RI DD Providers Agree to $15.75 Hourly Rate; Hike May Not Address Worker Shortage

By Gina Macris

Private agencies serving adults with developmental disabilities have asked for an additional $31 million in the next Rhode Island state budget to offer workers about $17.50 an hour – a bump of more than $4 on the current starting hourly pay.

The $31 million in state revenue would generate an additional $48 million in federal funds under the Medicaid program, for a total of $79 million. The private service system is currently funded at $260.4 million in federal-state Medicaid money.

A trade association of providers says its members need a significant wage hike to begin filling a huge hole in the workforce needed to implement a 2014 consent decree aimed at correcting violations of the civil rights of adults with developmental disabilities.

The state, meanwhile, has offered an estimated hourly pay of $15.75 for direct care workers.

Providers have agreed to the state’s figure, a bump of $2.57 over the current average starting pay of $13.18, as well as to an hourly rate of $21.99 for supervisory personnel. It was not immediately clear how much of a raise the supervisors are to receive.

But the providers, represented by the Community Provider Network of Rhode Island, say they are concerned that the state’s proposal will have little, if any, effect on their attempts to chip away at the worker shortage.

These latest developments in negotiations involving state officials, providers, families running independent support programs for loved ones, and other stakeholders emerged primarily in a budget briefing for the House Finance Committee June 3 and in a separate June 4 report to the federal court from an independent monitor.

The monitor, A. Anthony Antosh, said the consent decree requires the state not only to make certain reforms but to maintain the capacity to carry them out on a continuing basis. The worker shortage, the equivalent of about 1,081 full time positions, means the state lacks that capacity, Antosh said.

FERLAND

In the June 3 budget briefing, the House Fiscal Advisor, Sharon Reynolds Ferland, told the finance committee about the providers’ $31 million request but offered few details as she described the many moving parts of the state’s overall spending plan for Fiscal 2022, which begins July 1, in less than four weeks.

She said that the $31 million was not a negotiated figure or “anything other than what was asked” by provider agencies

Ferland told the finance committee that the proposed privatization of the state-run group home system is off the table, evaporating an estimated $20 million in savings that the administration had written into the budget.

The privatization depended on the existing network of private agencies – the same ones with the 1,000 worker shortage - to take on some 116 residents of the state-run group home system, without an increase in private-sector pay.

Ferland said that “was not something they (private providers) could support, or handle.”

The state pays its group home workers about $5 more an hour than it allows for frontline caregivers in privately-run homes.

In offering wage increases, the state withdrew all funds that previously had been earmarked for transition and transformation of the service system from a model based on segregated care to one that puts people in their communities.

Antosh

Antosh was not pleased, saying that “it is critical that the State provide transformation and innovation funds in FY 2022,” the fiscal year that begins July 1.

Antosh noted in several places in the report that there has been no discussion of wages or system reform for 2023 or 2024 – the last two years of the consent decree.

He recommended that the state meet with providers and other stakeholders once a week until they reach an agreement on wages for 2022 and 2023 and complete a comprehensive review of the rate structure that governs reimbursement to private providers.

The current rate structure is a dizzying array of dozens of figures and codes, with some rates presented in 15-minute increments of service for each client in the care of a single staff person. For example, providers must enter 20 fifteen-minute service units to get paid for one staffer working with five persons for an hour during the day, according to the current reimbursement methodology.

The state has agreed in principle that the rate structure should be simplified and initially told Antosh it would be done during the next fiscal year, the monitor said. More recently, he said, the state informed him the new rate structure would not be fully fleshed out until 2024.

He recommended that the new rate structure be completed in time for the governor to include it in his budget proposal for the fiscal year that begins July 1, 2023.

Often in the last year, Antosh’s recommendations to Judge McConnell have been transformed into court orders, with the judge becoming increasingly specific on the way he wants the state to address particular issues.

McConnell

For example, to attract high-quality job applicants, McConnell issued an order in January saying the state must increase wages to $20 an hour by 2024. Shortly after that, legislative leaders withdrew their representatives from ongoing talks among officials of the executive branch, the private providers, family members, individuals who receive services, and other advocates.

Spokesmen for the House and Senate said at the time that the General Assembly would deal with compliance issues as part of the legislative process.

Governor McKee’s initial budget proposal included no pay increase for direct care workers or supervisors.

