issue comes down to funding.

Referring to state officials who hold the purse strings, McConnell said,” I fear that the right people aren’t on this call.” In the future “we will need someone from the Department of Administration” and any other pertinent executive branch agency, the judge said.

McConnell said he needs to know how much money the developmental disability service system needs to get through the pandemic, and what it will cost to proceed with the goals of the consent decree, which call for individualized services.

“I want the doctor to have confidence in the people providing the service,” the judge said, referring to Dorros, and he said he wants providers to be funded to provide individualized services. Once the funding is figured out, McConnell said, he wants to see the “problem-solvers, not the problem-makers.”

“If we don’t come up with a way to systemically support the providers, then the whole thing will be meaningless,” McConnell said. “If anybody couldn’t tell, I am obsessed with the issue of funding as essential for us to get there,” McConnell said, pointing out that the consent decree requires adequate funding. (No figure is specified.)

Four-Week Deadline

He gave the state until August 30 to lay out the strategy or process for resolving the funding issue and more than a dozen other barriers to compliance with the consent decree, the time line for resolution of each item, and the agency or agencies with primary responsibility for resolving each problem.

The Aug. 30 deadline is but the first of a year-long court-ordered calendar for working out a new system of developmental disability services.

Providers On Shaky Footing

Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association, said she wanted to emphasize the “unstable nature” of the private agencies that provide services to the adult population with developmental disabilities. Spears represents about two thirds of the three dozen agencies licensed to work with adults with developmental disabilities in Rhode Island.

The day after the court hearing, one of CPNRI’s 23 members, Resources for Human Development, told its clients and their families that it is closing its doors, leaving an estimated 150 persons without services, according to multiple reports. Efforts to reach the director, Rebecca Dimant, were not immediately successful.

The current funding model and administrative rules perpetuate “congregate services and poverty wages for front line workers,” a staffing issue that disproportionately affects women and minorities, Spears said during the July 30 hearing.

COVID-19 has complicated the situation by requiring intensive cleaning protocols, face masks and other personal protective equipment, and social distancing, Spears said. The provider system can’t meet the needs of its consumers with the available resources, she said.

While the incidence of coronavirus in group homes has been low, 11 residents have lost their lives, Spears said. (A spokesman for the Department of Behavioral Healthcare Developmental Disabilities and Hospitals (BHDDH) reports that one of the 11 died of other causes.) Spears said 160 group home residents and 200 staff members have tested positive. About 1180 people with developmental disabilities live in group homes in Rhode Island.

During the past few months, Spears said, providers have been working in close partnership with state officials. Providers have received two months of advance payments during April and May to keep their doors open, as well as a 10 percent temporary rate increase for group home operations and work stabilization funds for front-line employees.

Workers, who make an average of a little more than $13 an hour, temporarily got an additional $3 an hour, Spears said, but it still wasn’t as much as they could get in unemployment benefits.

While the various categories of financial assistance were “very critical and welcome,” Spears said, “they all have stopped and ultimately have not done anything to stabilize the system.”

She said she has been disappointed by a lack of current support from the administration prioritizing developmental disability services for virus infection testing, personal protective equipment and a living wage for workers. In a separate letter to Governor Gina Raimondo dated July 29, Spears has asked for a task force representing the Governor’s office, the court monitor for the consent decree, the state developmental disability service agency, and private service providers to design a “COVID-19 transformation model” over a four-week period.

Spears’ letter also requested

• an increase in reimbursement rates to raise wages to a minimum of $15.00 an hour

• a new funding model that supports individualized services and community inclusion, in compliance the Medicaid Home and Community Based Services Rule (HCBS). (The rule was adopted by Medicaid to follow through on the 1999 Olmstead decision of the U.S. Supreme Court, which reinforces the Integration Mandate of the Americans With Disabilities Act (ADA).

• Priority status for testing and protective equipment for adults with developmental disabilities in congregate care and their staff.

State Agencies Report On Efforts

During the court hearing, Kevin Savage, the acting state Director of Developmental Disabilities, said he agreed that going forward, services must have “different financial supports.” BHDDH has “tremendous value for the providers,” not only CPNRI agencies but the entire community of service providers, Savage said.

BHDDH has sent providers draft rules for reopening and asked for comments from them next week. “The biggest issue is safety for people with developmental disabilities,” he said. “We can’t just re-open programs in a way that we need to shut them down again,” he said, in an apparent allusion to congregate day care centers that were still in operation before the coronavirus reached Rhode Island.

People with developmental disabilities have the same rights, but different needs, he said. Some want to get back to groups, but smaller groups. Some want access from home, Savage said.

Joseph Murphy, a spokesman for the state Office of Rehabilitation Services at the Department of Human Services, told McConnell that the agency has switched to online employment supports when the state closed down in March. “We are open for business, trying to provide services as best we can on a virtual platform” and making sure that bills from providers are paid, he said.

David Sienko of the Rhode Island Department of Education (RIDE) also testified. He said the developmental disability population is part of a larger conversation on re-opening schools. RIDE is responsible for providing transitional services to high school students with developmental disabilities to prepare them to live and work in their communities as adults.

His conversations with special education directors indicate that “pretty much everyone is looking at a hybrid approach” of online and person-to-person instruction, Sienko told the judge. “We know some people need more in-person” teaching, and while that is troubling because of safety considerations, schools still have to address the needs of vulnerable children, Sienko said.

Judge Finalizes Order

The day after the hearing, July 31, McConnell entered an order requiring the state, in collaboration with providers and the community, to address 16 issues identified by the court monitor as fiscal and administrative barriers to compliance with the consent decree.

Antosh, the monitor, said during the hearing that the list of issues reflect “items that have been raised over and over again” for years.

