Judge Hails RI DD Progress But Calls For Critical Fixes

By Gina Macris 

For the first time since Rhode Island agreed a decade ago to correct civil rights violations affecting adults with developmental disabilities, people now routinely tell Court Monitor A. Anthony Antosh that their lives are better now than they were last year.

That’s a sign of success, said Chief Judge John J. McConnell, Jr. of the U.S. District Court in Rhode Island during a virtual hearing June 13 on the progress of a 2014 consent decree to reform past practices, such as restricting the work of people with disabilities to sheltered workshops.

Judge McConnell File Photo

Judge McConnell praised the “tremendous work” by the General Assembly and the state’s executive branch to dramatically increase funding for developmental disabilities, along with the roll-out of a community-facing system of services that went into effect July 1 of 2023.

At the same time, Judge McConnell said there are still some critical elements of the new system that must come into place for the state to fully implement the consent decree by the 2026 deadline, framing his compliments as “incentive to move forward, not to relax.”

Indeed, Judge McConnell plans to pick up the pace of his involvement in the short term. He gave lawyers for the state and the DOJ until July 12 to file plans for clearing the bottlenecks in the new system. Another court hearing is anticipated in August.

Antosh - file photo

Antosh, the monitor whom Judge McConnell appointed to track the progress of the reform effort, said in a recent report that he questions whether the state will be able to roll out high quality facilitation in time to meet the deadline for full implementation of the consent decree.

In looking at the positive steps the state has made, Judge McConnell contrasted the current status of the state’s efforts with the difficult period that followed signing of the consent agreement between the state and federal governments in 2014.

There were “years where the focus was lost and the state’s commitment was not obvious” for making constitutionally required changes to the service system, Judge McConnell said.

Among the progressive changes are increased community activity. About 84 percent of adults with developmental disabilities spend an average of nearly 16 hours a week participating in community activities, according to the most recent survey conducted by the Sherlock Center for Disabilities at Rhode Island College.

Transition Services Have Achieved Goals

For young people graduating from high school, coordination has improved between the local school districts, the state Department of Education and adult services, Antosh said.

The number of work experiences for high school students has increased and four of 14 who graduated in the last year went into paid employment, he said in a report. Antosh said the services that help young people make the transition to adulthood meet the criteria of the consent decree.

Although a workforce shortage among caregivers continues as part of a national phenomenon, the hike in wages for caregivers implemented last July means that Rhode Island has the lowest turnover rate in the nation in the field of direct care - at least in developmental disabilities, Antosh said. (Private-sector direct care workers in developmental disabilities make more than $22 an hour, on average. Beginning July 1, significant pay hikes will extend to other types of workers in community-based human services. Related state budget article here.)

Key Problems Remain

The remaining roadblocks to a fully realized program for people with developmental disabilities include:

• a lack of independent facilitators working with individuals to navigate the system

• an assessment process that does not yet capture all of a person’s needs

• new bureaucratic hurdles that prevent individuals from getting money from a new category of “flexible funding,” or “add-on” services.

The monitor’s biggest concern is that the state does not have independent facilitators in place to guide individuals through a new three-step assessment process and help them secure the necessary funding for a purposeful program of services.

These trained facilitators are critical in bringing all the pieces of a service system together in an individualized way to improve the lives of people with developmental disabilities, the monitor has said.

The state has budgeted nearly $2 million to hire 18 social workers to serve as facilitators in the next fiscal year, but the Director of the Division of Developmental Disabilities (DDD), Kevin Savage, said only two of them have begun working, as supervisors.

He said he shares “some of the monitor’s trepidation” about the facilitators. “The question is, are they going to be the right people,” Savage said. The facilitators will be funded through the Executive Office of Health and Human Services, not DDD.

The new three-step assessment process is not widely in place, Antosh said, and even when it is used, individuals do not understand how the more comprehensive sequence of questions and interviews is related to individual funding.

To fully comply with the consent decree, the state must get McConnell’s approval on the mathematical formula, or algorithm, that is used to translate needs for support services into individual budgets, according to one of Antosh’s recent reports.

The budgets must not serve to limit spending but to meet an individual’s needs and preferences, Antosh has emphasized.

When the new rate system and administrative structure was introduced last year, state officials said the more accurate assessment process would lead to a reduction in appeals of funding decisions. But the appeals continue.

The amount of money awarded on appeal is expected to be about $22 million in the current fiscal year, according to the May Caseload Estimating Conference. That projection is about $2,246,000 less than the last fiscal year. Last year’s $24.2 million was the highest awarded on appeal since 2015, when the amount reached $28 million, according to an email earlier this year from a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

As it is, participants have a difficult time accessing so-called “flex funding”, or add-on services, particularly employment-related supports, according to Antosh and Asst. U.S. Attorney Amy Romero, who represented the Justice Department. Romero said she knows former sheltered workshop employees who still haven’t seen the benefits of the consent decree in their lives, years after the workshops themselves have been shut down.

In May, the state reported that 348 persons had obtained add-on employment support, Antosh said, far below his expectations. The overall developmental disabilities caseload is about 4,300 people.

Individuals and families who direct their own services and have no links to provider agencies are at a heightened disadvantage in trying to get employment-related supports, Antosh and Romero said. About a quarter of the developmental disabilities caseload, or about 1,000 people, are in the “self-directed” category.

Antosh said individuals must not be forced to choose between between community activities and employment-related supports.

The monitor’s reports to the court give additional detail on clashes between the court’s intentions and the state’s interpretation of portions of the new service system.

The court intended that job coaching and job retention should be decided according to the needs of the individual, but those receiving services and their caregivers are being told there are time limits to these services, he said.

In March, Antosh wrote to the court that “the amount of hours of job coaching or job retention needed is unique to each individual.”

“This is an individual program decision, not a budgetary decision.” Antosh wrote in bold type in a report submitted in March.

The under-utilization of services is reflected in current spending, which is running about 17 percent under the original projections, said Brian Daniels, Director of the state Office of Management and Budget during the hearing before McConnell.

In reports to the court in recent months, Antosh said providers must file a new purchase order every time an add-on service occurs.

That means every time a participant goes to the gym with a caregiver, or goes to work with a job coach, a new purchase order must be filed for the transportation and the service of the caregiver.

And providers say that group home residents who stay home for whatever reason, including an inability to access add-on services, are funded at a lower annual residential rate now than they received a year ago. Even though their needs have not changed, they may have fewer staff at home. Residential services are not addressed by the consent decree.

Antosh, meanwhile, says he wants the state to simplify the bureaucracy around billing and reimbursements, echoing the complaint he had about the “administrative barriers” of the old system.

In addition, Antosh has said providers must be allowed to bill retroactively to July 1 of last year for “professional services,” which includes nursing, counseling, and some other services, because the state’s new billing system is not yet set up to accept those invoices.

Romero said the Justice Department is “cautiously optimistic” that the state will be able to comply with the consent decree in two years, but the DOJ remains concerned that money budgeted tor enhanced services, particularly employment-related supports, remains unused.

To read the monitor’s report dated June 10, 2024, click here

To read the monitor’s report dated March 25, 2024, click here

Medicaid Community Services Win Big in RI State Budget

Rep. Marvin Abney, D-Newport, House Finance Committee Chairman, Introduces Budget Bill on House Floor - RI CAPITOL TV IMAGE

By Gina Macris

(This article has been updated.)

The Rhode Island General Assembly has enacted a new state budget of $13.96 billion that emphasizes quality-of-life issues, from education to housing to healthcare. The Senate passed the budget early the morning of June 14 and Governor Dan McKee signed it June 17.

The budget includes an increase of nearly $200 million in federal-state Medicaid reimbursements to stabilize providers of social and human services in the private sector, putting them on a par with their counterparts in neighboring states.

The plan for the fiscal year beginning July 1 marks the largest-ever single year increase to the federal-state Medicaid program. It cleared the House June 7.

