Judge: RI Must Expand DD Budget Or Risk Olmstead Consent Decree Noncompliance

By Gina Macris

Judge McConnell

Rhode Island will not be able to meet a 2024 deadline for complying with a 7-year-old civil rights agreement unless it begins allocating money now to attract an adequately-paid, skilled workforce to serve adults with developmental disabilities in their communities.

So says Chief Judge John J. McConnell, Jr. of the U.S. District Court in a nine-page order issued March 16 clarifying what it will take to comply with a 2014 consent decree correcting Rhode Island’s violations of the Integration Mandate of the Americans With Disabilities Act (ADA).

Five days ago, on March 11, Governor Daniel McKee submitted a state budget request to the General Assembly that does not propose any rate increase for direct care workers. These workers are employed by the private agencies the state relies on to carry out provisions of the 2014 Olmstead consent decree.

Under the current rates, providers are able to pay front-line workers an average of $13.08 an hour, or $1.58 above the state’s minimum wage of $11.50, McConnell said in the statement, which amounted to a tutorial on the issues affecting compliance.

The $11.50 rate went into effect last October, and McConnell pointed out there are bills pending in the General Assembly for additional raises.

“The functions and responsibilities of staff who provide direct support to adults who have intellectual and developmental disabilities are significantly more challenging than many minimum wage positions,” McConnell said.

In several states the pay of direct support staff is considerably higher than minimum wage, he said. Utah, for example, has set its direct care rate at 72 percent above minimum wage.

He drew a straight line connecting low wages, high turnover, and an inability of the provider agencies to find a well-trained, stable workforce capable of providing an array of services that will enable adults with developmental disabilities to live meaningful lives in their communities in accordance with the ADA’s Integration Mandate.

One in five jobs in private agencies are currently vacant, and agencies report an average annual turnover of about 30 percent, according to a survey by an independent court monitor conducted in February. In addition, 80 percent of adults and families who direct their own programs said they had difficulty finding staff, and 68 percent said they had difficulty retaining staff, according to the monitor.

McConnell’s latest statement underlined an order he issued Jan. 6 which requires the state to raise workers’ wages to $20 an hour by 2024 as part of a comprehensive overhaul of services from center-based group care to one-on-one or one-to-two staffing in the community.

He said the state must collaborate with service providers and advocates in the community to develop a three-year budget strategy for compliance with the consent decree and give him monthly progress reports at the end of April, May, and June.

The judge cited a 2020 report of the state’s own consultants that concluded the provider agencies are financially “fragile and profoundly undercapitalized.”

McConnell also felt it necessary to say that the “entirety of the State” is a party to the consent decree, not merely the state agencies identified in the document.

The McKee administration and the leadership of the House and Senate had no immediate comment on McConnell’s order.

The judge reminded the state that the findings of the U.S. Department of Justice in 2014 cited “multiple concerns” about the state’s failure to comply with the Integration mandate.

Among them were:

• A lack of resources

• Failure of the state’s rate-setting methodology and reimbursement model to promote integrated supported employment and day services

• The inflexibility of the state’s reimbursement model.

McKee’s budget for the fiscal year beginning July 1 includes a proposed $15 million “transformation and transition fund,” but it’s not clear exactly what that money will pay for.

There are five committees already working under the supervision of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals on proposed administrative reforms.

But McConnell has signaled he wants the planning complete by the end of June and the implementation to begin at the start of the new fiscal year in July.

He also noted that the integration mandated by the consent decree are also required by the Centers for Medicaid and Medicare Services if the state is to continue qualifying for federal Medicaid reimbursement under the Home And Community-Based Services (HCBS) Final Rule. Like the consent decree in Rhode Island, that rule gets its authority from the Olmstead decision of the U.S. Supreme Court, which in 1999 clarified the Integration Mandate of the ADA.

“Rhode Island is seven years into the Consent Decree,” McConnell said. (The eighth year begins April 9.)

“With three years remaining, there is significant work still to be completed,” he said in conclusion.

Click here to read Judge McConnell’s order of March 16.

Proposed $10M Cut In RI DD Spending Overshadows Reform Plans

By Gina Macris

Thursday’s initial briefing on Governor Daniel McKee’s proposed budget for adults with developmental disabilities highlighted a $15-million set-aside to plan changes in the system, in response to a federal court order enforcing a 2014 civil rights consent decree.

At the same time, the budget legislation submitted to the General Assembly later in the day, on March 11, shows that overall spending on developmental disabilities would be $10 million less than spent this year.

McKee proposes adding $476,573 to the current developmental disabilities allocation for a total of nearly $304.5 million in federal and state Medicaid money and miscellaneous other sources of funding to close out the current fiscal year June 30.

The budget bill for the next fiscal year cuts overall spending on developmental disabilities to $294.4 million. That total includes $5 million in federal funds and $10 million in state revenue earmarked in the budget for the $15-million “transformation and transition fund” to plan reforms to comply with the consent decree.

The spending cut reflects projected savings from phasing out the costly state-run group home system. Residents would be moved to less costly group homes run by private service providers, according to the budget plan.

But the private agencies, who were in a precarious financial position even before the onset of the COVID pandemic a year ago, have been reluctant to take on additional clients in recent years because the amount the state pays does not cover the actual cost of services, according to repeated testimony before House and Senate finance committees, as well as testimony in federal court.

The state’s own consultants, the non-profit New England States Consortium Systems Organization, highlighted the providers’ fiscal problems and the way the demands on them strained capacity as part of an exhaustive 18-month study completed last summer for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The core long-term problem, exacerbated by COVID-19, is an inability to find workers for jobs that carry a high degree of responsibility but provide an average starting wage of about $13.18 an hour, less than some fast food and retail chains and less than Amazon, according to testimony before Chief Judge John J. McConnell of the U.S. District Court.