“What we’re looking for is the impetus to get them done,” he said. The list addresses not only the amount of funding for services, but asks for a streamlined application process and addresses a bureaucracy that:

• is designed to link eligibility and funding in a way that translates into the amount of supervision a particular person might need in a congregate setting, as opposed to the individualized services that person needs to accomplish goals.

• limits access to already-approved individual budgets

• Requires documentation of daytime staff time four times in an hour for each client served.

• Forces providers and families to make appeals related to eligibility or funding using an opaque process that does not include a hearing. Even if appeals are successful, the process must be repeated every year.

Read McConnell’s order here. Read the CPNRI letter to Governor Raimondo here.

CPNRI To Host Virtual Forum Tuesday On COVID-19 Impact On RI DD Services

By Gina Macris

Rhode Island’s developmental disabilities community will have a chance to discuss the impact of COVID-19 on services for adults who are intellectually or developmentally challenged during an online forum hosted by the Community Provider Network of Rhode Island (CPNRI) July 21.

The hour-long session, to be facilitated by Tina Spears, executive director of CPNRI, is designed as “an open conversation,” enabling participants to voice concerns and ask questions about what lies ahead for Rhode Islanders with developmental disabilities, according to an emailed invitation.

“We want to ensure everyone understands the current state of the system,” CPNRI organizers said. They also said they want to provide a forum for discussing “actions we can take to ensure the stability of our services moving forward,”

The on-line session, with a closed captioning option, will be Tuesday, July 21 from 5:30 p.m. to 6:30 p.m. Pre-registration is required, as the on-line platform can accommodate no more than 100 participants. If the demand exceeds capacity, CPNRI said, it will host a second forum later in the summer to ensure that all interested participants are accommodated. To pre-register, please click on this link.

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.

Pandemic Pushes Worry Over RI DD System Survival “Front And Center” - Judge McConnell

By Gina Macris

Judge McConnell

The federal judge overseeing the reform of Rhode Island’s developmental disability system says the COVID-19 pandemic has sharpened his concern about the financial ability of the state and its service providers to meet long-term goals of the consent decree, which mandates integration of the target population at work and at play.

Other participants in a May 18 hearing in U.S. District Court in Providence echoed the judge’s concerns, but they also said the pandemic has created a great opportunity to cement changes that might not otherwise have come as quickly.

“The fiscal health and stability of providers has always been in the back of my mind,” said Chief Judge John J. McConnell Jr., noting that his worry has come “front and center with this crisis.” Stability is “essential for the consent decree to play out and be seen as accomplished,” he said.

The state and federal governments in 2014 agreed to a civil rights consent decree mandating employment-related services to provide access to jobs in the community for people with developmental disabilities as well as supports to allow them to enjoy integrated non-work activities. The decree runs until 2024.

Kevin Savage

During the hearing, Kevin Savage, the state’s new Director of the Division of Developmental Disabilities, disclosed immediate financial concerns. He said that the state has not received approval from the Centers for Medicare and Medicaid Services for the second of three advance payments promised to keep private providers fiscally afloat during the height of the pandemic.

On March 26, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) announced that a total of $15.4 million in federal-state Medicaid funding had been set aside for these so-called “retainer payments” during April, May, and June.

While the April payment has received CMS approval, the one for May has not, Savage said. A BHDDH spokesman later said that $5.1 million in advance payments to providers were made May 15.

Savage said it was “important that the state make that payment” to the providers.

The BHDDH spokesman later elaborated:

“When the retainer payments were first described and provided in Rhode Island, CMS had not issued technical guidance on these types of payments.” Since then, he said, CMS has limited retainer payments to a 30-day period, but that “the state is actively working with CMS to expand this time frame.”

CMS reimburses a little more than half of any Medicaid cost applied to the Division of Developmental Disabilities, but if the federal government ultimately does not approve the May 15 payment to providers, the state will be responsible for the entire $5.1 million.

As to the June advance payment, Savage said during the court hearing that the money will be re-cast as an increase in Medicaid rates that adds up to the same amount originally promised to providers.

He also disclosed that one provider decided to change the type of services it offers and the executive director resigned over the issue. Going forward, Savage said, he understands that particular agency would be “less focused” on the kind of individualized work his division wants to do, but he reserved further comment until he has had a chance to speak in depth with agency officials.

The hearing was streamed via the internet application Zoom, as have been previous U.S. District Court proceedings since the federal court building on Kennedy Plaza was closed in early March at the start of the pandemic. For the first time on May 18, however, the hearing was arranged so that the public could see the participants as well as hear them.

Victoria Thomas, a lawyer for the U.S. Department of Justice, said the DOJ is “very focused” on how those protected by the consent decree will get community-integrated services going forward.

The capacity of providers to deliver those services involves more than funding, she said. The state needs to make administrative changes to ensure a stable system of integrated services and supports.

A. Anthony Antosh, the independent court monitor in the case, pressed for two immediate administrative changes:

● Annual funding authorizations for service recipients to replace the quarterly allocations now in place.

● The end of prescribed staffing ratios according to five funding “tiers,” which are based on perceived levels of disability and do not necessarily reflect the amount of support needed for a task at hand.

Savage said the staffing ratios are written into Medicaid rules, and BHDDH could work administratively with CMS to eliminate them. The ratios were designed for center-based day care and providers have argued that the ratios do not work in an individualized community setting. Families and other advocates also oppose them.

Savage said the quarterly funding authorizations were enacted by the General Assembly and cannot be changed without its approval. The fiscal arm of BHDDH favors quarterly payments, he said.