Nearly $160 million of the Medicaid increase responds to recommendations of the Office of the Health Insurance Commissioner. According to a spokesman for the House leadership, another $40 million in new Medicaid funding will go to private providers of services used by the state’s child welfare agency, which has been under fire by the U.S. Attorney for a lack of community services. More than half the total cost of the Medicaid increases is funded by the federal government.

The fiscal package represents a bipartisan effort that is “about people,” said House Finance Committee Chairman Marvin Abney when introducing the fiscal package on the House Floor June 7. The budget passed the House 69-5 and cleared the Senate Finance Committee unanimously.

“This is a budget that reaffirms our commitment to education, taking care of kids, (and) those who need us most,” Abney said. The budget helps “all Rhode Islanders improve their lives,” he said.

“We continue to face a housing shortage and pressure from inflation. These are not easy fixes, and the budget doesn’t pretend they are, but it does make historic investments,” Abney said. “The collaboration of fellow legislators, advocates, and our friends in the executive branch cannot be overstated,” he said.

One way or another, Medicaid impacts the lives of 320,000 Rhode islanders, said Senate Finance Committee Chairman Louis DiPalma, D-Middletown, as he introduced the budget to the Senate Finance Committee June 11.

The shift to a “people’s budget” has been fueled by more than a decade of advocacy, most prominently involving some 4,000 adults with developmental disabilities, who were hit with drastic Medicaid cuts in 2011 which advocates say led to a civil rights consent decree in 2014.

Despite the consent decree, it took a federal court order in 2021 to move the needle on Medicaid funding – but only for providers of developmental disabilities services. Other community human services, affecting children, those suffering from addiction, the elderly, and others, continued to stagnate, with waiting lists growing, particularly for infants and toddlers needing early intervention.

In 2022, providers of nearly every Medicaid-funded service in the state descended on the State House for an hours-long hearing before the Senate Finance Committee, telling legislators that the lack of Medicaid funding threatened to destabilize the state’s entire health care and social service system. Related article here.)

That year, the General Assembly passed legislation requiring the Office of the Health Insurance Commissioner (OHIC) to conduct a comprehensive review of fair market rates for all private community-based human and social services every two years. The first report, completed in September, 2023, called for about $160 million in new Medicaid funding, not including developmental disabilities, which had just adopted a new rate structure after a court-ordered rate review.

In January, Governor Dan McKee proposed slowing down the implementation, as well as future OHIC rate reviews, but the General Assembly has turned that approach aside. DiPalma, the architect of the 2022 law calling for biennial Medicaid rate reviews, said that fully funding the Health Insurance Commissioner’s recommendations was a “critical” issue.

Weeks before the House vote, the U.S. Attorney announced new civil rights allegations linked to a lack of Medicaid-funded community services, raising the possibility of a lawsuit or a new consent decree governing the state’s child welfare system – in addition to the separate, ongoing judicial oversight of developmental disabilities services, which has cost Rhode Island hundreds of millions of dollars over the last few years. The state’s Department of Children, Youth and Families (DCYF) is talking with federal officials about a settlement in the latest child welfare case.

In the meantime, the budget will add $21.9 million to DCYF to expand home-based programs, $5.4 million for adoption and foster care, more than $ 2 million for congregate care of children, $1.5 million for a rate-setting consultant, and other expenses totaling nearly $40 million in Medicaid funding, according to House Finance Committee notes.

The new civil rights allegations, announced by U.S. Attorney Zachary Cunha May 13, say 527 children have been hospitalized for months or even years unnecessarily for psychiatric conditions that should be treated long-term at home or in more home-like settings.

 The legal framework for the 2014 consent decree affecting adults with developmental disabilities and the latest complaint is the same: the Integration Mandate of the Americans With Disabilities Act. It says people with disabilities must have access to public services in the least restrictive environment that is therapeutically appropriate. The 1999 Olmstead decision by the U.S. Supreme Court re-affirmed that mandate, saying the least restrictive environment is presumed to be the community.

 In the case of the 2014 consent decree, federal oversight of the developmental disabilities system will continue until 2026.

Over the past year, the state has begun implementing a new rate model and administrative structure intended to help adults with developmental disabilities get jobs and participate in more community activities. A court-appointed monitor says that “much has changed,” but that the state must intensify its efforts if it is to achieve full compliance with the consent decree in the next two years.

Not all the new services promised by the state are actually available, and those that exist, like add-on employment services, are difficult to obtain, according to the monitor, A. Anthony Antosh.

The result: the Division of Developmental Disabilities is leaving money on the table. The House Finance Committee cut more than $38 million from the Governor’s original budget request for developmental disabilities in the next fiscal year, on the recommendation of the May Caseload Estimating Conference.

The governor had asked for nearly $462.4 million for privately-run developmental disabilities in Fiscal 2025, but the Caseload Estimating Conference recommended about $423.9 million.

Similarly, the budget cuts $39.6 million from the governor’s request of $442.8 million for privately-run services to close out the current fiscal year June 30. The Caseload Estimating Conference recommended $403.2 million.

(The recommendations do not include a separate state-run group home system for adults with developmental disabilities – not affected by the consent decree - which is funded at roughly $32.5 million a year.)

The Caseload Estimating Conference makes projections for developmental disabilities - and other Medicaid categories - based on current costs. But the court monitor, Antosh, says the numbers reflect problems with the implementation of the consent decree.

For example, agencies have been paying for professional services, like nursing, but haven’t been able to get reimbursements from the state because a new billing system cannot yet handle their submissions, he said in a report to the court. The agencies must be allowed to bill retroactively to capture those reimbursements, he said.

In a recent report, Antosh said a new process for building individual budgets based on a thoughtful, personalized three-step assessment process has not yet come together. The state also lacks the independent facilitators who are supposed to help eligible persons get the services they need, Antosh said.

The budget plan includes $1.9 million in the Executive Office of Health and Human Services for 18 state social workers to act as independent facilitators during the next fiscal year, while a statewide approach to conflict-free case management is developed for all Medicaid recipients of home and community-based services.

Antosh in recent months has submitted detailed reports to Chief Judge John J. McConnell, Jr. of the U.S. District Court, who will hear the case Thursday, June 13, at 11 a.m.

The public can access the remote hearing by following the instructions on the calendar page of the court here.

McKee: RI DD Services Need $510.6 Million

By Gina Macris

RI Governor’s FY 25 Budget Proposal-

In a budget plan largely driven by the federal court, Rhode Island Governor Dan McKee has proposed $510.6 million in overall developmental disabilities spending for the fiscal year beginning July 1, about $41.5 million more than the General Assembly enacted for the current fiscal year.

Roughly 55 percent, about $283.4 million, of the proposed developmental disabilities budget would be reimbursed by the the federal-state Medicaid program.

At the same time, McKee seeks to close a projected deficit of $28.3 million in the current budget of $469.1 million as the state tries to integrate adults with developmental disabilities into their communities to comply with a 2014 consent decree with the Department of Justice (DOJ).

Much of the shortfall reflects upward cost adjustments made by the Caseload Estimating Conference (CEC), a budget-planning panel which meets twice a year, advising the governor in November and the General Assembly in May.

McKee also would add $2.9 million to the current budget, and $1.1 million in the next one, for “conflict-free case management,” not only to adhere to Medicaid regulations but to comply with the consent decree. Almost all that funding would come from the federal government.

State social workers from the Division of Disabilities will be assigned to check in monthly with those receiving services and their families to determine if their needs are being met, according to a BHDDH spokesman.

It is not clear whether – or how - this arrangement meets the expectations of an independent court monitor overseeing the consent decree changes. The monitor, A. Anthony Antosh, hasn’t issued a report since last August. Antosh has called for “independent facilitators” to help each individual develop a purposeful program of services and to keep track of how the plan works out.

Developmental disabilities programs account for more than $7 out of every $10 spent at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which would get a total of $706.3 million in McKee’s proposal. McKee’s proposed budget for all state spending in the new fiscal year is nearly $13.7 billion.

The latest proposal represents nearly a third more funding for developmental disabilities than the $339.3 million the General Assembly approved just three years ago, in the spring of 2021.

