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.

"Transformative" Medicaid Funding Clears RI House Finance Committee

CPNRI Advocacy Day at the RI STate House 2024 - Photo Courtesy CPNRI

By Gina Macris

The House Finance Committee has recommended Rhode Island fully fund nearly $160 million in Medicaid rate hikes for a broad range of community social and human services – nearly tripling spending proposed by Governor Dan McKee.

The measure, believed to be the largest single-year Medicaid hike in Rhode Island, still needs formal approval by the full House and Senate as part of the next state budget.

But the fact that it cleared the powerful House Finance Committee May 31 signals that General Assembly leadership is prepared to turn aside McKee’s proposal to phase in the rate hikes over three years and slow down the pace of future rate reviews. McKee’s plan was not well received by the Senate Finance Committee in a hearing May 2.

The recommended reimbursement hikes, some totaling more than 50 percent, would apply to privately-run organizations that provide a wide swath of services, from early intervention for babies with disabilities, to treatment for substance use disorder for adults, to supports for the aging. Other services include treatment for autism and behavioral problems, juvenile justice, vocational, and rehabilitation services.

The rate hikes were recommended by the state’s Office of the Health Insurance Commissioner (OHIC), following legislation passed in 2022 that required the office to conduct a review of federal-state Medicaid reimbursement rates every other year.

The goal is to enable service providers in Rhode Island to pay their workers wages competitive to those in neighboring Massachusetts and other New England states.

McKee had put a total of $56 million in federal-state Medicaid funding into his budget proposal. But the House Finance Committee added $103.2 million, for a total of $159.2 million. The committee raised the state’s share from $22.1 million to $62.4 million.

The proposed Medicaid spending could serve as a sign of good faith in talks expected between the state and the Justice Department to resolve alleged civil rights violations of more than 500 children and adolescents, which the federal government said were “warehoused” at the state’s only pediatric psychiatric hospital between 2017 and 2022 for lack of community options.

The state Department of Children, Youth and Families has indicated a willingness to cooperate with the U.S. Attorney’s Office, which announced May 13 the results of a joint two-year investigation with Office of Civil Rights in the U.S. Department of Health and Human Services.

U.S. Attorney Zachary Cunha said the state had violated the Integration Mandate of the federal Americans With Disabilities Act by failing to provide services to children with behavioral health needs in the most integrated setting appropriate.

The House Finance Committee’s move to fully fund the OIHC recommended Medicaid payments won quick praise from a major organization representing service agencies.

The Community Provider Network of Rhode Island, which represents three dozen service providers for people with intellectual and developmental disabilities, said through a spokesperson that the committee’s proposal represents the largest single-year investment in Medicaid services in Rhode Island.

“This investment will have a transformative impact on people with disabilities, seniors, children, families and more,” the spokesman said, in urging the House and Senate to pass the measure as proposed.

Added Grace Duffy, CPNRI Policy Coordinator, “Fully funding rate reform is a significant step in making sure people with disabilities receive the support they need.”

She continued,”This investment is a pledge to build a state where everyone, regardless of ability, has the opportunity to thrive.”

The name of the Department of Children, Youth and Families was misstated in the original version of this article and has been corrected.

ACLU and DRRI Urge RI TO Shift Funding For Children's Mental Health

By Gina Macris

Disability Rights Rhode Island (DRRI) and the American Civil Liberties Union of Rhode Island (ACLU) made an urgent plea May 24 to the House leadership to shift its focus on residential treatment for acute children’s behavioral health issues to “robust funding” for comprehensive community-based services accessible at home and at school.

The letter to Joseph Sheckarchi, Speaker of the House; Majority Leader Christopher Blazejewski, and Finance Committee Chairman Marvin Abney, comes on the heels of federal findings that the state harms children in prolonged institutional care, - and in the midst of the General Assembly’s final negotiations on the upcoming state budget.

The timing gives the General Assembly an opportunity for “righting the current course and establishing a long-term solution for children rather than continuing on its apparent present course of spending tens of millions of dollars on residential treatment facilities,” wrote Morna Murray, executive director of DDRI; and Steve Brown, executive director of the ACLU.

They said the cost of residential settings is “astronomical” compared to the costs of serving children in the community.

According to the federal findings released last week, the state spent more than $13.6 million in Medicaid dollars on psychiatric hospitalization of children in state care between July 1, 2020 and June 30, 2021 and nearly $27 million for children’s residential treatment during the same period – some of it out of state.

In-state residential treatment can cost as much as $990 a day, while therapeutic foster care may cost $48 to $125 a day, U.S. Attorney Zachary Cunha said in a complaint alleging the state for years has violated the civil rights of children with behavioral health issues.

Meanwhile, the state budget proposal that would take effect in about five weeks – on July 1 - contains $11 million to expand the troubled St. Mary’s Home in North Providence, even though the state’s child welfare agency is pulling children out of that facility.

In addition, the state is planning to spend $45 million over the next three years to build an intensive residential treatment facility for girls in Exeter, on the site of the former Ladd School, which once housed people with intellectual and developmental disabilities.

Last week’s DOJ findings warned about the harmful effects of long-term hospitalization and institutional care on children. It serves as a “wake-up call” that the state “cannot build its way out of its obligations to care for vulnerable youth in the state,” said Brown in a statement.

“This long-standing issue harms the most vulnerable children and represents a violation of their legal rights,” said Murray in the same statement. “The time has come for the state to comprehensively correct this injustice,” she said.

Quoting the U.S. Attorney, Murray and Brown said in the letter that “it’s not an issue of not enough beds.”

Study after study has shown that children treated during long stays in hospitals and psychiatric residential facilities, like St. Mary’s Home for Children, experience physical and emotional abuse, over-medication, trauma and rehospitalization at higher rates, with their long-term success in life diminished, the letter said.

Brown and Murray asked the House leadership to take the DOJ findings to heart and to re-direct into the community the funding which put more children in residential treatment facilities “that cannot solve the problem.”

Companion bills sponsored by Sen. Louis DiPalma, chairman of the Senate Finance Committee, and Rep. Tina Spears, D-Charlestown, Westerly, South Kingstown and New Shoreham, would require the General Assembly to fully fund rate increases for a broad array of home and community services as recommended by the Office of the Health Commissioner (OHIC) every two years.

The governor’s budget would spread out existing OHIC recommendations over the next three years, with $22.1 million proposed for the next fiscal year.

Future rate reviews would be conducted once every four years for each of four categories for community services, according to a budget amendment the governor submitted to the General Assembly in April.

Developmental Disability News asked spokespersons for both the governor and the House leadership on May 23 – a day before the DRRI and ACLU letter - whether the DOJ complaint will affect budget talks about the OHIC-recommended increases for the next fiscal year, but there has been no immediate response from either.

May 23 was the deadline for the state to respond to the DOJ complaint, which alleged that the state violated the Integration Mandate of the Americans With Disabilities Act (ADA) by “warehousing” children with behavioral problems at Bradley Hospital, the state’s only children’s psychiatric hospital.

DCYF director Ashley Deckert wrote to Assistant U.S, Attorney Amy Romero May 22, saying “we look forward to working cooperatively with the U.S. Attorney’s Office and HHS (the Department of Health and Human Services) to address the findings.”

Deckert said she will call Romero “shortly to establish a framework for our collaboration going forward” to find a “mutually agreeable strategy to address what we believe are nationwide mental health staffing challenges.”

Bill Promoting Olmstead Plan Passes RI Senate

By Gina Macris

The Rhode Island Senate on May 21 passed a bill that would lead to an Olmstead plan for funding an array of community-based health and human services to prevent the unnecessary segregation of children and adults with disabilities.

The bill is moving through the General Assembly at a critical time, just a week after U.S. Attorney Zachary A. Cunha alleged the state has failed “miserably and repeatedly” to meet its legal obligations to provide appropriate services to children with mental health and developmental disabilities in their communities.

Instead, children and adolescents have been “warehoused” at the state’s only children’s psychiatric hospital, Bradley Hospital in East Providence, Cunha said, calling the state’s reliance on a single option an “appalling failure.”

The state must respond by tomorrow, May 23, to alleged violations of the Integration Mandate of the Americans with Disabilities Act (ADA), according to a spokesman for Cunha.

