$10 Million CARES Act Money Set As Emergency Aid For RI DD Providers

By Gina Macris

(This article has been updated.)

The state of Rhode Island has agreed to set aside $10 million from the federally-funded CARES Act as a short-term safety net for private providers of developmental disability services, who are in “financial distress” as a result of the coronavirus pandemic.

The state negotiated the sum with the providers, working under an order from Chief Judge John J. McConnell, Jr. of the U.S. District Court to ensure the private agencies don’t close their doors before the end of the fiscal year June 30.

McConnell formally approved the plan in an order Dec. 23, with an accompanying memorandum recognizing the “extraordinary efforts of the State", including Governor Gina Raimondo’s office and several departments of the executive branch, as well as State Sen. Louis DiPalma, D-Middletown, who participated in the negotiations.

“It is heartening to see the large state apparatus come together to assist those most vulnerable in our community, and to help fulfill the promises of the Consent Decree,” McConnell said.

The order also affirmed the state’s commitment to “work with providers to develop a three-year plan to improve outcomes for individuals with I/DD, and to include an investment in the I/DD provider network in the Governor’s FY22 state budget plan as part of this work.”

The continuity of the private provider system is essential to the state’s ability to comply with the consent decree, 2014 civil rights agreement requiring the integration of adults with developmental disabilities in their communities by 2024.

The agreement between the state and the providers establishes an “I/DD (Intellectual and Developmental Disability) Provider Support Program” of grants to cover pandemic-related losses of some three dozen private agencies, which have been forced to drastically reduce daytime services at the same time they have been saddled with sharply higher costs for safety measures necessary to protect residents of group homes.

The application process for funds and the distribution of the grants will run on an accelerated timeline, with initial information flowing to providers Dec. 21 and documented grant requests due back Dec. 28, according to the filing with the U.S. District Court. Funding is to be available Jan. 8. Agencies must document how they are using the funds by Jan. 30.

The program aims to expand daytime services for adults with developmental disabilities, who in large part received center-based care until the pandemic hit and forced providers to close these facilities. Some daytime services, including employment supports, have continued, but the grants are intended to enable providers to go into clients homes as well as build on existing individualized programs.

“Home-based service alternatives require a large and flexible workforce,” according to a summary of the grant program submitted to McConnell. Providers have had difficulty finding workers, having to pay up to $30 an hour to staff some group homes.

The program is intended to enable group home staff to better protect and care for residents, some of whom have pre-existing medical conditions and are particularly susceptible to being hospitalized with the virus when they otherwise might receive care in a less restrictive setting. Ensuring hospital beds are reserved for only the sickest patients is a public health priority, the summary said.

Agencies receiving grants must agree to comply with all COVID-related public health recommendations and several other conditions that further the goals of preserving and increasing services and supporting frontline workers who provide direct care.

The specific requirements detail a commitment to essential services, outreach to those in a variety of living situations, and making “reasonable attempts” not to lay off more than 50 percent of employees.

The summary said that it will require “broad cooperation” to overcome the problems COVID-19 has caused for the developmental disability system, which will continue to face challenges as the situation evolves.

“This partnership represents an opportunity to extend that cooperation to build strong resilience for the current crisis and improve health outcomes for all Rhode Islanders in need of I/DD services and supports. The State of Rhode Island looks forward to working with critically important I/DD providers, consumers, and other stakeholders to establish and carry out this partnership,” the summary concluded.

The court-ordered negotiations grew out of a Nov. 24 hearing before Judge McConnell. The testimony laid out the ways the COVID-19 pandemic has undermined providers’ ability to serve their clients and threatened the entirety of their operations. (See related article.)

The state’s lawyers said the negotiations were a “collaborative effort” facilitated by the independent court monitor in the case, A. Anthony Antosh.

The state participants included representatives of the governor’s office, the Department of Administration, the Office of Management and Budget, the Executive Office of Health and Human Services, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, and members of the General Assembly.

The providers were represented by the Community Provider Network of Rhode Island, a non-profit trade association with about two dozen members, about two thirds of the three dozen agencies providing services to adults with developmental disabilities in Rhode Island. Other providers also participated, according to the state’s private lawyers, Marc DeSisto and Kathleen Hilton.

Lawyers for the U.S. Department of Justice engaged in the talks but took “no position” on the agreement, according to a separate statement they submitted to the court.

Read the documents filed by the state here.

RI Faces High Cost For Fixing DD ADA Violations

By Gina Macris

After funding services for adults with developmental disabilities below their actual costs for nearly a decade, the state of Rhode Island is about to experience sticker shock.

The system of private agencies that provides most services for adults with developmental disabilities is on the verge of collapse, by all accounts, and a federal judge has given the state until Dec. 18 – five days from now – to come up with the money to keep it afloat until the next fiscal year.

The state also is under court order to devise and execute a plan for strengthening the system during the next three years so it can comply with a federal civil rights agreement that requires Rhode Island to integrate adults with developmental disabilities into community life by 2024. With the judge ready to use his power to enforce the consent decree, those costs could increase spending on developmental disability services by a third or more in the next several years.

Last month, a federal court monitor addressed the short-term fiscal gap by suggesting that the state release $2 million a month in unspent funds already allocated to developmental disabilities simply to keep the agencies’ doors open over the next six months. The COVID-19 pandemic has forced agencies to shrink services and drastically reduce billing.

Judge John J. McConnell, Jr.

In a recent hearing before Chief Judge John J. McConnell, Jr. of the U.S. District Court, a spokeswoman for service providers took a different approach, saying the state needs to immediately raise direct care pay, now an average of $13.08 an hour, to enable the private agencies to recruit and retain employees during the pandemic.

Roughly two thirds of these essential workers are women and more than half are people of color, according to the trade association spokeswoman.

A recently-completed report from the association, the Community Provider Network of Rhode Island (CPNRI), fleshes out projected costs:

• An hourly increase of $2.32, to $15.50, would require nearly $44.1 million a year, or 16.4 percent more than the state has currently budgeted.