Much of the investment, in recent years, has been used to hike wages for caregivers and their supervisors, for education and training, and for the development of innovative approaches to supporting adults with developmental disabilities.

In three steps since July, 2021, the state has raised the pay for direct care workers by about 49 percent, from $13.18 an hour to a minimum of $20 an hour, in keeping with orders from Chief Judge John J. McConnell of the U.S. District Court, who has been monitoring the state’s efforts to meet the requirements of the consent decree since 2016.

McConnell found that, apart from the impact of the Covid-19 pandemic, historically depressed wages had led to an exodus of workers that prevented the state from offering employment and other services in the community as promised in a 2014 consent decree.

Beginning last July, the $20 minimum hourly rate for workers has been wrapped into a new reimbursement system for private agencies intended to accurately evaluate the needs of individuals, allow them bigger spending limits to get employment and other supports, and to implement administrative changes promoting integration in the community.

The ultimate impact of higher funding on the lives of adults with developmental disabilities remains to be seen. A decade after the state adopted an “Employment First” policy as part of the consent decree, the governor’s figures say that 24.8 percent of the population protected by the consent decree is working in the community, far short of the target 73 percent.

In November, BHDDH told the CEC that private service providers still don’t have the number of workers they need to offer employment-related services and community-based supports for all who want them. A BHDDH report called the shortage “critical.”

 Still, the state’s eye-opening investment in historically underfunded services during the last few years has begun to show results. While a big staff shortage remains, private agencies are beginning to see improvement in their ability to attract new workers.

The recent pay hikes, along with support from a statewide workforce initiative, helped private providers add 274 direct support staff between January and September of 2023, BHDDH officials reported in November.

McKee’s proposal for Fiscal Year 2025, which begins this July, includes nearly $462.4 million in reimbursements to the three dozen private agencies, or subcontractors, who serve as the backbone of the service system the state relies on to carry out the requirements of the 2014 consent decree.

These reimbursements also cover the cost of one-person programs managed by so-called “self-directed” individuals or families. The number of self-directed programs has grown to more than a quarter of the caseload of about 4,000 persons, in part because of the staff shortage at private agencies. Individuals and families, however, report the same kinds of problems finding qualified caregivers as the agencies, especially when it comes to securing employment-related services.

A separate line in the budget would allocate $15.6 million for other costs related to private services, according to a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

These expenses include the salaries of state social workers and administrators assigned to clients of the private providers, as well as human resources support, building maintenance, information technology support, and contracts for electronic records and for education and training provided by the Sherlock Center at Rhode Island College, the spokesman said.

The state also maintains its own network of group homes, which McKee would fund with $32.6 million in the next fiscal year.

All together, these budget categories add up to nearly $510.6 million.

No additional wage increases are planned for the fiscal year beginning July 1, except for those who provide in-home services to adults with developmental disabilities and were included in a comprehensive Medicaid rate review conducted by the Office of the Health Insurance Commissioner (OHIC). For the in-home workers, the governor’s budget seeks about $844,000. The final OHIC report, issued last September, said that the developmental disabilities workforce will be part of the next rate review in two years.

RI Governor Seeks Tens of Millions More For DD To Expand Community Services

By Gina Macris

This article has been updated

Rhode Island Governor Dan McKee has more than doubled the hike he is seeking from the General Assembly for developmental disabilities services in the next fiscal year. The overall funding increase is intended to expand opportunities for people to participate in community activities and increase the direct care workforce by offering higher pay.

A consultant for the state alluded to the funding hike during an April 27 hearing before Chief Judge John J. McConnell Jr. of the U.S. District Court, who heard a progress report on the state’s implementation of a 2014 consent decree intended to integrate adults with developmental disabilities in their communities. The amount of the increase was not mentioned in court but appears in updated documents on the website of the state budget office.

McKee originally earmarked $30.8 million to raise the minimum wage for direct care workers from $18 to $20 an hour to comply with a court order. The raises were to be part of a $385 million spending limit for private developmental disabilities services for the fiscal year beginning July 1.

On April 17, the state budget office raised the set-aside for raises to $75 million, including about $33.9 million in state revenue and about $25.8 million from federal funds in the federal-state Medicaid program. The budget amendmentes the new total for the private developmental disabilities system to $429.5 million.

The dramatic hike in funding anticipates a significant policy change that will allow private service providers to bill at higher rates on the assumption that all activities will involve supports in the community and will require more intensive staffing than center-based care.

Maintaining a regular gym schedule, attending an art or dance class, meeting a someone for coffee or going shopping are all activities most people take for granted, but those with developmental disabilities often need help with transportation and other supports to make these things happen.

The shift to 100 percent community-based services would eliminate the practice of budgeting for 40 percent of each client’s time in a day care center, which requires less intensive staffing but doesn’t offer people individualized or purposeful choices. A group cooking class, for example, may not succeed in teaching skills enabling participants to cook more independently at home.

The so-called “60-40” split between community and center-based care has been criticized by an independent court monitor overseeing the consent decree, who said the state must do everything it can to promote integration in the community to fully comply with the agreement.

The state’s consultant in a court-ordered rate review of Rhode Island’s developmental disabilities system explained the change in approach to daytime services during the April 27 hearing before Judge McConnell.

Stephen Pawlowski, managing director of the Burns and Associates Division of Health Management Associates, (HMA-Burns), said those who want center-based care may still choose it.

The recommendations of the HMA-Burns rate review, as well as the money to go with them, will need General Assembly approval before they go into effect July 1.

Feds Want Results

During the hearing, the independent monitor, A. Anthony Antosh, and a Justice Department lawyer, Amy Romero, applauded the administrative efforts of the state in recent months.

At the same time, they warned that full compliance with the consent decree will depend on results – more adults with developmental disabilities holding jobs and more community connections. And the deadline for full compliance is only 14 months away, June 30, 2024.

Romero, an Assistant U.S. Attorney in Rhode Island, previously raised concerns about the state meeting the 2024 deadline.

In the latest hearing, she commended the state for its efforts in the rate review process, but she also said the state must bring a sense of urgency to the push for more employment – one of the chief goals of the consent decree.

In frequent meetings with adults with developmental disabilities, she said, “meeting somebody with a job is the exception.”

“There are a lot of people out there who want to work and are not working,” she said. “It’s a missed opportunity with the employers themselves.”

The rate review would make employment-related supports available to everyone as an add-on to individual basic budgets.

Under the current rules, employment-related supports come at the expense of something else in the basic budgets. As a result, the number of overall service hours are reduced, because services like job development and job coaching cost more than other categories of support.

Since the consent decree was signed in 2014, the General Assembly has periodically earmarked separate funding for pilot employment programs in the developmental disabilities budget that don’t require individuals to give up service hours. The most recent one ended a year ago, shortly after the chief of employment services in the Division of Developmental Disabilities (DDD) departed.

A new employment chief will start work May 8, according to a spokesman for the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Some adults with developmental disabilities have been able get around the restrictions of the basic budgets if they have a service provider who gets funding for job supports from the Department of Labor and Training, or if they can get help from the Office of Rehabilitation Services.

And some high school students with developmental disabilities have gone from internships to real jobs as they move on to adult developmental disability services, although they have been the exceptions.

A spokesman for the Rhode Island Department of Education (RIDE) told the monitor, Antosh, that the agency is helping school districts plan revisions to transition services to put a greater emphasis on job-seeking.

Assessment Issues Remain

During the hearing, Antosh brought up another piece of unfinished business that poses a challenge for the state; figuring out how to apply the new rate structure so that everyone approved for services gets the supports they need.

The shift to community-based day services, by itself, will not achieve that goal, because of the way the assessment of individual needs is currently linked to funding.

Antosh said he continues to hear from families who are concerned about the accuracy of the assessment in its existing form.

The algorithm – or mathematical formula – used to turn the scores from the assessment into individual funding “needs to change,” he said. The assessment itself was not designed as a funding tool, but the developer, the American Association of Intellectual and Developmental Disabilities (AAIDD), still allows many states to use it that way.