McConnell, who enforces compliance with a 2014 civil rights decree requiring the integration of adults with developmental disabilities in their communities, has ordered the state to raise workers’ wages to $20 an hour by 2024 as part of a comprehensive three-year overhaul of the developmental disabilities system.

The state budget indirectly controls how much the private providers can pay their workers by setting reimbursement rates for various services, but no money in McKee’s proposal is carved out for a rate increase.

Nor does it appear the McKee administration anticipates the heightened level of spending in the next several years that would support the kind of investment needed to comply with requirements of the consent decree to accommodate clients’ desire to be part of their communities, at work and at play. The consent decree gets its authority from the Integration Mandate of the Americans With Disabilities Act.

McKee’s budget summary anticipates costs for developmental disabilities services will increase 4 percent annually through 2026.

A 4 percent annual increase would come nowhere close to fulfilling the court-ordered hourly wage of $20 an hour which, according to one estimate, would require an budget hike exceeding 45 percent.

The budget summary indicates the state aims to save a net $11.4 million by transferring the operations of the state-run group home system to the privately-run system by October 1.

The state-run system, called Rhode Island Community Living and Supports, (RICLAS) is currently allocated $29.7 million to care for 116 group home residents. The budget summary says transferring RICLAS operations to the private group home system would save $19.2 million in federal-state Medicaid funds in the RICLAS account in the fiscal year beginning July 1.

At the same time, a total of $7.8 million would be added to the private provider system to care for the former RICLAS residents. The budget for the next fiscal year would still leave about $9 million in RICLAS through June 20, 2022. A BHDDH spokesman could not immediately say how long the RICLAS phase-out would take.

The $19.2 million cut in RICLAS would eliminate the equivalent of 50 full-time jobs, mostly from attrition or transfer, the BHDDH spokesman said. RICLAS caregivers are paid a minimum of $18 and receive state employee benefits.

The last time BHDDH announced plans to move large numbers of people in residential care, in 2016, it achieved only a small fraction of the savings the Office of Management and Budget had calculated.

Of 100 persons projected to move from group homes to less costly shared living arrangements in private homes during the first six months of 2016, only 21 made successful matches with families.

Instead of projected savings of $19.3 million, the state recouped a few hundred thousand dollars in that six-month period.

Between March, 2016 and July, 2020, the number of people in shared living arrangements increased from 288 to 399. Since then, the number has decreased to 378, according to BHDDH figures.

The $15-million transformation and transition fund would support a policy and planning effort to carry out reforms required for compliance with the consent decree, according to the budget bill.

BHDDH informed Judge McConnell in February that the changes would take 18 to 24 months to implement, with a target date of December, 2022.

According to the budget language, the fund will be dedicated to:

• Help providers “strengthen” their operations to “support consumers’ needs for living meaningful lives of their choosing in the community”

• Allow providers the chance to participate in a performance-based payment model

• Reduce administrative burdens for providers

• Invest in “state infrastructure” to implement and manage these initiatives

• Prepare for a new way of approaching budgeting of the developmental disabilities caseload in the future.

Beyond the language in the budget bill, there were no details immediately available from BHDDH on what the transformation and transition fund will pay for.

$15 M for RI DD Reform Planned In Next Budget

By Gina Macris

Rhode Island Governor Daniel McKee unveiled a budget plan March 11 that includes $15 million for structural reforms to services for adults with developmental disabilities in the next fiscal year.

Overall, McKee’s has proposed an $11.17 billion budget for Fiscal 2022 which promises to resolve a statewide $336 million deficit while protecting those hardest-hit by the pandemic and helping small business. McKee said the budget “protects Rhode Islanders through an unprecedented public health crisis and lays the foundation for a durable recovery.”

At a noontime virtual briefing for reporters, A. Kathryn Power, director of the state Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals, said $10 million of the developmental disabilities reform effort will come from state revenue and another $5 million will be funded by the federal government.

She said BHDDH wants to create a “stronger provider community that is fiscally sustainable.” The reform efforts will increase opportunities for employment and other services for adults with developmental disabilities, she said.

Chief Judge John J. MCConnell, Jr. of the U.S. District Court has ordered the state to develop a three-year plan for overhauling privately-run services comply with a 21014 consent decree which requires Rhode Island to integrate adults with developmental disabilities in their communities in accordance with the Americans With Disabilities Act.

The developmental disabilities budget contains a separate $4.5 million allocation for “alternative placements” for adults with developmental disabilities who live in a state-run group home system called Rhode Island Community Living and Supports.

A ten-percent increase for shared living caregivers also will be in the budget, as part of another group of expenditures intended to encourage more home and community-based services as an alternative to residential care.

Additional information was not immediately available on budget details affecting those with developmental disabilities.

RI General Assembly Will Handle Court-Related DD Issues DD Issues In Regular Budget Talks

By Gina Macris

The pace of discussions for complying with a court-ordered overhaul of Rhode Island’s developmental disability system is expected to pick up as early as next week, when newly elevated Governor Daniel McKee rolls out his budget proposal for the fiscal year beginning July 1.

McKee was sworn in March 2, replacing Gina Raimondo, who resigned as governor after clearing final hurdles in Washington, DC to become Secretary of Commerce. Raimondo’s office said in mid-January that McKee, then Lt. Governor, would be responsible for submitting the budget proposal to the General Assembly.

It remains unclear to what degree, if at all, the proposed state budget will incorporate additional money for initial steps toward compliance with a federal court order enforcing a 2014 civil rights agreement.