The Senate’s proposed Olmstead plan takes its name from a 1999 U.S. Supreme Court decision which reinforced the Integration Mandate of the ADA. The decision said the ADA requires public services for people with disabilities to be offered in the least restrictive environment that is therapeutically appropriate, and that environment is presumed to be the community.

Rhode Island is the only state in New England and one of seven in the nation that does not have an Olmstead plan, said Sen. Louis DiPalma, D-Middletown, in describing the bill on the floor of the Senate.

Last week’s allegations of civil rights violations serve as a prime example of the reason the state needs such a plan, said DiPalma, the chief sponsor of the legislation.

The bill, which has been sent to the House, would establish a 25-member commission to make annual recommendations for “integration for all” to the governor and the General Assembly, beginning on Jan. 15, 2025. The bill also requires the commission to do a comprehensive assessment of needs and accomplishments every five years.

More immediately, a spokeswoman for Governor Dan McKee has said the state will cooperate with the DOJ to resolve the brand new Olmstead civil rights allegations.

The findings, the result of a joint investigation of the U.S. Attorney’s Office and the Department of Health and Human Services, make two broad recommendations:

· The state must ensure that existing community-based services are available in sufficient quantity to prevent long and repeated hospitalizations at Bradley. These services include intensive in-home and community services, crisis services, and therapeutic foster care.

· The state Department of Children, Youth, and Families must make improvements in discharge planning to smooth the way for a prompt transition to the most integrated setting that is appropriate.

Rhode Island has a new law that could go a long way toward adequately funding community-based children’s services and satisfying the demands of the Olmstead complaint.

In 2022, the General Assembly enacted a requirement that all federal-state Medicaid reimbursement rates for struggling community-based social and human services undergo a review every two years by the Office of the Health Insurance Commissioner (OHIC).

The first OHIC rate review recommended hefty hikes which would have cost an estimated $90 million in state revenue in a single year, according to a spokeswoman for Governor McKee.

That does not include more than $50 million for health care providers outside the OHIC review and $29.1 million for Certified Community Behavioral Health Clinics, she said.

The governor has recommended implementing the recommended OHIC rates over three years, including $22.1 million that would represent the state’s share of the federal-state Medicaid match in the next fiscal year. He would also slow the pace of future rate reviews in each of four categories of services to once every four years.

But companion bills sponsored by DiPalma and Rep. Tina Spears, (D-Charlestown, South Kingstown, New Shoreham, and Westerly,) in the House would require the governor to use figures from OHIC rate recommendations in his budget. It would also require the twice-yearly caseload estimating conference to adopt the latest OHIC rate recommendations in advising the governor and the General Assembly on Medicaid costs for the next budget year.

In an email to supporters, Spears says those two bills “gained traction” after 100 advocates went to the State House May 14.

Grass roots advocacy for those relying on a broad array of community-based health and human services has been a hard slog for nearly 15 years.

In 2014, the state entered into an Olmstead consent decree with the DOJ to end the segregation of adults with developmental disabilities. It was not until 2021, when it faced the threat of heavy fines for alleged non-compliance, that the state began overhauling Medicaid rates to community service providers and changing its approach to services for adults with developmental disabilities.

Those changes are still underway, and federal oversight continues in the developmental disabilities case.

RI Senators Urge "Urgent Action" On Children's Mental Health And Behavioral Needs

Joshua Miller Sandra Cano Alana DiMario Louis DiPalma Valarie Lawson

Five RI State Senators respond to May 13 findings of the Department of Justice that the state has violated the civil rights of children and adolescents “warehoused” in a psychiatric hospital because it failed to appropriate therapeutic treatment in the community.

By Senators Sandra Cano, Alana DiMario, Louis DiPalma, Valarie Lawson and Joshua Miller

“We are not meeting our shared obligation to some of Rhode Island’s most vulnerable children,” we wrote in 2021, in an opinion piece intended to highlight the urgent need to improve our treatment programs for youth with behavioral health issues, and particularly girls. “This is an emergency. It is also an equity issue that needs to be addressed as soon as possible.”

It is extremely troubling that those same words are just as applicable today as they were when we first wrote them.

On May 13, US Attorney Zachary A. Cunha described an “appalling failure” of our state to appropriately meet the needs of children with behavioral health issues, particularly girls. He outlined a situation in which hundreds of Rhode Island children were hospitalized, usually at Bradley Hospital, for unnecessarily lengthy periods of time.

We are failing these children, and, frankly, it is unjustifiable.

So again today, we are calling for urgent action to address this situation. We need to work together – all of us, the Legislature, Governor McKee, the Department of Children Youth & Families (DCYF), the Department of Education (RIDE) – to address the systemic failures that have led to this situation.

Firstly, it is important to say how much we value and respect the work taking place at the DCYF and RIDE. We appreciate the difficulty of the jobs they do and their dedication to the children and families in our state.

Let us all work together, with increased urgency, to provide sustained investments in supportive services throughout the continuum of care, including at home and at school – and in those services between counseling and hospitalization – to ensure our children receive the supports they need in the most appropriate settings.

These issues have been – and continue to be – priorities for us in the Senate. We have advanced legislation and conducted several oversight hearings with DCYF and RIDE in our efforts to improve treatment and to ensure that children are receiving quality education regardless of their placement. To that end, it is absolutely imperative that RIDE ensure all children, including those placed at Bradley, have an educational plan in place.

In the Senate, we have prioritized – and in 2022 the General Assembly provided $57 million to fund – two residential treatment facilities, one for psychiatric treatment and one for behavioral health treatment. While it is important that these facilities are brought online as expeditiously as possible, this will not be enough to solve the problems we are facing, as Mr. Cunha noted.

The General Assembly also appropriated $22.9 million in wage stabilization funds to help DCYF recruit and retain qualified staff. However, these funds were temporary by nature. Another critical step is for the department to enter into new contracts that increase reimbursement rates to providers. These contracts are long overdue, and we hope and expect that they will be awarded soon.

Additionally, we expect that the Senate will again pass legislation (S-2705) requiring DCYF to conduct periodic comprehensive needs assessments to determine whether the department’s programs and services meet the needs of children and families in their care, assess client accessibility, and collect data to develop goals and measurable objectives for new and existing programs and services. This data is an important step as we work to strategically improve our systems of care.

Finally, we need an Olmstead Plan.

The Supreme Court ruled in Olmstead v. L.C. that states must make services available to individuals with disabilities in the most integrated setting possible. That decision was in 1999. While this administration – and prior administrations – have worked towards compliance, we remain the only state in New England, and one of just a few in the nation, that lacks a plan.

Therefore, the Senate is scheduled to consider legislation (S-2618) that would create, by statute, an Olmstead Planning Commission to develop this long-needed plan to better serve people vulnerable to unnecessary institutionalization.

Too often, we have made decisions based on short-term budgetary pressures, and that has led us to the insufficient services in place today. However once in place, better care, in more appropriate settings, will not just benefit the individuals being served; it is also more cost effective.

The extremely troubling findings by the US Attorney are a reminder that we can and we must prioritize sustained investments throughout our continuum of care to better serve Rhode Island’s most vulnerable children and families.

Senators Sandra Cano (D-Dist. 8, Pawtucket), Alana DiMario (D-Dist. 36, Narragansett, North Kingstown, New Shoreham), Louis DiPalma (D-Dist. 12, Middletown, Newport, Little Compton, Tiverton) and Joshua Miller (D-Dist. 28, Cranston, Providence) are all committee chairpersons in the Rhode Island Senate. Sen. Valarie Lawson (D-Dist.14, East Providence) is Senate Majority Whip.

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.

Judge Adds 2 Years to Oversight of RI DD Consent Decree

A. Anthony Antosh, Court Monitor, illustrates three stages leading to full implementation of consent decree, shown on right

By Gina Macris

A federal judge will retain jurisdiction over a civil rights consent decree until June 30, 2026 to ensure that a fully funded reorganized system of services has a positive impact on the lives of roughly 4,000 Rhode Island adults with intellectual and developmental disabilities (IDD).

The added oversight does not extend or revise the terms of the consent decree, signed in 2014, which requires that the state put into place all required components of an individualized, community-facing system of services for adults with IDD by June 30, 2024.

John J. McConnell Jr., Chief Judge of the U.S. District Court, labeled the additional two years of oversight an “addendum” to the consent decree in an Oct. 2 court order. He said that the oversight period will ensure that the funding, policies and a newadministrative framework required by the consent decree become firmly established.