And in a budget hearing June 2 for members of the finance committee’s human services subcommittee, Ferland said some of the court orders, like the one dealing with wages, appear to go “beyond” the consent decree. She did not explain the worker shortage or any other context for McConnell’s order on wages.

The instability of the labor force existed well before the pandemic. According to a detailed analysis commissioned by service providers, before the pandemic the private system had filled the equivalent of 2088 of the 2845 fulltime positions it needed to serve people in the community as the consent decree required, leaving 757 vacancies.

COVID made the situation worse, with the number of vacancies increasing by 324, for a total of 1,081, the consultants, the Approach Group, told Judge McConnell in a report delivered in April.

As a means of ensuring consistent funding on the basis of the latest data available, McConnell has ordered that the developmental disabilities caseload be incorporated into the Caseload Estimating Conference by November of this year.

The twice-yearly caseload estimating and revenue estimating conferences are used in budget preparations both by the executive and legislative branches.

The governor has proposed that the developmental disabilities caseload into the Caseload Estimating Conference beginning in November, 2022.

But in his latest report, Antosh asked the judge to remind the state that the deadline for participation in November, 2021 was “a court order, not a request.” A spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals said recently that the timing of the switch to the Caseload Estimating Conference was “under review.”

BHDDH has not explained exactly why the change could not be made in 2021 in accordance with the court order.

Another change from the court’s expectations is that there is no funding in the budget to switch from quarterly to annual budget authorizations for each person who receives services, according to Ferland’s June 2 presentation to the human services subcommittee of the finance committee.

The quarterly authorizations, applied to the existing fee-for-service model, mean that all clients must have 100 percent participation for all the funding to be used – a virtual impossibility. Because funding cannot be transferred from one quarter to another, the state counts on saving about $6.7 million a year from program absences.

The governor’s initial proposal for Fiscal 2022 added that money so that the funding matched the annual authorization for an entire year. Providers, those receiving services, and their families have long complained that the quarterly authorizations do not allow them any flexibility in planning individualized programs.

Read the monitor’s latest report.

Read the consultants’ report on the worker shortage.

Former Hospital CEO Tapped To Lead RI BHDDH

By Gina Macris

Richard Charest, former president and CEO of Landmark Medical Center and currently a consultant to the troubled Eleanor Slater Hospital, has been nominated by Rhode Island Governor Dan McKee to lead the public hospital’s parent agency, the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

McKee and Womazetta Jones, Secretary of Health and Human Services, made the announcement May 26, saying, "We are confident that Richard's decades of experience in the health care field have prepared him to lead this department, which provides vital services and support to some of Rhode Island’s most vulnerable populations."

McKee has submitted Charest’s name to the Senate for its advice and consent. “We are pleased to have recruited a strong candidate who can help improve departmental policy, operations, staffing and patient care,” McKee said in a statement.

Secretary Jones, meanwhile, said that “BHDDH, particularly Eleanor Slater Hospital, has many urgent needs that will benefit from Richard’s leadership and healthcare and hospital management experience.”

“Those who rely on BHDDH for their behavioral and medical needs deserve the best care possible,” she said.

Neither Jones nor McKee mentioned the needs of adults with developmental disabilities in their statement. Roughly two thirds of the $486 million BHDDH budget is allocated to the Division of Developmental Disabilities, which is grappling with a workforce crisis and an approaching deadline for complying with a long-standing civil rights decree.

Charest worked his way up the ladder at Landmark Medical Center, where he “successfully led hospital operations and finances through receivership, reassured the community and engaged employees and medical staff to ensure uninterrupted high-quality care,” according to the statement from McKee and Jones. Charest also has served as President and CEO of the Rehabilitation Hospital of Rhode Island.

He has an undergraduate degree in pharmacy from Northeastern University and an MBA in Health Care Administration from Bryant University.

Federal Judge Presses RI To Raise DD Worker Wages In Wake Of Severe Shortage Of Services

By Gina Macris

The U.S. District Court has put pressure on the state of Rhode Island to increase the pay of front-line workers who support adults with developmental disabilities in the budget beginning July 1, a year earlier than the disability service agency had planned.

Indeed, two human services officials have recommended that privately-employed front-line workers serving adults with developmental disabilities get $15 an hour – a hike of nearly $2 –in light of a new report that the post-pandemic workforce will fall far short of the number needed for complying with a 2014 civil rights decree.