While uncertainty about funding hovers, court-ordered discussions organized by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) have been underway since last August to develop a path forward for providing services that will encourage integration of adults with developmental disabilities in their communities, in accordance with the 2014 consent decree and the Americans With Disabilities Act.

A recent report to Chief Judge John J. McConnell, Jr. of the U. S. District Court indicates short-term recommendations are taking shape to address some of the 16 points the judge laid out in a reform agenda last summer.

He gave the state until June 30 to develop a three-year implementation plan that will achieve full compliance with the consent decree by 2024.

Representatives of the House and Senate leadership participated in some court-ordered reform talks until McConnell issued an order Jan. 6 which said the three-year plan must include these specifics:

• a $20 minimum wage for direct care workers by fiscal 2024.

• Incorporation of the developmental disabilities caseload in the formal process for estimating the state’s public assistance obligations for budget calculations, beginning this year.

On March 3, House Speaker Joseph Shekarchi and Senate President Dominick Ruggerio issued a new statement on how they will handle legislative issues raised by the reform efforts:

“Specific issues will be analyzed and discussed in legislative committees as part of the public hearing process on pending legislation as well as the upcoming state budget.”

The two leaders continued: “The members of the General Assembly care deeply about individuals with developmental disabilities and ensuring a strong continuum of care, and the Senate President and House Speaker believe that we have an obligation as a society to provide strong services and supports for all vulnerable Rhode Islanders.”

The leadership had withdrawn from reform talks out of concern that their representatives’ participation could be perceived as tacit approval of change outside the legislative process, according to separate letters sent to McConnell Feb. 3.

Shekarchi’s and Ruggerio’s statement did not specifically mention the direct care worker wages or making the developmental disabilities numbers part of the twice-yearly Caseload Estimating Conference, the budgeting tool used by the governor and the legislature.

Development of a new approach for determining how to support the individualized plans of the developmentally disabled population is at the heart of the overhaul. The existing fee-for-service system was designed 10 years ago for congregate care, where one or two staff members could oversee as many as ten clients in a day care center or sheltered workshop. The U.S. Department of Justice found that model violated the ADA’s Integration Mandate.

In November, McConnell heard testimony that the current funding ceiling for the private provider system, roughly $268.7 million in federal/state Medicaid money, will not support integrated services, which are much more labor-intensive — and thus, more costly — than congregate care. The cost of correcting the non-compliance could increase the developmental disabilities budget by nearly 50 percent, according to one estimate.

Because of the uncertainty over funding, five workgroups organized by BHDDH are focusing on short-term changes that can ease administrative burdens on providers and make the state bureaucracy more user-friendly for the individuals served and their families, according to a progress report submitted to McConnell at the end of February.

According to the report, BHDDH expects to have detailed information by March 31 on:

• shifting from quarterly to annual per-person budget authorizations

• streamlining dozens of private provider billing codes, many of which require documentation of staff time in 15-minute increments for each client served

• simplifying the process of writing each client’s annual service plan “to reduce repeated questions, frustrations, and errors requiring correction and intervention.”

The report recommends adding a second assessment or new questions or criteria to improve the accuracy of the standardized Supports Intensity Scale-A, (SIS-A) interview, used to determine service needs and funding levels.

Improved assessments would reduce reliance on appeals. Interviewers also need training on cultural differences, it said.

Additional recommendations include:

• a training program for parents on how to approach the SIS-A, which has been the subject of frequent complaints over the years from parents

• clarification of the process for appealing funding determinations made as a result of the SIS-A, and developing ways to more quickly resolve appeals

• consolidation of separate applications for Medicaid and for Medicaid-funded services into one process

• a request for a waiver from the Centers for Medicare and Medicaid Services for Medicaid eligibility redeterminations for persons with developmental disabilities, who have life-long conditions.

The report said long-term revision of the fiscal and reimbursement system will be implemented by December, 2022.

The workgroups developing the recommendations include both state officials and representatives of the community, including individuals who themselves receive services, families, advocates, and service providers.

The groups’ recommendations are reviewed by the appropriate department-level directors and other key officials, according to the report.

Once final recommendations are analyzed and decisions made by the state, a “cohesive workplan” that will be submitted to McConnell on or before June 30 as required by an order the judge issued last July 30, the report said.

The Arc Rhode Island Comes Back Into Action

By Gina Macris

The Arc Rhode Island, a once powerful advocacy organization for those with developmental disabilities, has come back into action during the last two years under the wing of The Arc of the United States.

Joanna Scocchi

The state organization, which had been dormant for a decade, has grown into an office of four during the last two years. Under the leadership of Joanna Scocchi, it has revived not only its legislative advocacy but it offers support to parents facing special education issues and facilitates partnership-building activities in the community, sometimes one person at a time.

A case in point is the young man who agreed to go out to a Saturday lunch in Newport with his brother and his brother’s girlfriend only on the condition that he could be back home in front of his computer screen in time for his late afternoon “Chat Saturday,” an online social circle.

“People look forward to the day they will have a circle,” says Ken Renaud, associate director of The Arc.

“Chat Saturday” is but one facet of “Circles of Connections,” The Arc’s person-to-person response to the isolation of the COVID-19 pandemic that Renaud said he knew “was going to be really intense for the people with developmental disabilities and their families.”

Ken Renaud

Circles of Connections, which had a soft launch last fall, matches small numbers of people with facilitators around common interests, like special education eligibility and advocacy, family dynamics, and various facets of the transition from school to adulthood, a period that is commonly fraught with anxiety for both young people and their families.

The Circles have generated spinoffs, like a virtual movie outing that grew out of Chat Saturday and a group session with a therapist organized by a participant in another Circle called “The Other Side of Grief,” Renaud said.