In the court order, the judge also said that A. Anthony Antosh, an independent court monitor, will continue evaluating consent decree compliance until 2026.

At the same time, McConnell noted that he is stepping back from holding periodic public hearings on consent decree compliance but will be available should Antosh find reason for his intervention.

McConnell has been personally involved in overseeing the case since January, 2016.

More than two months ago, McConnell said that, despite the state’s “tremendous progress,” it was “abundantly clear that it will not be in compliance” on July 1, 2024, in terms of effecting positive changes in the lives of adults with IDD.

“Because we are able to recognize this a year in advance, the parties should get together with the monitor and negotiate an addendum to the consent decree to ensure substantial compliance at the quickest possible time,” McConnell said at a public hearing Aug. 1.

The monitor and lawyers for the state and the federal Department of Justice (DOJ) negotiated the addendum and met with McConnell privately a few days before the judge turned it into a court order.

A Decade Of Growing Pains

In 2014, Lincoln Chafee, then governor, signed a consent decree promising major changes for Rhode Island’s developmentally disabled population to settle a DOJ civil lawsuit alleging that the state’s segregated programs violated the Americans With Disabilities Act (ADA).

The state agreed to create a community-facing approach that put the needs of individuals at the center of thoughtful plans for employment and other services that enabled them to lead regular lives. The agreement is to expire June 30, 2024.

At the outset, the DOJ expected that a decade would be time enough for a new system of services to take hold and show results in the daily lives of the consent decree population. DOJ lawyers have testified that, in general, they want to see at least a year’s successful track record before they will sign off on an agreement like the consent decree.

  The first six years of the consent decree in Rhode Island were marked by piecemeal changes, the largest being the shutdown of sheltered workshops. But the funding and the bureaucracy underpinning a segregated system remained.

Then the COVID-19 pandemic halted progress and decimated the already underfunded and unstable workforce of the private agencies that the state relies on to provide IDD services.

The slowdown in reform became so serious that the DOJ asked McConnell in 2021 to find the state in contempt and to levy heavy fines. That request ignited a pledge by the state to take a number of steps, including a review of the rates it pays private providers and an overhaul of regulations to promote individualized, community-based services.

Reforms Accelerate

In his Oct. 2 court order, McConnell reviews, in meticulous detail, the state’s progress in achieving the goals of the consent decree and the myriad actions still to be taken if the state is to meet the June 30, 2024 deadline.

In the past year, the state, working with the community, has done intensive and laudatory work to plan the components of the needed infrastructure for a new system, Antosh wrote in a commentary that accompanied the court order.

 But the “majority of these plans have not yet been fully implemented,” he wrote, emphasizing the need for additional oversight in bold type. “The impact on outcomes and individual lives has just begun.”

Jobs: McConnell said the state has fulfilled Employment First policy requirements emphasizing competitive employment in the community and has met the number of job placements required in the consent decree.

The current budget provides for all those with IDD to get support in finding and keeping a job, as well as “discovery” activities and internships that help people with a limited variety of life experiences broaden their ideas about what kinds of work they might enjoy.

But not everyone can sign up today for those job-related supports. Making these services universally available is part of the implementation McConnell and Antosh said they want to see by next July 1.

The state, through legislative action, also has ended the sub-minimum wages that sheltered workshop employees and other adults with IDD were paid.

Not everybody in the IDD population wants a job. Those who want to opt out of job-seeking activities may do so through a “variance” process involving the monitor. About 100 people have taken advantage of it.

Assessing Needs: The state has created a new multi-step assessment designed to capture unique needs up front and provide funding accordingly. The old approach to assessment, based on a scripted questionnaire, assigned all 4000 persons with IDD into one of 20 funding categories that did not automatically provide for employment services.

Even though the needs of those with IDD remain relatively the same over a lifetime, individuals were sometimes recategorized into a lower funding level.

Other times, the assessment failed to capture medical or behavioral needs. In both cases, families and service providers were forced to file time-consuming appeals every year to secure and maintain added supports.

Critics said the assessment was being used to control the budget, not to serve persons with IDD. State officials have objected to those characterizations.

The new assessment keeps the original scripted interview, called the Supports Intensity Scale, adds a new questionnaire aimed at capturing supplemental needs, and finishes with an open-ended interview with individuals and families to ensure that nothing was missed in the first two sessions.

Not everyone has had the new assessment yet, but McConnell’s order says that the entire consent decree population must go through it by the end of June, 2024.

By that date, all members of the IDD population also must have access to an independent facilitator who will help them translate the assessment into an appropriate program of supports and services, McConnell said.

State Funding: Over the last three years, the state has spent total of about $120 million, more than half of it federal Medicaid dollars, to transform a system that incentivized the segregation of adults with developmental disabilities in sheltered workshops and day care centers.

 The $120 million total includes $75 million in the fiscal year that began July 1 to fund a new rate structure that promotes employment in the community and other integrated activities, according to Antosh.

Community Experience: McConnell said 80 percent of the adults with IDD participate in community activities, but the state needs to ensure that everyone eligible has regular experience in the community by the time the two-year oversight period concludes.

Transitioning to Adult Services: The consent decree also protects high school students with IDD aging out of school into adult services. McConnell and the monitor said the state has made progress in laying the groundwork for a seamless transition from high school to adulthood, but more needs to be done.

For example, transition plans more focused on jobs and careers must be implemented by June 30, 2024. The number of work internships for high school students must increase, and the state must show that by their 20th birthdays, 80 percent of youth with IDD have applied for adult services, with assistance.

Implementation Science Guides Monitor

 The process of societal change is slow, Antosh said, relying on implementation science to help put the consent decree in historical perspective.

Implementation science tracks the ways research translates into policies and practices in health and the social sciences and the long-term effect these changes have on the target population.

In a similar fashion, Antosh will be tracking the effect of the consent decree on Rhode Island’s IDD population, as shown in the graph above. It forms part of his commentary.

It took 25 years for the state to move from institutionalizing children and adults with IDD to a functioning community system in the early 2000s, as understanding grew that “individuals could have meaningful community lives and could be employed,” Antosh said.

In the first several years of the new century, Rhode Island gained a national reputation for having one of the best systems in the country.

“Then came several years of underfunding and decreasing services -a good system became significantly less so. This directly resulted in the Department of Justice investigation of Rhode Island and the Consent decree in 2014.” Antosh wrote.

Until the Rhode Island Consent decree was signed, the Integration Mandate of the Americans With Disabilities Act, reinforced by the 1999 Olmstead decision of the U.S. Supreme Court, was brought to bear in the courts to make the case that persons with disabilities are entitled to community-based living arrangements.

The consent decree was considered a landmark event because for the first time, it applied the Olmstead decision to what individuals with IDD did during their waking hours.

With Employment First at the heart of its mandate, the the consent decree assumes that all individuals can work and interact in the community, “not in groups, but as individuals who have preferences and can make choices,” Antosh said.

He said implementation science indicates that it takes 10 to 20 years to fully implement new practices and change expectations among the public.

But the consent decree is still in the “early stages” of implementation, making the need for additional oversight important in ensuring that new policies and practices take root and begin to have an impact on the community.

The monitor has made it clear that that successful implementation of the consent decree will depend on individuals with IDD reporting on positive changes in their own lives by the time the added two-year oversight period ends.

To read the entire court order, click here.

To read the monitor’s commentary, click here.

Conference Seeks Connections Between Business And Job-Seekers With Disabilities

By Gina Macris

A grass roots professional organization will bring Rhode Island businesses together with job seekers having  disabilities and employment specialists skilled at creating successful matches between the two at a conference in Warwick Sept. 28, just ahead of National Disability Employment Awareness Month in October.

“Creating Connections,” at the Radisson Airport Hotel on Post Road, will include a presentation by Feast and Fettle, the company which delivers freshly-prepared gourmet meals in Rhode Island and parts of Massachusetts, Connecticut, New Hampshire and Maine. Feast and Fettle was ranked one of Rhode island’s top workplaces by the Rhode Island Department of Labor and Training in 2022.

Amy Gonzalez

Amy Gonzalez, a former senior policy advisor at the U.S. Department of Labor, will give the keynote address. She has extensive experience at the state and national levels in improving employment outcomes for people with disabilities and is currently project manager for the federally-funded National Disability Employment Training and Technical Assistance Center.

