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.

BHDDH Seeks $18 Hourly Pay For RI DD Workers; $119M In DD ARPA Funding

By Gina Macris

Rhode Island’s developmental disabilities agency seeks to raise the pay of direct care workers to $18 an hour beginning July 1, 2022, a 14 percent hike over the current hourly rate of $15.75.

The raise would be covered by a $44.5 million increase in federal-state Medicaid funding for the privately operated developmental disability service system, according to a budget request submitted to Governor Dan McKee for Fiscal Year 2023 by the state Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH).

Within an overall agency budget of $585.9 million, representing a 12 percent increase, the Division of Developmental Disabilities would get nearly $380 million. That sum would cover both the privately-operated system of services and a state-run network of group homes. Private providers would get a total of about $352 million in federal-state Medicaid funding, about $44.5 million more than the current budget of $307.9 million. The budget for the state-run group homes would remain relatively flat, at about $28 million.

In an Oct. 1 budget letter to the governor, BHDDH Director Richard Charest wrote, “The Division of Developmental Disabilities (DDD) continues its commitment in complying with the terms of the 2014 federal consent decree and providing integrated employment and day services.”

On Oct. 1, BHDDH was facing the prospect of a contempt hearing in U.S. District Court that was to start today, Oct. 18, over continued failure to comply with the 2014 civil rights agreement. But at the same time, the department was negotiating with an independent court monitor to reach a settlement that would avoid hefty fines proposed by the U.S. Department of Justice. On Oct. 13, five days before the hearing was to start,Chief Judge John J. McConnell, Jr. canceled it without explanation. Any settlement has yet to be announced.

The pace of job placements required by the consent decree has slowed, from 78 percent of the target number spelled out in the agreement for January 1, 2019 to 67 percent of the target for January 1, 2021. A lack of services in general, and employment-related support in particular, has been attributed to an acute shortage of direct care workers.

For years, all sectors of the human services have been affected by a workforce shortage, which has been exacerbated by the COVID-19 pandemic. But only programs serving people with developmental disabilities operate with federal oversight in Rhode Island. Chief Judge John J. McConnell Jr. of the U.S. District Court has ordered Rhode Island to raise direct care worker wages to $20 an hour by 2024 to attract new staff.

In its budget request, BHDDH is also asking for a one-time investment of $119.3 million in federal coronavirus relief funds from the American Rescue Plan Act (ARPA) for the developmental disabilities system. That figure represents more than 10 percent of of the $1.13 billion in ARPA funding available to Rhode Island, the only state in New England which has not yet spent any of its allocation.

The $119.3 million total includes capital expenses of nearly $74.5 million for repair and construction of residential and therapeutic facilities and about $44.9 for operational and program changes over the next few years. All the money would be spent by the end of 2025. The proposal acknowledges chronic underfunding of the developmental disabilities system.

The investments are intended to shore up existing services and facilities to achieve a “more holistic, individualized, and community-based system of supports” to comply not only with the consent decree but with the separate Medicaid Home and Community Based Services (HCBS) Final Rule, which requires integration for all Medicaid and Medicare-funded services, including residential programs.

Both the consent decree and the HCBS Final Rule draw their authority from the Olmstead decision of the U.S. Supreme Court, which has ruled that people with disabilities have the right to receive services in the least restrictive environment that is therapeutically appropriate.

The portion of the ARPA request aimed at programmatic and operational changes assumes that there will be a shift from the current fee-for-service reimbursement method for private providers to a “value-based” reimbursement model, although that change has yet to be defined. BHDDH is expected to award a contract in the next two weeks for a consultant’s study to examine rates and methods of reimbursement. The successful bidder would have six months to complete the work.

Within the $44.9 million ARPA request for operations and programs, BHDDH is seeking:

• $25 million for supported employment services, including efforts to bring more services to “BIPOC communities,” a reference to Black and Indigenous peoples and other people of color.

• $17,350,000 to help private providers arrange more integrated housing options, staff training, assistance in tracking the providers’ own performance according to certain measures, and technologies for shifting from fee-for-service to “alternative based payment models.” This segment of the request assumes each of 34 service providers in Rhode Island will get $500,000. It also would pay for a contractor to manage the program.

• $1,150,000 for a community-based mental health intervention response team for people who have both intellectual or developmental disabilities and behavioral issues that put them at risk of hospitalization. Plans for the model program, called START (Systemic, Therapeutic, Assessment, Resource, Treatment) have already been developed. It has been identified as a best practice by the National Academy of Sciences Institute of Medicine.

• $1 million for information and education for service recipients for and their families to ensure better access to services, particularly for people of color, who have been underrepresented in the service caseload.

The $75 million in capital investments would include:

• $60,350,000 in repairs to state-owned provider facilities. Deferred maintenance in group homes “is a drain on state and provider resources (and) a barrier to individuals aging in place,” the proposal said. The condition of some facilities is “not conducive to making individuals feel safe and valued in their homes and part of the larger community,” it said.

• $8,130,000 to build facilities to house 30 young people with developmental disabilities who are making a transition to the adult service system. Currently, these youngsters, particularly those who also have emotional or behavioral issues, languish in facilities for children or in hospitals, creating a backlog in the youth system.

• $6 million for a 24-hour community residential program for people with developmental disabilities being discharged from a hospital or other institution who still need more specialized care than is offered by a regular group home. Such a program would ensure that services are provided in the least restrictive setting as required by HCBS, the proposal said.

Taken together, “these investments will lay the foundation for a DD system that focuses on supporting participants in a way that promotes community integration and development of personal networks and circles of supports,” the proposal said.

It will require a “major shift in thinking and business models” to move from “caretaking” and programs developed by providers to “a focus on what individualized supports people need to be as independent as possible.”

To read the entire BHDDH ARPA proposal for developmental disabilities, click here.

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• Reduce administrative burdens for providers

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

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

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

Vaccinations Accelerate For RI DD Group Homes

By Gina Macris

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

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

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

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

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

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