• A hike to $17.50 would mean an additional $79.8 million, or a 29.7 percent increase in the annual budget

• A $20 hourly rate would add $124.5 million to the budget. That would amount to a 46.4 percent increase in spending.

The report, “A System in Crisis,” said employers need to be able to offer $17.50 immediately to get job applicants in the door during the pandemic. In Fiscal 2022, which begins July 1, the rate should be increased again to $20 an hour.

Monitor’s Calculations More Limited In Scope

The monitor, meanwhile, agrees with the need for pay hikes, although he would allow the state more leeway on the timeline. In his latest report, filed with Judge McConnell Nov. 30, the monitor, A. Anthony Antosh, said the state should raise hourly wages to $17.50 “as quickly as possible” and to $20 by Fiscal 2024, which begins July 1, 2023.

A. Anthony Antosh

Antosh’s fiscal analysis focuses primarily on the changes needed in the final three years of the consent decree. He said there is consensus among various stakeholders with whom he has consulted that staffing and fiscal issues are the two main concerns in implementing the 2014 civil rights agreement.

“The state budget deficit resulting from the COVID-19 pandemic significantly complicates any fiscal analysis and any decision-making about budget planning,” he said.

Antosh makes no specific dollar recommendations but says that figures should be negotiated with provider agencies in a three-year budget plan to be completed in time to begin in the next fiscal cycle on July 1, 2021. He emphasized that the agencies provide 83 percent of the services necessary to support those protected by the consent decree.

Antosh said an ongoing review of the entire fiscal and reimbursement system, itemized in a 16-point court order issued by McConnell July 30, should be complete by June 30, 2021.

He also recommended that steps be taken now to make sure that the specific costs of a strengthened developmental disability system are acknowledged when future state budgets are being developed.

For example, the data on caseloads provided monthly by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to the General Assembly should be included in the Caseload Estimating Conference used to determine human service needs in the overall state budget. That is also one of the final recommendations of the “Project Sustainability Commission,” a a special legislative commission headed by Staite Sen. Louis DiPalma, D-Middletown.

While not acknowledging the actual costs, which pay for entitlement services under provisions of the Americans With Disabilities Act, the General Assembly has often criticized the state’s developmental disabilities system for running over budget.

The governor typically relies on the November caseload and revenue estimating conferences to draw up the budget that is submitted to the General Assembly in January. The legislature, in turn, relies on more finely tuned caseload and revenue estimates in May to finalize a spending plan for the next fiscal year.

Monitor’s Numbers “Illustrate” Solutions

Antosh’s report includes five sets of fiscal projections that can best be described as starting points for discussion rather than cost estimates for system-wide change. For reasons related to the language of the consent decree, the monitor’s numbers cover individuals who were identified in confidential documents between 2013 and 2016 and today make up about 67 percent of the entire population with developmental disabilities.

Antosh said the tables of projections and descriptions of the associated costs “illustrate” various options in reconfiguring daytime services for the 67 percent.

The most comprehensive “illustration “ of the cost of re-inventing daytime employment and leisure activities for the specific portion of the population protected by the consent decree would add $35.6 million to the budget in Fiscal Year 2022, which begins next July 1, Antosh said. An additional $14.9 million would be needed in Fiscal 2023 and $15.8 million extra would be added in Fiscal Year 2024.

In addition to protecting a particular class of people, the consent decree is supposed to lead to a system-wide transformation. And state officials have made clear that they intend to include all people eligible for developmental disability services in a reformed system, not just those identified at the time of the consent decree.

The three increases projected by Antosh add up to about $66.3 million a year in three years’ time. Antosh said the increases need not all come from Medicaid funding but draw on a variety of other public and private sources.

The current annual approved budget for the private service providers is about $268.7 million in federal-state Medicaid funds, although the providers’ ability to bill for reimbursement has shrunk since the start of the pandemic.

Actual spending on privately-run services was about $240.8 million in the fiscal year that ended June 30, 2019, according to state budget figures. Antosh said the increases need not all come from Medicaid funding but draw on a variety of other public and private sources.

CPNRI, meanwhile, offered estimates for system-wide reform that would not only increase wages but provide for more labor-intensive supports in the community in keeping with the requirements of the consent decree. The organization’s report said that at a direct care rate of $17.50 an hour, the more labor-intensive option would cost between $112.9 and $158.9 million, depending on the number of hours provided and other variables, including the level of independence of each individual as perceived by the state’s assessment tool.

CPNRI’s report incorporated work completed earlier this year by BHDDH consultants, as well as earlier projections done for the state by different consultants.

COVID-19 Exacerbates Inequities

The pandemic has highlighted the inadequacy of the poverty-level pay of direct care workers in the private sector. The average wage of $13.18 an hour falls below many entry-level jobs in retail, delivery, warehouse, restaurant and janitorial fields, according to the recent report from CPNRI.

That rate is also nearly $5 less than the $18 minimum hourly rate the state pays its own employees to do the same work, running a small parallel system of group homes for about 125 adults with developmental disabilities.

The years-long difficulties faced by providers in recruiting staff have reached critical proportions during the COVID-19 pandemic, leaving many individuals without services and crippling the agencies’ ability to generate income.

The crisis has been nine years in the making.

In 2011, the General Assembly devalued the private provider system when it adopted a new reimbursement model and budget cuts that were justified with an executive branch memo that simply said providers could deliver the same services with less money.

The $26- million budget cut resulted in layoffs and slashed wages. Entry-level positions for caregivers, once the starting point of a career ladder for caregivers who did not necessarily have college degrees, became minimum-wage, dead-end jobs.

At the time, the Department of Behavioral Healthcare, Developmental Disabilities (BHDDH) ignored the recommendation of an outside consultant who said direct care workers should receive a minimum of $15 an hour within a year’s time.

The state pleaded poverty in the aftermath of the financial crash of 2008 and 2009, but by 2011, most other states were either holding steady on previous cuts or beginning to reverse reductions in human service spending, including those for people with developmental disabilities.