“ I like it when you have that seed of an idea, and you plant the seed, and it germinates, and you see it grow,” he said of the evolution of Circles of Connections during the last six months.

The “Circles” concept could serve as a model for building friendships after the pandemic, says Kevin Savage, the state’s Director of Developmental Disabilities.

Darlene Faust

“People are genuinely connecting with one another,” Savage said, noting that some of the groups are led by adults with disabilities.

“The Arc of Rhode Island and others who have supported this effort deserve enormous credit,” he said.

Darlene Faust, facilitator for a Circle focused on healthy relationships, agreed with Savage, saying her experience has been gratifying on a personal and professional level.

The healthy relationship Circle has provided a “safe way for people to socialize and have new friendships and actually take part in some meaningful conversations,” she said. It has “redefined the way that I want to do the work that I do post-Covid.” Faust works as Director of Self-Advocacy and Work Preparedness at Looking Upwards, a service provider.

The connections the Circles make on a personal level reflect the core mission of The Arc as a catalyst for family support and advocacy efforts intended to make the community a welcoming place for people with developmental disabilities.

In 2018, the national organization tapped Scocchi to lead the Rhode Island effort, at first on a part-time basis. Scocchi had moved to Rhode Island from New Jersey twelve years earlier as the mother of a young child with developmental disabilities. A former CEO of a human resources staffing agency, she was then in her forties. She had never dealt with special education issues.

But her advocacy for her son grew into into a one-woman non-profit organization called Rhode Island Advocacy For Children, providing one-on-one help for about 200 families a year.

When The Arc of the United States approached her about re-starting a state chapter, Scocchi insisted on bringing the special education advocacy program with her.

Scocchi’s organization continues as a program of The Arc, now under the direction of Mary Lou Rossi. It fits right in with the vision of the national organization.

Peter Berns

“Our focus as an organization is all people, not just those receiving services through the developmental disability system,” Peter Berns, CEO of The Arc of the United States, explained in a telephone interview.

“So much of the advocacy is focused on the service system, but on a national average, only 20 percent who need help get it through the service system,” he said.

People with developmental disabilities should be valued members of their communities, with the supports they need to realize their potential and have a secure future, he said.

Scocchi says she is driven by a passion for equity and has received invaluable support from the national organization, as well as help from local leaders in tapping into an increasingly collaborative network. At the top of The Arc’s legislative agenda this year is a bill, recently introduced by Rep. Lauren Carson, D-Newport, and others, to create an ombudsman charged with ensuring school districts meet special education requirements.

In addition, adult service providers, advocates, and the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) have begun working closer together to respond to both the COVID-19 pandemic and to the demands of the 2014 Olmstead consent decree. Since last August, five committees organized by BHDDH have been working on court-ordered plans to overhaul the developmental disability service system to meet the inclusive goals mandated by the consent decree.

Scocchi spends a lot of time on the phone or in online meetings, keeping connected on a weekly basis, or more frequently, with other disability organizations, BHDDH officials, and Arc leaders in Washington.

Renaud, meanwhile, is reviving a mentorship program for emerging leaders in disability-related fields to lay the groundwork for the kinds of partnerships that will be necessary to open doors in the community for adults with developmental disabilities who are trying to plan their own futures, as required by the consent decree.

For example, disability rights advocates need to enlist the business sector as a whole to support job opportunities mandated by the consent decree for those facing intellectual and developmental challenges, Renaud said.

Called the Rhode Island Facilitator Forum, the new mentorship program had its first online meeting Feb. 12 with about 30 participants, Renaud said. He ran a similar group as part of PAL (Parents And Friends for Alternate Living), an advocacy organization that fell victim to the severe state budget cuts of 2011 that adversely affected those with developmental disabilities and their families across the board.

“I can’t think of a better time to bring this back together,” Renaud said. In the months ahead, the program will work with the Rhode Island Developmental Disabilities Council, the Sherlock Center for Disabilities at Rhode Island College, and experts from outside the state to focus on ways to create a welcoming community for those with developmental disabilities, Renaud said.

The Arc in Rhode Island had been dormant since 2008, the twilight of a forceful movement in which the state became the first in the nation to deinstitutionalize people with developmental disabilities.

By 2014, with Rhode Island ranked at the bottom of states for its support of people with developmental disabilities, community leaders begun approaching The Arc of the United States to help revive the organization and its role as advocate. Scocchi opened an office in North Kingstown on a part-time basis in 2019 and went fulltime a year later.

The Arc of the United States works with the Rhode Island chapter as a full-fledged affiliate of the national organization, an approach CEO Berns said is intended to buttress it against adversity long term. With the national organization handling operations, including the website and financing, the four-person staff led by Scocchi and Renaud can focus on advocacy, education, and support.

Berns said the same approach has been used in reviving statewide chapters in Arizona, Wisconsin, and Georgia, as well as the District of Columbia, where the national headquarters is located.

“We’re pleased in how it has played out in all four states,” Berns said.

“In a relatively short period of time, we’ve gone from The Arc having faded out of view in all those states,” he said, “to re-establishing a presence for education and advocacy for those with developmental disabilities.”

The biggest challenge in all four states is for the chapters to become financially self-supporting by attracting public and private funding from government agencies, business and foundations within their jurisdictions, he said.

“We are making progress in that area,” he said, although he did not offer specifics. Berns indicated that if the affiliate model is successful, it could be used in the 10 states where The Arc does not have a state chapter or office.

RI House And Senate Withdraw From Budget-Related Consent Decree Talks

By Gina Macris

Both the Rhode Island House and Senate have withdrawn from negotiations on a three-year budget plan to overhaul the state’s developmental disabilities system and comply with the Americans With Disabilities Act (ADA).