After Rhode Island began its rate review in early 2022, AAIDD announced it would spend the next year overhauling the assessment, called the Supports Intensity Scale (SIS).

The second edition of the SIS was not released until mid-March of this year, and the state won’t begin to use the revised assessment until June. After that, a sample of 600 assessments will be needed before officials can do the math in a systematic way to assign budgets.

With each assessment taking two to three hours per person, the process of collecting 600 sets of scores is expected to take about six months.

In addition, the way the second edition of the SIS is scored is substantially different than the first edition, said Pawlowski of HMA-Burns.

Heather Mincey, Assistant Director of DDD, said that going forward, the SIS will not be the only measure used to determine support needs.

The second edition of the SIS will come with supplemental questions to capture exceptional needs like behavioral and medical issues.

But Mincey said there will be an additional set of supplemental questions, as well as an interview with individuals and their families to determine if there is any support need the assessment missed.

Independent facilitators will work with the assessment results to help individuals and families plan a program of supports, and then the funding will be assigned.

Currently, the funding is assigned directly from the SIS scores, and services are planned to fit the budgets.

Antosh has said the existing approach does not allow for the individualization necessary to comply with the consent decree.

The individual facilitators, proposed by Antosh, would be trained in a “person-centered” approach that incorporates short-term and long-term goals into a purposeful program of services built around the preferences and needs of the individual involved.

The person-cantered approach is considered a “best practice” in developmental disabilities that preserves people’s right to lead regular lives in their communities in compliance with the Olmstead decision of the U.S. Supreme Court, which gives the consent decree its legal authority. The Olmstead decision reinforced the Integration Mandate of the Americans With Disabilities Act.

The facilitators for person-centered planning have not yet been hired.

Mincey said the state is working with the Sherlock Center on Disabilities at Rhode Island College to develop a job description for the facilitators. They would not be state employees.

Governor’s Budget Amendments

In separate budget amendments on April 17, the Governor asked the General Assembly for additional funding to pay for the technology needed for them to do their jobs.

It calls for an information technology contract totaling $250,00 for so-called “conflict-free case management” to be implemented by the facilitators. All but $25,000 would be federal funds.

Antosh also asked Mincey what the state is doing to improve communication with families, who will have to absorb a considerable breadth of new information to take advantage of new opportunities in developmental disability services.

She highlighted the eight new positions being added to the staff of the Division of Developmental Disabilities who will focus on communication and training. All but one position has been filled, according to a BHDDH spokesman, Two have begun work, he added later.

Those new positions will cost $203,275 for the first full year, taking into account federal Medicaid reimbursements and savings from staff turnover in other positions, according to the governor’s original budget proposal.

The April 27 hearing serviced as an interim progress report as the state bears down on a court-ordered July 1 deadline to implement rate hikes and other administrative changes.

Antosh said he plans to write an evaluation of the state’s progress about mid-July. Judge McConnell said he will hold the next consent decree hearing about August 1. The exact date, later published by the court, is Tuesday, August 1 at 10 a.m, with public access available remotely.

The current developmental disabilities budget is $383.4 million, including nearly $352.9 million for the privately-run system and nearly $30.6 million for the state’-run group home network, which is not involved in the consent decree.

The governor’s revised budget for the current fiscal year would pare overall developmental disabilities spending to $377.3 million by June 30, including about $348.5 million for the private system and about $28.3 million for the state group homes, called Rhode Island Community Living and Supports (RICLAS.)

For Fiscal 2024, the total federal-state Medicaid funding would be $461.8 million for the private and state-run systems, according to the amended budget proposal. That total includes about $429.5 million for the private system and about $32.4 million for the state-run system.

Related content:

McKee’s original budget proposal is covered in an article here.

Pawlowski presented a PowerPoint on updated “rate and payments options” to the court that has been released by the state. Read it here.

Insurmountable Deadline?

By Gina Macris

An independent federal court monitor says there is “minimal likelihood” Rhode Island will achieve ultimate compliance with a long-running civil rights consent decree in 2024 unless all court-ordered changes to the developmental disabilities system are implemented by July 1 – three months from now.

The monitor, A. Anthony Antosh, submitted a status report on the case to Chief Judge John J. McConnell, Jr. of the U.S. District Court in advance of a public hearing April 27.

He said many changes are needed in the developmental disabilities system to increase employment and participation in community activities in keeping with the Integration Mandate of the Americans with Disabilities Act. In the end, these new experiences in the workplace and in the community will change lives, Antosh said.

A. Anthony Antosh

The state Director of the Division of Developmental Disabilities, Kevin Savage, expressed confidence in a recent virtual public forum that the state will meet the deadline for full compliance on June 30, 2024 but gave few details.

With less than 15 months remaining in the term of the consent decree, the monitor spelled out the ways the state is still in the “messy middle” of change, with few measurable results so far.

For example, in the year between October, 2021, and October, 2022, a total of 16 persons with developmental disabilities got jobs, bringing the total number of employment placements to 984 during the life of the consent decree, or 68 percent of the compliance target - 1456.

In addition, interviews conducted with 25 adults eligible for developmental disability services indicated that the consent decree, signed in 2014, has not yet impacted the lives of most people it is intended to protect. Only about 30 percent of those interviewed had a knowledge or understanding of the consent decree, Antosh said.

“This is not really surprising, given that BHDDH does not do direct communication with all individuals / families on a routine basis,” he said. Improving communication must become a priority, particularly in light of numerous changes that must be implemented during the next year.

Antosh said additional interviews will be conducted to monitor the effect of the consent decree on individuals receiving services. For the state to reach full compliance, at least two thirds those interviewed must report they have a “community-based life, achievement of personal goals, and satisfaction.”

The April 27 hearing will allow the court to clarify its position on details of implementation just before state budget talks shift into high gear in May for spending in the next fiscal year. The General Assembly is expected to consider hefty increases in funding and changes to the way developmental disabilities services are delivered in accordance with a rate review by an outside consultant.

“It should be noted that the State essentially agrees with all of the expectations and required actions,” Antosh said, but a lack of capacity has prevented it from moving faster to complete all the required changes.

A decade of chronic underfunding depressed the wages of caregivers and destabilized the developmental disabilities workforce until the state, pressured by the court, increased pay by about 40 percent in the past two years from an average of $13.18 per hour to $19.52. While a workforce recruitment initiative has shown some success in hiring and retention, the number of direct care workers has still not hit pre-pandemic levels, Antosh said.

The consultant for the rate review, the Burns & Associates Division of Health Management Associates (HMA-Burns), has recommended additional rate increases of about 22 percent, which would cost $57 million, according to projections made in January. Based on a court ordered minimum wage of $20 an hour for direct care workers planned for July, HMA-Burns has projected the average hourly pay will be $22.14 in the coming fiscal year.

But the system-wide changes necessary to comply with the consent decree involve a careful orchestration of many moving parts, including professional development and training. Antosh said the state must budget for training separately from the rate structure for direct care workers and others. In the rate review, HMA-Burns included time spent in training activities as part of a mathematical formula for determining hourly rates, but Antosh said that doesn’t cover the cost of the training that will be expected.

While state has been making mostly satisfactory progress in planning activities the last few months, the “ultimate criterion” will be the “quality of implementation,” the monitor said.

Antosh said BHDDH is in the process of hiring eight new staff members in the Division of Developmental Disabilities to help direct implementation efforts and also has received approval to hire a Spanish-speaking social worker. That change, which appears to carve out an exception to union seniority rules, responds to complaints from the Latino community that date back to the inception of the consent decree in 2014.

Some social workers already on staff will be re-assigned to high schools to help teenagers making the transition from special education to the adult service system, Antosh said.

The monitor laid out another major change he said is essential in ensuring that persons with developmental disabilities get individualized programs of services that help them lead regular lives in their communities.