Creating Connections is sponsored by the Rhode Island chapter of the Association of People Supporting Employment First (RIAPSE), an organization best known for promoting training and education among professionals helping adults with disabilities find meaningful work in the community.

But the organizers of the conference say they want to broaden their approach to show the benefits of an inclusive workplace, both to employers and job-seekers.

The conference will explore “how it is we can we address workforce development and economic development” in a common-sense way that meets the needs of employers while reducing turnover costs and promoting employee satisfaction, said Kiernan O’Donnell, who serves as Co-President of RI APSE with Kim Einloth.

Businesses that hire people with disabilities work with professionals like O’Donnell, who analyzes an employer’s particular needs and finds suitable candidates to clear bottlenecks in operations, with continuing support to both the employer and employee.

O’Donnell’s day job is Director of Day and Employment Services for the Fogarty Center, a private agency serving adults with developmental disabilities.

Einloth emphasized the broad, inclusive approach of the conference, saying it will feature a session on “wellness in the workplace.”

“Wellness in the workplace is a universal idea,” she said, adding that the organizers hope everyone can walk away from the conference with relevant information or ideas.

Einloth is Director of Human Services for the Town of New Shoreham and former Chief Operations Officer for Perspectives, a private agency serving adults with developmental disabilities.

In addition to wellness in the workplace, the conference will offer two other breakout sessions: one on navigating the effects that earnings could have on benefits for those with disabilities, and another on finding life satisfaction through work.

A closing panel discussion will include:

• Feast and Fettle’s Director of People Operations, Chris Smith, along with Jordan Andrews, a company employee

• State Rep. Tina Spears, D-Charlestown, South Kingstown, New Shoreham and Westerly, who is also executive director of the Community Provider Network of RI, a trade association of organizations serving adults with developmental disabilities

• Nina Pande, executive director of Skills for Rhode Island’s Future, a non-profit organization that aims to connect unemployed and underemployed Rhode Islanders with socially responsible, civic-minded employers, according to its website.

The moderator of the panel will be Jeannine Pavlak, executive director of neba (lower case), a non-profit organization in Massachusetts and Connecticut which helps people living with disabilities and other barriers to find fulfilling employment.

The conference will run from 12:30 to 4:30 and will be followed by an informal erehour-long networking opportunity. Registration has been extended to Monday, Sept. 25.

Conference fees are $35 for RI APSE members and $45 for non-APSE members, but O’Donnell encouraged those on tight budgets to apply for a scholarship at the end of the online registration process.

To register, click on the link: https://survey.alchemer.com/s3/7461935/RIAPSE

Judge Extends RI Consent Decree Deadline

By Gina Macris

Judge McConnell

Rhode Island will get more time to comply with a nine-year-old consent decree intended to help adults with developmental disabilities lead meaningful lives, a federal judge said Aug. 1.

Despite major progress, the state will miss the original deadline at the end of June next year.

The new deadline has not yet been set.

After hearing evidence for two hours on the status of compliance efforts, Chief Judge John J. McConnell, Jr. of the U.S. District Court ordered state officials to meet with an independent court monitor to negotiate an “addendum” to the consent decree.

The monitor and a Justice Department lawyer roundly praised the state’s recent $75 million investment in developmental disabilities reform as well as an overall strategy for improving employment and integration in the community for adults with developmental disabilities.

But they said actual implementation, measured by changes in people’s lives, falls far short of the progress needed to reach full compliance in 11 months’ time, by June 30, 2024.

McConnell said that while the state has made “tremendous progress,” it is also “abundantly clear that it will not be in compliance July 1.”

“Because we are able to recognize this year in advance, the parties should get together with the monitor and negotiate an addendum to the consent decree to ensure substantial compliance at the quickest possible time.”

“We could sit and wait until July 1, 2024, and see what happens, but that doesn’t seem most effective in improving people’s lives,” McConnell said.

He also said an addendum does not mean renegotiating the consent decree, which was signed in 2014 by the state and the Justice Department (DOJ). An addendum would define how to reach compliance on a “timetable that was not anticipated,” McConnell said.

He asked the monitor, A. Anthony Antosh, to draw up the initial draft addendum for the state’s review. The next court date has been set for Sept. 28 for a private conference involving Antosh and lawyers for the state and the Justice Department.

McConnell presided over a remote-access public hearing that put the state’s recent efforts in the context of the original ten-year timeline of the consent decree.

Antosh said that state’s efforts during the first six and a half years of the consent decree were “well-intentioned”, but the thinking was “too narrow.”

In addition to chronic underfunding of developmental disabilities services, the bureaucratic system in place made it difficult for providers to support employment opportunities and community activities for their clients.

It was only after state faced a possible contempt finding in court and the prospect of heavy fines in 2021 that it came up with a plan to overhaul the entire system – both the rates it pays for services and the way individuals receive those supports.

That so-called “rate review” was completed several months ago, and in June, the General Assembly put $75-million behind the planned reforms. The state filed 1,357 pages of notes with the court to document its progress.

“I commend the efforts of the state,” Antosh said, “but that said, had the efforts been made four or five years ago, we would be in a different place.”

Both he and a Justice Department lawyer, Nicole Kovite Zeitler, said interviews with those eligible for services and their families indicate they are still confused about what changes are coming and how they will be affected.

Antosh has made it clear that consumers’ perceptions about their quality of life will be a prime measure of compliance with the consent decree.

Many of the changes described in the recent overhaul of the developmental disabilities system exist, so far, only on paper, Zeitler said.

Antosh said he was particularly concerned about the vagueness of a core assessment process that is supposed to lead to individualized, flexible budgets for participants seeking jobs and community activities suited to their interests.

 The new assessment process, with independent facilitators to guide individuals in shaping service plans, has not yet begun to roll out.

Antosh covers the pluses and minuses of the state’s progress in a detailed 49-page report filed with the court about 90 minutes before the Aug. 1 hearing. Read it here.

 Zeitler, the DOJ lawyer, said “We are cautiously optimistic that all the plans will ultimately lead to compliance with consent decree.”

How long it will take remains an open question.

RI's New DD Services Begin Roll-Out

Anne LeClerc Explains New Assessment Process in Virtual Meeting Via Advocates In Action RI

By Gina Macris

After years of looking the other way, the Rhode Island General Assembly has funded comprehensive reform of the state’s developmental disabilities services.

What the new system will look like to the people that it will serve – individuals with disabilities, their families and agencies that provide services – has yet to be fully fleshed out. State officials are putting the final pieces together and explaining the changes to the developmental disabilities community.

But the overall outline of reform is clear, and the state has hired additional staff to communicate the changes and help with implementation.

As of July 1, state officials have been given the money to do the job: a $78.1 million reform package proposed by Gov. Dan McKee and approved by the General Assembly last month.

Services for adults living with intellectual and developmental challenges are funded through the federal-state Medicaid program, with the federal government supporting slightly more than half the cost.

In all, the Division of Developmental Disabilities (DDD) will receive $469.1 million during the current fiscal year, nearly $92.8 million more than the final allocation for the budget cycle that ended June 30. The DDD spending ceiling makes up nearly 70 percent of a total budget of $672.8 million for the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH.)

The new budget marks a watershed moment in the life of a federal court consent decree, signed in 2014 by then-Governor Lincoln Chafee and representatives of the federal Department Of Justice, which had filed suit to enforce the Integration Mandate of the Americans With Disabilities Act (ADA.)

A Capsule History

The agreement committed the state to improve the quality of life of adults who had been warehoused in sheltered workshops or day care centers., in violation of the ADA’s Integration Mandate. Except in rare cases, such settlements cannot be appealed.

But it has taken another nine years of dogged federal enforcement, as well as emerging advocacy at the State House, for state government to come up with the necessary funding and reorganize the bureaucracy to turn the system around.

For years, the state’s powerbrokers paid lip service to the consent decree, setting up pilot programs that were never expanded and adding pennies to the poverty wages of workers in private agencies that did the day-to-day work of implementation. Staff attrition grew to be the number one problem in providing services.

Then in 2021, Chief Judge John J. McConnell, Jr. of the U.S. District Court, started ratcheting up the pressure, issuing one order after another that dealt with caregiver wages and other issues.