On April 28, the day after hearing about the worker deficit, Chief Judge John J. McConnell, Jr. issued an order saying the rates must be “reasonably comparable” with those paid in the state’s own group home system and in neighboring Massachusetts and Connecticut.

Massachusetts and Connecticut pay $15.75 and $15.78, respectively.

The state pays its own group home workers an average of $18.46 an hour and sets rates for private providers that allow them to pay front-line employees an average of $13.18 – about five dollars less than the workers make in the state-run group homes, according to figures provided to McConnell.

Moreover, the budget now under consideration by the General Assembly assumes the private sector will absorb more than 100 residents of state-run group homes, without any rate increases.

COVID Exacerbated Worker Shortage

A report submitted to the court April 27 indicated private providers simply don’t have the staff to take on any new clients, let alone meet the demands of the 2014 consent decree by the time it expires in 2024.

The report, compiled by the same consultants the state used for a $1.1 million analysis completed last July, started with the premise that a “stable and skilled workforce is a necessary pre-condition” to implementing changes required by the consent decree.

The consultants concluded that at the end of 2020, the privately-operated system had 1,764 direct care workers, only 62 percent of the 2,845 full time employees it needed to ensure that adults with intellectual and developmental challenges have access to jobs and other activities in their communities, as required by the consent decree. That’s a gap of 1,081 full-time positions.

Currently, the system is staffed at 62 percent of the capacity it would have if all positions were filled, said the consultants. Except for those living in group homes, eligible adults at the end of 2020 generally received less than half the services they got before the pandemic. For those living in family homes, the reduction was calculated at 71 percent, according to the consultants.

The consultants previously worked for the New England States Consortium Systems Organization (NESCSO,) a non-profit regional organization under contract to the Department of Behavioral Healthcare, Developmental Disabilities and Hospital (BHDDH) to analyze the developmental disabilities system top-to-bottom – but provide no recommendations.

The latest report, presented to McConnell April 27, was commissioned by the Community Provider Network of Rhode Island, (CPNRI), a trade association.

CPNRI seeks an hourly rate of $17.50 an hour for front-line workers and proportional increases for supervisory and other personnel. CPNRI’s executive director, Tina Spears, told McConnell during the court hearing that the proposed $15 hourly rate would only address direct care worker pay.

The pay hike would cost nearly $26.9 million and would require legislative approval in the next two months if the change were to take effect in the budget beginning July 1.

Will The Governor Amend Budget Plan?

During the April 27 court hearing, an independent court monitor in the case, A. Anthony Antosh, said he understood a new budget article is to be drafted in early May.

Neither the office of Gov. Dan McKee nor BHDDH have responded to questions about any top-level support of a $26.9 million expenditure to raise worker pay or how they would fund it.

The Director of the Developmental Disabilities, Kevin Savage, was one of the two officials recommending the $15 hourly wage. The other was Kayleigh Fischer, Director of Budget and Finance at the Executive Office of Health and Human Services.

In January, McConnell raised eyebrows at the State House when he ordered the state to raise direct care wages to $20 an hour by 2024.

Both the House and Senate leadership withdrew their representatives from talks organized by the court monitor about consent decree reforms, which must be up and running by July 1, 2023, a year before consent decree is set to expire.

Instead, legislative spokesmen said at the time, the respective chambers would consider reforms in the context of the budget process.

But with only two months left until the start of the next fiscal year, that process has been silent on developmental disability reform.

McConnell Tightens The Reins

The apparent passivity of the legislative process, combined with the fresh data showing that non-compliance with the consent decree has accelerated during the pandemic, apparently prompted McConnell to tighten the reins in his oversight of the case.

He has been adamant that the state cannot meet the integration requirement at the heart of the consent decree without beginning implementation of a three-year plan in the next budget.

The current system, now ten years old, comes with a reimbursement system built on congregate care – a violation of the Integration Mandate of the Americans With Disabilities Act.

While BHDDH officials had said they wanted to tackle structural reforms first, McConnell’s latest order accepts the position of providers that they cannot get their clients into the community unless they first have an adequately paid, stable workforce.

Roughly one in three workers leave within a year, and one in five jobs goes begging, with the majority of supervisory staff frequently filling in for front-line workers, according to various reports.

McConnell’s latest order says the state must continue to meet in person or by teleconference with providers and at least one representative of families who direct their own programs to address the immediate fiscal and administrative issues in several court orders dating back to last July. The judge wants a progress report by the end of May, he said.