Melody Lawrence, Director of Policy and Delivery System Reform at the state Executive Office of Health and Human Services, said the argument for quarterly authorizations is to “ensure that the resources go to those who need them most.”

McConnell questioned how often people’s service needs change.

“You are doing more frequent checks to make sure people actually need those services,” Lawrence replied.

Two experts have testified before a special legislative commission that Rhode Island is the only state with quarterly funding of adult developmental disability services, a feature which providers have said repeatedly makes it difficult for them to plan ahead or prepare for the kinds of long-term changes the consent decree demands.

The commission, led by State Sen. Louis DiPalma, D-Middletown, recommended more than a year ago that the state switch to annual funding of individualized service plans. It is generally accepted among developmental disability professionals that barring unexpected events, like the death of a family member, the needs of individuals with intellectual and developmental challenges remain fairly stable and predictable throughout their lives.

Savage said that fiscal officials at BHDDH are committed to creating a funding model that is “easier and more straightforward” for providers and families to navigate.

Thomas, the DOJ lawyer, told Savage: “We’ve been hearing that quarterly authorizations create an administrative burden on providers. We like hearing that you want to reduce administrative burdens.”

McConnell asked Antosh to report to the Court by the end of June what the state has done to ease administrative burdens on providers.

Antosh indicated his report will also include a rundown on the changes the state must undertake to satisfy the consent decree by 2024.

Based on his comments in the hearing, he is likely to include recommendations for increased reimbursement rates to providers and provisions for universal access to internet technology for those receiving developmental disability services.

During the hearing, Antosh asked Savage in the short term to eliminate the scale of rates it pays for various daytime direct support work and instead pay the highest one – assigned to community-based activities - for all front-line staff work.

Savage reminded Antosh of the state’s budget deficit, which has been estimated at $234 million in the fiscal year ending June 30 and a whopping $800 million if the next budget cycle is included in the total. He said his division would start on a case-by-case basis by focusing on funding the needs of each individual authorized to receive supports.

Antosh said a lack of access to internet technology has emerged as a big failing during the pandemic. Group home residents need access to wireless networks, as well as to tablets and other hardware that could help them feel less isolated and in the long run could assist providers with remote wellness checks and the like.

A relative handful of people receiving BHDDH-funded supported employment services have been able to work from home, Antosh said, but more would like to try, according to survey results passed on to him.

Technology must be part of the long-term future for the developmental disabilities service system, he said.

The pandemic has curtailed most daytime services and providers’ ability to bill for them in the current fee-for-service reimbursement system. Most of the daytime activities that have occurred have involved outdoor exercise, Antosh said.

At the same time, providers have had to bear the burden of costly cleaning protocols and other unexpected expenses in group homes that are not automatically reimbursed by the state.

As of Tuesday, May 19, the coronavirus affected 47 congregate care sites, according to the BHDDH spokesman. A total of 115 people in congregate care have tested positive, including 5 who were reported hospitalized on Tuesday. An additional 98 people have been exposed to the virus because of where they live but were asymptomatic. And 7 more persons have died from COVID-19, the spokesman said.

Antosh, meanwhile, said the coronavirus crisis has highlighted the fragility of families as well as providers as they have scrambled to support loved ones with developmental disabilities.

Families often have had no support in caring for adult children or siblings who may need attention of one kind or another all their waking hours – and during the night as well.

Antosh said those who direct their own program of services have had difficulty finding staff to relieve them during the crisis. About 700 persons or families direct their own programs, and BHDDH relaxed its rules on hiring staff to allow any capable adult – including parents and legal guardians who might otherwise be out of work.

Savage said a long-standing prohibition against paying legal guardians to support adults who receive BHDDH funding will not be re-instated after the state of emergency is over.

Antosh said 80 percent of family members answering a questionnaire distributed by a coalition of community organizations reported a high level of anxiety.

Seventy percent said they were concerned about what might happen if their loved one needed to be hospitalized or if they themselves became ill and could not continue as caregivers.

(The state Department of Health recently advised hospitals to make exceptions to their no-visitation policy during the pandemic for those who needed assistance in communications and the support of a familiar caregiver to understand medical procedures.)

Outside BHDDH and the Rhode Island Department of Education, which is responsible for transition services for high school students with developmental disabilities, state officials have been “slow to realize how vulnerable this population is,” Antosh said.

But once they understood, officials in other state agencies have become very sensitive to the needs of those with intellectual and developmental disabilities.

He cited the hazard pay awarded to group home workers, a large order of personal protective equipment (PPE) delivered to providers two weeks ago, and another large order for family caregivers that arrived last week, and an increased focus on testing individuals and staff over the last several weeks.

Antosh said “all parties” have joined in discussions about “what re-opening looks like.”

File photos by Anne Peters

RI DD Group Home Death Toll Ticks Up; DRRI Wins Policy Change On Hospital Visits

By Gina Macris

A total of 111 persons, or nearly 9.5 percent of the group home population for Rhode Islanders with developmental disabilities, have tested positive for the coronavirus as of May 13, including 7 persons who have died, according to figures of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) released May 13.

Of the total number of persons testing positive, 19 are currently hospitalized and the remainder, 85, are recovering in their homes, a BHDDH spokesman said.

There has been much concern among families and advocates that persons with developmental disabilities who are hospitalized with CoVID-19- or any other condition - may be denied the support of familiar caregivers or family members who can help them feel more comfortable in frightening surroundings and may also help healthcare providers with communication issues.

A month-long campaign by Disability Rights Rhode Island and other advocates to allow exceptions to hospitals’ no-visitation rules during the pandemic has apparently succeeded in persuading the state Department of Health (DOH) to amend its guidelines to allow children under the age of 18 and adult patients with developmental, intellectual or behavioral challenges to have one caregiver at a time at their side.