The austerity move accompanied a new reimbursement system billed as “Project Sustainability,” intended to equitably distribute available funds to eligible adults with developmental disabilities. The reimbursement model incentivized congregate care in sheltered workshops and day care centers – the least costly form of supervision. Subsequently, the DOJ found that an over-reliance on congregate care violated the Integration Mandate of the Americans With Disabilities Act. That finding led to the consent decree.

In a recent report, CPNRI said that COVID -19 has thrust a system developed and funded for congregate care into one that must deliver personalized services to mitigate infection among a vulnerable population.

Long-term effects of neglect on the system prevent providers from being “agile and responsive to meet the demand and needs of the community,” said the report. For example, the reimbursement model assumes that 40 percent of services will be delivered in center-based care, which is prohibited by public health concerns.

Read the court monitor’s report here.

Read the CPNRI report, “System in Crisis” here.

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.

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

Families Struggle While Federal Judge Awaits Progress Report On RI DD System Reform

By Gina Macris

Tonya LeCour, a teacher who is scheduled to return to work Sept. 1, also serves as the sole caregiver for a family member with developmental disabilities.

What will happen to her job if she can’t find daytime supports for the person who depends on her?

LeCour was among several participants who sounded similar concerns at a virtual forum hosted online by the Rhode Island Division of Developmental Disabilities Aug. 17, with technical assistance from the Rhode Island Parent Information Network.

The comments reprised the July 30 testimony of Carol Dorros, M.D., who told Chief Judge John J. McConnell, Jr. of the U.S. District Court of her experience caring for her adult son with developmental disabilities fulltime, and her inability to practice medicine, since the COVID-19 pandemic hit Rhode Island in March.

Those familiar with the developmental disabilities community say they believe there are hundreds of people facing wrenching stituations similar to those described by Dorros and LeCour.

Rhode Island is now days away from a court-imposed deadline of August 30 – the first of six such target dates – to outline its strategies for shoring up the developmental disabilities system in the short term and ensuring it complies in the long run with a 2014 consent decree seeking to enforce the Americans With Disabilities Act.

The court’s review comes against the background of strained state finances.

The state budget office has sent a memo to all department heads, including A. Kathryn Power, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to submit budget proposals for the next fiscal year that cut overall spending by 15 percent.

In a statement, a spokesman said “BHDDH, like all state departments, is working with its financial team and program managers to assess all options in meeting the 15 percent reduction in FY 22 spending, per the OMB (Office of Management and Budget) guidance.”

At the same time, the state Division of Developmental Disabilities has convened several “workgroups” to tackle the issues, and, according to McConnell’s order, is expected to submit a report Aug. 30 that will “describe the process or strategy” for addressing the problems, the timeline for resolving them, and the particular agency or agencies responsible for each item. ( Update: The report was submitted to an independent court monitor, A. Anthony Antosh, who said it was under his review the week of Sept. 6 and would be submitted to the court when the review is finished.)

The developmental disabilities issues are complex. They include include reimbursement rates keyed to staffing ratios that were designed for congregate care and do not translate well to community activities.

For example, the reimbursement structure may require a support person to take along five people with the same budget authorization on a community activity, whether or not their needs or interests fit into the purpose of the outing. Conversely, staffers may have to jump through hoops to come up with an activity that will appeal to all members of the group.

People receiving services may opt for one-on-one assistance, but that decreases the number of service hours during the week. A typical funding authorization for one person translates into about six hours a week of one-on-one help, according to calculations of the Community Provider Network of Rhode Island, a trade association.

In re-shaping the system, the state has at its disposal a recently-completed 134-page report from the New England States Consortium Systems Organization (NESCSO), which was hired more than 18 months ago at a cost of $1.1 million to conduct a comprehensive study that grew out of increasing demand for a review of rates paid to private providers of developmental disability services.

At the request of BHDDH, NESCSO’s consultants did not make specific recommendations but conducted an exhaustive assessment of the current y situation and presented options for change that the state might consider.

NESCSO described the financial position of the three dozen agencies providing services as “tenuous,” re-affirming interim findings made before the pandemic hit.

The report suggested that an increase in long-term employment among adults with developmental disabilities could save the state millions of dollars in the long run that would otherwise be spent on daytime supports.

However, increasing employment, a goal of the consent decree, would require an up-front investment in employment-related supports and retaining the staff necessary to carry them out.

NESCSO estimates that a 33 percent increase in wages, now an average of $13.18 for front line workers, will result in a 50 percent reduction in turnover, which ranges up to 58 percent in some agencies.

BHDDH has not made any public comment on the report.

In the meantime, service providers seem to be keeping a lid on the pandemic in group homes but are struggling to provide scaled-up daytime supports that meet safety guidelines under the current funding structure.

As of Aug. 25, a total of 164 group home residents had tested positive since the start of the COVID-19 pandemic, three more than reported July 21. Of that total, 48 have been hospitalized and 10 have died, according to a BHDDH spokesman. The numbers indicate that the five people who were hospitalized in late July have all been discharged. The most recent death was reported in June.

During the Aug. 17 public hearing, Kevin Savage, director of the Division of Developmental Disabilities, said, “we don’t want to just go back to doing things the old way.”

He offered to speak privately after the meeting with several individuals, including LeCour, the teacher, and a woman whose sister was in a group home and having problems eating as a result of the social isolation brought on by the pandemic.

Linda Ward, executive director of Opportunities Unlimited, chimed in with the providers’ perspective:

“It’s not about re-opening (daytime services) but meeting a person’s needs one person at a time,” she said. Funding limitations may dictate that individuals get one day a week of services, she said.

And there’s no “community” to access except for a socially distanced one, Ward said. Moreover,

staff are concerned about exposing themselves and their families to the virus, she said.

“I know that’s not helpful to families desperate for supports but we have to do it one at a time,” Ward said.

Meanwhile, the state’s finances, battered by the COVID-19 pandemic, remain in flux. Much could change before the budget is finalized for the 2022 fiscal year, which begins next July 1. The state budget director, Jonathan Womer, says as much in his memo to department heads dated Aug. 7.