Under threat of a contempt finding and hefty fines, the state produced a comprehensive action plan for consent decree compliance, which McConnell approved in October, 2021.

The Role of Advocacy

A former court monitor in the case, Charles Moseley, once said that judicial action can go only so far. Enduring change depends on the advocacy of the people.

While consent decree case dragged on before Judge McConnell, the developmental disabilities community shifted strategy at the State House, joining forces with dozens of other organizations to send the message that the chronically underfunded developmental disabilities system was just a microcosm of all Medicaid health and human service programs in the state.

For State Sen. Louis DiPalma, who became chairman of the Senate Finance Committee earlier this year, all the coalition’s voices shine the light on broad inequities in healthcare and human services.

A law enacted in 2022 with the leadership of DiPalma in the Senate and Deputy Majority Leader Julie Casimiro in the House has tasked the state’s health insurance commissioner with revising Medicaid reimbursement rates every two years. The first set of recommendations is due out in the fall and will be waiting for the General Assembly when it convenes again in January.

Beginning in 2016, when DiPalma pushed back against an impractical plan to pay for the consent decree by cutting group home costs, he has gained prominence as an advocate for adults with developmental disabilities.

From his earliest days as a legislator, he said, he has sought equity for everyday Rhode Islanders based on “facts and data.” DiPalma has served in the Senate since 2009.

The Power of the Court

Key facets of the latest funding for developmental disabilities can be traced back to specific court orders that McConnell has issued in the last two and a half years –as well as recommendations from an independent court monitor, A. Anthony Antosh, appointed by McConnell.

• An entry-level wage for direct care workers of $20 an hour, with an average rate of $22.14 an hour for more experienced caregivers. This pay bump, from a minimum of $18 an hour, costs $30.8 million, including $13.9 million in state funding, and the rest in federal Medicaid dollars. A court order issued Jan. 6, 2021 said the $20 rate must go into effect by Jan. 1, 2024.

• An additional $44.2 million from Medicaid, including $20 million from the state, to increase flexibility in providing community-based services available to adults with developmental disabilities. Until the monitor spoke up in a court session earlier this year, the state had planned to continue providing 40 percent of daytime services in day centers. The increased funding authorizes additional staffing for community-based activities anytime of the day seven days a week.

• $3.1 million, including $935,465 in state revenue, to reflect a last-minute projected cost increase for the developmental disabilities caseload calculated during the May Caseload Estimating Conference. (An earlier article citing $75 million in reforms did not take into account the results of the Caseload Estimating Conference.)

The Bureaucracy Matters

In the Caseload Estimating Conference, fiscal representatives of the House and Senate leadership and the governor convene with human services officials in public twice a year to do the math around the state’s public assistance obligations. There is a similar Revenue Estimating Conference.

The impetus for including developmental disabilities in caseload estimating came from one of Judge McConnell’s court orders.

Until developmental disabilities services were included in the Caseload Estimating Conference in November, 2021, budgeting for this segment of the population lacked transparency. Families and advocates approached each new session of the General Assembly with dread because of the uncertainty about sufficient funding.

Under the old system of service delivery, individual funding for adults with intellectual and developmental challenges – about 4,000 people - was made to fit into one of 20 boxes, and anyone who needed anything more had to file an arduous appeal.

Most of the appeals were granted, after service providers and families showed the individual really needed a particular service. But the added funding often lasted only for 12 months, and the appeal process began once again.

In the meantime, BHDDH officials were berated by lawmakers for constantly running budget deficits. At one point, BHDDH projected a $26 million deficit for the fiscal year ending June 30, 2018 because of extra individual funding granted on apppeal.

Changes Take Shape

During a recent interview, DiPalma, the Senate finance committee chairman, outlined additional features of the new state budget that will benefit all people with all kinds of disabilities:

• Increased access to the Rhode Island Public Transit Authority’s (RIPTA’s) paratransit program through $500,00 in vouchers for people who live outside the geographical catchment area for this service. DiPalma said a lack of transportation often keeps people from getting a job or engaging in community activities.

• Adoption of the Ticket-to-Work program, which removes limits on earnings of people receiving federal disability payments. This change is expected to boost enthusiasm among those who might fear losing benefits if they get a job.

In the new system, individuals will get the funding and services they need “up front,” said Anne LeClerc, Associate Director of Program Performance at DDD during a virtual public forum last month.

The state will supplement its standard assessment with a questionnaire to draw out any needs that might have been overlooked, instead of allocating a cookie-cutter funding level and waiting for an appeal.

The new approach will “make it better for everybody,” LeClerc said. “And every year, we’ll be doing an ongoing review to make sure that the funding is appropriate,” she said.

Appeals will still be an option, but officials believe the new approach will cut the numbers down significantly, she said.

In another big change, individuals will no longer have to give up any services to get employment-related supports. Instead, the reforms will make job supports available to all who want them.

State officials have insisted they will fully comply with the consent decree by the deadline next June 30, but even the rapid changes being made today probably will not be fast enough to meet the deadline.

LeClerc and others admitted it will take a year to phase in all the pieces of the new model with everyone eligible for services.

For example, LeClerc said the questionnaire intended to draw out any supplementary needs not captured in the basic assessment hasn’t been finalized yet. And the latest version of the assessment itself, revised by American Association on Intellectual and Developmental Disabilities during 2022, has not yet been put into use in Rhode Island.

While the interviewers have been trained in the new model, DDD officials indicated the revised assessment would not roll out until August at the earliest.

LeClerc said the state will need to collect the data from 500 assessments before it can devise a new funding formula.

The DOJ has said it requires at least a year’s smooth implementation of court-approved changes before it signs off on a consent decree.

A DOJ lawyer, Amy Romero, warned the state last December that it needed to bring a sense of urgency to its efforts to meet the deadline for full compliance, even as she praised officials’ stepped-up efforts in 2022.

Antosh, the independent court monitor in the case, is expected to file his assessment of the state’s latest efforts before the end of July.

DDD Expands Staff

To help with implementation of the consent decree, DDD has filled a year-long vacancy in the administrative position dedicated to employment-related support and made several other appointments. The budget sets aside $203,275 for eight new permanent positions dedicated to the consent decree.

Elvys Ruiz, who has more than 20 years’ experience in state service, was hired in May as Administrator for Business and Community Engagement. A native of the Dominican Republic, he is a former interim administrator of the Minority Business Enterprise Compliance Office at the Department of Administration and also has experience at the Department of Human Services and the Department of Transportation. Ruiz succeeds Tracey Cunningham, who left more than a year ago.

Six new DDD staffers also were introduced at the virtual public forum in June, including at least one who will be working directly with individuals and families who direct their own program of services, a segment that makes up one quarter of the caseload.

• Amethys Nieves was hired in May as Associate Administrator of Community Services to work on improving information and communication. She has degrees in psychology and social work and has experience and has experience in providing direct services and in development of healthcare programming.

• Johanna Mercado and Jackie Camilloni also have been hired as part of a communications team as coordinators of Community Planning and Development, with Camilloni focusing on individuals and families who direct their own services, a group that now makes up about 25 percent of the developmental disabilities caseload. Mercado is an academic librarian with degrees in political science and library science. Camilloni has 25 years’ experience at a privately-run organization serving adults and children with intellectual and developmental disabilities (I/DD). She also has worked as a state social worker at both the Department of Children, Youth and Families and DDD.

• Steven Seay is the new Coordinator of Integrated Community Services. He has worked in the human services for thirty years, with experience in developmental disabilities, nursing home social services, and adult protective services. Most recently, he worked in DDD’s Office of Quality Improvement.

• Kelly Peterson, a former DDD social worker and supervisor, has been hired as the new Chief of Training, Staff Development and Continuous Quality Improvement to oversee changes in professional practice required by the consent decree. She also has worked as a DCYF social worker.

• Peter Joly, who has worked in the mental health field for more than 20 years, has been hired as a Principal Community Development and Training Specialist. He also has experience providing services for adults with developmental disabilities.

• Cynthia Fusco, chief assistant to DDD director Kevin Savage, has been promoted to a new position as Interdepartmental Project Manager.