According to a May 8 update to the DOH Healthcare Facilities Visitation Policy, exceptions to the no-visitors rule may be made to “facilitate communication with hospital staff, accessibility, equal access to treatment and/or the provision of informed consent in accordance with the civil rights of patients with disabilities.”

The updated policy says a support person may include:

• a family member

• guardian

• community support provider

• peer support specialist

• personal care attendant.

In some instances, two support persons may be designated to alternate shifts, while allowing only one person to be at the patient’s side at any one time.

The amendment also specifies that patients with disabilities should similarly be allowed to use assistive technology, such as smartphones, tablets, communications boards, and other devices to “facilitate communication and ensure equal access.” To read it in full, click here.

Meanwhile, BHDDH has issued final guidance permitting people with developmental disabilities who direct their own program of supports to hire legal guardians, in addition to any other family member or qualified adult, during the COVID-19 state of emergency. Anyone working with adults with developmental disabilities must be able to pass a background check, but the timeline for these reviews has been relaxed and the fiscal intermediaries who handle payments have been given guidance on how to conduct them, according to BHDDH.

The state’s response to COVID-19 in regard to adults with developmental disabilities will be reviewed in the U.S. District Court by Senior Judge John J. McConnell, Jr. May 18 at 2 p.m. McConnell has modified the requirements of a 2014 civil rights consent decree to address the health and safety of the protected class during the pandemic.

The judge and lawyers in the case will have a video conference. The public may listen to the proceedings by dialing into a judge-specific telephone line and entering an access code. The full instructions are on the website of the U.S. District Court here.

U.S. District Court Judge To Hear Status Of COVID-19 Supports For Rhode Islanders With DD

NOTE: THE U.S. DISTRICT COURT HEARING SCHEDULED FOR APRIL 28 HAS BEEN POSTPONED UNTIL A DATE TO BE DETERMINED, according to a notice posted in the case file the afternoon of April 27.

By Gina Macris

Chief Judge John J. McConnell, Jr. of the U.S. District Court in Rhode Island will hold a hearing Tuesday. April 28 - accessible to the public by telephone - on the state’s supports for adults with developmental disabilities during the coronavirus pandemic.

McConnell oversees implementation of a 2014 consent decree and companion agreement mandating integration of adults with developmental disabilities in the workplace and in the community, but he has modified the requirements to cover “essential services and supports” necessary for the health and safety of the protected class in light of the coronavirus pandemic.

The judge will hold a video conference with lawyers for the U.S. Department of Justice, the state, and with the independent court monitor, A. Anthony Antosh, beginning at 9:30 a.m. on Tuesday. Those who want to listen may dial in to Judge McConnell’s dedicated public access line at 866-390-1828 and enter the access code 3402145. A public notice on telephonic public access to hearings in the U.S. District Court, available by on the court’s website or by clicking here, warns that proceedings may not be recorded.

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.

"Huge Disaster Brewing In All Our Back Yards" - CEO of RI DD Group Home Agency

David REISS * Photo Courtesy the Fogarty Center

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 modificitons 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.

RI DD Providers Seek Rate Hikes To Cope With Unprecedented Costs and Risks To Workers

By Gina Macris

Rhode Island’s providers of developmental disability services can expect help from state coffers as early as this week to compensate for losses resulting from the coronavirus, but those emergency payments are no more than the private organizations would have received if they had been able to conduct business as usual, according to the General Assembly’s chief advocate for people with disabilities.

The state’s developmental disability agency announced March 26 that $15.4 million has been set aside for up front “retainer payments” to private service providers over the next three months, including $7.4 million in state revenue and the rest in federal Medicaid funding.

State. Sen. Louis DiPalma, D-Middletown, says providers need more money, and a trade association representing them has asked for an hourly wage increase of $4.55 for caregivers of adults with developmental disabilities, who tend to be at greater risk than the average population for becoming infected with the coronavirus.

The hike, to an average wage of $17.73 an hour, would greatly narrow the pay gap between privately-employed direct care workers and those in state-run group homes, who now make a starting wage of $18.75, with state employee benefits, for the same work.

Meanwhile, the U.S. District Court in Rhode Island has become involved in discussions between state human services officials and the federal Medicaid program in an apparent effort to get federal relief for people and support staff in the developmental disabilities system, among other segments of the population that rely on Medicaid. The most concrete evidence of the Court’s involvement is an order issued by Chief Judge John J. McConnell, Jr. March 27 which seals “until further notice” seven draft documents having to do with the state’s Medicaid plan.

DiPalma, learning of the titles of the documents in the court order, said in a telephone interview that the news they were sealed surprised him, because the documents were shared among leaders in the developmental disabilities community for comment a week ago in lieu of a public hearing, given the unprecedented emergency of the COVID-19 pandemic and social distancing rules imposed by Governor Gina Raimondo.

The crisis threatens the viability of the private developmental disabilities system, which is the backbone of the state’s efforts to comply with a 2014 civil rights consent decree mandating integration of adults facing intellectual challenges in their communities. McConnell oversees implementation of the consent decree, which runs through 2024.

Daytime activities linked to compliance with the consent decree have shut down, and provider agencies have been forced to lay off staff because the employers can’t bill the state for the services. A spokeswoman for CPNRI, the trade association, could not immediately say how many layoffs have occurred.

Some agencies are estimating losses for the month of March up to $198,000, said the CPNRI spokeswoman, executive director Tina Spears. She said the losses are “destabilizing our ability to provide other critical services” throughout the crisis, with costs that exceed established funding levels.

Preliminary estimates from CPNRI members indicate their costs will exceed their annual budgets along a range from 2 percent to 20 percent, Spears said, although those figures will become clearer as each agency continues to track expenses.