Until now, the state has used a standardized assessment called the Supports Intensity Scale (SIS) for determining individual budgets from a menu of about 20 options, depending on a person’s degree ability to function independently – or lack of it. Programming has been fit into the budgets.

Antosh says planning for individualized services must come ahead of budgeting to ensure a “person-centered” approach in which the needs, preferences and goals of individuals drive the programming.

While the state has already agreed to make employment-related supports available to all by separating these services from core budget options, Antosh said the same must be done for community-based activities.

HMA-Burns recommends that all day programs, including center-based care and community activities, remain part of core budgets assigned by levels, or tiers of support determined through the SIS assessment. Transportation, overnight shared supports, and respite care also would be part of the core budgets, with individuals having the option of shifting funds between categories.

As an example of the trade-off, the rate review cited the hypothetical example of an individual who could choose to receive fewer hours of daytime services to get more transportation.

But the monitor said, in bold type for emphasis, that community-based activities “should NOT be subtracted from core individual budgets.”

“Development and expansion of community-based models for employment and community participation need to be a primary focus for 2023-2024,” he said.

Several factors related to the assessment and planning process will complicate the implementation of a “person-centered” approach:

• The state doesn’t yet have a budget for paying the independent facilitators or case managers

• A revised version of the SIS assessment to be used by facilitators was released by its developer only a month ago, in mid-March.

• The supplemental assessment questions are just now being rolled out in SIS interviews.

• Both the new SIS and the supplemental questions require a ramp-up period to be fully integrated into the assessment process.

In a workflow chart attached to the monitor’s report, the state indicated it plans to have all components in place by July 1.

The hearing will be streamed live before Chief Judge John J. McConnell, Jr. April 27 at 2 p.m. The Zoom meeting ID is 161 975 2551 and the Passcode is 651294. For a link to the court’s Zoom platform and an up-to-the-minute court calendar, click here

Find the latest Monitor’s report here

The monitor included attachments from the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, the Rhode Island Department of Education, which is responsible for transition services for high school students with developmental disabilities; and a multi-agency report on coordinating funding sources for employment supports.

In addition, The Executive Office of Health and Human Services submitted a report on a pilot program for “conflict-free case management”, which will use the independent facilitators the monitor mentioned, and is required by the is Centers for Medicare and Medicaid Services for all Medicaid and Medicare recipients, not just those with developmental disabilities.

The HMA-Burns Rate Review Summary

BHDDH Workplans

RIDE Transition Action Plan Status

RIDE Transition Work Plan

BHDDH Communications Plan

Multi-Source Funding For Employment Services

Multi-Source Funding Graphic

Conflict-Free Case Management

DOJ: RI Likely To Fail DD Compliance In 2024

By Gina Macris

At the current pace, the state of Rhode Island will not meet a 2024 deadline for complying with a 2014 consent decree intended to integrate adults with developmental disabilities in their communities, a U.S. Justice Department lawyer said Monday.

Amy Romero put the state on notice that it needs to step up its game if it is to meet the deadline on June 30, 2024.

She addressed state and federal officials at the conclusion of a two-hour remote access hearing Dec. 12 before Chief Judge John. J. McConnell, Jr of the U.S. District Court.

Over the last year, DOJ representatives have met with more than 60 people who receive services for adults with developmental disabilities and have found some of the same problems that existed when the consent decree was signed nearly a decade ago, said Romero, an Assistant U.S. Attorney in Rhode Island.

She said she is worried about gaps in the system and the plight of people who fall through the cracks, including:

• A lack of individualization or “person-centeredness” that enables individuals to take control over their own lives.

• A lack of transportation

• The people who once had integrated programs but are now in day centers

• Group home residents who can’t get out into the community because of a lack of staff.

• People who can’t get the services they need

• Self-directed family programs that rely on untrained parents as staff

• Families who lack the services and information they need in the transition from high school to adult programs.

Romero also said the DOJ was concerned about the slow and disjointed roll-out earlier in the year of:

• The Technology Fund, which makes smartphones and other devices available for adults with developmental disabilities

• The Transformation Fund, about $12 million to help private service providers and self-directed individuals and families launch innovative pilot programs promoting employment and community activities.

Romero said compliance with the consent decree must be a coordinated state-wide effort. The bureaucratic “process can’t get in the way of progress,” she said.

The court hearing delved deep into the details of numerous unresolved issues highlighted both by the DOJ and by an independent court monitor, who last month submitted a report to the judge with some 50 recommendations.

The monitor, A. Anthony Antosh, said only a third of those who are supposed to be protected by the consent decree are getting the same level of services as they did before the Covid-19 pandemic.

Judge McConnell made it clear at the start of the session that each one of the monitor’s recommendations has been incorporated into the court order he issued Dec. 6. (see related article.)

The order, with a series of deadlines for specific tasks, is intended to serve as a “guiding path for the next two years at a minimum,” he said.

McConnell’s choice of words left the door open to the possibility of federal oversight beyond 2024, although the hearing did not address what might happen if the state misses the deadline for compliance.

Antosh, meanwhile, said the primary purpose of Monday’s hearing was to “publicly put on the record what needs to be done” for the state to meet the standards of the consent decree and to discuss how to meet these deadlines for each task in the order.

It has been apparent to him for a long time that the state cannot comply without “major systemic change,” Antosh said.

He put the state on notice that the ultimate level of compliance will be assessed through independent interviews with recipients of services and their families on the impact the consent decree has had on them.

Much of the responsibility for compliance has fallen on Kevin Savage, Director of the Division of Developmental Disabilities at BHDDH. Romero said Savage and his staff cannot do all the work alone.

Among other things, McConnell’s latest court order directs the state to scale up the successful transformation pilots so they are available throughout the developmental disabilities system for the budget year that begins next July 1.

The order also said the state must approve funding for unique needs of consumers without making them go through the standard appeal process.

Neither a mechanism for bringing innovative programs to scale or a method for funding unique needs without the usual appeals process was spelled out in a rate review conducted earlier this year to help BHDDH plan its budget request to the governor.

Preliminary recommendations from the rate review are posted on the consultant’s website (here) but a final report has not yet been made to the court.

Antosh said he had wanted the rate review completed by Dec. 1, but more importantly, he wanted the budget information from the rate review ready to be incorporated into the governor’s proposal to the General Assembly in January and implemented in July, 2023.

Savage, the Director of Developmental Disabilities, said BHDDH has submitted the necessary budget information to the Governor’s office, and “I don’t think there will be any problem with implementation for July 1.”

The rate reviewers are “behind in responding to community comments,” he said.

Antosh had other questions about how the rate structure would support the consent decree, including ways it would simplify billing.

Savage said the new rate structure will include a group of core services, with employment supports and transportation funded as add-ons. There will be greater flexibility in moving funds around to fit individual needs, and he will work on “individualizing” budgets, Savage said.

Savage said he didn’t know how the rate review simplified billing. The new system will continue requiring providers to bill in 15-minute units for each client but would eliminate another wrinkle which until now has also required them to put in the approved staff-to-client ratio for each person in a particular setting.

Savage said eliminating the documentation of ratios was thought to be more important than changing the 15-minute billing unit. In the end, changes must be weighed against Medicaid funding rules, he said.

“Some things you just have to live with,” he said.

Antosh called for more specific information on ways the rate review would support the consent decree and how outcomes would be measured for individuals receiving services.

He also said adults with developmental disabilities will have conflict-free case management separate from the statewide plan now under consideration, at least in the short term.

The case-management model will follow recommendations of a court-ordered work group, Antosh said, without providing specifics.

The state promised a monthly written report to the court. McConnell also signaled he would hear progress updates in open court every other month.

Judge Tightens Reins On RI DD Consent Decree Compliance

By Gina Macris

It’s been eight years and eight months since Rhode Island signed an agreement with the U.S. Department of Justice to improve the lives of adults with developmental disabilities by ending their segregation in sheltered workshops and day care centers.

But with 16 months remaining for the state to fully comply with the consent decree, the state’s progress falls far short of the goals, according to the report of an independent court monitor made public Dec. 6.