The development of such a plan had been recommended by an independent federal court monitor as part of a fiscal analysis he submitted in November to Chief Judge John J. McConnell, Jr of the U.S. District Court. McConnell oversees the state’s efforts to get into compliance with a 2014 consent decree in which the state agreed to correct violations of the ADA by 2024.

Members of the House and Senate joined the talks in December, but the leadership of both chambers of the General Assembly decided to withdraw after McConnell made the development of the three-year budget plan the topic of a court order Jan. 6.

Dominic Ruggerio

“We are concerned that continued involvement of the Senate could be perceived as tacit approval of the entire body without the proper processes that allows for meaningful member input,” Senate President Dominic Ruggerio and Majority Leader Michael McCaffrey said in a Feb. 3 letter to McConnell.

The House used similar language in a separate letter.

Ruggerio and McCaffrey wrote, “We appreciate the work of the Court and the process by which you are moving to identify and operationalize solutions to accomplish the goals of the consent decree.”

“We anticipate that the Court will order the state to undertake a course of action, and at that time, in our role as the appropriating body, we will further engage in this process,” the Senate leadership told Judge McConnell.

Last July, McConnell ordered an overhaul of the entire developmental disabilities service system to end segregated care and encourage the integration of individuals with intellectual challenges in their communities.

In response to that July order, representatives of the state’s developmental disability agency began working with families, providers, and advocates on a 16-point agenda for reforming the way services are delivered and the rules for reimbursing the private agencies which provide direct care.

McConnell’s order on Jan. 6 focused on the budgetary implications, memorializing the main points of the monitor’s analysis, including a requirement that the state raise the wages of direct care workers to $20 an hour by Fiscal 2024.

In the same order, McConnell also said the actual costs of developmental disabilities services must be included in a state budgeting procedure known as the Caseload Estimating Conference, which allows the state to get a better handle on its financial obligations for entitlement programs.

Joseph Shekarchi

In a statement responding to a request for specifics prompting the withdrawal, Shekarchi, newly elected Speaker of the House, said, “It would be best to answer these questions with an overall clarification that the action by the House is not a repudiation of any of the specific ideas being discussed.“

When the House was invited to join talks in December, the leadership expected that its representatives would participate in discussions about issues of concern for service providers and options for what might be included in the Governor’s upcoming budget. House leadership “was happy to have someone included,” Shekarchi said.

Because the Jan. 6 order contained “much more prescriptive policy remedies than expected, the House felt that further participation might be perceived as delegation of its legislative authority,” the statement said.

It was out of an abundance of caution that the House withdrew, he said.

The Senate leadership’s letter said it was “unclear if the Senate’s inclusion was designed to guide discussions and outcomes or merely for observation.”

Ruggerio and McCaffrey said “the Senate values continued dialogue and looks forward to reviewing any proffered solutions in an open, public committee process.”

Similarly, the letter from the House leadership said they encourage continued dialogue and “are eager to have one or more of our committees review potential solutions in an open and public process.”

Individual Senators may continue to participate in the current talks, but are acting on their own behalf and do not represent the Senate as a body, Ruggerio and McCaffrey said.

Sen. Louis DiPalma, D-Middletown, has attended the negotiations and is widely known as an advocate for the integration of adults with developmental disabilities.

McConnell, meanwhile, has scheduled a private conference Feb. 11 with the monitor, Antosh, and lawyers representing the U.S. Department of Justice, the state, and several service providers.

AccessPoint RI, CVS, Offering Challenged Rhode Islanders A Leg Up With Virtual Training, PPE

By Gina Macris

ACCESS Point Trainee, Pre-COVID, Practices Inventory Skills.

Rhode Islanders facing challenges in employment, because of developmental disabilities or other struggles, may begin preparing for work in the retail sector sector as soon as next Friday in an eight-week training program offered by AccessPoint RI in collaboration with CVS.

Organizers say the COVID-19 pandemic has slowed enrollment in the training program, which has been offered periodically since 2018 through the Pathways Partnership initiative sponsored by the state Department of Labor and Training.

But as a precaution, the sessions are now offered fully online, or in a hybrid format, according to spokesman Michael Beauregard. Participants learn and practice customer service and retail skills, as well as COVID-19 safety measures, and then gain real work experience, with PPE, (personal protective equipment) in a training site outfitted as a CVS store.

At the completion of the program, participants receive employment assistance to help them find the best match, retail, not exclusively in the CVS chain but at other retailers, like Home Depot, WalMart, Walgreens, and many smaller businesses. Before the pandemic, the employment rate for graduates of the training program was 71 percent, according to Beauregard.

Anyone interested in enrolling in the Feb. 12 class or in getting information about a future training cycle may contact the program coordinator, Jim O’Connor, at 401-200-1230 or email him at joconnor@accesspointri.org.

Vaccinations Accelerate For RI DD Group Homes

By Gina Macris

At least 1,300 residents and staff of group homes for adults with developmental disabilities in Rhode Island have been vaccinated against COVID-19 since Jan. 16, with another 500 vaccinations scheduled for today and plans underway for additional clinics next week, according to a spokeswoman for group home operators, Tina Spears, executive director of the Community Provider Network of Rhode Island.

Spears is coordinating the exchange of logistical information necessary between group home operators and public health officials to carry out the vaccination clinics.

The acceleration of vaccinations for group home residents and staff comes as the rate of COVID-19 infections in congregate care seems to be slowing, after a spike around the Thanksgiving and Christmas holidays. Going forward, health officials on the national and statewide level are racing to step up the pace of vaccinations to prevent the spread of more transmissible variants of the virus arriving from other countries. And they urge the public to remain vigilant about wearing masks and taking other precautions.