On March 22, the Centers for Medicaid and Medicare Services loosened its rules, inviting states to apply for relief through a variety of variances, including rate increases and up-front emergency or “retainer payments.” “Retainer payments” is a federal Medicaid term.

Spears, the CPNRI director, submitted the request for the $4.55 wage increase March 25 to the state’s acting Medicaid Director, Benjamin Shaffer. Spears represents about two thirds of the three dozen agencies operating in Rhode Island, but she said any wage increase should apply to all developmental disability service providers, and to families who hire their own staff for loved ones. Spears said Pennsylvania’s retainer payments have built-in rate increases up to 40 percent, while Connecticut hiked rates for group homes and other residential settings by 25 percent in its retainer payments. Day programs in Connecticut will get another 5 percent in the retainer payments.

Layoffs of day program staff in Rhode Island will put a big strain on the unemployment insurance of the agencies, most of which are self-insured, Spears said. While income from day programs has stopped, agencies still have the same fixed costs, as well as new ones, as their focus shifts to respond to the threat of infection in group homes and other residential settings.

Existing fixed costs include rent, leases on vehicles used in programs, insurance, utilities, professional services, software, leases on office equipment, telephone and communications costs, and other expenses, she said. Unanticipated costs include:

• Employees taking time off under the federal Family Medical Leave Act, because of a need for childcare and other family situations, requiring agencies to maintain health insurance for them.

• Steeper costs for providing direct care to clients, because higher-paid staffers are needed to augment the efforts of regular front-line workers. These other employees include supervisors, managers, clinicians and nurses. • Added costs for aggressive cleaning protocols, involving more time from outside specialty contractors and more work done by agency employees. Providers also have scoured the market for hand sanitizer, personal protective equipment, and other supplies.

At the state’s Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), the outgoing Director of Developmental Disabilities, Kerri Zanchi, says she will stay on “for a little while longer” to support the coordination between operations and funding during the healthcare crisis. Kevin Savage, the new acting director, and Heather Mincey, who is in charge of division social workers, round out the division’s leadership.

RI Plans For Emergency Funding To Shore Up DD Providers After Community Calls For Help

By Gina Macris

Rhode Island Governor Gina Raimondo announced March 26 that the state will soon release a total of $15.4 million in state and federal Medicaid “retainer payments” to shore up private service providers facing unprecedented challenges in the coronavirus pandemic.

The announcement came hours after representatives of private service providers and a prominent advocacy group expressed anxiety about a heightened vulnerability of people with developmental disabilities to the disease and called on the governor to do more.

The retainer payments “are seen as essential to supporting our critical DD (developmental disability) partners, many of which had to cease services due to COVID 19,” a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said late in the afternoon.

BHDDH and the state’s Medicaid system, managed by the Executive Office of Health and Human Services, are working to make the funds available “as soon as possible,” the spokesman said. He said the retainer payments have been approved for a three-month period, with the first checks going out as early as next week.

Several hours before the announcement, spokesmen for the Community Provider Network of Rhode Island (CPNRI) and the Developmental Disabilities Council of Rhode Island issued a statement detailing the vulnerabilities of individuals with developmental disabilities and those who live and work with them.

“We need to act now to address the needs of our community, which we have identified repeatedly to the administration,” said Michael Andrade, President of CPNRI, a trade association of 24 private agencies licensed by the state to provide support and care for adults with developmental disabilities – including those in group homes.

Andrade said state testing priorities and emergency planning must include group homes and people in shared living, an arrangement in which adults with developmental disabilities live in private apartments or single-family houses with a host family.

Kevin Nerney, executive director of the Developmental Disabilities Council, agreed that testing, protective equipment, and other emergency measures “must be a priority” for vulnerable individuals and their caregivers.

“There is an obvious concern about spreading the virus by those receiving services and those who provide those services,” Nerney said.

“As people become sick, they may still require in-person services. We want to make sure it is possible to continue services when necessary, even for the sick,” Nerney said.

Those who care for people with developmental challenges must be considered “the essential health care workers that they are” and must be compensated appropriately during the crisis, Nerney said.

The BHDDH spokesman said later in the day that the administration has taken steps toward a declaration that those who work with persons with disabilities are “essential health care workers” necessary in the state’s emergency response to the virus.

The spokesman, Randal Edgar, said state human services officials have “escalated” the needs of developmental disability service providers for Personal Protective Equipment (PPE) to the Rhode Island Emergency Management Agency and are trying to expand the availability of interpreter services. Some direct care workers who provided daytime services have been re-assigned to residential programs, Edgar said.

About 4,000 Rhode Islanders with developmental disabilities receive services funded by BHDDH, including 1180 who live in group homes. Many adults with developmental disabilities face challenges in practicing good hygiene and social distancing and have underlying medical conditions that put their immune systems at greater risk than the average population.

Edgar said the governor, BHDDH and EOHHS “are committed to meeting the needs of the state’s most vulnerable residents. This pandemic is challenging our State and all Rhode Islanders, and we recognize that there is significant impact on individuals with disabilities, their families, and the direct care workforce who support them. We are working tirelessly to ensure that resources are in place to support residents with developmental disabilities as well as the providers who care for this population.”

In a televised afternoon briefing March 26, Raimondo said her goal is to develop the capacity to test 1,000 people a day in a week’s time, a pre-requisite in defining the spread of the coronavirus and informing the state’s efforts to contain it.

Rhode Island has about 5,000 workers in the developmental disabilities field, not counting family members who also provide care and support, according to CPNRI and Nerney.