On that day, U.S. District Court Chief Judge John J. McConnell, Jr. incorporated the monitor’s wide-ranging recommendations into an order outlining some 50 tasks to be completed before June 30, 2024, when the 2014 consent decree expires.

McConnell also scheduled a public hearing on the status of the consent decree for Monday, Dec. 12, at 2 p.m.

Parts of the order will require additional changes to a preliminary review of rates for developmental disability services that was made public in September.

The recommendations of the monitor, A. Anthony Antosh, provide a snapshot of the current system:

1. Forty-four percent of those who once toiled in sheltered workshops, and 33 percent of those who spent daytime hours in centers, have found jobs in the community since the consent decree was signed, far below expected levels.

2. About one third of adults – and more than half of young people moving from high school to adult services – do not participate in community activities. The consent decree promised a 40-hour week filled with work and activities that are purposeful to each of some 4000 persons eligible for services.

 Antosh recommended a way for the state to meet its targets: bring system-wide funding to existing pilot programs that have shown success in employment and integrated community activities – the fruits of some $12 million in “Transformation Grants” made during the past year.

Judge McConnell has given the state until next July to put that funding in place – and to figure out how to fit it into the rate review or find some other way to do it.

The monitor said that “individuals and families report uncertainty and lack of information” about the consent decree, the Employment First policy emphasizing competitive employment for those with disabilities, and community activities.

Families of young people moving from high school to adult services say they generally are “overwhelmed by the process and report not having sufficient information or support,” Antosh said.

The court ordered the state to put a streamlined application for adult services in place and to give every family a consistent point of contact to serve as a guide during the transition. These are two more of the 50 tasks the state must complete in 2023 or 2024 to comply with the consent decree.

Antosh put the state on notice that his final evaluation of the state’s compliance with the consent decree in will include an assessment of its impact on people’s lives. Positive impact will be measured by at least two thirds of a random sample of individuals reporting a “community-based life, achievement of personal goals, and satisfaction” during independent interviews, he said.

In the last few years, Judge McConnell has recognized that a key problem in the implementation of the consent decree has been a lack of front-line staff, who, until mid-2021, were paid an average of $13.18 an hour, too little to attract an adequate workforce.

The General Assembly increased wages from $15.75 to $18 an hour in July, and McConnell has ordered that rate to increase to $20 an hour by 2024.

In recent months, the state has stepped up its recruitment efforts, with 146 new hires reported in September by a recruitment consultant, Antosh said.

McConnell ordered those recruitment efforts to continue, with emphasis on helping individuals and families who direct their own services. The state’s figures indicate this group now makes up about a quarter of all those receiving developmental disability services.

Among other things, the state must explore the possibility of a mechanism to provide health benefits to for those who work on an hourly basis for individual families by July, 2023.

McConnell’s court order also signals that neither he nor Antosh are in agreement with some features of a recent rate review that would update the fee-for-service reimbursement system the state uses to pay private service providers who deliver the actual day-to-day supports to adults with developmental disabilities.

A spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said Dec. 1 that “changes have been made to the recommendations” since they were presented to the public in September on the basis of “public comments, including the Court Monitor’s and those from other stakeholders.”

“These final recommendations are now under review and will be made public after review,” the spokesman said.

The rate review recommendations as they now appear on the health policy webpage of the outside consultant, the Burns & Associates Division of Health Management Associates, (here) cover everything from assessment of need to the allocation of individual budgets and billing requirements, in addition to revisions to dozens of rates that would be used to continue a fee-for-service system called Project Sustainability, introduced in 2011.

The Burns & Associates recommendations would continue requiring service providers to bill in 15-minute units from an extensive menu of rates for services provided during the day, despite recommendations from a study group and the monitor that the detailed –and costly - paperwork should be eliminated.

Now, as part of McConnell’s action Dec. 6, the state has been ordered, in bold type for emphasis, to “simplify the billing process” through the rate review by July, 2023.

McConnell’s order also elevates several other recommendations Antosh has made touching on the rate review, directly or indirectly.

For example, the state has made it clear that it plans to continue using a standardized interview called the Supports Intensity Scale (SIS) to determine individual support needs, with the addition of supplemental questions to capture particular behavioral or medical issues.

Antosh noted that while the state may continue to use the SIS, the court has previously directed it to explore alternate assessment methods. “Now might be the time,” he wrote.

He also said there should be a funding mechanism that allows individuals and families to “identify unique needs and costs” that go beyond the results of any standardized interview and supplemental questions. Nor should Individuals have to file appeals to get the additional funding (as is now the case), he said.

Antosh discussed “person-centeredness,” how the bureaucracy should enable individuals, with the support of families and advocates, to become empowered to take charge of their own lives, setting short-term and long-term goals and realizing them through day-to-day supports.

A key to this empowerment is first making a service plan based on individual needs and then matching funding to that plan, with an independent case manager or facilitator guiding the process, Antosh said.

Currently, individual service plans are designed to fit into a funding formula that has about 20 options, based on an assessment of need. BHDDH, which determines both individual need and funding, has not indicated it wants to change the current approach, except to fund employment supports as an add-on to the basic budget.

On a statewide level, the Executive Office of Human Services has devised a draft plan for independent, or “conflict-free” case management for all Rhode Islanders receiving Home and Community Based Services (HCBS) funded by the federal-state Medicaid program, including adults with developmental disabilities.

The draft plan proposes a flat rate for all HCBS case management that is yet to be disclosed. It is not clear that the plan fits the monitor’s vision of conflict-free case management, but it will have to meet the requirements of the court and the consent decree as it applies to adults with developmental disabilities.

Public Access to Hearing, EOHHS Meetings

The remote-access public hearing on the consent decree begins at 2 p.m. Dec 12 before Judge McConnell. The meeting will be hosted on zoom.gov The Meeting ID is 160 1690998, and the Password is 488765. This information is also on the court’s public access page, here, along for instructions on dialing in to the audio only. Please note that due to an apparent typographical error, the date of the hearing on the public access page is incorrect.

Maenwhile, at 3 p.m. Monday, EOHHS will host the first of three public comment meetings on the draft plan for conflict-free case management. Advance registration is required for that session and two other meetings, Dec. 14, and 15, both also at 3 p.m. Registration links and other information about conflict-free case management can be found here

Read the Dec. 6 court order here.

Read the EOHHS draft plan on conflict-free case management here.

$2.5 M Unused For Lack of RI DD Jobs Program

CVS Trainee - File Photo

By Gina Macris

This article was updated Sept. 10.

A total of $2.5 million dedicated to helping adults with developmental disabilities find new jobs remains unused because the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH) hasn’t yet decided on a program for spending the money..

 A department spokesman has clarified an earlier statement about the amount of money lacking a spending program.

In addition, the Division of Developmental Disabilities (DDD) is still seeking a replacement for the chief employment administrator, who left May 1.

The lack of readily available BHDDH funding dedicated to expanding the number of job placements was disclosed by the Director of Developmental Disabilities at a virtual public forum in August.

The situation represents one factor threatening the promise of a 2014 federal court consent decree to change the lives of people who once spent their days in sheltered workshops or day centers cut off from the rest of the community.

A parallel issue at the top of the list of concerns of an independent monitor is a shortage of skilled workers who assist people with disabilities to find meaningful jobs and expand their activities in the wider community.

The workforce shortage has taken on heightened urgency since the monitor recommended last week that the U.S. District Court accelerate recruitment of workers and possibly impose multi-million dollar fines against the state for noncompliance of the consent decree. (See related article.)

Until a new DDD employment program is adopted, adults with developmental disabilities must either seek state-sponsored employment services funded outside BHDDH or reduce other types of BHDDH service hours to pay for help finding a job.

Limitations on employment supports built into the current developmental disabilities system are part of a comprehensive review now underway of reimbursement rates for private service providers and administrative barriers to integrated services,

The 2014 consent decree anticipated that by 2022 – eight years later – Rhode Island would be scaling up pilot programs of supported employment that would reach some 4,000 people.