In terms of developmental disabilities issues, Judge McConnell has ordered officials in both the executive and legislative branches, who hold the state’s purse strings, to participate “as needed” in a year-long review of 16 specific issues of concern, and to help find solutions to them.

BHDDH has held initial meetings of five “workgroups” to address issues raised in the judge’s order. In its most recent developmental disabilities community newsletter, the agency put out a call for volunteers interested in working on one of the five committees.

“We are looking for individuals receiving services and family members to participate in their choice of one of five workgroups to add their expertise and input into the system reform,” the newsletter said.

Anyone interested may email Cindy Fusco at Cynthia.Fusco@bhddh.ri.gov.

The newsletter described the workgroups as follows:

1. Eligibility Process Workgroup: This workgroup will look at the process for determining the support needs of each individual and the need to consolidate the application for all pertinent RI services into one process.

2. Appeals Process Workgroup: This workgroup will look at the appeals process for individuals as it relates to eligibility, level of need, or funding level, including the L9/S109 (appeals) process for requesting additional funding.

3. Individual Budgets and Authority Workgroup: This workgroup will look at the process and timeline for developing annual individual budgets responsive to individual needs, allowable costs, and flexibility.

4. Fiscal Workgroup: This workgroup will look at authorizatons, rates, and billing units.

5. Contracts Workgroup: This workgroup will look at the timeline and process by which individuals contract with providers, billing procedures, and how to increase individual control over their services and how their budget is spent.

OP-ED: RI Must Do Better By People With I/DD

By Terri Cortvriend

The COVID-19 pandemic has hit hardest the areas and populations that were already struggling, since they had the fewest resources for adaptation and safety. We’ve seen the outsized effects on the poor and on minorities. Another group that it has been disproportionately hurt is adults with intellectual/developmental disabilities (I/DD).

Photo Courtesy of RI Rep. Terri Cortvriend

Here in Rhode Island, adults with I/DD have not been provided adequate resources for many years. Before the pandemic, a federal judge was already mulling the possibility of ordering further overhaul of our troubled system of services. And then the pandemic shut down most day programs and employment opportunities, leaving this very vulnerable population without critical supports. Residents and underpaid staff at group homes have been at risk for illness, and those living at home face isolation and a reduction or loss of in-home support services. Agencies that serve them, which have mostly operated on the financial brink for years, are in danger of going under permanently.

The challenges of the pandemic and recovery from it threaten the already sub-par progress the state has made toward fixing this system. A Senate task force led by my colleague and fellow Aquidneck Islander, Sen. Louis DiPalma, has been shedding light on the obstacles, which include a fee-for-service structure that discourages innovation and integration.

Rhode Island must do better for its residents with I/DD. Every individual served is a deserving person whose needs include meaningful activities that support their personal goals and a valued role in their communities.

I urge my colleagues in the House to get on board with the Senate, where Sen. DiPalma has long worked to call attention to the need for better funding and a more workable system of supports for adults with I/DD. We need to join him in fully recognizing and supporting the importance of the work that must be done to provide enriching and effective services to Rhode Islanders with I/DD. We may be deeply ashamed of our state’s history – from the not so distant past – of “dumping” people with I/DD at the notorious Ladd School, but have we really come very far if we are not providing them with the means they need to have a fulfilling life in the community?

RI State Representative Terri Cortvriend, a Democrat, represents District 72 in Portsmouth and Middletown.

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.

Judge Signals Stepped-Up Oversight Of RI Olmstead Consent Decree

By Gina Macris

John J. McConnell, Jr.

Chief Judge John J. McConnell, Jr. of the U.S. District Court is gearing up to order a soup-to-nuts overhaul of Rhode Island’s troubled developmental disability service system and he wants a detailed plan hammered out during the next year. 

Chronic problems exacerbated by the COVID-19 pandemic have pushed McConnell’s long-simmering concerns over the fiscal stability of developmental disability services “front and center,” as the judge put it during a public hearing in mid-May.

At that time, he asked an independent court monitor to recommend steps for ensuring the long-term survival of a reformed system that will be in full compliance with the Integration Mandate of the Americans With Disabilities Act (ADA). The proposed directive resulted from the monitor’s recommendations.

The order, sent to lawyers for comment earlier this month, says the state must fix systemic problems that pose “fiscal and administrative barriers” to compliance with a 2014 civil rights consent decree, which calls for integrated work and non-work activities based on a 40-hour week of services.

The barriers to compliance include the major pillars of a fee-for-service system the General Assembly enacted in 2011 that incentivized segregating adults with developmental disabilities in sheltered workshops and day care centers, in violation of the ADA’s Integration Mandate, according to findings of the  U.S. Department of Justice (DOJ). The Integration Mandate was re-affirmed by the U.S. Supreme Court in the 1999 Olmstead decision.

Although the last sheltered workshops closed in 2018, some center-based day programs were still in operation before the pandemic hit.

Hearing Scheduled July 30

McConnell has given state and federal lawyers until July 30 to  tell him why his three-page directive should not move forward as a formal order, with a deadline of June 30, 2021 to develop a new system that meets the needs of the roughly 4000 individuals it serves.

Lawyers for the state and the DOJ have responded with an agreed-upon list of topics to be discussed at an upcoming hearing on the status of consent decree compliance.

The agenda, filed with the court July 23, said the state would address both long-term compliance with the consent decree and the immediate pressures posed by the COVID-19 pandemic on the developmental disabilities system.

Specifically, the lawyers said they would present information on:

• Integrated employment and day services and the state’s phased reopening

• Support for providers and families during the continuing COVID pandemic

• Preparations for a potential second wave of the pandemic

• The fiscal issues and administrative barriers identified by the judge and a plan by the state to resolve them in phases, beginning with quarterly funding authorizations, staffing ratios, and the requirement to bill for daytime services in 15-minute increments.

Finally, the agenda said the discussion would include the state’s plans for substantial compliance with all requirements of the consent decree by 2024, the year it expires.