A total of 378 group home residents had tested positive for COVID-19 at the end of Tuesday, Jan. 26 – more than double the 182 who had been reported COVID-positive on Nov. 2, according to statistics compiled from RI Department of Health data by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). But there were only about 15 new cases between Jan. 20 and 27, or about half the pace of the weekly increase in mid-December. Among all group home residents in privately-run homes, 31 percent have tested positive since the pandemic began 10 months ago.

A total of 612 group home staff had tested positive by the end of the day Jan. 27, or 16 more than the 596 reported the previous week, according to data compiled by BHDDH. During the prior week, the number of cases among staff had jumped by nearly 50.

The cumulative number of hospitalizations among residents and staff and the number of deaths has remained constant since early January. At that time, 84 residents and 19 staffers have been hospitalized since the pandemic began. Only one person is currently in the hospital. A total of 14 persons have died, most of them group home residents.

COVID-19 Vaccinations Begin At RI DD Group Homes

By Gina Macris

Rhode Islanders with developmental disabilities aged 65 and over and their group home caregivers are receiving the COVID-19 vaccine through the CVS/Walgreen partnership, according to a spokeswoman for the state Department of Health.

More than 300 group home residents and staff were vaccinated over the weekend of Jan. 16-17, said Tina Spears, a representative of private agencies who is coordinating information between the group home operators, DOH officials, and those involved directly in the vaccination process.

“We are hoping to scale up the number this week and every week thereafter,” she said Jan. 20. Spears is executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association. By Jan. 21, tentative plans were being formulated to expand vaccination in the coming days to include younger group home residents with underlying medical conditions, as well as their housemates and staff, Spears said.

The DOH spokeswoman said that all adults with developmental disabilities in congregate care are included in Phase 1 of the vaccination program, with those in the 65 and older age bracket in Phase 1.2 and those younger than 65 in Phase 1.4. The spokeswoman, Anna Tomasulo, could not say exactly when Phase 1.4 would begin, or when adults with developmental disabilities who have other living arrangements might be offered the vaccine.

New Language On Support Persons In Hospitals

In a separate health-related development, DOH has put in place a COVID-19 emergency regulation which says hospitals “shall not unreasonably deny entry to support persons of an individual with a disability as defined by the Americans With Disabilities Act of 1990.”

The regulation says hospitals must provide accommodations to patients with disabilities so that they may be accompanied by as many as two support persons who can facilitate communication with hospital staff and ensure equal access to treatment and informed consent. Notices about the regulations must be posted in English and a minimum of three other languages commonly used by patients and staff in conspicuous places in the hospitals, along with a DOH telephone number to call with concerns.

Disability Rights Rhode Island (DRRI) led a led a push for the new regulation, which previously had been expressed as a matter of policy and unevenly adopted by hospitals, resulting in dozens of complaints that continued throughout 2020.

Morna Murray, executive director of DRRI, said, “We hope this language will go a long way toward educating everyone about the rights of individuals with disabilities to access their own health care.That is what having an essential support person is all about.”

“We will be monitoring the situation and are cautiously hopeful that this more rigorous regulatory language will be consistently implemented,” Murray said in a statement.

Access to COVID-19 vaccine remains another hurdle for advocates of adults with developmental disabilities in Rhode Island and throughout the country.

The American Academy of Developmental Medicine and Dentistry (AADMD) and other organizations have cited research highlighting COVID risks for adults with developmental disabilities, who as a group tend to have a higher rate of underlying medical conditions than the general public and are less likely to be able to follow mask-wearing and personal hygiene guidelines.

In December, the federal Centers for Disease Control (CDC) put Down syndrome on the list of those who should be vaccinated. But the CDC also says that “most people with developmental or behavioral disorders are not naturally at higher risk for becoming infected with or having severe illness from COVID-19,” a statement highlighted by Tomasulo, the DOH spokeswoman.

She said that the federal Advisory Committee on Immunization Practices (ACIP) makes recommendations to the CDC for the entire nation, while Rhode Island’s Vaccine Advisory Subcommittee “reviews these recommendations and determines how best to apply them to Rhode Island’s unique demography.

She offered two links for comparing the CDC recommendations for vaccine prioritization and the DOH Phase 1 plan:

• For the CDC

• For DOH

Tomasulo continued: “We want all Rhode Islanders who want to be vaccinated to get vaccinated. However, our supply is limited. Our Phase 1 priorities are to ensure that our healthcare infrastructure is able to continue to respond to the COVID-19 pandemic, and to protect those most at risk in long-term care facilities. As supply allows, we move on to other priority populations.”

Within Phase 1, one group may start receiving the vaccine before a previous group is completed, depending on the vaccine supply and the resources to administer it, she said.

Federal Judge Orders RI DD System Overhaul, $7 Worker Pay Hikes By 2024

By Gina Macris

Chief Judge John J. McConnell, Jr. of the U.S. District Court has tightened his reins on Rhode Island’s developmental disability system in an order that gives the state two and a half years to raise the hourly wages of direct care workers nearly $7, to $20 an hour, as part of a sweeping overhaul to comply with the Integration Mandate of the Americans With Disabilities Act.

Through its budget, the state controls the parameters of wages for front-line caregivers, who make an average of $13.18 an hour working for some three dozen private agencies under license from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

McConnell’s order, issued Jan. 6, distills recent recommendations of an independent court monitor, who said that Rhode Island cannot fully comply with a 2014 civil rights decree unless it overhauls its entire developmental disabilities system and increases funding. The civil rights consent decree says federal oversight is to expire June 30, 2024, but only if corrections of civil rights violations have been in place for at least a year.