Tina Spears, executive director of CPNRI, said in an email that providers are “extremely nervous” about infection among those in their care and about their ability and readiness to respond to such a scenario.

“We are deeply troubled by the lack of emergency planning,” she said in the email, sent early in the afternoon.

Providers are taking emergency measures independent of state government, but they need more support and resources, she said.

“We are equally concerned for family caregivers at home,” said. “If and when they become ill, we must be able to step in and support the family,” Spears said.

Most of the 4000 authorized to receive services from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) live at home and receive daytime services from a private agency.

Of the total BHDDH caseload, about 700 individuals living at home also have service programs directed independently by their families. These families need flexibility to hire additional staff – including other family members – in an emergency, Nerney said in a separate letter to Raimondo that was signed by the leaders of several organizations serving the developmental disabilities population.

Spears, meanwhile, said that with daytime programs closed, agencies are unable to provide services to participants living in family homes on a broad scale because of a lack of authorization from the state.

She said providers were given the authorization to provide “tele-health” services, but “this is not helpful in most situations for the people we support.”

Some providers have reluctantly laid off staff, because they cannot afford to keep them, Spears said. The state’s fee-for-service system reimburses private agencies only after services are provided, usually in ratios of one worker to several clients. One-to-one services are more costly, and no adjustments have been made to authorize them on a broad scale, Spears said.

“We would prefer to be overstaffed at this point and be able to provide more support in the community. This has been our consistent goal,” Spears said.

After the BHDDH announcement, Spears said in a telephone interview that she was “heartened” by the news of the retainer payments but is awaiting additional detail. Spears said she hopes the payments cover pay increases for “our vital workers.”

Spears, Andrade, Nerney and others had asked Raimondo for emergency funding to help caregivers and providers weather the crisis. The privately-run system of services was already in precarious financial health before the crisis, according to consultants for BHDDH.

Nerney has urged Raimondo to follow the lead of the state of Connecticut, which continues to pay private service providers, raising rates.

As part of Connecticut’s emergency preparedness response, the state’s Department of Developmental Services has increased allocations to group home operators by 25 percent and has increased payments to providers of daytime programs by 5 percent, with the proviso that providers will not lay off workers.

The Connecticut advisory to developmental disability service providers was attached to a letter from Nerney to Raimondo dated March 23. It raised many of the same concerns as the CPNRI statement and and aired specific questions from families seeking guidance about details of the care of family members at home who have developmental disabilities.

In addition to Nerney, the letter was signed by Amy Grattan, Executive Director of the Sherlock Center on Disabilities; Deanne Gagne, Coordinator of the Cross Disability Coalition; Sam Salganik, Executive Director of the Rhode Island Parent Information Network; Deb Kney, Executive Director of Advocates in Action; Joanna Scocchi, Executive Director of the ARC Rhode Island Family Advocacy; and Ken Renaud, Coordinator of RI FORCE, a family advocacy group.

Judge Asks Olmstead Monitor To Confer With RI DD Community About Impact Of Coronavirus

By Gina Macris

Chief Judge John J. McConnell, Jr. of the U.S. District Court in Rhode Island has asked the independent monitor for a 2014 consent decree to advise him on ways the Court can respond to the needs of adults with developmental disabilities and their families and lessen the burden on the developmental disability service system in light of the COVID-19 public health crisis.

Recently, McConnell ordered the monitor, A. Anthony Antosh, to work with state officials, service providers, and the community to come up with a plan by August for implementing the civil rights consent decree, which requires an emphasis on jobs and integrated non-work activities in the community in accordance with the Olmstead decision of the U.S. Supreme Court.

But the latest order, issued March 18, asks Antosh to speak with the same groups of people, in part to “lessen the administrative burden on providers and the State.”

In its entirety, the order says: “Recognizing the difficulties posed to the families, providers, and the State by the public health crisis from the COVID-19, the Court requests that the Court Monitor engage in conversations with the State, providers, family advocates, and the DOJ to make recommendations to the Court on orders that could (1) lessen the administrative burden on providers and the State; (2) assist class members and their families in maneuvering the system and ensuring essential services; (3) any other recommendations the Court Monitor deems appropriate.”

In other news:

• The Department of Behavioral Healthcare, Developmental Disabilities and Hospitals shared a link for those who wish to sign up to get departmental bulletins via email. It is here: https://visitor.r20.constantcontact.com/manage/optin?v=001eqFath_w1XkYArH2x0GW8bc7GVDqsDyWPJIEAFzZva8gz_TPfL5twTJBMX31wroDseZVoKARm5p2-EIVxblCOz0_xHCYHhe-czFB5H3Zw4I%3D

• The Governor’s Commission on Disabilities has prepared a resource guide on the coronavirus, COVID-19. It can be found by clicking here .

RI: Private DD Agencies Show “Concerning Level Of Financial Vulnerability,” Consultants Say

By Gina Macris

Many of the private agencies serving adults with developmental disabilities in Rhode Island teeter so close to the fiscal edge that they need cash advances from the state to keep their doors open from one year to the next.

“It is evident that the advance payments made by BHDDH constitute a crucial lifeline for many of the agencies,” said consultants to the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

A review of nearly three quarters of the state’s payments to private developmental disability service agencies showed that all but two among a representative sample of 16 large, mid-sized, and small organizations fall below a nationwide standard for financial health, the consultants said.

The consultants, working under the auspices of the New England States Consortium Systems Organization (NESCSO), were hired to expand the analytical capacity of BHDDH in reviewing the rates and payment structure for the privately-run developmental disability system.

While it is outside NESCSO’s scope to make specific recommendations, the consultants nevertheless concluded that there is a “concerning level of financial vulnerability for a substantial portion” of the private system, the backbone of state-funded developmental disability services.