The judge’s proposed order would involve the state’s Medicaid administration, the Governor’s office, and the General Assembly in developing solutions to problems in the developmental disability service system and would require progress reports every two months between August 30 and June 30, 2021.

McConnell also wants the state to collaborate with families and providers in developing their plans.

McConnell is expected to take up the proposed order during the remote video hearing on July 30, beginning at 2 p.m. The public may sign in to attend no later than 1:45 p.m. through video or telephone, with instructions posted on the court’s public access web page, here.

COVID-19 Forced Near Shutdown Of Day Services

The coronavirus has hit hard at gains made in the number of regular jobs worked by adults with intellectual or developmental disabilities and the time they spend enjoying non-work activities as part of their communities.

A spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) indicated that about 35 percent of those who had jobs March 1 were still working at the end of May.

Non-work recreational and other activities also have been decimated, but no figures were available from BHDDH about the number of people who don’t have any daytime supports or can’t get the same number of service hours they had before the pandemic.

Parents expressed alarm about a lack of guidance on the resumption of services during a July 21 on-line forum hosted by the Community Provider Network of Rhode Island (CPNRI.)

Susan Willemsen, a parent, wrote in the chat box that accompanied the video meeting: “This is very scary, especially for the parents who need to work and your child does not understand the situation. It is very difficult to be home working 40 hours to survive and take care of a child who is 100% dependent on you. Trying to understand where we go from here.”

Tina Spears, executive director of CPNRI, said providers remain in a precarious financial position and called on the entire developmental disabilities community to press state and federal officials for more funding and priority status for group home operators to conduct on-site testing and gain access to personal protective equipment.

By all accounts, some three dozen private service providers licensed by the state to support adults with developmental disabilities were in tenuous financial condition before the coronavirus pandemic hit Rhode Island in March.

Coping with the pandemic has further exposed gaps in funding and service delivery, which in turn raise questions about the providers’ ability to survive long enough to benefit from a court-ordered restructuring without more immediate and urgent intervention. 

For example, the need for social distancing calls for one-on-one or small group staffing, preferably with the same clients consistently matched to the same support people. But the current funding structure typically will pay for six hours a week of one-on-one support, according to Spears.

Judge Spells Out Requirements

McConnell, meanwhile, indicated he wants change from the first moment an individual or family applies for services from the Division of Developmental Disabilities (DDD).

McConnell said there is a need to consolidate application procedures “for all pertinent RI services into one process.”  That includes streamlining the process for determining Medicaid eligibility and eligibility for developmental disability services, respectively, as well as any other state-funded supports a person might need.

Within the developmental disability service system itself, the judge wants the state to “review, address, and develop a strategy” for resolving problems in the following areas:

• The process and timeline for determining DDD eligibility and individual budgets, as well as the process and timeline in which individuals select private provider organizations.

• The process in which families and service providers appeal DDD’s decisions on eligibility, designated level of need, or funding level.

• The requirement that providers document each staff person’s time, in connection with each client, in 15-minute increments during the day as a condition of reimbursement.

• Reimbursements that are linked to specific staff-to-client ratios. McConnell didn’t spell out the details of how those ratios hinder integration, but one provider has offered a memorable example: The provider said the staffing ratios forced him to group together five clients with widely differing interests for job exploration in one community setting where he could supervise without help from another staffer. 

• Funding authorizations for each client that last only three months at a time, with no ability to carry forward any unused portion of the budget beyond the designated fiscal quarter. That feature, combined with the fee-for-service structure of the billing services, means that unless there is 100 percent attendance by all persons at all times, the spending ceiling can never be reached. A consultant’s study several years ago found that providers billed for an average of 85 percent of funding authorizations.

  The requirement that people with intellectual and developmental disabilities, recognized as life-long conditions, must periodically re-establish their eligibility status for services.

McConnell also asked the state to come up with:

• A clear definition of functions and activities for which funding is permitted, along with the associated rates for each.

• Different funding levels for different activities that are “responsive to individual support needs.”

• Guidance on combining individual budgets at the request of the people involved

With the state shutdown beginning in March, service providers shifted their attention to the safety of those in group homes.

A total of 10 group home residents have died from COVID-19, according to a BHDDH spokesman. As of July 21, 161 group home residents had tested positive and a total of 48 had been hospitalized at one point or another. Five people were in the hospital on July 21, the spokesman said.

Spears, the CPNRI director, explained during the virtual public forum that providers have faced unprecedented costs in securing personal protective equipment for staff, carrying out aggressive cleaning protocols and paying for overtime, while being unable to bill the state for many services.

Providers did get some emergency federal assistance channeled through the state, albeit less than what was originally promised, to continue operations through periods of the highest risk and to give temporary pay raises to staff. But those supports have now ended, Spears said, and there’s “no grand way or plan forward” for moving the system to a new normal.

Spears said a top priority is permanent pay hikes for staff, who have been chronically underpaid and have “a thousand reasons” during the pandemic to stay home.

State officials are waiting for Congress to decide on a second stimulus package before moving ahead to set the budget for the current fiscal year. The pace of budget deliberations is expected to pick up in early August, said State Sen. Louis DiPalma, D-Middletown, who is first vice-chairman of the Senate Finance Committee.

In a brief interview the day after the meeting, Spears said the imperative for moving forward with a plan for re-opening developmental disability services should flow from the state’s legal and moral responsibility, not the budget.

State officials can “sit in a holding pattern and worry about the budget all you want, but these are human lives we’re talking about,” she said.

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.

Racism Compounds Stresses of COVID-19, Say RI DD Community Voices

Iraida Williams

By Gina Macris

(This article was updated June 9 )

A Rhode Island man with developmental disabilities, stuck at home since the start of the COVID-19 pandemic, is anxious to get back to his regular activities but also is “afraid to take out the trash because he’s black,’’ his mother told a virtual crowd of about 170 people June 5.