Low front-line worker pay is widely regarded as the biggest weakness of the state’s developmental disability system. Provider agencies, as well as those independently coordinating their own services or the services of loved ones, have found it increasingly difficult to recruit and retain staff, who often can make more in fast food restaurants and retail stores, or at an Amazon distribution center. The staffing situation has only been exacerbated by the COVId-19 pandemic in the last year.

With the 2024 deadline in mind, McConnell’s order gives the state about six months to develop a three-year budget plan that will subsequently reach the $20 hourly worker rate. That pay increase would be effective in the 2024 fiscal year, which begins July 1, 2023.

The budget plan also must provide:

• Proportional wage increases for other categories of support staff, like job developers and supervisors

• Increased funding to address the costs of moving from a segregated system of care to one that integrates adults with developmental disabilities in their communities for work and leisure time.

• A per-capita amount for technology. Mobile phones and other hardware would provide internet connectivity still inaccessible to many adults with developmental disabilities as well as provide other kinds of assistance, depending on individual needs.

• Increased funding for transportation, found to be a barrier for many in getting to work or attending community events.

• Increased funding for the individualized planning that is supposed to drive purposeful services designed to help people lead meaningful lives.

Other than the direct care wages, McConnell’s order specified no dollar amounts for the three-year fiscal plan, which he said must be completed before the next fiscal year’s budget is finalized. (Plans aside, the General Assembly can only authorize funding one year at a time.)

The judge said the amounts must be negotiated between state officials and representatives of the community, including “individuals with intellectual and developmental disabilities, families, organizations that provide services and supports, and other stakeholders.”

And beginning this year, McConnell said, the legislative and executive branches must take into account the developmental disabilities caseload in calculating its public assistance obligations in the semi-annual Caseload Estimating Conference, which occurs in May and November in conjunction with the Revenue Estimating Conference. The costs of the developmental disabilities services historically have been omitted from caseload estimating conferences, which are used by the executive and legislative branches in annual budget planning.

In addition, the judge’s order said the state has until June to complete the revision of “all aspects of the developmental disabilities and funding system,” a reference to basic assumptions and regulations that for the last decade have been designed to promote group or congregate care. That effort has been underway since last July. Its parameters are already subject to a separate court order.

Since 2016, state officials have strived to provide pilot programs to support regular employment and increase community activities for adults with developmental disabilities, but it has become increasingly clear that the existing level of funding and the associated reimbursement rules for private service providers will not support system-wide change.

A full discussion of the issues reflected in the judge’s order are contained in a recent fiscal analysis submitted to the court by the court monitor.

Advocates Call For Vaccination of High-Risk DD Population And Caregivers

By Gina Macris

While there is growing research that COVID-19 puts people with developmental disabilities at a higher risk for serious illness or death than virtually any other compromised group, Rhode Island’s disability rights advocates remain uncertain whether the state will follow through on intentions to include this population in the initial vaccination phase.

Since the pandemic hit Rhode Island last March, it has affected nearly 30 percent of adults with developmental disabilities living in group homes and an uncounted number of others with intellectual or developmental challenges living in other settings. A total of about 550 group home staff have tested positive for the virus.

On Dec. 28, the Centers for Disease Control (CDC) announced that it had added Down syndrome — one of the most common developmental disabilities — to the list of conditions that put people at risk from serious illness or death from COVID-19.

People with Down syndrome are at higher risk for early-onset dementia as well as congenital heart disease, obesity, gastrointestinal disorders, and other chronic medical conditions.

On Jan. 8, the chair of the Rhode Island Developmental Disabilities Nurses Association (RIDDNA), wrote to the state’s public health epidemiologist, as well as coordinators for vaccine distribution, seeking confirmation that Phase 1 vaccinations, now underway, will include adults with developmental disabilities and the nurses and direct care staff who work with them.

Others are also pressing for similar assurances from officials of the Department of Health (DOH), including the health department’s counterparts at the state Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH) and the Community Provider Network of Rhode Island (CPNRI), a trade association of private service agencies operating group homes and offering daytime services to adults with developmental disabilities.

Tina Spears, CPNRI’s executive director, said initial advice from DOH was that adults with developmental disabilities are to be prioritized for vaccination in the ongoing Phase 1 distribution.

At the same time, this population does not appear on the patient list of the CVS-Walgreen’s partnership assigned by DOH to handle long-term care vaccinations, Spears said.

She said state officials need to “step up” and make the Phase 1 designation explicit.

The DOH COVID-19 portal says Phase 1 includes “long-term care facility staff and residents” but does not specifically mention adults with developmental disabilities. As examples of long-term care settings, DOH lists “group homes for individuals primarily 65 and older, assisted living, (and) elderly housing with residential services.”

Spears, meanwhile, said that she considers anyone eligible for developmental disability services from BHDDH to be receiving long-term care, whether in a residential setting or during the day in the community.

Fournier, the chair of the nurses’ group, highlighted the conclusions of research that has shown adults with developmental disabilities have greater incidences of the same underlying chronic medical conditions that have already been recognized as risk factors in non-disabled adults. These underlying conditions include heart disease, diabetes, various cancers, and asthma, as well as obesity and seizure activity.

Fournier cited joint recommendations of the American Academy of Developmental Medicine and Dentistry (AADMD) and a coalition of more than a dozen nationwide disability rights organizations that vaccine programs prioritize adults with developmental disabilities and all those who care for them, whether paid caregivers or unpaid family members.

Those living and working in group homes and other congregate care settings should be considered at the same risk as patients and staffs of nursing homes, according to a joint position paper issued by the AADMD and the disability rights groups.