The annual state budget typically is finalized in early June for the next fiscal year, but McConnell said state officials should continue talking with providers and at least one family representative to prepare for the following two fiscal cycles leading up to the deadline for full compliance with the consent decree in 2024.

In addition, McConnell’s order said the developmental disability caseload should be part of the twice-yearly process the governor and the General Assembly use to determine public assistance obligations beginning in November of this year. He said he will continue to look at job turnover and vacancy rates, as well as client participation rates, to determine the effect of the wages on the system.

Governor McKee’s budget proposal would have the developmental disability caseload become part of the twice-yearly meeting, the “Caseload Estimating Conference,” in November, 2022.

The caseload and revenue-estimating conferences in May and November are considered critical tools in budget-planning.

RI EOHHS Secretary To Temporarily Run BHDDH

Womazetta Jones

By Gina Macris

Rhode Island’s chief health and human services executive, Womazetta Jones, will serve as interim director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and conduct a “thorough review” of the agency, Governor Daniel McKee announced April 9.

BHDDH has been beset by controversy over the discharge of some long-time patients of Eleanor Slater Hospital who, advocates say, have been left without the support they need in the community.

BHDDH officials have denied the reduction in patients is a cost-cutting measure. The state may have to compensate for tens of millions of dollars of federal Medicaid funding for Eleanor Slater Hospital which it had counted on to balance the BHDDH budget until mid-2019.

Jones will continue her work as Executive Secretary of Health and Human Services while serving at BHDDH, according to McKee spokesman Matt Sheaff. That means she is expected to be hands-on at BHDDH while also overseeing three other agencies: the Departments of Health, Human Services, and Children, Youth and Families.

McKee said in a statement he wants Jones to make recommendations to him “on issues including, but not limited to, departmental policy, operations, staffing and quality standards for patient care.”

Jones is stepping in for A. Kathryn Power, whose resignation McKee announced April 5.

CPNRI Public Forum Monday To Shape Agenda For I/DD Advocacy

By Gina Macris

The Community Provider Network of Rhode Island (CPNRI) will host a virtual town hall Monday, April 12, on issues affecting affecting adults with intellectual and developmental disabilities and their families and advocates.

Registration is required to gain access to the Zoom event, which will run from 5:30 to 6:30 p.m. Register by clicking here.

Those who register will receive a confirmation email which will include a link to a story collection form where participants may submit personal stories about their experiences during the pandemic. The stories will help inform CPNRI conversations and upcoming advocacy efforts. CPNRI is a trade association representing about two dozen private agencies that serve adults with developmental disabilities.

Participants also may email questions@cpnri.org to submit questions or suggest topics for discussion during the meeting.

Power Resigns as RI BHDDH Director

By Gina Macris

A. Kathryn Power

A. Kathryn Power will leave the top post of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) April 9, about thirteen months after she was tapped by former Governor Gina Raimondo to stabilize an agency mired in the problems of the Eleanor Slater Hospital.

Her resignation comes in the middle of a controversy involving the Eleanor Slater Hospital and at a critical time in the implementation of a 2014 civil rights consent decree affecting adults with developmental disabilities. .

In a letter submitted to Gov. Daniel McKee March 28, Power attributed her resignation to a family member’s “recently diagnosed health issues.”

Power’s letter was released by McKee’s office April 5.

In a statement, a spokesman for the governor said, “BHDDH has a critical mission and it will be a priority for the McKee Administration to find a candidate to live up to its values providing high quality care and services for some of Rhode Island’s most vulnerable residents.

“We thank Director Power for her service on the state and federal level and wish her all the best,” the spokesman said in a statement.

In her letter of resignation, Power said she believed she helped “move the organization in the right direction to embrace a more aligned set of programs and services that are highly reflective of the least restricted environment, the most appropriate level of clinical care, and the strong themes of personal choice, a safe, stable living situation, and whole life self-management.”

The controversy at Eleanor Slater Hospital, which Power inherited from a previous administration, started out as a billing issue involving the Centers for Medicare and Medicaid Services that left the state liable for tens of millions of dollars for patients deemed ineligible for federal reimbursement.

The bureaucratic matter has escalated as BHDDH has discharged some Eleanor Slater Hospital patients into what mental health advocates allege are unsafe situations with inadequate safety nets.

Power has more than 30 years’ experience in the mental health field, including a decade-long tenure as the director of BHDDH, from 1993 to 2003, when she left to join the federal government.