Iraida Williams, the man’s mother, spoke during a Zoom forum co-sponsored by the state Executive Office of Health and Human Services (EOHHS) and the Rhode Island Parent Information Network to discuss the hopes and fears of those involved with the developmental disability services. 

Marti Rosenberg

Marti Rosenberg, the moderator or the forum, replied that “just this morning,  EOHHS  has been grappling with these concerns.”

Rosenberg, director of Policy, Planning and Research at EOHHS, said the leadership wants to make sure that “EOHHS agencies are specifically having those difficult conversations.

 “We need to make sure we have an absolutely specific answer for your son,” she told Williams.

Williams said, “I look forward to hearing back from somebody.”

Until now, quarterly community forums on developmental disabilities have been run by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

But in choosing Rosenberg to moderate Friday’s event, EOHHS signaled a desire to bring the particular concerns of those facing intellectual and developmental challenges to the highest levels of the executive branch of state government.

On June 9, a BHDDH spokesman offered additional context, saying that EOHHS has been helping its member agencies with planning throughout the COVID crisis. Rosenberg had facilitated a number of reopening planning conversations with providers and other community members in partnership with BHDDH and DCYF, and the June 5 Zoom meeting was another in that series.

The meeting was almost entirely given over to participants and their ideas for re-opening regular services. But echoes of ongoing protests against racism in Providence and across the nation were never far from the surface.

Kelly Donovan

Kelly Donovan, who receives state-funded services and is a vocal advocate for herself and her peers, said “people are either antsy to resume their lives or afraid of going out.” In the chat box that accompanied the audio and video of the Zoom meeting, she said she herself is “worried about getting sick and equally worried about the United States turning into a dictatorship.”

Ken Renault of the advocacy group RI FORCE said he had concerns about the neglect or abuse of people with disabilities because of the stresses of the last few months.

Rosenberg said group home residents of color and workers of color have been experiencing even more stresses because of the massive attention to police brutality that has been the focus of widespread protests organized on the heels of the pandemic lockdown.

The COVID_19 pandemic has highlighted the difference between the haves and the have-nots and, and it’s time to recognize the institutional racism in the dividing line between them, said Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council.

“Yes,” wrote Donovan in the chat box that accompanied the video. “Institutionalized racism is a problem. It is rampant!”

Separately, Nerney and the leaders of Disability Rights Rhode Island and the Sherlock Center on Disabilities at Rhode Island College released a statement decrying the death of George Floyd in police custody in Minneapolis May 25, calling it murder.

“The RI DD Network stands on the side of those who are protesting another needless death, who reject hate, and who demand justice. We are committed to effectuating full inclusion in society and working for the civil and human rights of Rhode Islanders with disabilities of all races, cultural backgrounds and ethnicities,” the statement said. It was issued by Morna Murray of DRRI and Amy Grattan of the Sherlock Center, in addition to Nerney.

Kevin Nerney

During the meeting, Nerney said people with resources have weathered the statewide lockdown with few problems, but the have-nots have struggled.

COVID-19 can be a “springboard for systems change going forward,” Nerney said.

Tina Spears, executive director of the Community Provider Network of Rhode Island, asked what day services might look like as the state re-opens.

“People won’t be able to congregate in the same ways they did before the pandemic hit,” Spears said. It will be “challenging for all of us. How can we administratively and financially do this?”

Thirty percent of daytime services occur in group activities in day centers, according to the independent federal court monitor overseeing the state’s efforts to integrate adults with developmental disabilities in their communities. The monitor, A. Anthony Antosh, has asked that center-based care be eliminated when daytime services resume on a broad scale.

That move would inherently increase costs for providing services because supporting people in the community individually or in small groups is more labor-intensive than overseeing them all in one facility.

(Some agencies are able to provide limited one-on-one or small group services in the community during the pandemic, depending on individual circomstances.)

Nerney said that in an improved system of services, the consumer “has to have full control of planning, evaluation and budget, with assistance from trusted people.”

And the system must move away from congregate care while still giving people a full array of supports, he said.

That last comment sparked push-back from some parents, who said there will always be a need for group homes.

Kevin Savage, the director of the Division of Developmental Disabilities, addressed the issue:

Kevin Savage

“If we say we need congregate care, we can’t imagine providing services another way, in-home or living independently,” he said.

“The ultimate goal is people making their own choices,” he said. While the state closed its institution for people with developmental disabilities more than 20 years ago, if people are living in group homes with others not of their own choice, the de-institutionalization is not complete, Savage said.

Since 1994, when the Ladd School closed,  Rhode Island has supported relatively few housing options for adults with developmental disabilities. And housing is a primary concern, particularly for aging parents.

Savage did not address the cost of safe and supportive alternatives to group homes. For example, staffing an apartment with two or three residents 24 hours a day is inherently more costly than providing that coverage in a group home setting with four to eight residents.

Claire Rosenbaum, coordinator of adult supports at the Sherlock Center, said during the Zoom meeting that many people with intellectual or developmental disabilities may experience some depression as a result of the continuing isolation and may need mental health supports built into their services.

Other comments touched on a need to enable adults with developmental disabilities to have easy access to technology. Rory Carmody of AccessPoint RI and Casey Gartland of Perspectives explained how they used remote audio and video and other hi-tech capabilities to continue to place and support some clients in jobs during the pandemic and to conduct other activities.

John Susa, a parent and long-time advocate, said the Division of Developmental Disabilities has relaxed “a lot of unnecessary rules” during the pandemic. He said he would like the state to ”keep as many of those relaxations in place” as possible.

Carolyn Maxwell, who directs her daughter’s services, said she is particularly pleased about a rule change that allows her to receive compensation for the work she does with her daughter, Emily.

Maxwell, a teacher, said at the previous community forum in March that she was never able to return to the classroom after Emily was born 27 years ago. At the same time, she has had difficulty finding paid staff to work with her.

Maxwell has helped Emily start an online business called “Love Letters By Emily” that features handmade note cards and art photography incorporating American Sign Language, which Emily uses in daily life.