Next Steps

Judge McConnell has scheduled a public status hearing Tuesday, Aug. 1 at 10 a.m. The hearing will be accessible remotely. (He will meet with lawyers in chambers in late September, but that session is closed to the public.) To watch the August 1 hearing, go to the Court’s calendar page, enter the date of the hearing and select Judge McConnell’s name from the drop-down menu of judges. Click on “Go” to get to a link to instructions for public access to the hearing.

DDD, meanwhile, is holding in-person and virtual public meetings where officials have said they will add greater detail to the overview of the new system they outlined June 20.

A video recording of the June 20 public forum is on the Facebook page of Advocates In Action RI

Three informational sessions remain in July:

• Wednesday, July 19, 2023 5:00 PM to 6:30 PM, Rochambeau Library Community Room 708 Hope St, Providence

• Tuesday, July 25, 2023 1:00 PM to 2:30 PM, Warwick Public Library Large Meeting Room 600 Sandy Lane, Warwick

• Virtual public meeting Thursday, July 27, 2023 3:00 PM to 4:30 PM. Click here to register via Zoom.

Historic Investment in DD Passes RI House

By Gina Macris

UPDATE: The Rhode Island House of Representatives approved developmental disabilities reform as part of a $14-billion state budget on a 68-3 vote June 9, sending it to the Senate.

The Rhode Island House of Representatives is expected to vote Friday, June 9, on a whopping $75 million for the state to reorganize its services for adults with developmental disabilities to comply with a federal consent decree deadline in a year’s time.

Total spending for developmental disabilities would jump from about $377.3 million to $469.1 million, an increase of about $91.8 million in an overall budget of $619.6 million for the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. Developmental disabilities spending includes about $32.4 million for a state-run network of group homes, which is receiving an increase of about $3.1 million.

The reorganization includes a wage increase for frontline workers, from an average of $19 to an average of about $22 an hour, and expanded funding for more staffing to permit all daytime services to be offered in the community.

All adults receiving support from the Division of Developmental Disabilities — roughly 4,000 individuals — will be eligible for employment-related services in addition to other assistance included in basic individual budgets.

With several federal court orders in play, the House Finance Committee voted June 2 to send the massive investment in services for adults with developmental disabilities to the full House as part of an overall $14-billion state budget.

The new developmental disabilities system, which promotes the treatment of each participating adult as a unique individual, would replace an approach that incentivized group care in day centers and sheltered workshops and depressed the wages of caregivers for a decade.

In 2014, the state accepted a federal Department of Justice finding that its system for serving adults with development disabilities violated the Integration Mandate of the Americans With Disabilities Act. Rhode Island consented to overhaul that system within ten years, a transition requiring services to be individualized and made available in the community at large which, in almost all cases, is the least restrictive environment that is therapeutically appropriate.

But the state made only incremental changes until 2021, after Chief Judge John J. McConnell Jr. of the U.S. District Court found that a decade-long shortage of workers, exacerbated by the COVID-19 pandemic, was the single biggest barrier to implementation of the consent decree.

With average wages then hovering around $13.18 a year, McConnell issued an order in January, 2021, saying the state must raise the minimum wage for direct care workers to $20 an hour by 2024. But the needle did not move until the judge issued another order requiring the state to negotiate with private service providers and families operating their own programs to arrive at an interim pay increase in the forthcoming state budget.

The General Assembly raised the minimum wage to $15.75 an hour on July 1, 2021 and then to $18 an hour effective July 1, 2022. The budget up for the House vote tonight would raise the minimum wage to $20 an hour, the last step in complying with McConnell’s court order.

Other court orders resulted in a rate review of the entire developmental disabilities system and an initiative to attract new workers to better-paying and more career-oriented jobs in caregiving, among other things.

There appears to have been ongoing negotiations between the ,court and the state on the budget continuing as late as April, when Governor Dan McKee amended his original proposal and asked the General Assembly for more money to fund 100 percent community-based care instead of 60 percent. Until then, the plan was to continue offering 40 percent of services in group day care centers, an approach which is less staff-intensive than providing individual outings in the community.

Still to be answered is whether the state, through its private service providers, can translate the expanded funding into a smooth-running inclusive new system of services in time to meet the consent decree deadline of June 30, 2024.

The director of the trade organization for most private service providers has asked the public to urge their legislators to support funding not only for adults with developmental disabilities but also for vulnerable children.

The trade organization, the Community Provider Network of Rhode Island (CPNRI), is part of a coalition of organizations supporting an estimated 100,000 people eligible for various home and community-based services that have experienced the same labor shortages as the sector focused on adults with developmental disabilities.

Companion bills in the House and Senate would allocate $200 million of federal-state Medicaid funding to shore-up home and community-based services statewide during the coming year while the state’s health insurance commissioner completes a rate review similar to the one conducted for developmental disabilities. Those bills have not advanced.

The CPNRI director, Jenna Husted, applauded the “major investments in adults with disabilities and those that support them.”

“We are, however, concerned about the lack of investment in children with disabilities. Providers of children with disabilities are facing unique challenges and it is our responsibility to provide them the necessary support to thrive.

“We urge legislators to protect the major investment in adults with disabilities, and include investments for children with disabilities,” Husted said. “Together, we will become a more inclusive State.”

The House session is expected to begin at 2:30 p.m., according to the House Calendar.

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

Consent Decree Drives Proposed Hike In RI DD Spending

By Gina Macris

Rhode Island Governor Dan McKee would add more than $30 million to developmental disabilities spending to raise starting pay for direct care workers to $20 an hour, hike dozens of reimbursement rates to private service providers, and add ten new staff to help implement a 2014 consent decree.

The pay increase, costing $29.9 million in federal-state Medicaid funding, would be the third annual hike intended to help private agencies and the so-called “self-directed” population managing their own service programs. The wage increase would comply with a federal court order that dates back two years.

In 2021, when the starting wage for direct care workers was $13.18 an hour, Chief Judge John J. McConnell, Jr. ordered the state to raise wages to $20 an hour by 2024, calling a lack of staff the single biggest barrier to implementing the day-to-day requirements of the consent decree, albeit not the only one.

In 2022, with pay raised to $15.75 an hour, the Rhode Island system added 106 new direct care workers from January through June.

On July 1, 2022, the starting pay increased again to $18 an hour, and the state, prodded by the court, launched a workforce initiative to recruit candidates for direct care jobs. In September alone, the system filled 146 vacancies, according to data collected by an independent court monitor.

Yet there were still 693 vacancies in some three dozen private agencies and as many as 1,000 job openings among self-directed consumers and families, the monitor reported in early November.

overview of proposed DD spending - RI Department of Administration

In all, McKee seeks a total of nearly $417.4 million for all developmental disability services in the fiscal year beginning July 1, including slightly more than $385 million for the privately-run system, the backbone of consent decree compliance. That figure for private agency and self-directed services represents a bump of about $32.2 million over the current allocation of about $352.9 million.

A parallel network of state-run group homes would get $32.4 million in the next budget, or almost $1.8 million more than the current funding level of $30.8 million.

The budget for the next fiscal year, July 1,2023-June 30, 2024, will finance the state’s final push to comply with the consent decree before the deadline on June 30, 2024.

The state agreed in 2014 that by mid-2024, it would eliminate sheltered workshops paying sub-minimum wages and move away from isolated day care centers. Instead, there would be a de-centralized network of individualized services enabling adults with developmental disabilities to become integrated in their communities.

The Department of Justice (DOJ) has said that Rhode Island will likely miss the 2024 deadline if it moves at the current pace. The DOJ cited numerous factors contributing to a lack of services, particularly the individualized services in the community that are the cornerstone of the consent decree. A far-reaching federal court order issued Dec. 6 lists some 50 requirements that must be completed by the deadline on June 30, 2024.

McKee wants the new consent decree implementation staff on board as early as possible.

A spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said the department hopes to complete the hiring process by the fourth quarter, which runs from April through June. The cost for these added workers would be $203,275 for the first full year, taking into account federal Medicaid reimbursements and savings from staff turnover in other positions, according to McKee’s executive summary of the spending plan.

Eight of the ten positions will be permanently added to the Division of Developmental Disabilities (DDD), the BHDDH spokesman said.

The DDD jobs include:

• an “interdepartmental project manager”

• a “chief of staff for development training and continuous quality improvement”

• ·an “associate administrator for community services”

• five positions promoting community development as it relates to adults with developmental disabilities

The salaries will range from $66,162 to $95,552 a year, the BHDDH spokesman said.