She is a former region one administrator for the federal Substance Abuse and Mental Health Services Administration (SAMHSA).

Power said that, just as in her previous tenure at BHDDH, “my priority has been, first and foremost, the well-being and sensitive care of individuals with behavioral health conditions, intellectual/developmental disabilities, and hospital patients.”

In offhand remarks shortly after former Governor Raimondo nominated her to return to BHDDH as second time, Power indicated she had not sought the post but wished to respond to the governor’s call.

BHDDH is entering a critical period of change to services for adults with developmental disabilities as it prepares to comply during the next three years to a 2014 federal civil rights consent decree that calls for the integration of those with intellectual challenges in their communities.

RI DD Budget Emphasizes Quality Improvement, But Services Remain Scarce

By Gina Macris

April 9 marks the beginning of the eighth year of a ten-year period during which Rhode Island has pledged to comply with a federal mandate ensuring that adults with developmental disabilities enjoy meaningful lives in their communities - just like everyone else.

In other words, Rhode Island has three more years to prove to the U.S. Department of Justice that the state no longer violates the Integration Mandate of the Americans With Disabilities Act and has done everything it agreed to do under a federal consent decree signed in April of 2014.

In budgetary terms, the state has just three more fiscal years to accomplish a complete and potentially costly overhaul of services for about 4000 adults with intellectual and deveopmental challenges.

With this timetable in mind, individuals with developmental disabilities, their families, advocates, the private agencies the state relies on to provide services, and a federal judge are all focused on Governor Daniel McKee’s budget proposal for the fiscal year beginning July 1, year eight of the march toward compliance.

Daniel McKee

McKee’s overall state budget recommendation, which allocates $294 million in state and federal funds for developmental disability services, is now in the hands of the state legislature.

Those associated with the developmental disability community hoped to find a higher allocation, but instead the governor’s budget called for an unexpected $10-million reduction in overall spending. Even more puzzling for many, including individuals and families who have gone a year with few, if any, services, was the absence of an hourly wage hike to attract workers back into the field.

The U.S. District Court, which is supervising the state’s effort to comply with the consent decree, has emphasized that a poorly-paid, unstable workforce and inadequate state reimbursement rates to private providers are the biggest issues standing in the way of compliance.

The budget’s $10-million reduction reflects a decline in the caseload, the state developmental disabilities director, Kevin Savage, told a public forum March 22.

Developmental disabilities officials have not produced any caseload figures to back up that claim, and publicly available data indicate the number of people eligible for services has increased and will continue to do so.

Kevin Savage

The governor’s budget also includes a $15 million set-aside for innovation and quality improvement efforts for the first of the final three years of the state’s compliance effort, indicating that officials are prioritizing administrative reforms required by the consent decree.

For example, some of the $15 million would be used to develop an alternate to the existing fee-for-service reimbursement model, according to officials of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

BHDDH officials also say they plan to address the wage issue in the fiscal year beginning July 1, 2022. They say that timetable could speed up if the state uses federal COVID-19 relief money from the American Rescue Plan, which was enacted just a few days before Governor McKee submitted his budget to the General Assembly.

“Investments in the DD system cannot only about the sufficiency of funding for the system,” BHDDH officials said in a statement issued March 23. “It must also be about how funds in the system are spent and how to use money to drive better outcomes for adults with intellectual and developmental disabilities,” they said.

Judge McConnell

The state’s timetable for addressing the issue of low wages would arguably cut it very close for achieving compliance with the consent decree, given the definition of compliance the U.S. Department of Justice has presented before Chief Judge John J. McConnell, Jr. of the U.S. District Court.

DOJ lawyers have said that full or “substantial” compliance means that all the required changes have been up and running smoothly for at least a year before a particular agreement is set to expire.

In this case, Rhode Island will have to have all the required changes up and running smoothly by July 1, 2023 for the state to achieve compliance by June 30, 2024.

BHDDH officials have aimed at completing implementation by December, 2022, giving them just six months to fine tune everything before the clock starts ticking on that critical final year. The consent decree has provisions for extending federal oversight beyond 2024.

As for the here and now, the first court-ordered budget negotiation meeting on McKee’s $294 million proposal for the fiscal year beginning July 1 was scheduled for March 26 between providers, incuding the Community Provider Network of Rhode Island (CPNRI), and state officials.