Speaking via Zoom last Friday, Maxwell said that being compensated as Emily’s caregiver has been a “huge help to us.” She wants the rule change to become permanent.

Savage, the state’s developmental disabilities director, said in mid-May that the relaxed rules on hiring legal guardians and other family members would remain in effect. Savage made the comment during a federal court hearing in mid-May on the way adults with developmental disabilities have fared during the pandemic, in conjunction with a 2014 consent decree that gives the court jurisdiction over state-funded daytime services.

Addressing procedures for re-opening developmental disability services, state officials said they anticipated guidelines for ending the lockdown at group homes to be issued later in the day on June 5. The guidelines were issued June 6. To read them, click here.

Service providers are expected to use the guidelines to develop a plan for re-opening group homes to family visits and other normal comings and goings, said Rosenbaum, the adult supports coordinator at the Sherlock Center. Plans must get approval from the BHDDH before they are implemented. (An earlier version of this article incorrectly said approval must come from the Department of Health.)

Rosenberg said the first set of guidelines will apply only to group homes. A separate second set of guidelines will be issued for day services, she said.

The resumption of day services would follow the same sequence, with the issuance of guidelines for providers to draft plans specific to their agencies.

Photos of themselves courtesy of Iraida Williams and Marti Rosenberg. All other photos by Anne Peters.

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

McConnell Announces Remote Viewing Option For Court Hearing Monday on RI DD Consent Decree

By Gina Macris

The public will be able to observe Monday’s U.S. District Court hearing on the status of the 2014 Rhode Island Olmstead consent decree via Zoom video conference, Chief Judge John J. McConnell, Jr. has announced. A separate audio-only option also will be available by telephone.

McConnell has issued detailed instructions on the process for accessing the official proceedings via Zoom, which must be done no later than 1:45 p.m. Monday, May 18, fifteen minutes before the hearing is scheduled to begin.

McConnell said the public may view this video conference hearing by:

1. Going to www.zoom.com

2. Clicking on “Join a Meeting”

3. Entering the following Meeting ID: 160 443 9381

4. Entering the following Password: 947727

The judge said that once the hearing begins, no additional viewers will be allowed access. Court personnel will turn off the audio and video that would otherwise permit the court to see and hear spectators, and McConnell asks that viewers keep their audio and video turned off until the hearing concludes. Only case participants need to be seen and heard by the Court, he said.

McConnell said the Court also will provide an audio stream of the hearing through the AT&T Teleconferencing system. Instructions for dialing into the audio stream can be found here.

The judge also reminded the public of court rules on the “general prohibition against photographing, recording, and rebroadcasting of court proceedings.”

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 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.

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 .

Kerri Zanchi, RI Developmental Disabilities Chief, To Step Down At End Of March

This article has been updated.

By Gina Macris

Kerri Zanchi * Photos by Anne Peters

Kerri Zanchi, who for three years has led Rhode Island’s Division of Developmental Disabilities, announced March 5 that she will step down at the end of the month to pursue a different professional opportunity closer to her family in Massachusetts.

Zanchi, who came to the job early in 2017 with a passion for bringing equity to the lives of those facing intellectual challenges, has been given high marks for improving frayed relationships between the community and the bureaucracy of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

But she has faced mounting demands on her energies and time from two directions; federal civil rights agreements with increasingly exacting requirements for integrating adults with developmental disabilities in their communities, and an inherited funding mechanism that was originally designed for a segregated system of care.

In January, 2017, she was the first developmental disabilities professional in a decade to be selected to lead the Division of Developmental Disabilities. In the past three years, in response to companion federal civil rights agreements of 2013 and 2014, Zanchi has has expanded the professional staff of the division to put greater emphasis on supported employment services, gear up a quality improvement initiative and increase responsiveness to issues surrounding high school students moving into adult services.

Although BHDDH has won nearly $20 million more in the last few years for raising the wages of direct care workers in the private sector, the financial picture for the agencies that employ them remains tenuous, according to a recent consultants’ report.

In a March 5 letter to private service providers and others in the developmental disabilities community, Zanchi said she was stepping down “with mixed emotions.”

“With the interests of my family, I have decided to pursue an opportunity in Massachusetts with a continued focus and commitment to disability services,” said Zanchi, the mother of three school-aged boys.

“I remain tremendously appreciative of your consistent partnership, your support and your tenacity,” Zanchi said.

“It has been a rewarding experience for me personally and professionally and I will carry forward the values of the Rhode Island DD system,” she said.

Reached on Friday, March 6, Zanchi said she has been overwhelmed by the number of supportive calls and emails she has received from parents and others in the community during the first 24 hours after her announcement.

Zanchi, a family member of a Rhode Islander with a disability, said she has done her utmost to balance her role in changing the developmental disability service system with ensuring that she and her staff have been responsive to the needs to individuals and families on a daily basis.

Asked whether the demands of the job got to be too much for her at this point in her life, she said she has made it a point to answer every call from consumers and families and listen to the “good and not so good experiences of people. I wouldn’t change that,” Zanchi said, but “that does take a lot of time. The other demands are always still there.”

She said she would advise the future leadership to keep nurturing those personal relationships with the community. “You’ve got to stay close the work and you’ve got to be available to the people who rely on us,” she said.

Zanchi praised many collaborative efforts that have led to a number of changes, including expansion of supported employment services. Others that respond to the consent decree and to a gap in mental health services for adults with developmental disabilities include:

• The roll-out of an electronics record system, important for efficiency and for data collection and analysis in furthering the goals required by the 2014 civil rights consent decree

• A review of the rates and the funding model used to reimburse private service providers that is now underway

• Efforts to increase supported employment

• A new mental health initiative called Project START, which will focus on community-based crisis management for persons facing both intellectual and behavioral challenges.

Kevin Savage

Kevin Savage, Associate Director For Quality Management at BHDDH, will serve as interim director of the Division of Developmental Disabilities until a permanent replacement is selected.

No details about a search for a new director were immediately available.