Several research studies analyzing COVID-19 cases indicate that that those with intellectual or developmental challenges are more likely to die from COVID-19 than most, if not all, risk groups. They include an case analysis of privately-insured COVID-19 patients completed in November ty the nonprofit FAIR Health in conjunction with the John Hopkins School of Medicine.

Only 10 states, none of them in New England, have explicitly prioritized adults with developmental disabilities in their vaccination programs, according to the American Network of Community Options and Resources (ANCOR).

In Rhode Island, Fournier’s letter to public health epidemiologist Genevieve Caron pointed out that home care nurses have been receiving the vaccine, but nurses who work with the developmental disabilities population also work in home settings and have not been identified as vaccine-eligible.  

DOH did not immediately respond to a request for comment.

As of Jan. 6, a total of 351 of 1,212 residents in congregate care had tested positive for COVID-19 since the counting began last spring, according to figures compiled by state officials and obtained by Developmental Disability News.

The virus has affected a total of 214 group homes – all but 77 facilities in the privately-run system under license from the state, according to these figures.

A total of 14 group home residents and staff members have died.

In November, BHDDH had reported 12 deaths, including 9 group home residents and 3 staff members, but more recently, BHDDH lawyers, through a spokesman, declined to say whether the two most recent deaths were staff members or residents, They cited patient privacy concerns.

In its most recent update on COVID -19 on Jan. 8, BHDDH officials acknowledged they have received many inquiries about vaccination from the developmental disabilities community.

In a statement, officials said:

“We believe that all at-risk individuals, providers, and staff should be vaccinated and we have strongly and repeatedly advocated for that – however it is a challenge with a very limited supply of vaccine at this time. We expect that as more pharmaceutical firms get their vaccines approved, the timetable will become more generous. As soon as vaccinations dates become available, we will make information available.”

A global vaccine tracker maintained by Bloomberg News shows that Rhode Island has administered 2.98 per 100 people, for a total of 32,000 injections, or 43.7 percent of the state’s total current supply of 72,000 units. The tracker shows that 1,798 persons have received a second dose.

$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.

RI Advocates Seek Executive Order To Ensure Patient Rights Of Disabled

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

John J. McConnell , Jr.

By Gina Macris

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

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

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

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

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

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

McConnell said he saw “two levels of crisis:”

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

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

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

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

Cooperative Solution Preferred

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

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

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

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

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

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

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

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

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

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

Effects Of Pandemic “Unrelenting”

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

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

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

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

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

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

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

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

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

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

Spears Highlights Below-Market Funding

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

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

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

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

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

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

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

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

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

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

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

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

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

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

McConnell replied to Jones:

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

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

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

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

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

By Gina Macris

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

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

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

Brian Gosselin

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

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

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

Louis DiPalma

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Court To Hear Plan To Shore Up RI DD Providers

By Gina Macris

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

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

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

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

• More people are sick

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

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

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

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

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

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

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

Source: A. Anthony Antosh, Court Monitor

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

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

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

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

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

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

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

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

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

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

By Gina Macris

(This article was updated Nov. 18)

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

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

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

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

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

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

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

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

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

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

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

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

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

By Gina Macris

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

A. Anthony Antosh

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

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

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

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

John J. McConnell, Jr.

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

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

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

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

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

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

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

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

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

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

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

Monitor’s Budget For Reform Coming “Soon”

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

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

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

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

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

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

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

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

Family Hesitation About Integration

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Other groups would address specific plans for:

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

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

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

• enhancing the use of technology as a support strategy

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

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

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

Photos by Anne Peters

Stay Calm And Plan Your Vote

By Gina Macris

There are no excuses for failing to vote by Nov. 3.

That’s what my four-footed friend Ray told me after he stole my mail ballot application from the kitchen counter and pawed open the screen door for a jaunt around the house, with me trailing behind.

Before he dropped the envelope in favor of a carrot – Ray loves his vegetables –he had eaten enough of the application to void it. But no worries. I just printed another one from Rhode Island’s Voter Information website.

On Tuesday morning, it landed at my town’s Board of Canvassers.

That’s all there is to it. Print it. Fill it out. Put on a mask. Drop it off.

Any registered Rhode Island voter may request an absentee ballot for no particular reason other than being uncertain whether he or she will be able to get to the polls Nov. 3, or earlier.

Registered voters have until Oct. 13 at 4 pm – still plenty of time - to get the application to their local Board of Canvassers. Completed ballots must arrive at the Board of Elections by Nov. 3, Election Day.

For the first time, Rhode Island will allow early in-person voting at local boards of canvassers beginning Oct. 14. The Secretary of State’s Office has an online guide, here.

People with disabilities may have assistants help them with the logistics of voting.

On Oct. 8 at 6 p.m., Advocates in Action, the non-profit organization which aims to educate adults with developmental disabilities to advocate for themselves, will hold a step-by-step virtual presentation on voting to give prospective voters confidence about going through the process.

“Your voice and your vote matter!” say organizers. Those interested in the Advocates In Action presentation are asked to pre-register for the meeting here.

Disability Rights Rhode Island (DRRI), meanwhile, has posted a link to a video from Rooted in Rights that explains the various ways voters with disabilities may get help.

DRRI stands ready to help people who have questions about their voting rights or how to vote, who believe their voting rights have been violated, or who want to request a group training about voting rights. Contact DRRI at 401-831-3150 or 1-800-733-5332. For TTY call 401-831-5335. Live assistance is available during business hours and while polls are open on Nov. 3. Messages to the 24-hour answering service will be returned in a day’s time, according to the DRRI website.

As for me, I’m just staying alert to Ray’s next move while I wait for my absentee ballot to arrive.