But BHDDH has never scaled up. Its first pilot program emphasizing individualized employment supports began in 2016 and underwent several iterations until the final version, the “Person-Centered Employment Performance Program 3.0” ended June 30.

The DDD director announced in February that the program would not be renewed but did not explain the reasons.

At the same time, the director, Kevin Savage, hinted at frustration on the part of the chef administrator for employment services, Tracey Cunningham, saying that she would be “leading the charge” in designing a new supported employment program “if Tracey stays with us, and puts up with us longer.”

But Cunningham, Associate Director for Employment Services since 2016, announced her departure in early April. BHDDH has posted the position twice but has not yet found a replacement for Cunningham.

The BHDDH spokesman could not say why a new supported employment program has not yet been put in place but said the “the DD team is meeting with stakeholders to determine a spending and engagement plan.”

Job Placements Fall Short

In an August 29 report to Chief Judge John J. McConnell, Jr., the independent monitor, A. Anthony Antosh, documented the state’s limited capacity to serve adults with developmental disabilities.

For example, 23 of 31 agencies serving people with developmental disabilities said in a survey they had to turn away clients or stop taking referrals between July and December of 2021 because they did not have the staff to provide services,

By July, 2022, the state had found jobs for only 67 percent of the consumers that it had promised in the consent decree – 981 of 1,457. (The new-job totals span the entire term of the consent decree, whether or not a particular individual is currently working.)

Antosh said that job placement numbers have remained flat throughout 2021 and 2022, increasing by only 17 in a 12-month period.

In general, he described the developmental disabilities system as being in the “messy middle,” borrowing a phrase from Michael Smull, a developmental disabilities expert on system change.

Antosh said elements of the system desired in the future have been defined, and some individuals are beginning to see progress. But he said most still face the restrictions of the current system, “which needs to be funded and maintained while the future is being built.”

Funding will depend on the results of the ongoing program review that is now underway and how the recommendations will be received by the governor and the General Assembly.

Rate Review To Finish Nov. 1

Under court order, BHDDH moved forward with the comprehensive review, hiring Health Management Associates, the parent company of Burns and Associates, earlier this year. Burns and Associates helped the state a decade ago to implement the current system, which the DOJ found violated the Integration Mandate of the Americans With Disabilities Act. (Burns & Associates says the state did not implement its recommendations for that program.)

The DD director, Kevin Savage, said the review will be completed Nov. 1, a month earlier than expected. He told a public forum in August that he plans to schedule another public meeting shortly after the review is completed to gather feedback from the community before the BHDDH budget goes to the Governor, who must present a proposal to the General Assembly in January.

The review is expected to address not only funding issues but controversial administrative features that the monitor says are barriers to a community-based network of services, starting with the eligibility process.

For a decade, BHDDH has used the standardized Supports Intensity Scale (SIS), a lengthy interview process, to determine the intensity of a person’s disability and assign one of five funding levels for services.

Antosh has pushed back against the state’s stated intention to continue using the SIS, saying it needs yet comprehensive review. Despite the re-training of interviewers in 2016, families still report the SIS does not result in the funding necessary for needed services. And they have complained for years that they sometimes felt humiliated and emotionally drained by the SIS interviews.

The state has developed a supplemental questionnaire intended to improve the accuracy of the SIS, but Antosh said very few families report that they have seen it or understand its purpose.

The families of young people applying for adult services for the first time “continue to report being overwhelmed” by the process, which the state has promised to streamline. And families also generally don’t understand how to appeal a funding decision they believe is inadequate for the services their loved one needs, Antosh said. He recommended that intensive training of social caseworkers continue about communicating new policies to families.

Administrative Barriers To Integration

Antosh’s report also outlined the concerns of service providers about some features of the reimbursement rules, including:

• A requirement that they document the time each daytime worker spends with each client in 15-minute increments, a time-consuming and costly process.

• Another rule that dictates staffing ratios for different kinds of activities, which sometimes results in results in group activities in the community instead of individualized experiences.

Antosh reiterated recommendations of a workgroup on administrative barriers that said:

• The ratios should be replaced with reimbursement rates which allow workers to have 1,2, or 3 clients in their care

• Documentation of worker time should be done in three or four-hour units

Antosh said he expects the reviewers will reach conclusions that are similar to the workgroup. He made numerous other detailed recommendations in the 50-page report.

With the consent decree set to expire in 22 months, on June 30, 2024, Antosh said that all of his recommendations must be “fully implemented with urgency,” using boldface for emphasis.

All the state’s reforms eventually must be approved by the Court.

Read the monitor’s August 29 report here.

Read the monitor’s Sept. 1 addendum here.

RI Dodges Contempt With DD Action Plan

By Gina Macris

The Chief Judge of the U.S. District Court welcomed Rhode Island’s action plan to turn around the lives of adults with developmental disabilities, saying in a hearing Oct. 20 that the state has taken “historic and comprehensive” measures to set it on a path to comply with a 2014 civil rights consent decree.

Judge John J. McConnell, Jr. (left) approved the plan, which commits at $50 million in the next few years to stabilize and expand a skilled workforce and promises a structural overhaul of the way services are delivered and providers are paid, according to summaries provided by a lawyer for the state and an independent court monitor.

“This a major step in improving the lives” of adults with developmental disabilities, McConnell said in the hearing, which was streamed remotely via the Internet.

McConnell said that in his 30 years as a lawyer and ten years on the bench, he’s “never seen the state move as quickly, effectively and positively.”

“Make no mistake about it. Moving that mountain was a mammoth undertaking,” McConnell said.

“You have my thanks,” he said, singling out State Sen. Louis DiPalma, D-Middletown, and Kevin Savage, Director of the Division of Developmental Disabilities, for their roles in negotiating the action plan.

Without the action plan, the state could have faced fines of up to $1.5 million a month for contempt of court for continued violations of the consent decree.

The ultimate goal is the systemic restructuring of the system so that those with intellectual and developmental disabilities can live the lives they want in their communities, consistent with the Olmstead decision of the U.S. Supreme Court, McConnell said. The Olmstead decision re-affirmed the Integration Mandate of the Americans With Disabilities Act.

Making a real difference in the lives of those protected by the consent decree “will be another heavy lift,” the judge said. “That’s a long-winded way of saying, good job; there’s a lot of work ahead of you.”

Both the monitor, A. Anthony Antosh, and a lawyer for the U.S. Department of Justice (DOJ), said they will be watching very closely to measure the real-life impact of the action plan on life circumstances of individual service recipients.

Victoria Thomas, the DOJ lawyer, said she and her colleagues in the civil rights division are “cautiously optimistic” that the action plan will achieve the goals of the consent decree by the time it is set to expire in 2024.

“Recent comments indicate that there are many people in Rhode Island that are not getting what they need, want, or are entitled to get” under the law, Thomas said.

Those eligible for services say “they want to be working,” Thomas said.

Families who “rely on day services to function” are essentially trapped,” she said. “They can’t go to work and in some cases can’t leave their homes.”

To focus on the state’s progress, the DOJ and the monitor will review data every 90 days to determine what services eligible persons receive and their duration, Thomas said.

“Rhode Island businesses are eager to hire, and people with developmental disabilities are eager to work,” she said. “The action plan has multiple strategies to do that,” both on a short-term and long-term basis, Thomas said.

Antosh, the court monitor, said the action plan responds to a years-long drive to stabilize and expand the private provider workforce which the state relies on to bring it into compliance with the consent decree, and more recently, a series of court orders spelling out what that effort should look like.

The one that sent ripples through the State House said the state wages must hit $20 an hour by 2024. The action plan says the state will deliver on that pay hike, along with an interim raise, from $15.75 to $18 an hour effective July 1, 2022.

McConnell said “the court’s role is not to tell state what it should do or to run the agency,” a reference with the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.)

“The court’s role is to ensure compliance with the consent decree. The state, after many years, agreed it has systemically violated the rights of people with developmental disabilities All parties agreed the consent decree would be the vehicle to ensure (those) rights,” McConnell said.