Two other employees not attached to BHDDH will help implement an outside consultant’s recommendations for reimbursement rates for private providers.

Undertaking a rate review itself was part of a court order issued in October, 2021. Consultants disclosed preliminary recommendations last September that called for increases ranging from about 25 percent to 97 percent in dozens of reimbursement categories to private providers.

But McKee said in an executive summary of the budget that the consultant’s report is “currently under review and may further increase the recommended amount of financing” allocated to the private developmental disabilities system.

Among other actions, the Dec. 6 court order requires the state to identify successful pilot programs promoting integration that have been developed by private service providers during the past year and make those programs available to all those who want them, regardless of the way consultants have structured reimbursements to the private sector.

The consent decree has brought more transparency to budgeting by generating pressure on the General Assembly to include adults with developmental disabilities in the biannual caseload estimating conference, a public process used to project the state’s obligations for public assistance, like food stamps. Developmental disability costs were added in 2021.

The most recent caseload estimating conference, in November, projected there will be $8.5 million less in reimbursements to private service providers than budgeted for the current fiscal year because the population is expected to use fewer support services than initially budgeted.

McKee’s proposal takes the caseload estimating conference projections into account, as well as other related costs, in reducing developmental disabilities services by about $4.4 million, from about $352.9 million to about $348.5 million, in the current fiscal year.

The caseload estimating conference also highlighted the fact that consumers and families often must appeal individual budget allocations to get needed services – a feature of the current reimbursement system which the federal court has cited as a weakness.

Projections for the current fiscal year include $22.8 million in successful appeals, or $5.8 million more than budgeted. An independent court monitor has said consumers should not have to make lengthy appeals to get the individualized services to which they are entitled.

The consent decree draws its authority from the Supreme Court’s Olmstead decision, re-affirmed the Integration Mandate of the Americans With Disabilities Act, requiring public services for all persons with disabilities to help them lead regular lives in the their communities.

Developmental disabilities funding makes up about two thirds of the overall BHDDH budget, which is currently funded at about $597.1 million. McKee would raise the BHDDH total to about $619.6 million in the next fiscal year, with more than half the revenue coming from federal Medicaid reimbursements.

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.

Consultant Recommends Substantial Hikes To RI DD Rates; Public Comment Invited

By Gina Macris

The average pay of a direct care worker serving Rhode Islanders with developmental disabilities would jump almost four dollars to $22.14 an hour July 1 in a new rate structure recommended by a healthcare consultant to the state Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH).

The proposed rate structure would make Rhode Island’s direct care workers the highest paid of any developmental disabilities caregivers in 26 states, according to the consultant, the Burns & Associates division of Health Management Associates.

Photo HMA-Burns

Stephen Pawlowski, an HMA-Burns official, presented the preliminary recommendations in video meetings Sept. 28 and Sept. 29. HMA-Burns and BHDDDH will accept public comment until Oct. 24 before finalizing the recommendations.

In compliance with a federal court order, the state has agreed to pay direct care workers a minimum of $20 an hour by 2024. To follow the state fiscal year, which begins in July, the new rate would become effective six months earlier than the court deadline. The $20 minimum means the average hourly pay will be $22.14, Pawlowski said. (see graphic, above)

Preliminary recommendations of the HMA-Burns also include significant increases in many other rates as part of a continued fee-for-service reimbursement structure for private service providers that has been in place for more than a decade.

Service providers, consumers and their families, and even a legislative commission have called for alternatives to fee-for-service reimbursements during the last several years.

Three dozen private agencies form the backbone of Rhode Island’s developmental disabilities system. The state relies on them to meet the requirements of a 2014 civil rights agreement mandating a network of individualized community-based daytime services by June 30, 2024 in accordance with the Integration Mandate of the Americans With Disabilities Act (ADA).

DELAY IN PART OF RATE REVIEW

A federal judge set a Dec. 1 deadline for completion of the rate review, but Pawlowski said the portion that deals with individual assessments and individual budgeting cannot be finished until mid-2023.

In August, an independent court monitor said this portion of the rate review should be completed by Oct. 31, underlining his recommendation in bold type in a report to the court.

The process and timeline involving assessments, service plans and developing individual budgets is “one of the most critical aspects of the transition to high quality person-centered practice,“ but the way these elements connect with each other is ‘‘poorly understood,‘‘ said the monitor, A. Anthony Antosh.

‘‘Person-centered practice‘‘ refers to a professional approach that that puts a client’s needs and preferences first in keeping with with the consent decree and the ADA.

Antosh recommended the state do a “comprehensive review“ of its use of the current assessment tool, the Supports Intensity Scale (SIS), citing continued problems with inaccuracies in the results.

The state made it clear a year ago that it will continue using the SIS, but during the recent presentations, the HMA-Burns spokesman , Pawlowski, that the publisher is in the process of revising it.

The second edition of the SIS is expected in January, 2023, he said. It will be incorporated into the new rate structure by mid-year, he said. The graphic below lays out additional details.

REVENUE HIKE FOR PROVIDERS

Overall, the various rate increases would hike revenues for private service providers 20 to 25 percent above current levels, Pawlowski said.

Part of the increase in private agency revenues would come from funding employment-related services, more costly than other types of daytime supports, as a separate add-on allocation.

It remains unclear how much one-on-one time with a direct care worker an individual would get under the proposed new rate model. One-on-one staffing is considered important for community integration.

Pawlowski was asked whether someone choosing one-on-one staff time exclusively would use up their budget allocation faster than someone in a small group. The short answer is “yes,” he said.

Anne LeClerc, a BHDDH official, added quickly that “it depends” on a person’s need and funding level.

On an hourly basis, the rate for one-on-one supports in the community would increase from $37.88 to $65. Not everyone will have a budget big enough to pay for one-on -one staffing for an extended period of time.

One caveat is that one-on-one staffing will be available to all who seek competitive employment in the community, regardless of the size of their individual budgets, BHDDH spokesman said.

Final answers to questions about the availability of one-on-one staffing will be directly linked to the way the new SIS version defines individual need and the funding that results from that definition.

The new system also includes a range of reimbursement rates for group supports in the community involving no more than three people for each worker.

Center-based care will continue, with its own range of reimbursement rates. Centers would be used as gathering places in the morning to prepare for community activities and places for daytime meals and personal care, Pawlowski said.

15-MINUTE BILLING UNITS

During the presentations, Pawlowski said new rate structure will continue 15 minute billing units for daytime services, giving consumers the “flexibility” to “mix and match” their choice of services and service providers.

Private agency providers for years have complained that the administrative cost and time used to bill in 15-minute increments according to staffing ratios detracts from their ability to provide the services themselves.

In one of many court-ordered activities, a cross-section of state officials and community representatives has studied 15-minute billing and found it burdensome, recommending that the 15-minute unit be replaced with one or two rates for community staffing lasting three or four hours at a time.

Pawlowski said the new model would reduce the administrative burden by eliminating the requirement to account for staffing ratios within each 15-minute billing unit.

Reimbursement tables in the proposed rate structure assume there will be five levels of funding, as there are now.

The funding levels are largely based on a person’s perceived ability or inability to complete the tasks of daily living, with the “tiers” of funding running from A, the lowest funding, to E, the highest.

“SELF-DIRECTED” CONSUMERS

About a quarter of consumers receiving developmental disabilities services do not rely on private agencies but direct their own plans, mostly with help from their families.

They are responsible for hiring direct care staff, but a fiscal intermediary handles payroll and helps them stay on track with their budgets.

Going forward, Pawlowski said, fiscal intermediaries will be limited to payroll services.

Support activities will become part of case management - a service now under review for all health and human service departments governed by the Executive Office of Health and Human Services to ensure that Rhode Island complies with federal case management rules.

The removal of support services from the role of the fiscal intermediaries will result in a slight rate decrease, Pawlowski said.

But some fiscal intermediaries listening to the presentation online said the two functions can’t be easily separated.

RESIDENTIAL OPTIONS TO WIDEN

Reimbursement rates would increase substantially for residential services except for the largest group homes, with six or more residents, where the rate reviewers assumed an economy of scale, Pawlowski said.

A few of the largest group homes would see a slight decline in funding, he said.