The financial review represented some of the interim findings in an 18-month, $1.3 million contract between NESCSO and BHDDH that concludes at the end of June.

The report appears to be incorporated in an addendum to the BHDDH budget request for an additional $4 million in federal-state Medicaid funding beginning July 1 to help provide incentives for advancement to front-line workers by raising the salaries of supervisors, support coordinators, job developers and professionals an average of 8.2 percent. Direct care workers also would receive an additional 10 cents an hour.

The governor adopted the language of the BHDDH proposal “to provide an investment in the overall human resource infrastructure” of the provider network for adults with developmental disabilities. She nevertheless cut the $4 million request to $2.2 million. That recommendation includes $1 million in state funding and the remainder in matching federal Medicaid funds.

The raises are offset by $2.2 million in savings from caseload figures that the governor’s office says showed slower growth than BHDDH projected. The budget office projected a 1.5 percent caseload growth for the next fiscal year, or one percentage point less than BHDDH estimated.

The NESCSO fiscal report, meanwhile, said 71 percent of all BHDDH payments for privately-run services to adults with developmental disabilities went to 16 of the 39 agencies licensed to operate in the state. For the analysis, the agencies offered a total of 27 audited financial statements, some for 2018 alone and others for 2017 and 2018.

Of the 27 audit reports from those two fiscal years, 15 showed operating losses and 6 showed surpluses between 1 and 2 percent, according to NESCSO. Only 6 reports showed healthy income margins of 3 percent or more, prompting the consultants to comment on the “concerning level of vulnerability” for the system as a whole. The consultants noted that the audits covered all operations for the respective agencies and were not structured to allow a more detailed analysis of only those activities supported by BHDDH funding.

To the extent that agencies use other sources of income to subsidize developmental disability services, the providers themselves may feel that the analysis “does not fully represent the fiscal challenges of serving the I/DD (intellectual and developmental disability) population,” the consultants wrote.

The NESCO report analyzed two other indicators of financial health:

• liquidity, or the ease with which assets can be converted to cash

• solvency, or the ratio of assets to liabilities.

All but two agencies fell below the liquidity level considered healthy by the NonProfit Finance Fund, according to the consultants.

NESCSO used two measures to calculate liquidity:

• the number of months of cash on hand, with two agencies meeting the standard of three months or more

• working capital, which calculated as current assets minus current liabilities and then further refined to determine how many months of operational costs the working capital could cover. Three agencies met this standard.

The NESCSO consultants added that advance payments from the state, which show up on audits as liabilities, in effect function as sources of operating cash and working capital for the agencies. The report did not say how many agencies have received such payments, nor did BHDDH respond to a request for clarification.

The consultants’ report included a financial note they said was found in many audited statements. It reads:

“This amount represents approximately 45 days of funding for operating the residential and day programs. This amount is due to the State of Rhode Island if the company ceases operation of a residential or day program within the scope of the original advance funding agreement or if it is no longer licensed or certified to provide serves (services) to individuals with developmental disabilities. During 2017, the State of Rhode Island requested payment of these funds prior to the end of the fiscal year at which time additional funds were provided to the Company/Agency.”

Another way the state subsidizes the agencies’ operations is leasing properties to them for nominal amounts, the consultants said.

Although 17 of 27 agency audit reports showed assets that were two times greater than liabilities, the organizations are more vulnerable than those figures might indicate on their face, the consultants said, because a “critical portion” of the assets are property and equipment “intertwined in daily operations,” like group homes.

As an example, the NESCSO’s consultants cited the case of one agency, Bridges, Inc, The agency had assets that exceeded liabilities but also faced a second consecutive year of losses from operations in 2017. In that case, Bridges closed its doors in 20017 but transferred its entire business to Looking Upwards, another agency.

“That approach likely preserved capacity within the system but highlights the risk of loss of overall provider capacity,” the consultants wrote.

DOJ, RI Ask Judge To Settle Major Dispute Over Compliance With ADA Integration Mandate

By Gina Macris

A dispute has arisen between Rhode Island and the federal government over a key phrase in two court-approved agreements which require the state to provide people with developmental disabilities full access to jobs and community activities.

Both sides have asked U.S. District Court Chief Judge John J. McConnell, Jr. to rule soon on what it means for the state to achieve “substantial compliance” with two companion civil rights decrees signed in 2013 and 2014.

The details of the dispute focus on the first of the two agreements, which is scheduled to expire in six months – July 1,2020 – and is known as the Interim Settlement Agreement (ISA).

This agreement applies only to students and former students of the Birch Academy, a developmental disabilities program at Mount Pleasant High School in Providence which once served as a feeder for a now-defunct sheltered workshop in North Providence called Training Through Placement (TTP).

The ISA sought to resolve a finding by the U.S. Department of Justice (DOJ) that large-scale segregation of developmentally disabled youth and adults at Birch and TTP violated the Integration Mandate of the Americans with Disabilities Act (ADA). The matter became the nation’s first “sheltered workshop” settlement.

How McConnell decides to define “substantial compliance” in the context of the ISA will also impact the broader 2014 consent decree, intended to protect all Rhode Island youth and adults with developmental disabilities from a lifetime of day care or low-paying piecework.

In the ISA, both the state and the city of Providence were defendants until late September, when McConnell ended federal oversight of the city. He received glowing reports of a transformed Birch Academy, which today sends students to productive internships that broaden their experiences and sometimes result in regular jobs.

But the state still has detailed obligations under provisions of the 2013 agreement to help former Birch students and former TTP workers find jobs.

On Dec. 23, the DOJ notified McConnell that “it disputes that the state will be in substantial compliance with the Agreement” by July 1 “without a course-correcting change in the State’s approach to compliance.”