Zanchi received her master’s degree in social work from Rhode Island College in 1999 but has worked most of her professional life in Massachusetts in the field of disabilities. Zanchi is a former Assistant Commissioner of the Massachusetts Rehabilitation Council, where she provided leadership and advocacy for six departments of state government focused on helping people with disabilities live in the community.

Antosh Resolves Dispute Between RI and DOJ On Compliance With 2013 Sheltered Workshop Case

By Gina Macris

Federal court monitor A. Anthony Antosh has forged a resolution to a long-simmering dispute between the U.S. Department of Justice and the state of Rhode Island over the state’s compliance in connection with two civil rights decrees aimed at finding jobs for adults with developmental disabilities and otherwise integrating them in their communities.

The Chief Judge of the U.S. District Court in Rhode Island announced that both the state and the DOJ have agreed to a detailed compliance road map crafted by Antosh in an order made public March 3.

In a separate order Feb. 28, the Chief Judge, John J. McConnell, Jr., announced he has elevated Antosh from interim to permanent status as monitor.

The judge’s March 3 order incorporated recommendations Antosh had previously submitted detailing the parameters for the state’s “substantial compliance” with a 2013 Interim Settlement Agreement (ISA), a total of 88 adults with developmental disabilities.

Antosh focused on 32 individuals who are either unemployed or working in non-competitive employment for a private developmental disability service provider. He enumerated a variety of services and supports which must be provided to these particular people, including new trial work experiences, more non-work activities in the community and a variety of specialized help to break down barriers like mobility issues, vision problems and behavioral challenges which hinder some people from getting around and looking for work.

Antosh extended the monitoring period from the ISA from July to December. To achieve compliance with the ISA, the state must show that 80 percent of the people in Antosh’s case studies are spending more time in the community, either for work or leisure. The ISA was originally scheduled to end July 1.

Antosh also said the existing funding does not go far enough, nor does it have the flexibility to meet the individual needs and preferences of persons protected by ISA, and by implication, a broader 2014 consent decree with a statewide reach.

The ISA and the statewide decree of 2014 both draw their authority from the Integration Mandate of the Americans With Disabilities Act, reinforced by the Olmstead decision of the U.S. Supreme Court.

In addition to requiring funding for specific services, consultations and technology on a person-by-person level, Antosh called for a re-calculation of the state’s existing funding mechanism for reimbursing private providers working with adults facing intellectual challenges.

While such a review is well underway and is expected to wrap up in June, it appears that the earliest the General Assembly would be able to enact any significant changes to the existing funding model would be in 2021, when the statewide consent decree will be in the seventh year of a ten-year enforcement period.

Most, if not all, of the 88 persons protected by the ISA are former students of the Birch Academy at Mount Pleasant High School in Providence. Many of them were funneled from Birch to a now-defunct sheltered workshop called Training Through Placement in nearby North Providence.

In introducing his study of the unemployed ISA population, Antosh noted that most of the people he interviewed could not answer his questions about their interests, the jobs held by relatives or friends, or if there was any kind of work they would like to try.

The answers provided evidence that these individuals had had limited life experiences, “one of the most common characteristics associated with individuals who have an intellectual disability,” Antosh said.

He said that “people do not choose what they do not know about,” which means that the individualized, or “person-centered” process of planning for job searches and other activities is not meaningful unless the person has had a “sufficient number of experiences of sufficient duration.”

This rationale underscored a requirement that each of the currently-unemployed persons have one or two trial work experiences, depending on whether they had previously had any community-based jobs, and that the state find the money to add the supports for these activities.

Since last July, the state had maintained that, because it has policies, practices and resources in place to satisfy the requirements of the 2013 ISA, it had met the compliance standards of the agreement, even if some of the 88 individuals in the protected class didn’t actually have jobs in the community as required.

But Antosh disagreed. He said that because the ISA population is “so small and so focused, the question of substantial compliance is about whether each and every individual has received supported employment services” and other necessary assistance.

Antosh said his study could not find any evidence the state is complying with one overarching requirement in the ISA, that it provide services for a total of 40 hours a week, including work and non-work activities in the community. The same requirement carries through to the statewide consent decree of 2014.

The state had said, in effect, that its best efforts to find jobs for the ISA population satisfied the requirements of the interim agreement, even though 15 former Birch students had never been employed outside of a sheltered workshop. The state has pledged to continue working with these persons.

But Antosh analyzed the barriers to employment listed by the state in these cases and made recommendation for ways the state can mitigate them:

For example, the state should provide:

• Up-to-date communications technology for people who have difficulty expressing themselves verbally

• Consultations with physical or occupational therapists for people who could benefit from better wheelchairs or other strategies for positioning their bodies.

• Access to tablets and other technology for those who want to do job searches or just stay in touch with the activities occurring in their communities.

• Assistance to service providers to develop strategies for reinforcing positive behavior for those who struggle with behavioral challenges. He said he found no evidence that these strategies were being used with the people who need them.

• Opportunities for conversations between families of persons with developmental disabilities who have had experience with supported employment and those who are resistant to the idea. Antosh said those who are resistant have expressed a willingness to listen to other families.

As for the state’s role in job searches, Antosh prescribed an approach similar to the “Real Jobs” strategies used by the state Department of Labor and Training, which starts with a survey of the needs in the business community and then tries to match individual interests and aptitudes with those openings, offering training to prepare potential job applicants.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has indicated it is close to announcing the third iteration of a targeted supported employment program that will focus on some 200 adults with developmental disabilities who have never had regular jobs. It is not clear whether the plans for the newest version of the so-called Person-Centered Supported Employment Performance Program will correspond to Antosh’s approach, which is now required by the Court.

Antosh plans to track increases in jobs and community activities during reviews in May and November to determine if the required services are in place for each person and whether there is a positive change in their engagement with the community.

Assuming that the state achieves compliance in December, there would be another year’s probation, through the end of 2021.

Antosh does not expect everyone who is either unemployed or not competitively employed to have a job in short order. In his report, he estimated that 9 of the 32 people on his list can be employed in a year’s time and that another two can find jobs within two years.