Rates for shared living, which Pawlowski said have remained the same since the program started, will get substantial increases. Shared living providers host adults with developmental disabilities in their homes.

For the first time, there will be an enhanced reimbursement rate for hosts who also provide all the day services for the people in their homes.

Established provider agencies that now oversee individual shared living arrangements will be required to make monthly visits to each home, Pawlowski said.

There are two new categories of residential services:

• Supervised living, a shared service for those who don’t need 24-hour care and live near each other, like residents with separate apartments in the same building who are visited by the same “floating” staffer as needed.

• Room and board arrangements in which an individual with intellectual and developmental disabilities has a roommate who is not the homeowner.

The proposed reimbursement scale also provides for “remote services” in which a worker can check in electronically and follow-up with an in-person visit if needed.

Recordings of two presentations and a packet of information on the proposed rates and other related materials have been posted to the BHDDH website at https://bhddh.ri.gov/developmental-disabilities/initiatives/rate-and-payment-methodology-review-project/public-review

Written comment from the public will be accepted until Oct. 24 at bsmith@healthmanagement.com

Graphics by HMA-Burns

BHDDH Invites Public Comment On Rate Review

By Gina Macris

Beginning Sept. 28, the public will have a chance to comment on preliminary recommendations of a consultant’s long-awaited review of rates paid Rhode Island’s private providers of developmental disability services.

The court-ordered rate review is expected to address several barriers to the state’s compliance with a 2014 civil rights consent decree. The agreement requires the state to provide individualized services enabling adults with developmental disabilities to integrate with their communities in accordance with the Americans With Disabilities Act.

That goal means that, among other changes, the the state must offer more competitive rates to private service providers to enable them to greatly expand their direct care workforce.

The Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has announced that its consultant will present its initial recommendations in two online meetings Sept. 28 and 29. The public will have until Oct. 21 to submit comments.

The two online presentations will be facilitated by officials of the Burns & Associates Division of Health Management Associates, (HMA-Burns) the healthcare consultant BHDDH hired to conduct the review. The public may attend both sessions, but each one will have a different focus, with the first including technical details of interest to service providers and the second aimed at consumers, their families, and other interested persons.

A BHDDH spokesman said there will be no pre-registration or meeting passcodes for either of the two events, to be hosted on the Zoom platform.

The schedule:

• Session #1: Wednesday, September 28, 2022 12:30pm – 3:00pm

• Link: https://healthmanagement.zoom.us/j/92956195995?pwd=eGl4eXNoTGRMNDI 4bThoemR2TC9UUT09

• Session #2: Thursday, September 29, 2022 1:30pm – 3:30pm

• Link: https://healthmanagement.zoom.us/j/91070802990?pwd=VnM1Q0dDbUNKYl NDRDYxS3J5TitpUT09

After Sept. 29, the public will be able to view recordings of the meetings, access rate review materials, and find instructions for submitting comments on the BHDDH website at https://bhddh.ri.gov/developmental-disabilities/initiatives/rateand-payment-methodology-review-project.

The recommendations of the rate review will be finalized after the conclusion of the public comment period.

The rate review was timed to enable the state to use it in formulating the annual budget for the fiscal year beginning July 1, 2023.

$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 Faces Possible Fines For DD Noncompliance

Federal Building, Providence, RI

By Gina Macris

For a second time, the state of Rhode Island is facing multi-million dollar fines for non-compliance with a 2014 consent decree which seeks to enforce the rights of adults with developmental disabilities to live regular lives in their communities

The state was in the same position about this time last year, when the U.S. Department of Justice (DOJ) had asked Chief Judge John J. McConnell, Jr. of the U.S. District Court to find Rhode Island in contempt of court and impose penalties of up to $1.5 million a month.

Instead, the state produced a multi-faceted “action plan” approved by the Court last October to meet the requirements of the consent decree by the time its term expires on June 30, 2024.

But now, an independent court monitor says the state has not understood the urgency of the situation and has failed to meet the expectations of the court-ordered action plan, particularly in recruiting a sufficient number of direct care workers needed to implement a community-based system of services.

McConnell has scheduled a private conference with lawyers in the case for Oct. 11.

The monitor, A. Anthony Antosh, said a filing Sept. 1 that the judge will consider levying fines retroactive to Sept. 1 unless the state can convince him, in yet another plan, that it can step up recruitment to meet compliance deadlines. That three-page report amended a much lengthier analysis Antosh delivered earlier in the week.

As each month goes by, compliance becomes more difficult.

By July 1, 2023, ten months from now, the state must pull together an adequate workforce, sufficient funding, and new individualized community-oriented services system-wide to have a shot at full compliance by June 30, 2024, Antosh said.

The new system will have to be fully operational for at least a year before the DOJ agrees to end federal oversight, according to DOJ statements in past consent decree hearings.

With less than two years remaining in the decade-long term of the agreement, the state’s capacity to fully implement consent decree requirements “continues to be limited,” Antosh said in a report to the Court Aug. 29.

Antosh said the state has “failed to realize the urgency and scope of effort needed” to address a shortage of 1081 direct care workers – roughly a third of the workforce that would be necessary to implement a community-based system of services.

Antosh’s analysis focused on remedial steps Judge McConnell ordered in the state’s 2021 action plan to push the state along in reforming the disabilities system after it had failed to meet earlier goals.

In the plan, filed last Oct. 19, the state agreed to hire an outside consultant to “coordinate and implement an intensive statewide recruitment initiative” to expand the ranks of frontline caregivers.

Six months passed without progress in selecting a recruitment consultant, Antosh said. On May 3, Judge McConnell issued a court order spelling out a numerous recruitment-related activities that were to take place over the summer and deadlines for pulling in potential new-hires.

While the state has begun in recent weeks to implement several activities, Antosh said that as of mid-August, “the Court has not received a comprehensive plan that addresses all the required components” of the recruitment and retention initiative.

In the supplementary report filed Sept. 1, Antosh said he had spoken to more than 50 people involved in workforce recruitment and found consistent criticism about

• long delays in implementation of the plan

• a lack of clarity about its intent and outcomes

• a lack of connectivity between various activities involved in the overall plan

Antosh noted that the state, in its request for proposals to hire a consultant to speed the hiring process, did not require the successful bidder to supplement the recruitment efforts of the private service agencies or families who self-direct individual service programs.

The state’s $326,500 contract with the successful bidder, Sage Squirrel Consulting, specifies that it will “develop and establish statewide mechanisms for ongoing recruitment, onboarding, training and retention of Direct Support Professionals (DSPs)” for the system serving adults with intellectual and developmental disabilities.

Antosh, in his supplemental report Sept. 1, reiterated that the outside consultant hired by the state must become involved in recruitment and must coordinate with private service provider and families who seek workers for individually-designed service programs.

He spelled out detailed requirements of a revised recruitment plan which he expects the state to finalize by Oct. 7, four days before the lawyers in the case meet with the judge.

Provider agencies working on their own to close the gap of 1081 workers needed to implement the consent decree have made little recruitment progress on their own, Antosh concluded in his Aug. 29 report.

Between July and December, 2021, 32 agencies responding to a survey added a total of 131 people to their combined workforce. More recent figures are not yet available.

All together, the agencies still reported they had 618 vacancies, including 390 full-time positions and 228 part-time posts.

Of 350 front-line supervisors, 160 worked overtime to cover direct care shifts that otherwise would be unstaffed.

Antosh devoted attention to the staff woes of families who directed their own program of services for a loved one with developmental disabilities. Since 2017, their number has doubled, from 489 to 976. And this sector is expected to continue growing as more teenagers move into the adult service system in the future.

One factor in the growth of self-direction is that provider agencies are serving fewer numbers of people than they did before the COVID-19 pandemic. About two thirds of service providers licensed by the state reported turning away clients or declining referrals during the last half of 2021, according to Antosh’s report.

In two meetings, Antosh said, families “described their fear of imminent crisis if one or two of their primary staff depart.”

A total of 178 families responding to a survey reported having 416 support staff and 213 job openings, for a vacancy rate of almost 34 percent.

The families also had concerns about an inability to provide time for staff to participate in professional development and the lack of funding for medical or dental benefits – an important tool in recruiting and retaining workers. Without agency-level overhead, they are able to pay their workers an average of $19.94, or nearly $4 an hour more than the average starting pay at a licensed provider organization.