The DOJ asked the judge to direct the interim court monitor, A. Anthony Antosh, to “begin working with the State immediately to develop and implement a plan for completing the (2013) Agreement’s highly achievable remaining outcomes and schedule a status conference with the Parties in January 2020 to address next steps.”

A week later, on Dec. 30, lawyers for the state challenged the DOJ, saying the federal government has not documented its specific objections or offered a “clear working definition” of substantial compliance for either the 2013 or 2014 agreements.

The state is already working with Antosh on a definition of substantial compliance, its lawyers said. The lawyers, Marc DeSisto and Kathleen A. Hilton, asked for a formal hearing in January on the issue of substantial compliance, rather than the informal status conference requested by the DOJ.

DeSisto and Hilton said they would be prepared to submit evidence and sworn testimony that the state is meeting its responsibilities under the terms of the ISA.

The agreement itself says only that “substantial compliance is achieved when the state and the city have implemented all of the provisions of the Interim Settlement Agreement for all individuals in the target populations.”

DeSisto and Hilton wrote that “in this context, ‘implement’ means that there are mechanisms and/or policies put into effect of sufficient means to carry out its (the state’s) requirements of the particular benchmark at issue.”

For example, there remain 15 individuals protected by the ISA who have employment goals but have never been employed in the community, DeSisto and Hilton said. The reasons include poor health or challenging behavior, family resistance, legal or forensic issues with the individuals, or extended absences from service programs.

(The state’s memorandum did not specify the total number of persons counted in the ISA, but past reports from the state and the independent court monitor put the total at a maximum of about 125, with fluctuations over time.)

The state could have requested “variances” to exempt these 15 individuals from employment and remove them from the ISA caseload, the lawyers said, but officials have no interest in pursuing this route.

Instead, the state wants to meet the individuals’ needs, “where they are at this time, and (work) on an individualized basis, towards the ultimate goal of employment,” DeSisto and Hilton wrote. They said the state has ”competence” to meet the employment goals, whether or not those goals are actually reached, suggesting that this “competence” demonstrates substantial compliance.

DeSisto and Hilton asserted that the state has achieved full compliance in 52 provisions of the ISA and substantial compliance in the remaining three provisions. But their memorandum to the judge does not describe those respective provisions.

The memo also referred to findings of the previous court monitor, Charles Moseley, who in August assessed the city’s compliance with the agreement but left the state’s compliance with numerous provisions “to be determined.”

DeSisto and Hilton indicated that Moseley followed up on his findings regarding state compliance in an Oct. 1 email with a new report attached. The lawyers included what appears to be an index of Moseley’s findings in three categories; substantial compliance, noncompliance, and “to be determined”, but they did not include the Oct. 1 report itself. Nor does that report appear separately in the court file.

A. Kathryn Power To Lead RI BHDDH

A. Kathryn Power

Rhode Island Governor Gina Raimondo and her Health and Human Services Secretary have tapped A. Kathryn Power, a veteran administrator of mental and behavioral health initiatives at both the state and federal level, to direct the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) – for the second time.

Power led the agency formerly known as the Department of Mental Health, Retardation and Hospitals during the administrations of former governors Bruce Sundlun and Lincoln Almond, from 1993 to 2003.

Known as a staunch consumer and family advocate wherever she has gone, Power left state government to become director of the federal Center for Mental Health Services, a part of the Substance Abuse and Mental Health Services Administration (SAMHSA).

In the last 15 years, she also has served as SAMHSA’s Region One director, providing authoritative advice and assistance on behavioral health policies and innovations to inform the financing and delivery of prevention, treatment, and recovery services.

Raimondo said she was “thrilled that (Power) has agreed to once again assume leadership of BHDDH and I look forward to continuing to work together as we improve outcomes for all Rhode Islanders who live with behavioral health challenges and developmental disabilities.”

“Rhode Island is fortunate to have someone of Kathryn’s stature – possessing such a high level of expertise in behavioral healthcare and developmental disabilities – stepping into this vital position,” said Womazetta Jones, Secretary of the Executive Office of Health and Human Services.

Power said in a statement, “I’m thankful to Governor Raimondo and Secretary Jones for the opportunity to contribute to our state’s evolving system of care for individuals facing behavioral health conditions and developmental disabilities.”

“Our state has made significant progress over the last few decades, but we have more work to do to ensure that all Rhode Islanders have access to the care and support they need on their paths toward recovery and community integration.”

As BHDDH director, Power will oversee a troubled hospital system, developmental disability services in the midst of a ten-year overhaul under federal oversight, and behavioral healthcare issues that include the state’s response to the opioid crisis that permeates communities nationwide.

Power succeeds Rebecca Boss, who is stepping down Dec. 31.

Except for her fifteen years in the federal government, Power has worked in the mental health field in Rhode Island for most of her life.

In addition to having served once as director of BHDDH, she is a former director of the Rhode Island Office of Substance Abuse, the Governor’s Drug Program, and the Rhode Island Anti-Drug Coalition. From l985 to l990, Power served as Executive Director of the Rhode Island Council of Community Mental Health Centers.

She has served as President of the National Association of State Mental Health Program Directors and has received many awards for her work in mental health, substance abuse and civic leadership, as well as recognition for her advocacy on behalf of people with disabilities.

Power received her bachelor’s degree in education from St. Joseph’s College in Maryland, and her master’s degree in education and counseling from Western Maryland College. She is a graduate of the Toll Fellowship program in leadership training of the Council of State.Governments and another program in senior executive leadership at Harvard University’s Kennedy School of Government. Power is also a retired Captain in the U.S. Navy Reserve.