Although Judge McConnell said in a court order in January that direct care worker wages should be raised to $20 an hour, he indicated in a subsequent order that he would accept solutions that are negotiated between the state, providers, and the developmental disabilities community.

McConnell wants the first of three monthly budget progress reports from the state on April 30 – in less than six weeks.

CPNRI is seeking increased reimbursement rates that will allow agencies to raise average direct care pay from $13.08 to $17.50 an hour. The starting rate for workers in the state-run group home system is about $18.50 an hour. BHDDH wants to shift responsibility for those in the state-run system to private service providers next year.

Tina Spears

“Improving capacity and ensuring access to services starts with a well-trained, adequately compensated staff,” Tina Spears, executive director of CPNRI, said in a statement.

“We cannot continue to have the turnover rates (an average of 30 percent a year) the vacancy rates (an average of one in 5 jobs unfilled) and bare bones supervisor and management structures and produce measured outcomes,” she said.

In theory, CPNRI can support reforms to emphasize quality and outcomes, “but until we are able to invest in our workforce, it is not something we can engage in or support,” Spears said.

In a statement March 23, BHDDH officials said Governor McKee’s budget proposal is intended to be a “starting point” in the overall budget process.

A total of $21 million will be dedicated to improving quality and access to services and relieving administrative burdens, according to BHDDH and the Office of Management and Budget. The breakdown includes:

• $7 million for financial incentives to providers to promote quality improvement efforts and improved access to services in communities.

• $4 million for an outcome-based payment methodology that would serve as an alternative to the fee-for-service model that is now in place

• $4 million for the Brown Policy Lab to provide technical assistance and detailed implementation plans to state officials, including funding for two fulltime positions.

In addition, there would be about $6.7 million made available for services that the state has been able to count as savings as part of its quarterly authorizations to individual consumers.

In current the fee-for-service system, any funds not used within a particular three-month period cannot be carried over to the next quarter. Because it’s difficult for individuals to have 100 percent attendance at all scheduled activities - even an afternoon reserved for a doctor’s appointment reduces reimbursement to providers - consumers end up leaving a certain amount of money unspent during a particular quarter.

The money appears in the budget, but through repeated experience, state officials have learned to count it as savings. That funding will now have to be made available as the state switches to annual funding authorization, which is required by the court to give consumers more flexibility in how they arrange their services.

BHDDH says the details of the other initiatives will be worked out with providers.

State officials say that providers can use part of the $4 million set aside for an alternate payment model to increase wages.

But Spears, the CPNRI director, said that option is unrealistic, because providers run the risk of the innovation grant ending without having continued funding to maintain the higher wages. And it’s not clear how many of the three dozen private providers would be able to participate in the development of the alternate payment model, she said.

Reacting to the state officials’ spending plans, Spears said, “At this point, CPNRI does not fully understand how this funding is structured, or how it would be deployed, “

She added: “CPNRI cannot support a budget proposal that does not fully fund services for individuals with intellectual/developmental disabilities, nor do we support diverting funds from service delivery to invest in organizational transformation.”

Friday Briefs:

Consent Decree Coordinator Named

• Aryana Huskey has been named Rhode Island’s next Consent Decree Coordinator. She will work with multiple agencies of state government to present a coordinated response to the U.S. District Court on the state’s compliance efforts with a 2014 Olmstead consent decree.
  

  Huskey will begin her new role March 29. She comes to the job “with an extensive background in health and human services, with experience in delivering direct services to vulnerable populations in Rhode Island, and a clinical background,” said Secretary Womazetta Jones and Claire Richards, executive counsel to governor, in an email to various state officials.

  Huskey will be a “significant asset to the team in working with the stakeholders involved in the Consent Decree,” Jones and Richards said. No other details were immediately available.

Save The Date - Mon. March 22

• A virtual public forum hosted by the Rhode Division of Developmental Disabilities will be Monday, March 22, from 3 to 4:30 pm, Advance registration is required with Advocates In Action, which is handling technology and logistics. Participants may register here.

RI Entrepreneur With Autism Competing in FedEx Contest

• Michael Coyne, owner of Red, White, & Brew Coffeehouse in North Smithfield and a graduate of the business development program of the Rhode Island Developmental Disabilities Council, is competing for a $50,000 grand prize in a nationwide small business contest sponsored by FedEx. Your vote will help get Michael to the next level!

  He is featured in an article in RI News Today, which also includes a link for voting.

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.