Antosh, meanwhile, said the significant investment in funding higher wages will be accompanied by a shift in strategy for recruiting and retaining new staff to offset the fact that the traditional population interested in caregiving jobs is shrinking.

He said there will be a public-private partnership led by the Department of Labor and Training, the Community College of Rhode Island and other workforce and educational organizations. Together, they will re-define the roles of caregivers and creating targeted training programs, professional credentialling, and career ladders.

“A major strategy is to help people to achieve individual career goals,” Antosh said.

He explained other highlights of the action plan including an upcoming rate review, which he described as “the instrument” for changes that hopefully will create a better-functioning system.

Five consulting firms have bid for the job, and the state has committed to awarding the contract by November 1, with the work to be completed in a year’s time. It will include a reimbursement rate schedule that is indexed to the cost of living, Antosh said.

He said he will push to have a finished report sooner than that. The rate review, or portions of it, should be reflected in the next three budgets, he said.

In another change intended to stabilize financing, the state for the first time will include the developmental disabilities caseload in the semi-annual Caseload Estimating Conference, giving policy makers a realistic projection of developmental disability costs as a basis for budget preparations. The first such Caseload Estimating Conference will be later this month.

There will also be changes that will help increase individuals’ access to services by decreasing administrative burdens on providers. For example, the state plans to eliminate a requirement that staffers document their time individually in 15-minute increments for each person in their care, he said.

Another requirement on its way out is linking reimbursement to pre-determined staffing ratios based on each client’s general level of independence, or lack of it. These staffing ratios do not individualize needs, except for those with the most extreme disabilities, and do not take into account the amount of support necessary to carry out a particular task. Antosh said the complicated billing system will be replaced by two different rates.

The state has said the work on the administrative changes will be done by March 31.

Other innovations in the works will aim at increasing funding for transportation enabling the Rhode Island Public Transit Authority to become a Medicaid provider and by setting aside $2 million for the acquisition of technology for people with intellectual and developmental disabilities, Antosh said.

There are already specialized 400 apps available which aim at improving the quality of life for people with varying intellectual and developmental challenges, he said.

Kate Sherlock, the lawyer representing Antosh in recent negotiations, said the will to “get there” by restructuring the system “has been there all along, among consumers, their families, providers, and state officials, but change has been held back by a lack of funding.”

The action plan is a “significant step in the right direction,” she said. “We’ll be watching carefully to see what happens.”

To read the state’s action plan, click here.

To read the monitor’s memorandum on the action plan, click here.

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.

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.

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.

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

By Gina Macris

(This article has been updated.)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Read the documents filed by the state here.

RI Faces High Cost For Fixing DD ADA Violations

By Gina Macris

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

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

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

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

Judge John J. McConnell, Jr.

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

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

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

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

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

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

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

Monitor’s Calculations More Limited In Scope

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

A. Anthony Antosh

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

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

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

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

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

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

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

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

Monitor’s Numbers “Illustrate” Solutions

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

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

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

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

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

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

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

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

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

COVID-19 Exacerbates Inequities

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

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

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

The crisis has been nine years in the making.

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

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

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

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

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

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

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

Read the court monitor’s report here.

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

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

John J. McConnell , Jr.

By Gina Macris

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

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

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

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

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

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

McConnell said he saw “two levels of crisis:”

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

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

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

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

Cooperative Solution Preferred

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

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

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

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

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

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

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

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

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

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

Effects Of Pandemic “Unrelenting”

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

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

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

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

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

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

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

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

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

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

Spears Highlights Below-Market Funding

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

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

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

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

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

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

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

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

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

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

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

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

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

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

McConnell replied to Jones:

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

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

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

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

Court To Hear Plan To Shore Up RI DD Providers

By Gina Macris

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

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

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

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

• More people are sick

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

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

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

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

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

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

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

Source: A. Anthony Antosh, Court Monitor

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

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

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

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

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

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

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

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

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

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

By Gina Macris

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

A. Anthony Antosh

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

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

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

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

John J. McConnell, Jr.

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

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

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

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

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

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

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

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

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

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

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

Monitor’s Budget For Reform Coming “Soon”

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

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

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

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

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

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

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

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

Family Hesitation About Integration

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Other groups would address specific plans for:

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

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

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

• enhancing the use of technology as a support strategy

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

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

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

Photos by Anne Peters

Federal Judge Orders RI To Re-Invent DD System

By Gina Macris

Judge McConnell

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

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

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

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

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

A Personal Story

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

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

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

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

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

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

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

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

Four-Week Deadline

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

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

Providers On Shaky Footing

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

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

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

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

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

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

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

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

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

Spears’ letter also requested

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

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

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

State Agencies Report On Efforts

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

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

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

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

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

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

Judge Finalizes Order

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

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

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

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

• limits access to already-approved individual budgets

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

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

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

Hospitals Allegedly Violate RI DOH Visitation Policy For Patients With Disabilities

By Gina Macris

Family members of people with developmental disabilities reportedly are being barred from visiting hospitalized patients despite a revised Rhode Island state policy that allows essential support persons to help facilitate their care.

Both Disability Rights Rhode Island (DRRI) and the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) have received complaints that hospitals are preventing caregivers from seeing patients with disabilities.

DRRI is seeking additional feedback from the community on how the policy is being implemented when those with intellectual or developmental disabilities are hospitalized, by phone at 401-831-3150 or by email at contact@drri.org.

The alleged hospital policy violations come in the face of apparent improving health statistics, which indicate that no deaths of residents of group homes for adult s with developmental disabilities have been reported for nearly three weeks.

Still, families of persons with intellectual and developmental challenges have complained that hospitals are barring them from visiting loved ones, contrary to a Department of Health policy adopted in early May that says essential support persons can accompany patients with disabilities to facilitate communication, equal access to treatment and the provision of informed consent.

In one particular case, Kevin Savage, the Director of the Division of Developmental Disabilities, contacted hospital “risk management” officials, who agreed to help, according to a BHDDH spokesman. The spokesman said the situation still was still not resolved to the family’s satisfaction.

In addition, the BHDDH director, A. Kathryn Power, contacted Dr. Nicole Alexander-Scott, director of the Department of Health. She, in turn, “reached out to all hospital CEOs to reinforce the RIDOH guidance in order to reiterate the rights of people with I/DD,” according to the BHDDH spokesman.

DRRI’s counterpart in Connecticut, along with other statewide and national advocacy organizations, had tried since April to persuade that state’s public health officials to allow support persons to help hospitalized patients with disabilities, but ended up filing a formal discrimination complaint with the Office of Civil Rights of the U.S. Department of Health and Human Services on behalf of three patients in separate hospitals.

That complaint was settled with a change in Connecticut’s hospital visitation policy, announced by Disability Rights Connecticut on June 9.

In Rhode Island, a total of 158 people living in group homes for adults with developmental disabilities have tested positive for COVID-19. The total includes 10 persons who have died, with the most recent death reported June 2, according to BHDDH spokespersons.

On a related front, a federal judge is seeking guidance from an independent monitor on ways community-based integrated services should change in light of the coronavirus. Daytime services have all but stopped since the pandemic hit Rhode Island in March, and the state has not yet adopted a formal plan for them to resume on a large scale.

The U.S. District Court and the U.S. Department of Justice have jurisdiction over the state’s daytime services under a 2014 consent decree intended to correct Rhode Island’s segregation of adults with developmental disabilities, a violation of the Americans With Disabilities Act.

Chief Judge John J. McConnell, Jr. has recently ordered the independent court monitor in the case to prepare a report by the end of the month on how to approach community-based integrated services in light of the lingering health and safety concerns posed by COVID-19. 

The monitor, A. Anthony Antosh, is expected to submit the report by the end of June. McConnell has scheduled a court hearing on the consent decree July 30 at 2 p.m. The hearing will be accessible to the public by telephone and through the internet’s Zoom service.

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

By Gina Macris

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

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

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

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

In other news:

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

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